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!
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)
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!
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 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 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!
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...
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!!!
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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 :)
So we went to the doctor again yesterday. For some reason, I was expecting terrible news as we have gotten pretty descent news to this point. My thought process was that it isn't always going to be rainbows and butterflies so I was trying to prepare for not great news. I have been so strong in the past and known that I was meant to have our sweet angel but yesterday I did not have that feeling. I was mad that our baby girl was going to have so many "issues" and mad that I wasn't getting a perfectly healthy baby. So needless to say, the mood I was in at this appointment started off a lot differently than in the past.
We got to the appointment and they told us no co-pay! I was not about to argue with the lady. I had just gotten the news from our benefits manager at work that since it is a medical necessity and not "normal maternity services" I would have to pay the $60 co-pay at EVERY SINGLE VISIT! By the time we had Evie that would have been over $1,000 out of pocket that doesn't count towards deductibles or max out of pocket or anything. So when the lady at the front desk said "and you have no co-pay today" I just smiled and ran to my seat hoping she wouldn't find a mistake.
We went back for the ultrasound and I quickly realized I wasn't going to be lucky 2 appointments in a row with an awesome tech. We had a lady that was very rude and was not appreciative of all of our questions. She didn't tell us what she was looking at and when we asked she promised she would tell us but then never did. So we had to wait to talk to the doctor to find anything out. All we learned was that Evie was 2 pounds and measuring about a week behind. She has been measuring small the entire pregnancy (she can blame it on herself for making mommy sick all the time) so I wasn't too alarmed. She printed pictures for us (after my doctor told her to) and then we had to wait for the doc.
We got to our room and waited for about 10 minutes, but we were early anyways. My doctor came in at his scheduled time and said "what questions do you have?" I love that he always wants to get my questions out of the way and then talk and then more questions - I love asking my questions :)
My first question: Is her head fully formed? In the 3D pictures it looks like her head doesn't match up and there is a hole in it on the top. I know that there is a condition that is closely related to SB that can cause the head not to fully form so that is always on my mind. He assured me (after lightly laughing at me) that her entire head was in tact and that the way the 3D ultrasound scans causes the image to look like it doesn't match up if the baby is moving. In case I haven't said before - Evie is a COMPLETE wigle worm! My ultrasounds take much longer than they are supposed to because they can never get a good look at her and she likes to hide her SB with her hand - she's a little shy about it still!
Second question: When will I have this baby? I was hoping for May 10th as that is my great-grandma's birthday, Evelyn, who we are naming Evie after - how cool would that have been?! He said since she is measuring small anyways he would rather not complicate things by having a baby that needed extra nutrition or breathing help. He said we will shoot for May 20th first thing in the morning that way the pediatric neurosurgeon will be in (it's a Monday) and if there happen to be any complications all the doctors she would need would be there for an entire week to get her all fixed up. I promised him I was just giving him trouble about the 10th and that the 20th was a perfectly acceptable due date! (things may change though)
Third question: What will my appointments start looking like - what's the plan? We all know I LOVE a good plan!!! I am 26 weeks today and my visits are already about to get crazy! We go back in 3 weeks to see the doctor - after that appointment I go to see and talk to my doctor every 2 weeks until I am 36 weeks then every week until I deliver. But that is just talking to the doctor. After my next appointment I have to go in TWICE a week to get fetal testing. Babies with SB have an increased risk of still-birth so they like to see her twice a week to make sure the fluid is all looking good and her heart is good. I will go twice a week for an ultrasound and fetal heart monitoring. They will listen to her heart for 30 minutes and do an ultrasound twice every week and then be on my way. Praying I don't have to pay a co-pay at each of those appointments because my bank account will not love that.
We then spoke about Evie's ultrasound and the findings. Her ventricles are stable - they haven't really grown in the past 4 weeks (one of them was 1/10 of a cm larger but that could just be the way that particular tech was measuring compared to the other). This is great news. The doctor said most of the time the ventricles don't increase in size over the pregnancy (they don't know why, just one of those mysteries of the brain). So if they are going to stay where they are at they are at the very TIP TOP of the "normal" range. This doesn't guarantee that she won't need a shunt but it is a good sign that she isn't having issues with draining the fluid from her brain. Again, all of this could change and the doctor always reminds me that the signs in-vitro aren't great indicators or predictors of how she will do outside of the womb.
Next up - her feet! I am obssessed with ensuring her feet are not becoming clubbed. I know that if they are that will require additional surgeries for her to be able to walk and I would just like to avoid any other complications at this point! Her feet are NOT clubbed! Her bones look great and perfectly straight (I think her feet look big!). So more GREAT news!
