It's hard to believe that Evie is already a month old!
At 1 month old Evie weighs 11lbs 1.5oz. (Not sure on length as we can't really stretch her out while she is healing)
She eats 5-6 ounces every 3-4 hours. I pump every 2-3 hours to keep up my supply to keep up with my hungry girl. So far we have (probably) over 200 ounces frozen for our girl when she hits another growth spurt! She hasn't been on formula since she was 3 or 4 days old!
At night she sleeps anywhere from 4-6 hours at a time.
She is not a fussy baby. She fusses to get fed and then is pretty content until next feeding. Recently she has been restless, as I'm sure all of us would be if we were on our stomachs for a month straight!
Her hair is getting much lighter!
Big brother LOVES his sister. Gavin always runs straight to Evie when he comes home from school and says "buh-bye" when he leaves the room for any reason! He rubs her head, helps feed her and blows her kisses.
Evie smiles all the time. She likes to hum when she sleeps and makes faces at me all day long.
We still haven't been able to hold her yet. This makes my heart sad and my maternity leave seem like it's flying by. I only have 7 more weeks left and I will be spending every waking moment holding my girl once I can. Sorry family and friends - you will be alloted 5 minutes but then I get her back! (you think I'm kidding - wait and see!)
She is growing like a weed and as content as one could be. We are very blessed with a good little girl. Her back is looking wonderful and we hope another week or 2 and she will be able to be on her back. We are now sending updates to the plastic surgeon via e-mail with pictures so we don't have to keep packing her up.
(I have some super cute stickers for her but since she can't be on her back I haven't taken them yet. I plan on taking some improvised pictures as soon as I have help!)
God has truly blessed us with the most perfect little girl. We can't imagine our lives with any other daughter, she is perfect and perfect for us. Thank you sooo much for all of the prayers and kind words!
Monday, June 10, 2013
Our First Myleo Clinic
Wednesday, June 5th was our first appointment at the Myleo Clinic at Cardinal Glennon. (Myleo - short for myleomeningocele aka Spina Bifida). For those of you that don't understand the clinic atmosphere here is a short description. We have 1 appointment time and we see all of the doctors we need (all different specialties) at one time in one room.
Our appointment was at 1:30, we got called back to our room. On our way back we saw Rachel, Dr. Elbabaa's nurse (nueurosurgeon). She said hi and that she would be in in a few minutes. We got checked in by the nurse, she asked all the typical questions and then told we would be seeing a few doctors.
First up, Dr. Elbabaa. [before our clinic appointment, Evie had a follow up head ultrasound to get another look at her ventricles to determine if they are growing or not] Dr. Elbabaa was very pleased with her healing on her back. He told us he is very impressed with the amount of movement she has in her lower extremity. She is able to move everything all the way down to her feet which is unusual for a baby with a lesion where hers is (L4/L5). It all goes back to the fact that none of her nerves were dead when they went in for the repair. Yes, nerves were damaged but none dead. That means no total loss of function, things just might not be as strong as they should. Next, Dr. Elbabaa wanted to talk about the findings from the head ultrasound. Her ventricles have increased in size. Since the time of her spinal closure they have doubled which isn't good. Right now her head is soft (as all babies' heads are) which is allowing her head to expand and not endure any brain damage from the extra fluid on her brain. He said we need to place a shunt. This is exactly what we were hoping to avoid but I would rather not have her have brain damage, so shunt it is. Dr. Elbabaa wants to do another head ultrasound on July 2nd and he said if they have grown even the slightest bit we need to be prepared to be admitted that day and have the shunt placed the same day. The shunt is a small catheter that will be placed in her brain and go (under her skin) down to her stomach where the excess fluid will be absorbed. While it will completely solve the issue of the extra fluid on the brain, shunts do come with a gang load of other potential issues. There are issues of malfunction, revisions, infections and of course symptoms of all of these things are the exact same as the common cold - fever, not eating well, vomitting, lethargic - so this should be fun. I am trying to stay positive but I can't help but be worried since she will be undergoing another surgery - surgery in and of itself comes with its own set of risks. BUT GOD will provide and she will be watched after. Another bump - we can handle this!
Next, we met with the physical therapist. She too was over the moon excited about Evie's movement. Evie does these back bend things where her feet end up over the middle of her back (remember she is on her belly!) The therapist was able to witness all of Evie's crazy scooting antics and acrobats and said she has a great prognosis! Her strenght overall right now is a 3-4/5, I'll take it (5 is what non-SB people have). We talked about Evie's left foot which our PCP (primary care physician) brought to our attention. It is a little "tight". The therapist said Evie was on her way to getting a clubbed foot but since she was a little early we probably prevented any further damage. We have a little exercise we perform on her foot every time we change her diaper and we can already see a difference. Right now Evie's function is at the lesion level of S1 - this is AWESOME! That means she is performing at a higher level than her lesion, medically, says she should. They predict (with 75% assurance) she will be able to walk unassisted! TAKE THAT SPINA BIFIDA! While we will, of course, have to wait and see (the name of this game) that is providing us great hope and motivation!
We then met with Orthopedics. They couldn't do much. They wanted to check her hips for displasia but since Evie can't be on her back, they couldn't. Instead, we talked about what their department does. I loved how our doctor put it "we will take what your child can do and enhance it so they can function the best they can with the abilities they already have". I thought that was wonderful. He explained that sometimes he can get children walking, even with assistance, but as they grow older they become discouraged and choose to be wheelchair bound to keep up with their peers. He said it's all in the family and how the child is raised. If the child is raised only to know that they will have challenges but that we will overcome them and that just because something is more difficult doesn't mean it can't be done, then a child will have a much greater chance of continuing with walking rather than choosing a chair. We hope to instill these values in her at a very early age :)
We are waiting to meet with the Urologist she was out of town. Before Evie got discharged from NICU they did a renal ultrasound which showed her kidneys were enlarged so we need to talk about a plan to watch that. Pretty much kiddos with SB usually have bladder issues and the enlarged kidneys could be an indicator that Evie isn't able to fully empty her bladder and may need to be catheterized during the day to make sure she is getting empty to avoid UTI's and kidney infections.
Our next appointment will be July 2nd and we plan to have her shunt placed that same day. Please keep our sweet Evie Grace in your prayers!
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Our appointment was at 1:30, we got called back to our room. On our way back we saw Rachel, Dr. Elbabaa's nurse (nueurosurgeon). She said hi and that she would be in in a few minutes. We got checked in by the nurse, she asked all the typical questions and then told we would be seeing a few doctors.
First up, Dr. Elbabaa. [before our clinic appointment, Evie had a follow up head ultrasound to get another look at her ventricles to determine if they are growing or not] Dr. Elbabaa was very pleased with her healing on her back. He told us he is very impressed with the amount of movement she has in her lower extremity. She is able to move everything all the way down to her feet which is unusual for a baby with a lesion where hers is (L4/L5). It all goes back to the fact that none of her nerves were dead when they went in for the repair. Yes, nerves were damaged but none dead. That means no total loss of function, things just might not be as strong as they should. Next, Dr. Elbabaa wanted to talk about the findings from the head ultrasound. Her ventricles have increased in size. Since the time of her spinal closure they have doubled which isn't good. Right now her head is soft (as all babies' heads are) which is allowing her head to expand and not endure any brain damage from the extra fluid on her brain. He said we need to place a shunt. This is exactly what we were hoping to avoid but I would rather not have her have brain damage, so shunt it is. Dr. Elbabaa wants to do another head ultrasound on July 2nd and he said if they have grown even the slightest bit we need to be prepared to be admitted that day and have the shunt placed the same day. The shunt is a small catheter that will be placed in her brain and go (under her skin) down to her stomach where the excess fluid will be absorbed. While it will completely solve the issue of the extra fluid on the brain, shunts do come with a gang load of other potential issues. There are issues of malfunction, revisions, infections and of course symptoms of all of these things are the exact same as the common cold - fever, not eating well, vomitting, lethargic - so this should be fun. I am trying to stay positive but I can't help but be worried since she will be undergoing another surgery - surgery in and of itself comes with its own set of risks. BUT GOD will provide and she will be watched after. Another bump - we can handle this!
Next, we met with the physical therapist. She too was over the moon excited about Evie's movement. Evie does these back bend things where her feet end up over the middle of her back (remember she is on her belly!) The therapist was able to witness all of Evie's crazy scooting antics and acrobats and said she has a great prognosis! Her strenght overall right now is a 3-4/5, I'll take it (5 is what non-SB people have). We talked about Evie's left foot which our PCP (primary care physician) brought to our attention. It is a little "tight". The therapist said Evie was on her way to getting a clubbed foot but since she was a little early we probably prevented any further damage. We have a little exercise we perform on her foot every time we change her diaper and we can already see a difference. Right now Evie's function is at the lesion level of S1 - this is AWESOME! That means she is performing at a higher level than her lesion, medically, says she should. They predict (with 75% assurance) she will be able to walk unassisted! TAKE THAT SPINA BIFIDA! While we will, of course, have to wait and see (the name of this game) that is providing us great hope and motivation!
We then met with Orthopedics. They couldn't do much. They wanted to check her hips for displasia but since Evie can't be on her back, they couldn't. Instead, we talked about what their department does. I loved how our doctor put it "we will take what your child can do and enhance it so they can function the best they can with the abilities they already have". I thought that was wonderful. He explained that sometimes he can get children walking, even with assistance, but as they grow older they become discouraged and choose to be wheelchair bound to keep up with their peers. He said it's all in the family and how the child is raised. If the child is raised only to know that they will have challenges but that we will overcome them and that just because something is more difficult doesn't mean it can't be done, then a child will have a much greater chance of continuing with walking rather than choosing a chair. We hope to instill these values in her at a very early age :)
We are waiting to meet with the Urologist she was out of town. Before Evie got discharged from NICU they did a renal ultrasound which showed her kidneys were enlarged so we need to talk about a plan to watch that. Pretty much kiddos with SB usually have bladder issues and the enlarged kidneys could be an indicator that Evie isn't able to fully empty her bladder and may need to be catheterized during the day to make sure she is getting empty to avoid UTI's and kidney infections.
Our next appointment will be July 2nd and we plan to have her shunt placed that same day. Please keep our sweet Evie Grace in your prayers!
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Evie on the exam table at clinic. Since we can't dress her, we have to have headbands and bows galore :)
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Taking a snooze while we wait!
Home Sweet Home
Overall, being home has been WAY easier than being in the NICU and home. It has its difficulties though. With Evie only being able to be on her tummy still we are not able to hold her so when chasing after Gavin it is difficult to have her in her bassinet or pack n play and us somewhere else.
We have made do with the help of family stopping by the help out with the kids and the constant help of my parents. It will be much easier once we can hold our sweet girl and once we are in a permanent place where we are all on one level instead of being so spread out.
We have a home health nurse that comes once a week to check on Evie's incision and to make sure she is gaining weight, we love her!
We have had the First Steps coordinator come over to get our information and request the appropriate therapists come over to assess Evie. We are looking forward to that.
The Friday before Memorial Weekend we had a pretty big scare. Evie managed to pop about 5-6 stitches on her back where she wiggles a lot. It happens to also be the spot which is healing the slowest. With the holiday weekend looming we were worried her back would get worse over the weekend and wouldn't have access to our specialists (the ones that actually operated on her) so we called the nuerosurgeon. He asked that we come in to the Cardinal Glennon ER. So, we packed up Evie and took the 45 minute trip to the hospital. We get in to a room and they call our neurosurgeon's nurse to come and take a look at her. They were worried spinal fluid might be leaking which would mean part of her actual spinal repair would be damaged. They took a look, decided what we were seeing was tissue trying to form and said to keep an eye on the incision but that we really needed to talk to the plastic surgeon to make sure they didn't want to stitch up the opening. The opening was so big that it was 5mm wide and you could see the next layer of stitches under the skin. We had to wait for almost 4 hours for the plastic surgeon. When she finally got there she said she wished it would have held up better but that it still looked great. We were to continue with our current plan and as long as the spot didn't get any bigger we should be good to go. What a relief, but what a long day!
We have had many visitors to the house and are so thankful for everyone that has cooked for us, it makes my life much easier and my heart is warm knowing my family is getting a home cooked meal instead of some frozen thing!
We have been doing well and Evie is looking good. So far our Chapter 3 is going great with a few bumps in the road, but hey, who would want a bump-less story? Wouldn't that be boring??
Thanks for the continued prayers!
We have made do with the help of family stopping by the help out with the kids and the constant help of my parents. It will be much easier once we can hold our sweet girl and once we are in a permanent place where we are all on one level instead of being so spread out.
We have a home health nurse that comes once a week to check on Evie's incision and to make sure she is gaining weight, we love her!
We have had the First Steps coordinator come over to get our information and request the appropriate therapists come over to assess Evie. We are looking forward to that.
The Friday before Memorial Weekend we had a pretty big scare. Evie managed to pop about 5-6 stitches on her back where she wiggles a lot. It happens to also be the spot which is healing the slowest. With the holiday weekend looming we were worried her back would get worse over the weekend and wouldn't have access to our specialists (the ones that actually operated on her) so we called the nuerosurgeon. He asked that we come in to the Cardinal Glennon ER. So, we packed up Evie and took the 45 minute trip to the hospital. We get in to a room and they call our neurosurgeon's nurse to come and take a look at her. They were worried spinal fluid might be leaking which would mean part of her actual spinal repair would be damaged. They took a look, decided what we were seeing was tissue trying to form and said to keep an eye on the incision but that we really needed to talk to the plastic surgeon to make sure they didn't want to stitch up the opening. The opening was so big that it was 5mm wide and you could see the next layer of stitches under the skin. We had to wait for almost 4 hours for the plastic surgeon. When she finally got there she said she wished it would have held up better but that it still looked great. We were to continue with our current plan and as long as the spot didn't get any bigger we should be good to go. What a relief, but what a long day!
We have had many visitors to the house and are so thankful for everyone that has cooked for us, it makes my life much easier and my heart is warm knowing my family is getting a home cooked meal instead of some frozen thing!
We have been doing well and Evie is looking good. So far our Chapter 3 is going great with a few bumps in the road, but hey, who would want a bump-less story? Wouldn't that be boring??
Thanks for the continued prayers!
Discharged!
It was a long road but Evie was discharged from the Cardinal Glennon NICU on May 17, 2013. 10 days was enough for us!
The week she was discharged we got the most awesome nurse 3 times! Her name is Lindsey and we owe everything to her for getting us the help we needed to get out of that place! On Monday was the first time we had her. She walked in and was a tiny little thing with long blonde hair. She had a big smile on her face and said "Hi, I'm Lindsey, I'm your nurse today!". She was so upbeat, I knew I liked her already. She checked on us often and always made sure I had everything I needed. She was so gently with Evie and made sure we knew everything we needed to know. She answered all of our questions without being annoyed, it was quite refreshing.
On Tuesday, we got Lindsey again! I was so excited when I walked in and saw her in Evie's room!!! By the afternoon on Tuesday Lindsey asked me what the plan was. I was confused, afterall, she was the nurse, you tell me the plan! She said, well, when are you getting discharged? With a heavy heart I told her in 2 more weeks. She was stunned and confused. [Monday evening the plastic surgeon resident stopped by and said that Evie needed to be on her tummy for 2 more weeks. I was completely heartbroken. 2 more weeks trying to keep my family together in 2 different places. Feeling helpless because I can't care for my newborn and heartbroken that I wasn't there for my little man at home. I was going through the motions of life, completely exhausted in every sense of the word.] Lindsey said there was no need for Evie to be there that much longer and that our neurosurgeon and plastic surgeon needed to talk to figure out a plan. Communication between those 2 departments had been impossible from the beginning. Neurosurgery would say she could be on her side the same day plastic surgery said 2 more weeks on her tummy. Nuerosurgery would say we could go home, plastic surgery would say 2 more weeks. We were so confused, had no clue what was going on and didn't know what to do. Didn't know if that was normal, we just didn't know. Lindsey assured us she would take care of it. Within hours she had neurosurgery and plastic surgery nurses coordinating their visits to our room. It was decided (after speaking to the actual doctors not the residents or nurses) that Evie could maintain her care by us at home and continue to be on her tummy at home! ALAS! An answer.
Lindsey didn't work on Wednesday or Thursday but she would be back Friday. Wednesday we got a nurse that I absolutely disliked and Thursday we got our second favorite nurse, Holly. Holly is a totally calm spirit that is on top of everything. She knows her stuff, is stern when she needs to be and overall just aweomse! She told the attending pediatrician that there was no reason we couldn't maintain the same level of care at home because we did everything every single day in NICU. She told them we were perfect to go home as long as we could get a heart monitor for Evie since she would have to be on her tummy (SIDS is obviously a huge risk with a baby on their tummy).
So Thursday morning we got the go ahead to start the discharge process. Holly said that we would most likely not get discharged until Friday between noon and 3. Holly coordinated so much for us on Thursday. Evie got her hearing test, Joe and I watched 4 videos, got trained in infant CPR, filled out paperwork for First Steps (such an awesome program!), got Evie her immunizations, called the medical supply place to get them over so we could get Evie fitted for her heart monitor and Joe and I trained on the monitor. She did all of this while discharging another patient across the hall and caring for (who we dubbed) "the crabby baby" -- you could hear him crying all the way down the hall! We were so thankful. If we didn't have her on Thursday (and got the same lazy nurse we had on Wednesday) we would have never gotten out of there!
We left early on Thursday evening (I trusted Holly to lay down the law with Evie's care to the night nurse - I usually stayed until the night nurse came in and I could meet her and decide whether or not I needed to stay the night) and took Gavin to Chuck E. Cheese to celebrate his sister coming home and to have one last fun night out before his life was really turned upside down. He had a blast and so did we. We got an ok amount of sleep and got up early Friday morning, dressed all cute and went up to the hospital to get our girl.
[Thursday before we left we asked Holly if she could request somewhere that we got Lindsey on Friday because we knew she was working]
Joe and I walked in Friday morning and saw Lindsey in Evie's room. We were elated. I walked in and exclaimed how excited I was to see her. Lindsey said on her way in to work she called in to request room 1845 - Evie's room - to find out we had already requested her. She loved us as much as we loved her :)
We didn't do much on Friday, just waited to get all the final paperwork from everyone and get us our discharge instructions. When it came time for discharge I suddenly became overwhelmed with emotions. Was I going to be able to provide the same care at home? What if something happened? I was sad to leave Lindsey, she was so wonderful. But nonetheless, we were discharged! Lindsey helped us get Evie safe and sound in her carseat and walked us out. She waited with me while Joe pulled the truck around (we took my dad's truck because it is the biggest vehicle we could get out hands on which would provide the most safety in case of any stupid people). We talked a little, I could barely look at her because I was seriously so sad to leave her. She loaded us up, said good-bye to Evie, I hugged her and cried, she cried, Joe hugged her, and we were off. The ice cream truck was there and Lindsey headed over to get a treat and waved as we drove by. This was it, we were on our own.
Our third chapter was starting - our journey at home!
Lindsey filling out the last of Evie's paperwork and getting us our discharge instructions. Me feeding Evie a bottle to tide her over until we got home!
Ready to go home!
Our empty room as we left.
The week she was discharged we got the most awesome nurse 3 times! Her name is Lindsey and we owe everything to her for getting us the help we needed to get out of that place! On Monday was the first time we had her. She walked in and was a tiny little thing with long blonde hair. She had a big smile on her face and said "Hi, I'm Lindsey, I'm your nurse today!". She was so upbeat, I knew I liked her already. She checked on us often and always made sure I had everything I needed. She was so gently with Evie and made sure we knew everything we needed to know. She answered all of our questions without being annoyed, it was quite refreshing.
On Tuesday, we got Lindsey again! I was so excited when I walked in and saw her in Evie's room!!! By the afternoon on Tuesday Lindsey asked me what the plan was. I was confused, afterall, she was the nurse, you tell me the plan! She said, well, when are you getting discharged? With a heavy heart I told her in 2 more weeks. She was stunned and confused. [Monday evening the plastic surgeon resident stopped by and said that Evie needed to be on her tummy for 2 more weeks. I was completely heartbroken. 2 more weeks trying to keep my family together in 2 different places. Feeling helpless because I can't care for my newborn and heartbroken that I wasn't there for my little man at home. I was going through the motions of life, completely exhausted in every sense of the word.] Lindsey said there was no need for Evie to be there that much longer and that our neurosurgeon and plastic surgeon needed to talk to figure out a plan. Communication between those 2 departments had been impossible from the beginning. Neurosurgery would say she could be on her side the same day plastic surgery said 2 more weeks on her tummy. Nuerosurgery would say we could go home, plastic surgery would say 2 more weeks. We were so confused, had no clue what was going on and didn't know what to do. Didn't know if that was normal, we just didn't know. Lindsey assured us she would take care of it. Within hours she had neurosurgery and plastic surgery nurses coordinating their visits to our room. It was decided (after speaking to the actual doctors not the residents or nurses) that Evie could maintain her care by us at home and continue to be on her tummy at home! ALAS! An answer.
Lindsey didn't work on Wednesday or Thursday but she would be back Friday. Wednesday we got a nurse that I absolutely disliked and Thursday we got our second favorite nurse, Holly. Holly is a totally calm spirit that is on top of everything. She knows her stuff, is stern when she needs to be and overall just aweomse! She told the attending pediatrician that there was no reason we couldn't maintain the same level of care at home because we did everything every single day in NICU. She told them we were perfect to go home as long as we could get a heart monitor for Evie since she would have to be on her tummy (SIDS is obviously a huge risk with a baby on their tummy).
So Thursday morning we got the go ahead to start the discharge process. Holly said that we would most likely not get discharged until Friday between noon and 3. Holly coordinated so much for us on Thursday. Evie got her hearing test, Joe and I watched 4 videos, got trained in infant CPR, filled out paperwork for First Steps (such an awesome program!), got Evie her immunizations, called the medical supply place to get them over so we could get Evie fitted for her heart monitor and Joe and I trained on the monitor. She did all of this while discharging another patient across the hall and caring for (who we dubbed) "the crabby baby" -- you could hear him crying all the way down the hall! We were so thankful. If we didn't have her on Thursday (and got the same lazy nurse we had on Wednesday) we would have never gotten out of there!
We left early on Thursday evening (I trusted Holly to lay down the law with Evie's care to the night nurse - I usually stayed until the night nurse came in and I could meet her and decide whether or not I needed to stay the night) and took Gavin to Chuck E. Cheese to celebrate his sister coming home and to have one last fun night out before his life was really turned upside down. He had a blast and so did we. We got an ok amount of sleep and got up early Friday morning, dressed all cute and went up to the hospital to get our girl.
[Thursday before we left we asked Holly if she could request somewhere that we got Lindsey on Friday because we knew she was working]
Joe and I walked in Friday morning and saw Lindsey in Evie's room. We were elated. I walked in and exclaimed how excited I was to see her. Lindsey said on her way in to work she called in to request room 1845 - Evie's room - to find out we had already requested her. She loved us as much as we loved her :)
We didn't do much on Friday, just waited to get all the final paperwork from everyone and get us our discharge instructions. When it came time for discharge I suddenly became overwhelmed with emotions. Was I going to be able to provide the same care at home? What if something happened? I was sad to leave Lindsey, she was so wonderful. But nonetheless, we were discharged! Lindsey helped us get Evie safe and sound in her carseat and walked us out. She waited with me while Joe pulled the truck around (we took my dad's truck because it is the biggest vehicle we could get out hands on which would provide the most safety in case of any stupid people). We talked a little, I could barely look at her because I was seriously so sad to leave her. She loaded us up, said good-bye to Evie, I hugged her and cried, she cried, Joe hugged her, and we were off. The ice cream truck was there and Lindsey headed over to get a treat and waved as we drove by. This was it, we were on our own.
Our third chapter was starting - our journey at home!
Lindsey filling out the last of Evie's paperwork and getting us our discharge instructions. Me feeding Evie a bottle to tide her over until we got home!
Lindsey and Joe getting Evie all situated in her car bed. The NICU had them for us - it allows Evie to travel on her tummy and still be buckled in.
Ready to go home!
Monday, May 13, 2013
Since Evie's Birth
After Evie was transported to Cardinal Glennon I was soon transferred to my recovery room at St. Mary's. I still wasn't allowed to eat but I was able to get ice chips and boy were they good! My dad and sister left with Gavin, Joe's family left and Joe went with Evie. My mom stayed with me at St. Mary's. It was a long night. We didn't get to bed until after midnight!
Joe's first night at NICU was mostly uneventful. The transport team got her to the hospital just minutes after Joe got here and they got set up in her room. Since she was born in the evening, Dr. Elbabaa (pediatric neurosurgeon) decided to wait to do Evie's spinal closure surgery until the morning. Her surgery was scheduled for 9:30 am. Joe got very little sleep but we knew we were on the road to recovery so it didn't matter.
Early Wednesday morning, around 4:00 am my nurse came in to check on me and I told her I wanted to get up and walk (10 hours after delivery). She said we could try it. She clearly didn't know me and my determination. I knew if i walked I could get a day pass to see Evie so I wanted to start early to make sure I could do it. I walked about 5 feet and then the nurse finished getting my vitals.
I was able to eat breakfast so I ordered literally as soon as the kitchen opened. That was the best food I had had in days, oh wait, the only food I had in days! After that mom and I took a small nap.
I got up and walked some more around 8am and even got to go to the bathroom and get the catheter out! My dad came up and sat with us for a while.
One of my most dear friends drove 300 miles to see me from Republic and I got to spend the whole day with her. I knew I would be excited to see her but I didn't realize how much I needed her there. She can call my BS and catch me in a funk and call me out on it. I needed that.
Another friend came to visit me in the hospital. Her son has Spina Bifida and was there as I was getting updates from Dr. Elbabaa during surgery so she was able to interpret a little for me.
Meanwhile, back at Cardinal Glennon, Evie had been taken back to surgery. Dr. Elbabaa wasn't sure if he would be able to close the area on her back because it was larger than we expected. The actual lesion on her spine was the size we expected but there were issues with her skin much larger than we expected and it was in the shape of a triangle which was going to make it quite difficult to close. This meant a plastic surgeon had to be on standby.
I was scared out of my mind about the plastic surgeon. Dr. Elbabaa told us when we met with him at FCI that if a plastic surgeon had to get involved they would have to use slits on her back to allow her skin to be more elastic to stretch to cover the area which would increase the NICU stay from 7-10 days to more like 2 months.
About 12:30 and my cell phone rings. It was an unknown number. I picked up. It was Dr. Elbabaa. He was done with surgery and everything went better than planned. There were no dead nerves which means some nerves may be weaker than others but that they could re-gain vs. being already dead and losing all function associated with those nerves. This is a HUGE win! The head ultrasound looked fine and he saw no need to do a shunt at the time of the closure surgery.
Then he dropped the bomb.
Plastic surgery was in there because he couldn't even attempt to close her spine.
I was broken. Broken hearted. Broken spirited. Just broken.
I cried, became instantly negative, forgot about all the other good news I had just received and was pretty much a mess.
Then I was called out by the one and only and she told me to snap out of it and see the big picture. Afterall, we didn't know what type of closure plastic surgery would end up using.
2 more hours passed and I finally got a call from Joe. He had just spoke to plastic surgery and he just saw Evie. He said Evie looked great and was obviously still out of it. He had a picture of her closure he wanted to send me but he wanted to make sure I was prepared for it before just sending it.
Plastic surgery was able to cut a skin flap of sorts and close the entire spot on her back by just extending what was already cut. This meant no slits and the entire incision was closed with sutures, nothing left open. Another win! This meant we wouldn't have to wait for open incisions to heal before leaving NICU. It made her scar bigger than we thought but hey, overall, great news.
By this time I had already seen my doctor who said I could get a day pass. I had to wait to get my pain meds at 3pm and then I could leave to see my girl. I knew I could only be gone about 4 hours max because I didn't want to miss my next pain meds and regret going. My parents had run back to the house so my mom could shower. Nicole was left in charge of me :)
I took a shower, Nicole made fun of the ridiculously small, thin towels, making me laugh and hurt my incision but it was worth it. I needed to smile. I took a shower, put some clothes on, although not looking the greatest, we were out the door to see my girl!
I got in the wheelchair, ran into a few doors, got in my parents car and we were off!
We got to Cardinal Glennon, I laid eyes on my miracle and stood there in awe as she slept calmly after just having her back sliced open. The nurse came in and let us know that Evie would be able to eat in just a few minutes. I got to feed Evie her first bottle and it was awesome.
We took lots of pictures, decorated her room and just had a nice time being together. She was on her road to recovery and so was I.
Thursday morning I told my doctor I wanted to be released. He said I would probably be ok and decided he would let me go. I was released by 10:00 am and then mom took me to Schnucks to get my prescriptions filled and we were at the hospital by noon (don't even get me started on the hour wait at Schnucks!).
I spent the day with Evie and have spent the day with her since.
Since surgery:
Evie's back looks amazing. The closure is wonderful, plastic surgery really did a great job. Every nurse and doctor that sees her says they have never seen an SB baby's back look so good or an SB baby move so much.
Evie is able to move her hips, knees, ankles and even reacts to touch on her feet. This is huge! She can also go #1 and #2 without having to cath her, another HUGE win! A lot of these babies require cathing almost immediately.
Her head ultraounds have been great. The ventricles are actually measuring smaller now than they were in the womb. They are 1.6 and 1.4. Her head circumfrence is slightly larger each day, but that is measured with a measuring tape and by a different nurse each day. The minimal amount it is different could just be from different hands measuring.
She eats at least 2 ounces at each feeding. She is already on a schedule for feeding and sleeps contently between. We did get a few smiles today!
Yesterday on Mother's Day I got to hold Evie for the first time. I attempted to nurse but she was waaay too comfy and fell right asleep once she was against me. It was ok, I just liked her being near me.
This week Gavin is in daycare full time so Joe and I can be together at the hospital with Evie and spend some good time with her. We usually get visitors in the evening and my parents come up every night to see her so they can just bring me home with them.
We have another head ultrasound tomorrow, hoping the ventricle sizes stay stable. At this point there is no need for a shunt and the neurosurgeons are very pleased with all of her progress.
I would just like to remind everyone of the prognosis we got at the beginning of this journey. While we still don't know the outcome we do have another piece to our puzzle and it is starkly different than the first one we got. I do not have any other explanation other than we serve one awesome God. He healed my girl. While she still had to have surgery, we never imagined in 10 million years we would be faced with the prognosis we have now. The neurosurgeon found NO dead nerves, there is no need for a shunt and her back is looking great. She is healthy, gaining weight and coo'ing and smiling like any other baby.
While our world is slightly upside down right now while trying to juggle our handsome little boy we are making it work with the amazing support of my parents. I could never have done any of this without them. They watch Gavin almost nightly, get him to bed for us, feed him dinner, pick him up from daycare if we need it and are there to distract him so he doesn't realize mommy and daddy aren't there at that time. We never have to ask, they just do it. While I am so eternally grateful for all of their help, I often feel guilty because I don't want it to seem like I am taking advantage of them. I know they know just how grateful we are, it's just hard to remember that they WANT to do all of this for us. I am not sure how I ever got so lucky to have them as parents, but I did. I hope one day my sister can have this same appreciation for them because it is more than I can explain.
Thank you, mom and dad for everything you do for me. You know I couldn't do this without you. Thank you to all of our families for stepping in and loving our little miracle and us in a very hard time for us. Thanks to all of our friends for your kind words and prayers (they worked!) Thank you NIcole (and Bill) for driving up to see me when you knew I needed you. Thank you JESUS for my amazing little girl that is perfect in every way.
I will continue to update everyone of Evie's progress, but until then I am going to sit here and watch her sleep!
Joe's first night at NICU was mostly uneventful. The transport team got her to the hospital just minutes after Joe got here and they got set up in her room. Since she was born in the evening, Dr. Elbabaa (pediatric neurosurgeon) decided to wait to do Evie's spinal closure surgery until the morning. Her surgery was scheduled for 9:30 am. Joe got very little sleep but we knew we were on the road to recovery so it didn't matter.
Early Wednesday morning, around 4:00 am my nurse came in to check on me and I told her I wanted to get up and walk (10 hours after delivery). She said we could try it. She clearly didn't know me and my determination. I knew if i walked I could get a day pass to see Evie so I wanted to start early to make sure I could do it. I walked about 5 feet and then the nurse finished getting my vitals.
I was able to eat breakfast so I ordered literally as soon as the kitchen opened. That was the best food I had had in days, oh wait, the only food I had in days! After that mom and I took a small nap.
I got up and walked some more around 8am and even got to go to the bathroom and get the catheter out! My dad came up and sat with us for a while.
One of my most dear friends drove 300 miles to see me from Republic and I got to spend the whole day with her. I knew I would be excited to see her but I didn't realize how much I needed her there. She can call my BS and catch me in a funk and call me out on it. I needed that.
Another friend came to visit me in the hospital. Her son has Spina Bifida and was there as I was getting updates from Dr. Elbabaa during surgery so she was able to interpret a little for me.
Meanwhile, back at Cardinal Glennon, Evie had been taken back to surgery. Dr. Elbabaa wasn't sure if he would be able to close the area on her back because it was larger than we expected. The actual lesion on her spine was the size we expected but there were issues with her skin much larger than we expected and it was in the shape of a triangle which was going to make it quite difficult to close. This meant a plastic surgeon had to be on standby.
I was scared out of my mind about the plastic surgeon. Dr. Elbabaa told us when we met with him at FCI that if a plastic surgeon had to get involved they would have to use slits on her back to allow her skin to be more elastic to stretch to cover the area which would increase the NICU stay from 7-10 days to more like 2 months.
About 12:30 and my cell phone rings. It was an unknown number. I picked up. It was Dr. Elbabaa. He was done with surgery and everything went better than planned. There were no dead nerves which means some nerves may be weaker than others but that they could re-gain vs. being already dead and losing all function associated with those nerves. This is a HUGE win! The head ultrasound looked fine and he saw no need to do a shunt at the time of the closure surgery.
Then he dropped the bomb.
Plastic surgery was in there because he couldn't even attempt to close her spine.
I was broken. Broken hearted. Broken spirited. Just broken.
I cried, became instantly negative, forgot about all the other good news I had just received and was pretty much a mess.
Then I was called out by the one and only and she told me to snap out of it and see the big picture. Afterall, we didn't know what type of closure plastic surgery would end up using.
2 more hours passed and I finally got a call from Joe. He had just spoke to plastic surgery and he just saw Evie. He said Evie looked great and was obviously still out of it. He had a picture of her closure he wanted to send me but he wanted to make sure I was prepared for it before just sending it.
Plastic surgery was able to cut a skin flap of sorts and close the entire spot on her back by just extending what was already cut. This meant no slits and the entire incision was closed with sutures, nothing left open. Another win! This meant we wouldn't have to wait for open incisions to heal before leaving NICU. It made her scar bigger than we thought but hey, overall, great news.
By this time I had already seen my doctor who said I could get a day pass. I had to wait to get my pain meds at 3pm and then I could leave to see my girl. I knew I could only be gone about 4 hours max because I didn't want to miss my next pain meds and regret going. My parents had run back to the house so my mom could shower. Nicole was left in charge of me :)
I took a shower, Nicole made fun of the ridiculously small, thin towels, making me laugh and hurt my incision but it was worth it. I needed to smile. I took a shower, put some clothes on, although not looking the greatest, we were out the door to see my girl!
I got in the wheelchair, ran into a few doors, got in my parents car and we were off!
We got to Cardinal Glennon, I laid eyes on my miracle and stood there in awe as she slept calmly after just having her back sliced open. The nurse came in and let us know that Evie would be able to eat in just a few minutes. I got to feed Evie her first bottle and it was awesome.
We took lots of pictures, decorated her room and just had a nice time being together. She was on her road to recovery and so was I.
Thursday morning I told my doctor I wanted to be released. He said I would probably be ok and decided he would let me go. I was released by 10:00 am and then mom took me to Schnucks to get my prescriptions filled and we were at the hospital by noon (don't even get me started on the hour wait at Schnucks!).
I spent the day with Evie and have spent the day with her since.
Since surgery:
Evie's back looks amazing. The closure is wonderful, plastic surgery really did a great job. Every nurse and doctor that sees her says they have never seen an SB baby's back look so good or an SB baby move so much.
Evie is able to move her hips, knees, ankles and even reacts to touch on her feet. This is huge! She can also go #1 and #2 without having to cath her, another HUGE win! A lot of these babies require cathing almost immediately.
Her head ultraounds have been great. The ventricles are actually measuring smaller now than they were in the womb. They are 1.6 and 1.4. Her head circumfrence is slightly larger each day, but that is measured with a measuring tape and by a different nurse each day. The minimal amount it is different could just be from different hands measuring.
She eats at least 2 ounces at each feeding. She is already on a schedule for feeding and sleeps contently between. We did get a few smiles today!
Yesterday on Mother's Day I got to hold Evie for the first time. I attempted to nurse but she was waaay too comfy and fell right asleep once she was against me. It was ok, I just liked her being near me.
This week Gavin is in daycare full time so Joe and I can be together at the hospital with Evie and spend some good time with her. We usually get visitors in the evening and my parents come up every night to see her so they can just bring me home with them.
We have another head ultrasound tomorrow, hoping the ventricle sizes stay stable. At this point there is no need for a shunt and the neurosurgeons are very pleased with all of her progress.
I would just like to remind everyone of the prognosis we got at the beginning of this journey. While we still don't know the outcome we do have another piece to our puzzle and it is starkly different than the first one we got. I do not have any other explanation other than we serve one awesome God. He healed my girl. While she still had to have surgery, we never imagined in 10 million years we would be faced with the prognosis we have now. The neurosurgeon found NO dead nerves, there is no need for a shunt and her back is looking great. She is healthy, gaining weight and coo'ing and smiling like any other baby.
While our world is slightly upside down right now while trying to juggle our handsome little boy we are making it work with the amazing support of my parents. I could never have done any of this without them. They watch Gavin almost nightly, get him to bed for us, feed him dinner, pick him up from daycare if we need it and are there to distract him so he doesn't realize mommy and daddy aren't there at that time. We never have to ask, they just do it. While I am so eternally grateful for all of their help, I often feel guilty because I don't want it to seem like I am taking advantage of them. I know they know just how grateful we are, it's just hard to remember that they WANT to do all of this for us. I am not sure how I ever got so lucky to have them as parents, but I did. I hope one day my sister can have this same appreciation for them because it is more than I can explain.
Thank you, mom and dad for everything you do for me. You know I couldn't do this without you. Thank you to all of our families for stepping in and loving our little miracle and us in a very hard time for us. Thanks to all of our friends for your kind words and prayers (they worked!) Thank you NIcole (and Bill) for driving up to see me when you knew I needed you. Thank you JESUS for my amazing little girl that is perfect in every way.
I will continue to update everyone of Evie's progress, but until then I am going to sit here and watch her sleep!
The Birth of Evie Grace
Where to start?? It's been a whirlwind of a week.
About this time one week ago today I was in the early stages of labor! Time flies!
Last Monday I stayed home from work because my back pain was unbearable and I could barely get out of bed. I had an awful nights rest and literally thought I was dying. I have never felt pain like this before in my life. So I stayed home and was in bed pretty much all day.
From about 11:00 am - 1:00 pm I was having regular contractions, about every 15 minutes. They weren't getting any closer together and eventually tapered off shortly after 1. About that time I realized I hadn't been feeling Evie regularly like the doctors told me I should. At 3:30 I decided I better call the doctor before their office closed to see what they wanted me to do. I wasn't sure since I was having contractions that would cause her to stop moving as much. I spoke to my nurse who said Evie should have still been moving normally and she requested I report to triage to get put on the monitors to make sure everything was going ok.
Joe was out picking up Gavin from daycare. As soon as he got home we left Gavin with my dad and Joe and I left for the hospital. My mom met us up there. We got to the hospital around 5pm on Monday night. I hadn't eaten since 2pm, I was hungry for dinner but thought we would only be there a few hours and I would grab something on the way home. I was wrong. WAY WRONG!
We waited for a room in triage. Waited and waited. They were full. At 6:30 we finally got a room. They put me on monitors and within minutes you could see my contractions. I was still having them. The nurse chalked it up to "uterus irritability" - what does that mean anyways? They told me the same thing with Gavin! So we sat there, me on the most uncomfortable "bed" you have ever been on in your life, I promise. I knew my doctor, Dr. Vlastos, was at the hospital and I was waiting to see him in triage to see what he thought.
My contractions started getting closer and closer together. Like 2 -3 minutes apart. Finally after seeing a "normal OB" (non high risk) they called in another high risk doctor to see me because this doctor just could not understand why my doctors didn't want me going in to labor. I felt like I needed a power point to explain what spina bifida was and then maybe she would understand. So, I see the high risk doctor and within minutes she was on the phone with Dr. V who said I was going to be admitted for 24 hours of observation. We didn't get this news until 11:30pm. My mom left at that point to get home and get some rest as she would be staying downstairs with Gavin since we wouldn't be home.
By 12:30 am we were finally admitted to the hospital. We didn't get transferred to my actual room until 1:30 and they were getting my vitals until about 2:30 am. At this point my contractions are lasting 45 seconds and are 1-1.5 minutes apart. The problem was that my cervix was dilating (I told them about Gavin a million times but the nurses didn't seem to care - I never dilated with Gavin either!). That night I got 3 hours of sleep, if I round up!
My contractions lasted all through the night. They spaced back out to every 3 minutes or so but they were still there.
The nurses were convinced I wouldn't be delivering so they ordered me a regular diet and I was able to order an awesome breakfast. An omlet made to order, hashbrowns, a banana and apple juice. I was so stinking excited to eat! I was starving!
One of my doctor's Residents came in and checked me at 7:00am on Tuesday morning and said I still wasn't progressing and that Dr. Vlastos would be coming by to see me first thing in the morning.
Dr. Vlastos came in at 8:00 am and said he wanted to watch me until 10 and then at 10 he would make the decision on whether we would deliver Evie or try and stop the labor to make it to my c-section date. He also said that just in case I wasn't allowed to eat. So much for that awesome breakfast I just ordered. He took me off of everything, I wasn't even allowed ice chips. Man, was I hungry!
10:00 came and went. Around 11:00ish Dr. V came in and said he wanted to wait a little longer to see what my body would do. He came back to check on me around 12:00 and said he was on his way to a meeting and would definitely make the decision around 1.
12:45pm, the anesthesiologist came in and asked if I had talked to Dr. Vlastos. I said I hadn't but that since he was there that must have meant we were going. He said not necisarily and he just wanted to get my paperwork done. I was bummed. Not because I wasn't having her but because we still didn't know what was going on. We signed the paperwork, took off all my jewelry and waited some more.
1:15pm - Dr. V came in and said he wanted to check me again. I was 1cm dilated and my cervix was "very soft" (he also referred to my cervix as "stingy" - haha I tried to tell them!). He said my contractions plus dilation plus soft cervix equals we are having a baby today. My heart sank. While I wanted an answer on what we were doing I wasn't sure I was prepared to get answers I had been waiting so long for.
He was delivering a baby at 1:30 via c-section and I would be right after that. 3pm rolled around and it was my time. Just when we opened the door my sister in law and Joe see nurses running, literally running towards the OR and a girl in street clothes with oxygen on getting wheeled down. My nurse ran in to tell us there was an emergency and we were getting bumped. I wasn't mad at all. If I was the emergency I would want the non-emergency to be bumped as well. I was also relieved to buy more time to get myself together.
5:30 came (well over 24 hours since I have eaten!) and my nurse came in to start prepping me. I had to take a shower with special soap, drink a nasty drink, put my hair up, you know, the whole 9 yards.
6:00 - I walked back to the OR. I thought since I wasn't an emergency everything would be calm in there. I was wrong, I think those OR nurses only know who to be in a rush. So I sat on the tiny table, now shaking and scared out of my mind. I am not sure why I got so nervous, ok I do know, I was terrified of answers. My resident doctor came and held my hand and told me it was all ok and waited for me to get my spinal block. He was awesome, seriously awesome. I laid on the little bed and got my tingly feeling right away. Blue curtain went up, Joe was in there, it was time.
Time to meet my baby.
Dr. Vlastos was within an ears shot the entire time. I got to hear all things no one ever wants to hear. Things like "I'm not sure what that is, we are about to find out" and "We'll find the baby here soon". I started freaking out and told Joe to start talking to me and to not stop. So he obliged and we talked about the weirdest things, even the weather, ha!
Dr. V heard me worrying and peeked his head over the blue curtain and said they were having a hard time getting to her because of all of my scar tissue from Gavin's c-section. Not too long after that, Joe was told to stand up and watch his daughter being born.
He saw everything and I mean everything and watched as they pulled our sweet Evie Grace from the womb. She came out screaming like crazy. Best noise ever.
She had swallowed meconium so they were getting a good scution on her. The neonatologist swooped her up right away to get her back all covered to avoid infection. Joe followed back to a glass enclosed room as they weighed her and got her in her little NICU bed. I was able to see her for a quick second while still in the operating room. I cried and cried. She looked just like Gavin.
I talked to Dr. Vlastos and the neonatologist who said she was perfectly healthy and "normal" all except her back. That made me a little relieved. Since she was only 37 weeks 1 day I was concerned about her breathing but she didn't have a problem.
While I was finishing up in surgery the doctors wheeled Evie by my room so the family could get a quick look and then I went back to my room for recovery.
About a half hour into my recovery the transport team arrived to my room so that I could see her one more time before she was taken to Cardinal Glennon. The entire family was in there (not how I wanted it but we didn't have much time). They wheeled her transport bed around to the side of my bed and unzipped it. I held her hand. We took a million pictures and then it was time for her to go. I cried hysterically. Joe left which made Gavin cry which made me cry that Gavin was crying but Grandpa was there and made everything all better.
I knew this is how it would all happen, that she would be taken from me and Joe would go with her but I was heartbroken, no amount of time can prepare you for that. I didn't even feel like her mom. There I was in the hospital with no baby belly and no baby. Where was my baby? I felt awful. I just wanted her.
She was healthy. 8lbs 3 oz and 20 1/2 inches long. That was all that mattered.
The next chapter of our story was starting and it would start at Cardinal Glennon NICU.
(Please note I do not have pictures of her back uploaded. The Spina Bifida will not define this sweet girl. I do not find those pictures to be of importance to most people. Please enjoy the pictures of our sweet girl)
About this time one week ago today I was in the early stages of labor! Time flies!
Last Monday I stayed home from work because my back pain was unbearable and I could barely get out of bed. I had an awful nights rest and literally thought I was dying. I have never felt pain like this before in my life. So I stayed home and was in bed pretty much all day.
From about 11:00 am - 1:00 pm I was having regular contractions, about every 15 minutes. They weren't getting any closer together and eventually tapered off shortly after 1. About that time I realized I hadn't been feeling Evie regularly like the doctors told me I should. At 3:30 I decided I better call the doctor before their office closed to see what they wanted me to do. I wasn't sure since I was having contractions that would cause her to stop moving as much. I spoke to my nurse who said Evie should have still been moving normally and she requested I report to triage to get put on the monitors to make sure everything was going ok.
Joe was out picking up Gavin from daycare. As soon as he got home we left Gavin with my dad and Joe and I left for the hospital. My mom met us up there. We got to the hospital around 5pm on Monday night. I hadn't eaten since 2pm, I was hungry for dinner but thought we would only be there a few hours and I would grab something on the way home. I was wrong. WAY WRONG!
We waited for a room in triage. Waited and waited. They were full. At 6:30 we finally got a room. They put me on monitors and within minutes you could see my contractions. I was still having them. The nurse chalked it up to "uterus irritability" - what does that mean anyways? They told me the same thing with Gavin! So we sat there, me on the most uncomfortable "bed" you have ever been on in your life, I promise. I knew my doctor, Dr. Vlastos, was at the hospital and I was waiting to see him in triage to see what he thought.
My contractions started getting closer and closer together. Like 2 -3 minutes apart. Finally after seeing a "normal OB" (non high risk) they called in another high risk doctor to see me because this doctor just could not understand why my doctors didn't want me going in to labor. I felt like I needed a power point to explain what spina bifida was and then maybe she would understand. So, I see the high risk doctor and within minutes she was on the phone with Dr. V who said I was going to be admitted for 24 hours of observation. We didn't get this news until 11:30pm. My mom left at that point to get home and get some rest as she would be staying downstairs with Gavin since we wouldn't be home.
By 12:30 am we were finally admitted to the hospital. We didn't get transferred to my actual room until 1:30 and they were getting my vitals until about 2:30 am. At this point my contractions are lasting 45 seconds and are 1-1.5 minutes apart. The problem was that my cervix was dilating (I told them about Gavin a million times but the nurses didn't seem to care - I never dilated with Gavin either!). That night I got 3 hours of sleep, if I round up!
My contractions lasted all through the night. They spaced back out to every 3 minutes or so but they were still there.
The nurses were convinced I wouldn't be delivering so they ordered me a regular diet and I was able to order an awesome breakfast. An omlet made to order, hashbrowns, a banana and apple juice. I was so stinking excited to eat! I was starving!
One of my doctor's Residents came in and checked me at 7:00am on Tuesday morning and said I still wasn't progressing and that Dr. Vlastos would be coming by to see me first thing in the morning.
Dr. Vlastos came in at 8:00 am and said he wanted to watch me until 10 and then at 10 he would make the decision on whether we would deliver Evie or try and stop the labor to make it to my c-section date. He also said that just in case I wasn't allowed to eat. So much for that awesome breakfast I just ordered. He took me off of everything, I wasn't even allowed ice chips. Man, was I hungry!
10:00 came and went. Around 11:00ish Dr. V came in and said he wanted to wait a little longer to see what my body would do. He came back to check on me around 12:00 and said he was on his way to a meeting and would definitely make the decision around 1.
12:45pm, the anesthesiologist came in and asked if I had talked to Dr. Vlastos. I said I hadn't but that since he was there that must have meant we were going. He said not necisarily and he just wanted to get my paperwork done. I was bummed. Not because I wasn't having her but because we still didn't know what was going on. We signed the paperwork, took off all my jewelry and waited some more.
1:15pm - Dr. V came in and said he wanted to check me again. I was 1cm dilated and my cervix was "very soft" (he also referred to my cervix as "stingy" - haha I tried to tell them!). He said my contractions plus dilation plus soft cervix equals we are having a baby today. My heart sank. While I wanted an answer on what we were doing I wasn't sure I was prepared to get answers I had been waiting so long for.
He was delivering a baby at 1:30 via c-section and I would be right after that. 3pm rolled around and it was my time. Just when we opened the door my sister in law and Joe see nurses running, literally running towards the OR and a girl in street clothes with oxygen on getting wheeled down. My nurse ran in to tell us there was an emergency and we were getting bumped. I wasn't mad at all. If I was the emergency I would want the non-emergency to be bumped as well. I was also relieved to buy more time to get myself together.
5:30 came (well over 24 hours since I have eaten!) and my nurse came in to start prepping me. I had to take a shower with special soap, drink a nasty drink, put my hair up, you know, the whole 9 yards.
6:00 - I walked back to the OR. I thought since I wasn't an emergency everything would be calm in there. I was wrong, I think those OR nurses only know who to be in a rush. So I sat on the tiny table, now shaking and scared out of my mind. I am not sure why I got so nervous, ok I do know, I was terrified of answers. My resident doctor came and held my hand and told me it was all ok and waited for me to get my spinal block. He was awesome, seriously awesome. I laid on the little bed and got my tingly feeling right away. Blue curtain went up, Joe was in there, it was time.
Time to meet my baby.
Dr. Vlastos was within an ears shot the entire time. I got to hear all things no one ever wants to hear. Things like "I'm not sure what that is, we are about to find out" and "We'll find the baby here soon". I started freaking out and told Joe to start talking to me and to not stop. So he obliged and we talked about the weirdest things, even the weather, ha!
Dr. V heard me worrying and peeked his head over the blue curtain and said they were having a hard time getting to her because of all of my scar tissue from Gavin's c-section. Not too long after that, Joe was told to stand up and watch his daughter being born.
He saw everything and I mean everything and watched as they pulled our sweet Evie Grace from the womb. She came out screaming like crazy. Best noise ever.
She had swallowed meconium so they were getting a good scution on her. The neonatologist swooped her up right away to get her back all covered to avoid infection. Joe followed back to a glass enclosed room as they weighed her and got her in her little NICU bed. I was able to see her for a quick second while still in the operating room. I cried and cried. She looked just like Gavin.
I talked to Dr. Vlastos and the neonatologist who said she was perfectly healthy and "normal" all except her back. That made me a little relieved. Since she was only 37 weeks 1 day I was concerned about her breathing but she didn't have a problem.
While I was finishing up in surgery the doctors wheeled Evie by my room so the family could get a quick look and then I went back to my room for recovery.
About a half hour into my recovery the transport team arrived to my room so that I could see her one more time before she was taken to Cardinal Glennon. The entire family was in there (not how I wanted it but we didn't have much time). They wheeled her transport bed around to the side of my bed and unzipped it. I held her hand. We took a million pictures and then it was time for her to go. I cried hysterically. Joe left which made Gavin cry which made me cry that Gavin was crying but Grandpa was there and made everything all better.
I knew this is how it would all happen, that she would be taken from me and Joe would go with her but I was heartbroken, no amount of time can prepare you for that. I didn't even feel like her mom. There I was in the hospital with no baby belly and no baby. Where was my baby? I felt awful. I just wanted her.
She was healthy. 8lbs 3 oz and 20 1/2 inches long. That was all that mattered.
The next chapter of our story was starting and it would start at Cardinal Glennon NICU.
(Please note I do not have pictures of her back uploaded. The Spina Bifida will not define this sweet girl. I do not find those pictures to be of importance to most people. Please enjoy the pictures of our sweet girl)
Wednesday, May 1, 2013
Growth Spurt!
The past few appointments have been rather uneventful, which I guess at this point is a good thing. My 2 regular doctors (Vlastos and Nguyen) have been either completely booked or teaching at SB conferences so I have seen 2 other high risk doctors. The 2 other doctors I have been seeing are not very educated on Spina Bifida so it is frustrating having to explain to them that Evie will have surgery a mere 3.5 hours after birth! But none-the-less, we keep on trucking and show up to our appointments every week.
Last week Evie didn't do so hot on her biophysical testing - she only got a 6/10 because she refused to breathe for the ultrasound tech. She wasn't sleeping because she was moving all over but she refused to practice any lung movement at that time so mommy had to lay on the super uncomfortable table for the full 30 minutes and still...nothing! We then got her NST test which she always passes with flying colors. The doctor I was seeing last week was running incredibly behind and Joe had to leave before we could even meet with her. That appointment was probably the most "normal" appointment I have had since this diagnosis. We talked about back pain and swelling and there was never even a mention of Spina Bifida - weird!
This week Evie flew through her biophysical testing and decided to have hiccups and breathe like a champ for the tech, 10/10!! Her ventricles are all measuring about the same - right around 2. The tech I had was so confused at the fact that I didn't have the fetal closure surgery. She very rudely said "well why wouldn't you have that done if it was available" - she rubbed me the wrong way so I very ungraciously snapped back at her and said "I didn't qualify" then she wanted to know the specifics on why - hey, lady, that's none of your business! So moral of that rant is she didn't even measure the opening on E's back so we have no idea what that is measuring right now. Hopefully we get our awesome tech back next week! We did get her weight this time though....
7lb 2oz! HOLY COW!!
2 weeks ago she was just over 5lbs! The girl hit her growth spurt! Even with her increased weight I didn't gain any weight which is fine by me! She is getting some super chubby cheeks and was making the funniest faces at us. We got one of her stink face and of her smiling - to say she is expressive already is an understatement - I have no clue where she gets that from :)
I met with a doctor that I hadn't ever seen which sucked and once again they were running late so Joe had to head back to work. This guy knew minimal about SB but still said things like "we need her to be nice and chubby because she might need surgery after birth" - MIGHT? Did you mean to say she has her surgery already scheduled?!?! So stinking frustrating, but I had no other choice but to see him! He looked at my scar from my c-section for Gavin and said it looked good and that they will probably be able to use the same spot - I sure hope so! That was that, no more talk of anything and I was out the door 10 minutes after I got put in the exam room!
Next week we finally get to meet with Dr. Vlastos again and then the next week Dr. Nguyen. Thankful I get to see my doctors for my last 2 visits before surgery (if I make it that long - come on sweet girl, we are ready for you!).
Praying for an uneventful next few weeks and that our sweet girl graces us with her presence sooner than later (as long as those lungs are ready). I guess I probably need to pack my hospital bag now - gosh how things are different the second time around :)
Keep on praying guys - our sweet girl needs them and mommy and daddy need strength to finish this out! Much love to you all!
Last week Evie didn't do so hot on her biophysical testing - she only got a 6/10 because she refused to breathe for the ultrasound tech. She wasn't sleeping because she was moving all over but she refused to practice any lung movement at that time so mommy had to lay on the super uncomfortable table for the full 30 minutes and still...nothing! We then got her NST test which she always passes with flying colors. The doctor I was seeing last week was running incredibly behind and Joe had to leave before we could even meet with her. That appointment was probably the most "normal" appointment I have had since this diagnosis. We talked about back pain and swelling and there was never even a mention of Spina Bifida - weird!
This week Evie flew through her biophysical testing and decided to have hiccups and breathe like a champ for the tech, 10/10!! Her ventricles are all measuring about the same - right around 2. The tech I had was so confused at the fact that I didn't have the fetal closure surgery. She very rudely said "well why wouldn't you have that done if it was available" - she rubbed me the wrong way so I very ungraciously snapped back at her and said "I didn't qualify" then she wanted to know the specifics on why - hey, lady, that's none of your business! So moral of that rant is she didn't even measure the opening on E's back so we have no idea what that is measuring right now. Hopefully we get our awesome tech back next week! We did get her weight this time though....
7lb 2oz! HOLY COW!!
2 weeks ago she was just over 5lbs! The girl hit her growth spurt! Even with her increased weight I didn't gain any weight which is fine by me! She is getting some super chubby cheeks and was making the funniest faces at us. We got one of her stink face and of her smiling - to say she is expressive already is an understatement - I have no clue where she gets that from :)
I met with a doctor that I hadn't ever seen which sucked and once again they were running late so Joe had to head back to work. This guy knew minimal about SB but still said things like "we need her to be nice and chubby because she might need surgery after birth" - MIGHT? Did you mean to say she has her surgery already scheduled?!?! So stinking frustrating, but I had no other choice but to see him! He looked at my scar from my c-section for Gavin and said it looked good and that they will probably be able to use the same spot - I sure hope so! That was that, no more talk of anything and I was out the door 10 minutes after I got put in the exam room!
Next week we finally get to meet with Dr. Vlastos again and then the next week Dr. Nguyen. Thankful I get to see my doctors for my last 2 visits before surgery (if I make it that long - come on sweet girl, we are ready for you!).
Praying for an uneventful next few weeks and that our sweet girl graces us with her presence sooner than later (as long as those lungs are ready). I guess I probably need to pack my hospital bag now - gosh how things are different the second time around :)
Keep on praying guys - our sweet girl needs them and mommy and daddy need strength to finish this out! Much love to you all!
Thursday, April 18, 2013
Last Appointment at FCI!
I can't believe we just went to our very last appointment at FCI! It seems like yesterday we were walking in there more scared than ever and sat through an entire days worth of appointments, crying so much we couldn't think straight and hearing a lot of "I don't knows".
Today was different.
I was strong and we got some answers to questions that we had accepted "I don't know" as the answer to!
We went there thinking we were going to be meeting with Dr. Vlastos again and Dr. Elbaba (the pediatric neurosurgeon). But Dr. Vlastos didn't need to see us again, we weren't sure why we would have seen him 2 days in a row anyways, and Dr. Elbaba wasn't able to be there so we met with his nurse, Rachel.
Rachel is awesome and knows so much. If I couldn't see Elbaba, she is the next best! She was able to answer so many questions for us and we didn't even have to ask them, it was all just part of her speal! So here goes.
Evie's surgery is scheduled for 2pm on May 20th. My c-section is at 10:30 and we all know nothing ever goes on time. This is good and bad. I say bad for selfish reasons because it is mostly wonderful that her surgery is at 2! This means we will probably not have the full 2 hours to bond with her before she is taken from me and transferred to Cardinal Glennon but this means that her back will be closed SO soon and she will be on her road to recovery much sooner than we expected! She will not be able to eat until late in the evening on the 20th or early morning on the 21st. They will attempt to feed her with a bottle; however, since she has to be on her tummy post-surgery for at least 24-48 hours it all depends whether she figures out how to latch on to the bottle while laying on her tummy with her face sideways. If she can't, they will place a feeding tube until she can be on her side or back and at that time I can even attempt to nurse her! This is wonderful news! We had been told that I may not be able to attempt to nurse for up to 2 weeks, now we are talking only 2 days!
Rachel believes I should have the chance to hold Evie for a short period of time before they request she stay on her tummy. We weren't sure if we would be able to hold her, but as of now we can!
After surgery she will stay on her tummy and if her incision is healing well then they will gradually begin to rotate her to her side after 24 hours (longer if needed) and then after a few days on the side she will get to lay on her back. Depending on her recovery we could be out of NICU as soon as a week but may be there more like 2 weeks. It just all depends, but we do have a much better understanding of what indicators to look for to gain an idea on time table for being discharged.
At discharge she will be sent home with a donut shaped insert for her car seat to relieve the pressure on her incision. We had always wondered if we needed a special seat and everyone said "I don't know". Well now we know! The answer is NO! Good thing too because I already got her a seat!
As far as the shunt to help drain the fluid from her brain....Dr. Elbaba likes to wait as long as possible to see if the child can figure out for itself how to accomodate the fluid after the spinal closure surgery. A lot of times babies have shunts implanted when they may not have needed it in the long run. Since babies have such pliable heads no brain damage will occur while we are in the wait and see phase. If Dr. Elbaba determines from MRI and ultrasound that Evie doesn't need a shunt and she is eating and sleeping well then he will discharge her and see her back weekly to keep assessing her ventricles to make sure we don't need to intervene. We love that the doctor is so willing to give the babies a chance instead of doing a brain surgery right away that might not be necessary.
Rachel said she has seen it all different ways. Sometimes the brain actually improves after spine closure surgery, sometimes it gets worse fast and a shunt is needed before discharge and sometimes the child is stable but needs one later. This is one of those wait and sees, but it is nice to know there is a plan of attack. I like plans.
After discharge we will either go to the Neurosurgery clinics on Tuesday mornings or the actual Spina Bifida clinic on Wednesday afternoons. This all just depends on how she is doing and what doctors she needs to see. The clinics are great because doctors of all different practices are in the same place so that we don't have to go running around to see everyone. It is just a day of doctors!
Rachel thinks we should be able to take Evie on a trip to Springfield towards the end of my maternity leave as long as her spine is closing well and her fluid is stable. We will have to stop frequently to get her out and relieve the pressure off her back, but what family can not stop frequently with a one year old and a baby???
Rachel said that our case of Spina Bifida is a great case and that the lesion is low enough to where the prognosis for walking is very good.
After we met with Rachel we met with our nurse, Jenny. She just told us good luck and that many prayers were being sent our way. Another few nurses came in and said that we didn't know them but they felt like they knew us from reading our file and hearing all the wonderful things the other nurses had to say about us. They all asked if we would bring Evie for a visit. It's so crazy how I just met all these people less than 4 months ago, had only 3 appointments and I feel like we have such a bond. God truly placed a lot of wonderful people in our lives!
I feel very prepared after our appointment today. I feel like I have the plan of attack all ready to go from my c-section through surgery and even a few days post-surgery. I feel less like my world is spinning out of control and know that God is slowly revealing his plan to us. I hate being patient, definately not one of my strong suits, but I am thankful that I have made it this far with very little of the plan known!
Thank you all for the continued prayers for our family and our little miracle baby! She is going to be here before we know it!
Today was different.
I was strong and we got some answers to questions that we had accepted "I don't know" as the answer to!
We went there thinking we were going to be meeting with Dr. Vlastos again and Dr. Elbaba (the pediatric neurosurgeon). But Dr. Vlastos didn't need to see us again, we weren't sure why we would have seen him 2 days in a row anyways, and Dr. Elbaba wasn't able to be there so we met with his nurse, Rachel.
Rachel is awesome and knows so much. If I couldn't see Elbaba, she is the next best! She was able to answer so many questions for us and we didn't even have to ask them, it was all just part of her speal! So here goes.
Evie's surgery is scheduled for 2pm on May 20th. My c-section is at 10:30 and we all know nothing ever goes on time. This is good and bad. I say bad for selfish reasons because it is mostly wonderful that her surgery is at 2! This means we will probably not have the full 2 hours to bond with her before she is taken from me and transferred to Cardinal Glennon but this means that her back will be closed SO soon and she will be on her road to recovery much sooner than we expected! She will not be able to eat until late in the evening on the 20th or early morning on the 21st. They will attempt to feed her with a bottle; however, since she has to be on her tummy post-surgery for at least 24-48 hours it all depends whether she figures out how to latch on to the bottle while laying on her tummy with her face sideways. If she can't, they will place a feeding tube until she can be on her side or back and at that time I can even attempt to nurse her! This is wonderful news! We had been told that I may not be able to attempt to nurse for up to 2 weeks, now we are talking only 2 days!
Rachel believes I should have the chance to hold Evie for a short period of time before they request she stay on her tummy. We weren't sure if we would be able to hold her, but as of now we can!
After surgery she will stay on her tummy and if her incision is healing well then they will gradually begin to rotate her to her side after 24 hours (longer if needed) and then after a few days on the side she will get to lay on her back. Depending on her recovery we could be out of NICU as soon as a week but may be there more like 2 weeks. It just all depends, but we do have a much better understanding of what indicators to look for to gain an idea on time table for being discharged.
At discharge she will be sent home with a donut shaped insert for her car seat to relieve the pressure on her incision. We had always wondered if we needed a special seat and everyone said "I don't know". Well now we know! The answer is NO! Good thing too because I already got her a seat!
As far as the shunt to help drain the fluid from her brain....Dr. Elbaba likes to wait as long as possible to see if the child can figure out for itself how to accomodate the fluid after the spinal closure surgery. A lot of times babies have shunts implanted when they may not have needed it in the long run. Since babies have such pliable heads no brain damage will occur while we are in the wait and see phase. If Dr. Elbaba determines from MRI and ultrasound that Evie doesn't need a shunt and she is eating and sleeping well then he will discharge her and see her back weekly to keep assessing her ventricles to make sure we don't need to intervene. We love that the doctor is so willing to give the babies a chance instead of doing a brain surgery right away that might not be necessary.
Rachel said she has seen it all different ways. Sometimes the brain actually improves after spine closure surgery, sometimes it gets worse fast and a shunt is needed before discharge and sometimes the child is stable but needs one later. This is one of those wait and sees, but it is nice to know there is a plan of attack. I like plans.
After discharge we will either go to the Neurosurgery clinics on Tuesday mornings or the actual Spina Bifida clinic on Wednesday afternoons. This all just depends on how she is doing and what doctors she needs to see. The clinics are great because doctors of all different practices are in the same place so that we don't have to go running around to see everyone. It is just a day of doctors!
Rachel thinks we should be able to take Evie on a trip to Springfield towards the end of my maternity leave as long as her spine is closing well and her fluid is stable. We will have to stop frequently to get her out and relieve the pressure off her back, but what family can not stop frequently with a one year old and a baby???
Rachel said that our case of Spina Bifida is a great case and that the lesion is low enough to where the prognosis for walking is very good.
After we met with Rachel we met with our nurse, Jenny. She just told us good luck and that many prayers were being sent our way. Another few nurses came in and said that we didn't know them but they felt like they knew us from reading our file and hearing all the wonderful things the other nurses had to say about us. They all asked if we would bring Evie for a visit. It's so crazy how I just met all these people less than 4 months ago, had only 3 appointments and I feel like we have such a bond. God truly placed a lot of wonderful people in our lives!
I feel very prepared after our appointment today. I feel like I have the plan of attack all ready to go from my c-section through surgery and even a few days post-surgery. I feel less like my world is spinning out of control and know that God is slowly revealing his plan to us. I hate being patient, definately not one of my strong suits, but I am thankful that I have made it this far with very little of the plan known!
Thank you all for the continued prayers for our family and our little miracle baby! She is going to be here before we know it!
Wednesday, April 17, 2013
Not What I Wanted to Hear....
Today we were at the doctor's office again. Overall summary, I didn't hear things I wanted to hear.
We got called back and got the awesome tech again, been getting her a lot lately! She was a lot less talkative this time which made me nervous. She took measurements of the ventricles, not much as changed, both right around 2cm (when we started they were at 1 and .9). She was able to show us a bunch of hair that Evie has been growing, looks like she has a whole head of it! Her legs look good, no clubbing of the feet.
But then we looked at her back.
The past 2 months or so we have been high on the news that the doctors strongly believed this was a case of Meningocele rather than Myleomeningocele which is a more rare form but a much "better" form of SB to have. Meningocele means no nerves were affected and the child will most likely like a completely normal life, with perhaps bowel/bladder control issues, but as far as physically, no limitations.
That all changed today.
We saw her spinal cord in the sac.
There it was....you see the 3 lines which make up the cord. They all lay just right and then you see the opening, the bubble, and the middle line of the cord go into the bubble and then back down her back.
I was devasted. Completely devasted. I couldn't look at the screen anymore. I turned my head and just waited for her to finish. The tech couldn't tell me much of anything because she isn't a doctor. So we waited.
Next was the Non-Stress Test. We were on the monitors for a few seconds and I could see all of my contractions on the screen. Sometimes they hurt and sometimes they don't. Evie's heart was unusually low today. Measuring in the 120's - 130's and would spike around 155. I was more concerned about her little heart than my contractions but apparently it should have been the other way around. After 20 minutes the nurse said Evie had passed her portion of the test but that the doctor wanted me on the monitors for a little while longer to assess my contractions.
So we waited on the monitors for a total of about 40 minutes and the doctor said it was fine for me to come off of them.
We met with Dr. Vlastos again today. He said the baby looks good. She weighs 5lb 6oz right now. I asked him about her back. He thinks the nerve has been in the sac this whole time and we just couldn't see it (I was so afraid of this). He did say that her legs are nice and fat and she is moving her toes which means the nerves haven't been so damaged that her legs have no muscle tone - so I guess that is good news.
He checked me today since I was having contractions the entire time and my back has been acting up and I have severe pressure. I am only 25% effaced and not dilated at all. That is good, she needs to cook longer. (although this is good news, it doesn't tell us much because I was only 2cm when I had Gavin by c-section and I was in active labor with my water broken for over 6 hours). The doctor said our new goal needs to be 37 weeks rather than 39 with all of the contractions I am having.
My blood pressure is slowly rising - we are close to the cut-off where I will be put on bed rest. Just praying I keep her in a while longer to finish cooking.
Tomorrow is FCI where I will meet with Dr. Elbaba (pediatric neurosurgeon) about the details of Evie's back closure surgery.
Prayer warriors - keep praying. I am feeling very defeated and attacked. What was becoming a story of a miraculous healing is crumbling in front of my eyes. I know "this is the plan" but it is very hard to cope with this plan that is being uncovered for us. It is nearly impossible to not ask why me? why our baby? I know I have to have faith in this plan, it is just becoming more difficult.
We got called back and got the awesome tech again, been getting her a lot lately! She was a lot less talkative this time which made me nervous. She took measurements of the ventricles, not much as changed, both right around 2cm (when we started they were at 1 and .9). She was able to show us a bunch of hair that Evie has been growing, looks like she has a whole head of it! Her legs look good, no clubbing of the feet.
But then we looked at her back.
The past 2 months or so we have been high on the news that the doctors strongly believed this was a case of Meningocele rather than Myleomeningocele which is a more rare form but a much "better" form of SB to have. Meningocele means no nerves were affected and the child will most likely like a completely normal life, with perhaps bowel/bladder control issues, but as far as physically, no limitations.
That all changed today.
We saw her spinal cord in the sac.
There it was....you see the 3 lines which make up the cord. They all lay just right and then you see the opening, the bubble, and the middle line of the cord go into the bubble and then back down her back.
I was devasted. Completely devasted. I couldn't look at the screen anymore. I turned my head and just waited for her to finish. The tech couldn't tell me much of anything because she isn't a doctor. So we waited.
Next was the Non-Stress Test. We were on the monitors for a few seconds and I could see all of my contractions on the screen. Sometimes they hurt and sometimes they don't. Evie's heart was unusually low today. Measuring in the 120's - 130's and would spike around 155. I was more concerned about her little heart than my contractions but apparently it should have been the other way around. After 20 minutes the nurse said Evie had passed her portion of the test but that the doctor wanted me on the monitors for a little while longer to assess my contractions.
So we waited on the monitors for a total of about 40 minutes and the doctor said it was fine for me to come off of them.
We met with Dr. Vlastos again today. He said the baby looks good. She weighs 5lb 6oz right now. I asked him about her back. He thinks the nerve has been in the sac this whole time and we just couldn't see it (I was so afraid of this). He did say that her legs are nice and fat and she is moving her toes which means the nerves haven't been so damaged that her legs have no muscle tone - so I guess that is good news.
He checked me today since I was having contractions the entire time and my back has been acting up and I have severe pressure. I am only 25% effaced and not dilated at all. That is good, she needs to cook longer. (although this is good news, it doesn't tell us much because I was only 2cm when I had Gavin by c-section and I was in active labor with my water broken for over 6 hours). The doctor said our new goal needs to be 37 weeks rather than 39 with all of the contractions I am having.
My blood pressure is slowly rising - we are close to the cut-off where I will be put on bed rest. Just praying I keep her in a while longer to finish cooking.
Tomorrow is FCI where I will meet with Dr. Elbaba (pediatric neurosurgeon) about the details of Evie's back closure surgery.
Prayer warriors - keep praying. I am feeling very defeated and attacked. What was becoming a story of a miraculous healing is crumbling in front of my eyes. I know "this is the plan" but it is very hard to cope with this plan that is being uncovered for us. It is nearly impossible to not ask why me? why our baby? I know I have to have faith in this plan, it is just becoming more difficult.
Friday, April 12, 2013
Weekly Check-Ups
We are well into our weekly check-ups and they are becoming more and more exhausting. The coordination of care for Gavin (or having to bring him with us), Joe picking me up from work, going to the appointment, brining me back, working the rest of the day, blah blah. I know it is for the best and to make sure Evie is doing good in there, but this is exhausting!
2 weeks ago at my appointment we got the original tech that did our first US at this doctor's office. We LOVE her! She is so patient, loves explaining things to us and most importantly SHOWS us what she is seeing and talking about. We got to see some awesome pictures of Evie's back for the first time ever! We saw her SB in 3D! There is a covering over her spine, it is bubbling ever so slightly, which isn't good or bad, the best news of all is just that there is, indeed, a covering!
This tech re-measured her ventricles, which did grow slightly but they aren't nearly as large as the last tech that measured them. They are at 1.7 and 1.8 (ish). She measured them all different ways and those two numbers are pretty much the average of all of the measurements. We got to see Evie's hair on her head, she has a lot of it!
We spent a lot of time in the US and got to see lots of cool 3D images because this tech actually likes her job and takes her time!
Then we went to the NST test, sat there a while. My heart dropped a few times because Evie was acting crazy and her heart would go way up into the high 160s then drop down way low, like 110-120! The nurses said it was fine that it was just because she is so active.
Then we met with the doctor. This week we met with Dr. Vlastos (he is Dr. Nguyen's partner and also does the Fetal Care Institute that we go to - so very convenient). He walked in and the first thing he said was "Your babe looks awesome!" I had a frown on my face and said "no she doesn't!". He immediately asked why I would say that and I spilled my heart out that her ventricles were clearly growing and her spinal abnormality was growing and that it wasn't good and I was worried. I'm sure I babbled on for longer than just those few statements. He reassured me there is nothing to worry about and that this case of SB is a very good case (if there is such a thing) and that we are all good. He said the opening looks much larger on US because they zoom in so much to see it. So what is taking up the entire screen is really only the size of the first part of your thumb. He said the opening is very small and should be really easy for Dr. Elbaba to close up. He said not to worry about her ventricles because the size in the womb is not indicitive of whether or not Evie will need a shunt. So all in all, he really put us at ease. I once again tried convincing him that May 13th was a perfect day to have a baby (instead of May 20th - come on if you know us, you know 13 is our number!) but for the sake of Evie's health and not wanting to create any more problems the 20th it is! We really love Dr. Vlastos and love that he takes his time with us and answers everything so that I can understand it!
Before we left I asked him if he had gotten my 3 hour glucose test back. He looked in the computer, pulled up the results and flipped the screen so I could see it. All I saw at first was the word ABNORMAL highlighted in yellow. I said "Abnormal, are you kidding me? What do I have to do now?" All he could do was laugh, like belly-holding laugh at me because I was so mad. He said do you see the little "L" next to the word abnormal? I said yes. He said that means it was LOW, abnormally low, you are good, you passed! I said thank God! Glad he got a good chuckle because for about 30 seconds I was already missing pasta!
That was that. Next appointment was the following week (yesterday).
So yesterday we went back to get testing - wouldn't be meeting with the doctor this time. We had Gavin with us this time so we didn't have to have a family member rearrange their whole day for just an hour of testing (plus drive time). Gavin was good, as usual in public. He likes to watch everyone and what is going on. He didn't love waiting for me to get my NST but other than that, he was a good boy.
We didn't get the awesome tech but we didn't get the crabby rude one either, I'll take that as a win, although she wasn't too thrilled to be at work. She measured and checked Evie's breathing on US. Evie's ventricles didn't change over the week, great news! Her back looked the same, although it took her forever to find the spot and said it is VERY hard to see, also good! The US was rather quick this time but we did get a "thumbs up" picture - Evie must have known big brother was with us and wanted to let him know she was all good! We saw all her hair again, there's a ton! I hope they don't have to shave it all off if she needs to have a shunt implanted!
Then we went to sit and have my NST. I'll tell you what, having a NON-stress test while having a 1 year old with you probably isn't the best idea, but we passed and got out of there in no time. Gavin was happy to leave and decided he was going to lead us to the door. Crazy boy, acting like he owned the place!
I have another appointment with tests and meeting with Dr. Vlastos again next Wednesday then next Thursday we have our FINAL appointment at Fetal Care where we will meet with Dr. Elbaba again and get Evie's spinal closure surgery on his calendar.
I am so excited that time is flying and we will meet our angel in just 5 1/2 weeks but I am getting more and more scared of how our reality is about to be rocked! I knew it would be rocked just by adding another little life but with the increased medical attention that will be needed, I am starting to freak out and wish she could live in me forever, although I am done being pregnant already! We will figure this all out and know that we have an awesome God that has this all under control, because I sure don't!
2 weeks ago at my appointment we got the original tech that did our first US at this doctor's office. We LOVE her! She is so patient, loves explaining things to us and most importantly SHOWS us what she is seeing and talking about. We got to see some awesome pictures of Evie's back for the first time ever! We saw her SB in 3D! There is a covering over her spine, it is bubbling ever so slightly, which isn't good or bad, the best news of all is just that there is, indeed, a covering!
This tech re-measured her ventricles, which did grow slightly but they aren't nearly as large as the last tech that measured them. They are at 1.7 and 1.8 (ish). She measured them all different ways and those two numbers are pretty much the average of all of the measurements. We got to see Evie's hair on her head, she has a lot of it!
We spent a lot of time in the US and got to see lots of cool 3D images because this tech actually likes her job and takes her time!
Then we went to the NST test, sat there a while. My heart dropped a few times because Evie was acting crazy and her heart would go way up into the high 160s then drop down way low, like 110-120! The nurses said it was fine that it was just because she is so active.
Then we met with the doctor. This week we met with Dr. Vlastos (he is Dr. Nguyen's partner and also does the Fetal Care Institute that we go to - so very convenient). He walked in and the first thing he said was "Your babe looks awesome!" I had a frown on my face and said "no she doesn't!". He immediately asked why I would say that and I spilled my heart out that her ventricles were clearly growing and her spinal abnormality was growing and that it wasn't good and I was worried. I'm sure I babbled on for longer than just those few statements. He reassured me there is nothing to worry about and that this case of SB is a very good case (if there is such a thing) and that we are all good. He said the opening looks much larger on US because they zoom in so much to see it. So what is taking up the entire screen is really only the size of the first part of your thumb. He said the opening is very small and should be really easy for Dr. Elbaba to close up. He said not to worry about her ventricles because the size in the womb is not indicitive of whether or not Evie will need a shunt. So all in all, he really put us at ease. I once again tried convincing him that May 13th was a perfect day to have a baby (instead of May 20th - come on if you know us, you know 13 is our number!) but for the sake of Evie's health and not wanting to create any more problems the 20th it is! We really love Dr. Vlastos and love that he takes his time with us and answers everything so that I can understand it!
Before we left I asked him if he had gotten my 3 hour glucose test back. He looked in the computer, pulled up the results and flipped the screen so I could see it. All I saw at first was the word ABNORMAL highlighted in yellow. I said "Abnormal, are you kidding me? What do I have to do now?" All he could do was laugh, like belly-holding laugh at me because I was so mad. He said do you see the little "L" next to the word abnormal? I said yes. He said that means it was LOW, abnormally low, you are good, you passed! I said thank God! Glad he got a good chuckle because for about 30 seconds I was already missing pasta!
That was that. Next appointment was the following week (yesterday).
So yesterday we went back to get testing - wouldn't be meeting with the doctor this time. We had Gavin with us this time so we didn't have to have a family member rearrange their whole day for just an hour of testing (plus drive time). Gavin was good, as usual in public. He likes to watch everyone and what is going on. He didn't love waiting for me to get my NST but other than that, he was a good boy.
We didn't get the awesome tech but we didn't get the crabby rude one either, I'll take that as a win, although she wasn't too thrilled to be at work. She measured and checked Evie's breathing on US. Evie's ventricles didn't change over the week, great news! Her back looked the same, although it took her forever to find the spot and said it is VERY hard to see, also good! The US was rather quick this time but we did get a "thumbs up" picture - Evie must have known big brother was with us and wanted to let him know she was all good! We saw all her hair again, there's a ton! I hope they don't have to shave it all off if she needs to have a shunt implanted!
Then we went to sit and have my NST. I'll tell you what, having a NON-stress test while having a 1 year old with you probably isn't the best idea, but we passed and got out of there in no time. Gavin was happy to leave and decided he was going to lead us to the door. Crazy boy, acting like he owned the place!
I have another appointment with tests and meeting with Dr. Vlastos again next Wednesday then next Thursday we have our FINAL appointment at Fetal Care where we will meet with Dr. Elbaba again and get Evie's spinal closure surgery on his calendar.
I am so excited that time is flying and we will meet our angel in just 5 1/2 weeks but I am getting more and more scared of how our reality is about to be rocked! I knew it would be rocked just by adding another little life but with the increased medical attention that will be needed, I am starting to freak out and wish she could live in me forever, although I am done being pregnant already! We will figure this all out and know that we have an awesome God that has this all under control, because I sure don't!
Thursday, March 28, 2013
Being Tested
I am being tested and I am not a fan, repeat, NOT a fan! I guess the good news had to stop at some point, right??
Today I had my (now) weekly ultrasound and non-stress test (NST). What I thought was going to be no big deal ended up putting me in a completely foul mood.
It all started when we get to the doctor's office and the stupid parking lot is full and we had to park 2 floors under where it's all dark and dingy. I knew I was going to be annoyed from then on out - either that or I was already in a negative mood - not sure.
So we park, go up to the 4th floor, check in RIGHT ON TIME and then WAIT for 30 minutes. Last I checked my appointment was at 10:00 AM not 10:30. It's not like I was seeing the doctor today so I could convince myself to be calm and patient "because some day he may be late because of me" - No, we didn't need to see him. I simply needed to get my 2 tests and leave. So we waited, and waited and finally we get called back.
I got a GOOD tech this time - not the same ole crabby lady that I have gotten the past 2 times. She had a student with her to observe the ultrasound - not sure I was the best patient for that becuase I ask literally a million questions - but nonetheless, off we went...30 minutes after my scheduled appointment.
She's still a girl - that's about the only good news I got.
Where do I start???
I guess I will start at the ventricles. All along E's ventricles have been stable at barely over 1. 1 is the limit to be considered "normal" so any tiny measurement over 1 means NOT GOOD. All along the doctor has predicted that since her ventricles have been stable this whole entire time he doesn't expect them to get bigger and that if they did start getting to 2 or near 2 we would need to re-evaluate. Well guess what folks? We are at 2 and 1.85 now. Seriously, what in the world is going on??? So frustrated. This means less room for the fluid to drain off the brain, increased risk for everything under the sun and more than likely will need the brain surgery to implant a shunt after birth. None of this was on our radar before today because everything has been stable to this point.
Moving on - next we measured her tummy and bones and all of that and E is still measuring quite small for her gestational age. She should be around 4 1/2 pounds and she is just over 3. While most women would praise Jesus for a small baby, I need her to be fat so she can tolerate surgery better!
Then we got to her spine. Again, the past few doctors appointments we have been able to get a good measurement on the opening in her back. To this point it has been right at 1cm, maybe a little over and the doctor said it would probably grow a little bit just due to her getting bigger but it shouldn't be any larger than an inch at birth. Well guess what again? It is already an inch. Today it measured right at 3cm. Triple what it has been all this time. Yes her bones all still look good but the opening is getting bigger and bigger and this time it got huge. Very discouraging.
We learn all this information and we don't even see the doctor until next week. Thanks for dropping a huge bomb on me and then I don't even get to talk to the medical professional about it.
I have 7 1/2 weeks until my scheduled c-section and if things are going to grow and get this out of control now, what on earth will we be talking about in another few weeks???
Then I have to go get my NST. This is just to make sure that E's heart is doing what it's supposed to be doing and my contractions aren't too strong or frequent.
Takes forever to get the little monitors positioned correctly, but eventually they did get them on. We sit there for 20 minutes, supposed to be "relaxing" - um hey, word of advice if you want your patients to relax maybe you should do the NST before the ultrasound comes and drops a load of crap on them, just sayin'-
Sit there, her heart does fine, I have contractions but none that are that big, so nothing to worry about.
Then we get to leave. I have another ultraound, NST and some other test to measure the amniotic fluid next Friday and meet with the doctor at that appointment. At least I will be able to get some sort of insight after speaking with the doctor - hopefully.
I have my 3 hour glucose test this Saturday. I was right on the border of failing the 1 hour so they are making me do the 3 hour. I am not a happy camper about this.
Hopefully I get out of my funk real soon because when momma ain't happy, no one is happy :/
Here's our sleepy girl...
Today I had my (now) weekly ultrasound and non-stress test (NST). What I thought was going to be no big deal ended up putting me in a completely foul mood.
It all started when we get to the doctor's office and the stupid parking lot is full and we had to park 2 floors under where it's all dark and dingy. I knew I was going to be annoyed from then on out - either that or I was already in a negative mood - not sure.
So we park, go up to the 4th floor, check in RIGHT ON TIME and then WAIT for 30 minutes. Last I checked my appointment was at 10:00 AM not 10:30. It's not like I was seeing the doctor today so I could convince myself to be calm and patient "because some day he may be late because of me" - No, we didn't need to see him. I simply needed to get my 2 tests and leave. So we waited, and waited and finally we get called back.
I got a GOOD tech this time - not the same ole crabby lady that I have gotten the past 2 times. She had a student with her to observe the ultrasound - not sure I was the best patient for that becuase I ask literally a million questions - but nonetheless, off we went...30 minutes after my scheduled appointment.
She's still a girl - that's about the only good news I got.
Where do I start???
I guess I will start at the ventricles. All along E's ventricles have been stable at barely over 1. 1 is the limit to be considered "normal" so any tiny measurement over 1 means NOT GOOD. All along the doctor has predicted that since her ventricles have been stable this whole entire time he doesn't expect them to get bigger and that if they did start getting to 2 or near 2 we would need to re-evaluate. Well guess what folks? We are at 2 and 1.85 now. Seriously, what in the world is going on??? So frustrated. This means less room for the fluid to drain off the brain, increased risk for everything under the sun and more than likely will need the brain surgery to implant a shunt after birth. None of this was on our radar before today because everything has been stable to this point.
Moving on - next we measured her tummy and bones and all of that and E is still measuring quite small for her gestational age. She should be around 4 1/2 pounds and she is just over 3. While most women would praise Jesus for a small baby, I need her to be fat so she can tolerate surgery better!
Then we got to her spine. Again, the past few doctors appointments we have been able to get a good measurement on the opening in her back. To this point it has been right at 1cm, maybe a little over and the doctor said it would probably grow a little bit just due to her getting bigger but it shouldn't be any larger than an inch at birth. Well guess what again? It is already an inch. Today it measured right at 3cm. Triple what it has been all this time. Yes her bones all still look good but the opening is getting bigger and bigger and this time it got huge. Very discouraging.
We learn all this information and we don't even see the doctor until next week. Thanks for dropping a huge bomb on me and then I don't even get to talk to the medical professional about it.
I have 7 1/2 weeks until my scheduled c-section and if things are going to grow and get this out of control now, what on earth will we be talking about in another few weeks???
Then I have to go get my NST. This is just to make sure that E's heart is doing what it's supposed to be doing and my contractions aren't too strong or frequent.
Takes forever to get the little monitors positioned correctly, but eventually they did get them on. We sit there for 20 minutes, supposed to be "relaxing" - um hey, word of advice if you want your patients to relax maybe you should do the NST before the ultrasound comes and drops a load of crap on them, just sayin'-
Sit there, her heart does fine, I have contractions but none that are that big, so nothing to worry about.
Then we get to leave. I have another ultraound, NST and some other test to measure the amniotic fluid next Friday and meet with the doctor at that appointment. At least I will be able to get some sort of insight after speaking with the doctor - hopefully.
I have my 3 hour glucose test this Saturday. I was right on the border of failing the 1 hour so they are making me do the 3 hour. I am not a happy camper about this.
Hopefully I get out of my funk real soon because when momma ain't happy, no one is happy :/
Here's our sleepy girl...
Friday, March 8, 2013
Appointments Appointments! (I wish every title could be Praise Jesus!)
Yesterday were my appointments at the Fetal Care Institute (FCI) at Cardinal Glennon Children's Hospital. This was only my second time to their office, but I really love all the people there. Our nurse, Jenny, is beyond awesome - kind, gentle, patient - she just gets it. She understands we have a million questions and if she doesn't know the answer she will find out for me from someone who does!
(Joe's mom is still in the hospital so we didn't have anyone to watch him, so he stayed home with Gavin and my mom was able to take a few hours off work to go with me)
While at FCI I knew we were going to do a fetal echocardiogram. This is standard procedure for any baby diagnosed in-utero with SB. They just want to rule out any other abnormalities there could be. I wasn't nervous for some reason. I just knew her heart would be fine. And it was. We went to the Heart Center at Cardinal Glennon and they got on the ultrasound machine, took probably 100 pictures of Evie's heart and then the doctor came in and reviewed them. We couldn't hear everything the nurse and doctor were talking about but we did hear things like "this is perfect" and "come look at this image, this is exactly what this should look like". Glad my little wiggle worm proved to be half-way cooperative and allow them to get some pretty great images! At one point during the scan the nurse had to stop because Evie was kicking the probe. The nurse would get it positioned just right and then she would start kicking directly under it making the images blurry. It was pretty entertaining because it seems like Evie knows exactly when and where they are trying to look and she is saying "it's all good in here, leave me alone!"
So that was that, 45 minutes of watching the heart beat - not even getting to hear it much - and never really seeing any other portion of her sweet little body. It was worth it to hear the words "everything looks just like it should". We haven't heard that this entire pregnancy - until yesterday!
We then met with Dr. Vlastos. He is the head of the OB portion of the SB clinic at Cardinal Glennon. He also works in the same practice as my OB (Dr. Nguyen - pronounced Wynn - lol, makes us all laugh every time. He speaks very good English, on the phone you would probably think he was just a normal American like me! haha again, "normal" to be taken with a grain of salt I guess!). It was our first time meeting Dr. Vlastos - we have heard nothing but great things about him from some very dear friends of ours who had seen him in the past with a more severe SB case. We were very excited to meet him!
Dr. Vlastos came in with a latptop - I knew that meant good things were about to happen and they did! The man came in with a stinking powerpoint presentation on all the different forms of Spina Bifida, with images (that a normal person could understand) and explanations. A man after my mom and I's hearts! So he first asked us what questions I had - he didn't know what he was asking, apparently! I have very specific questions, I always do. I do my own research and want to know how that applies to our specific case. After he learned that I knew more than the "average Joe" knew about SB he decided it would be better to start with the powerpoint.
He explained to us the 3 main types of SB. Occulta - most people don't even know they have this type of SB until some sort of imaging is done on their spine later in life (perhaps after a car accident or something). This type of SB has no outer effects, no issues really present themselves in life. Then there is Meningocele. This is the most rare type of SB. The spinal cord is completely formed and lays protected by the spinal column. While the bones aren't completely formed and fused at the top (imagine a circle with an opening at the top, like a "U") the spinal cord lays like it should between the "U" and is protected. In most cases this type of SB has a skin layer or cyst covering the area. This type of SB has minimal nerve damage and minimal physical affects. This type may still require some bowel/bladder help. Then there is Myleomeningocele. This is when the spinal column is never fully formed/fused but the spinal cord is on the outside of the column rather than laying protected inside the column. The nerves float around and sort of buckle up and then go back down. This type of SB is the most severe and most common. This type also usually has a cyst or covering of some type.
So the doctor is trying to explain these three types to me and I am so bad at interrupting, but he just kept on going. He said that Evie's spinal cord is laying where it should - it is NOT outside the spinal column and does NOT buckle. The only thing keeping her back from a full blown diagnosis of Meningocele is that there is no cyst. You would be able to see the cyst or bubble like growth on ultrasound and you do not. I asked if they could just not be seeing the nerves coming out and that she could really have myleo and he said no. The ultrasound and fetal MRI I had would have revealed the nerves coming out. So she is in between Meningocele and well - I don't know what. She just isn't a cookie cutter case - which is good - our girl is unique :)
We talked for a while about all sorts of things, her brain looks good, ventricles aren't really an issue. Yes, one is slightly larger than 1cm - it is 1.1cm - go pick up a ruler and try to measure 1milimeter, because that's what we are talking here!
Then came the best sentence of the day from the doctor "If I had to have Spina Bifida, had no other choice, I would pick your babe's case." He says she will have a wonderful story to tell when she gets older because the probability of someone knowing from the outside that she has SB is very small! Can you believe it?!?!?! Mom and I were just kind of stopped in our tracks after he said that. He then asked if we had any more questions and at that point we were like, nope, not going to push it!
So I go back to FCI on April 18th. At that appointment I will meet with Dr. Vlastos again and Dr. Elbaba (the pediatric neurosurgeon) that will be closing Evie's back and watching to see if she needs shunt placement after birth. I will be around 36 weeks pregnant at that appointment and that will be my very last appointment at FCI. I can't believe how fast this is all going - appointment is NEXT MONTH! Holy cow!!!
________________________________________________________________________
Today I went to see my doctor, Dr. Nguyen. It was for my normal ultrasound and check-up. I also had to have the glucose test ( I thought I was going to be able to sneak out of this pregnancy without since we are looking at so many other things, but they remembered!). We got the same crappy tech we had the last time, so we knew not to ask any questions during the ultrasound because she wouldn't answer them anyways. We just watched everything she was measuring and tried to see for ourselves so we could ask the doctor!
Ultrasound was good, Evie's heart was good, and we got a few 3d pictures of her - that's my favorite part!
We then met with Dr. Nguyen. He came in and said the ventricles were pretty much the same. They were measuring slightly larger but that all depends on the tech and how they measure. The "defect" in her back was about the same as well, maybe a tiny bit bigger, but again, depends on where and how the tech measures each time. The fluid around her brain is the same, everything is pretty much the same, which is pretty good news!
We did, however, get 1 piece of news that has changed DRAMATICALLY since any of our other appointments. (remember, when all of this first got diagnosed they thought E had Myelo with a completely open spine. The first images showed her spine just ending, literally ending, there is a black hole where her spine should have been on the pictures I have. No joke, 2 different facilities, 2 different techs, 2 different doctors, all saw the same thing - her spine ending, no covering, completely open. We then got our AFP results back and they said "well she probably has some thin layer of something over her back we just can't see it".
AND TODAY..........
What did they see??????
A COVERING! WE SAW THE COVERING OVER HER BACK! The doctor now believes there is skin covering her back and that the "defect" is a closed one! All of her vertebrae are there - no black hole. There is still an area where the vertebrae did not completely fuse together, but they are there!!!! The doc says this should be a pretty easy fix for the neurosugeon! PRAISE JESUS!!!
Dr. Nguyen also said (again) that her back is so minor if it weren't for the signs in her brain they would have never seen this. They can barely see it on ultrasound or on the MRI! So that means (to me and you and any person without a medical degree) that functionally, she should be pretty "normal" without many delays! We are over the moon about this! What mom doesn't have dreams of their little girl playing soccer or doing gymnastics? I think we all want that for our kids. And while I know there are ways to accomodate a child with SB how wonderful would it be for her to attend the classes her friends do?! We will still have concerncs of whether or not she will need a shunt and catheterization may still be part of our lives but our girl may function, physically, just fine!
Joe and I just can't believe this. We were in tears on the way back to drop me off at work. Was her case destined to be a minor case all along or does our God just perform awesome miracles still?! I think we all know the answer to the question - there is no doubt our God is just THAT awesome! We saw the images, the doctors saw the images, and now look at her! A miracle!
Joe and I both feel like we got this miracle because of 1) an AWESOME God and 2) an AWESOME church! I wonder if this big of a miracle comes from every church? I mean DC experiences some of the most awesome miracles and I just think God is all over that church watching over its people! We both knew we were meant to be in Republic when we were, but now it is more apparent than ever! We met the most amazing friends and were introduced to an amazing church with a people that pray like none other!
Thanks for all the prayers everyone, they have worked and will continue to work! We can't wait to meet our sweet girl and it seems as though that time is right around the corner!
I go to my next regular appt in 2 weeks then start the twice weekly appointments. Praying that our co-pay is still waived for all of those appointments!
Much love to all and thanks for the continued prayers :)
(Joe's mom is still in the hospital so we didn't have anyone to watch him, so he stayed home with Gavin and my mom was able to take a few hours off work to go with me)
While at FCI I knew we were going to do a fetal echocardiogram. This is standard procedure for any baby diagnosed in-utero with SB. They just want to rule out any other abnormalities there could be. I wasn't nervous for some reason. I just knew her heart would be fine. And it was. We went to the Heart Center at Cardinal Glennon and they got on the ultrasound machine, took probably 100 pictures of Evie's heart and then the doctor came in and reviewed them. We couldn't hear everything the nurse and doctor were talking about but we did hear things like "this is perfect" and "come look at this image, this is exactly what this should look like". Glad my little wiggle worm proved to be half-way cooperative and allow them to get some pretty great images! At one point during the scan the nurse had to stop because Evie was kicking the probe. The nurse would get it positioned just right and then she would start kicking directly under it making the images blurry. It was pretty entertaining because it seems like Evie knows exactly when and where they are trying to look and she is saying "it's all good in here, leave me alone!"
So that was that, 45 minutes of watching the heart beat - not even getting to hear it much - and never really seeing any other portion of her sweet little body. It was worth it to hear the words "everything looks just like it should". We haven't heard that this entire pregnancy - until yesterday!
We then met with Dr. Vlastos. He is the head of the OB portion of the SB clinic at Cardinal Glennon. He also works in the same practice as my OB (Dr. Nguyen - pronounced Wynn - lol, makes us all laugh every time. He speaks very good English, on the phone you would probably think he was just a normal American like me! haha again, "normal" to be taken with a grain of salt I guess!). It was our first time meeting Dr. Vlastos - we have heard nothing but great things about him from some very dear friends of ours who had seen him in the past with a more severe SB case. We were very excited to meet him!
Dr. Vlastos came in with a latptop - I knew that meant good things were about to happen and they did! The man came in with a stinking powerpoint presentation on all the different forms of Spina Bifida, with images (that a normal person could understand) and explanations. A man after my mom and I's hearts! So he first asked us what questions I had - he didn't know what he was asking, apparently! I have very specific questions, I always do. I do my own research and want to know how that applies to our specific case. After he learned that I knew more than the "average Joe" knew about SB he decided it would be better to start with the powerpoint.
He explained to us the 3 main types of SB. Occulta - most people don't even know they have this type of SB until some sort of imaging is done on their spine later in life (perhaps after a car accident or something). This type of SB has no outer effects, no issues really present themselves in life. Then there is Meningocele. This is the most rare type of SB. The spinal cord is completely formed and lays protected by the spinal column. While the bones aren't completely formed and fused at the top (imagine a circle with an opening at the top, like a "U") the spinal cord lays like it should between the "U" and is protected. In most cases this type of SB has a skin layer or cyst covering the area. This type of SB has minimal nerve damage and minimal physical affects. This type may still require some bowel/bladder help. Then there is Myleomeningocele. This is when the spinal column is never fully formed/fused but the spinal cord is on the outside of the column rather than laying protected inside the column. The nerves float around and sort of buckle up and then go back down. This type of SB is the most severe and most common. This type also usually has a cyst or covering of some type.
So the doctor is trying to explain these three types to me and I am so bad at interrupting, but he just kept on going. He said that Evie's spinal cord is laying where it should - it is NOT outside the spinal column and does NOT buckle. The only thing keeping her back from a full blown diagnosis of Meningocele is that there is no cyst. You would be able to see the cyst or bubble like growth on ultrasound and you do not. I asked if they could just not be seeing the nerves coming out and that she could really have myleo and he said no. The ultrasound and fetal MRI I had would have revealed the nerves coming out. So she is in between Meningocele and well - I don't know what. She just isn't a cookie cutter case - which is good - our girl is unique :)
We talked for a while about all sorts of things, her brain looks good, ventricles aren't really an issue. Yes, one is slightly larger than 1cm - it is 1.1cm - go pick up a ruler and try to measure 1milimeter, because that's what we are talking here!
Then came the best sentence of the day from the doctor "If I had to have Spina Bifida, had no other choice, I would pick your babe's case." He says she will have a wonderful story to tell when she gets older because the probability of someone knowing from the outside that she has SB is very small! Can you believe it?!?!?! Mom and I were just kind of stopped in our tracks after he said that. He then asked if we had any more questions and at that point we were like, nope, not going to push it!
So I go back to FCI on April 18th. At that appointment I will meet with Dr. Vlastos again and Dr. Elbaba (the pediatric neurosurgeon) that will be closing Evie's back and watching to see if she needs shunt placement after birth. I will be around 36 weeks pregnant at that appointment and that will be my very last appointment at FCI. I can't believe how fast this is all going - appointment is NEXT MONTH! Holy cow!!!
________________________________________________________________________
Today I went to see my doctor, Dr. Nguyen. It was for my normal ultrasound and check-up. I also had to have the glucose test ( I thought I was going to be able to sneak out of this pregnancy without since we are looking at so many other things, but they remembered!). We got the same crappy tech we had the last time, so we knew not to ask any questions during the ultrasound because she wouldn't answer them anyways. We just watched everything she was measuring and tried to see for ourselves so we could ask the doctor!
Ultrasound was good, Evie's heart was good, and we got a few 3d pictures of her - that's my favorite part!
We then met with Dr. Nguyen. He came in and said the ventricles were pretty much the same. They were measuring slightly larger but that all depends on the tech and how they measure. The "defect" in her back was about the same as well, maybe a tiny bit bigger, but again, depends on where and how the tech measures each time. The fluid around her brain is the same, everything is pretty much the same, which is pretty good news!
We did, however, get 1 piece of news that has changed DRAMATICALLY since any of our other appointments. (remember, when all of this first got diagnosed they thought E had Myelo with a completely open spine. The first images showed her spine just ending, literally ending, there is a black hole where her spine should have been on the pictures I have. No joke, 2 different facilities, 2 different techs, 2 different doctors, all saw the same thing - her spine ending, no covering, completely open. We then got our AFP results back and they said "well she probably has some thin layer of something over her back we just can't see it".
AND TODAY..........
What did they see??????
A COVERING! WE SAW THE COVERING OVER HER BACK! The doctor now believes there is skin covering her back and that the "defect" is a closed one! All of her vertebrae are there - no black hole. There is still an area where the vertebrae did not completely fuse together, but they are there!!!! The doc says this should be a pretty easy fix for the neurosugeon! PRAISE JESUS!!!
Dr. Nguyen also said (again) that her back is so minor if it weren't for the signs in her brain they would have never seen this. They can barely see it on ultrasound or on the MRI! So that means (to me and you and any person without a medical degree) that functionally, she should be pretty "normal" without many delays! We are over the moon about this! What mom doesn't have dreams of their little girl playing soccer or doing gymnastics? I think we all want that for our kids. And while I know there are ways to accomodate a child with SB how wonderful would it be for her to attend the classes her friends do?! We will still have concerncs of whether or not she will need a shunt and catheterization may still be part of our lives but our girl may function, physically, just fine!
Joe and I just can't believe this. We were in tears on the way back to drop me off at work. Was her case destined to be a minor case all along or does our God just perform awesome miracles still?! I think we all know the answer to the question - there is no doubt our God is just THAT awesome! We saw the images, the doctors saw the images, and now look at her! A miracle!
Joe and I both feel like we got this miracle because of 1) an AWESOME God and 2) an AWESOME church! I wonder if this big of a miracle comes from every church? I mean DC experiences some of the most awesome miracles and I just think God is all over that church watching over its people! We both knew we were meant to be in Republic when we were, but now it is more apparent than ever! We met the most amazing friends and were introduced to an amazing church with a people that pray like none other!
Thanks for all the prayers everyone, they have worked and will continue to work! We can't wait to meet our sweet girl and it seems as though that time is right around the corner!
I go to my next regular appt in 2 weeks then start the twice weekly appointments. Praying that our co-pay is still waived for all of those appointments!
Much love to all and thanks for the continued prayers :)
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