Lastly, her back. The area is still measuring the same, it didn't grow and the doctor said it won't necessarily grow. It could be 1cm like it is measuring now when she is born or it could grow a little bit. Either way, he believes the abnormality is only affecting 2 vertabrae. So again, a waiting game on the size! Then my doctor brought up our AFP results. He pretty much said he was shocked at how low they were and now believes there is some sort of thin covering over the abnormality on her back. He said the combination of those test results and my ultrasound on Friday he is pretty certain there is something there. In the ultraound you can kind of see something going over the back now. Not protruding like a cyst, but some covering going over the spine. This is WONDERFUL! That means her nerve endings that are not being tucked away and protected like they should cannot just float all around and be damaged out in the amniotic fluid. While amniotic fluid can still seep into her spinal cord (which is what causes the damage) it is great that they can't be all willy nilly out there getting crazy on us :)
This is pretty much best case scenario at this point. Ventricles stable, no clubbed feet, heart looks great, most likely a covering over spine and the area is not growing.
PRAISE JESUS!
Needless to say by the end of the appointment my no-good, sour attitude about this situation was gone and I was completely relieved. It was wonderful to get good news again and I am just so thankful! Prayers do work and our girl might have just minimal damage due to this new-found covering! Again, only time will tell and we won't know the extent of her SB until she is almost a year old, but at least we have great signs now that can predict she will have pretty good function!
I have now started my insance project of making Evie's bedding. We calculated how much fabric we needed last night and we are going to make a trip to JoAnn's after lunch to get the solid colors I need and place the order for the prints next week. Wish me luck, I have a feeling I bit off more than I can chew but this was the only material I loved and we all know I have to love it to spend that kind of money!
I will continue to pray daily for our girl (actually multiple times a day - HA!) and believe that OUR GOD IS GREATER - because HE is!!
Much love to all!
Friday we have another appointment with my doctor where we will do the ultrasound and meet with him to discuss everything -- I am not sure why I am so nervous! I am more nervous about this appointment than I have been for any of my past appointments.
Before, we knew there were abnormalities with Evie's spine and we were going to fill our brains with as much information as possible to simply begin to sort out what her story would entail. Tomorrow is different to me, I guess....
Friday we have something to compare all of this to. We have a "starting" point from our previous ultrasound and then it will be compared to the ultrasound we get on Friday. While we have gotten great news to this point, for some reason I am having a hard time allowing myself to believe we will always get good news at every appointment so for some reason I have prepared myself for bad news this time around (as if the SB news wasn't bad enough? I don't know).
I am terrified. What if the opening suddenly grew? What if her ventricles inflated and her head is now considered abnormally large? What if her feet are clubbed now?
Before we had no expectations because we were just trying to figure all of this out. Now we have the expectation that our God is healing her, but what if all the healing is done and this is it?
I am not sure why I am finding this so difficult the past few days. I just can't get it out of my mind. You would think I would have emmense faith and know that everything is going to be just fine and that our sweet girl is being healed slowly, but I just can't muster that up inside of me. I guess at some point this positive person that is always finding the light and standing strong knowing that God is taking care of her has a weak moment? I can't always be the strong one. I am always having to tell the family and husband that it will all be ok, but when will someone tell me it will all be ok? Will it? Will it all really be ok?
I guess I need to spend a little extra time on my knees the next few nights to find peace for myself before I eventually break.
Today I am thankful -- thankful for a few things actually!
Remember my post about being frustrated that Joe had to work on Fridays and those were my doctor days?? Welllllll.......his work decided it was better for them if he worked Saturday - Tuesday! No more Fridays! I am beyond elated that he won't have to rearrange anything to go to my appointments and he will be there for me and baby E! Our next appointment is February 15th -- hoping not a thing changed (unless of course more healing is taking place, then I'll take it!)
I am also beyong thankful for some pretty amazing friends. We have been feeling kind of lost, spiritually, since we have been home. The church we used to go to when we lived here the first time was amazing, we loved it, couldn't wait to be back. We are back now but I can't say that it is the right place for us. My only thought is that we grew so much in our walk with Jesus being at DC in Republic that I just don't feel what I felt at DC. When I say we need a DC in St. Louis, I'm not kidding! So until we find a place to call "home" here, we will listen to the DC worship CD and then the podcast in hopes of creating our own DC in our living room! Now back to our amazing friends -- Joe and I went out to eat last Thursday and we were talking about a particular family that we miss dearly, I look over and tears are streaming down his face - right there, in the middle of Applebee's - tears. My husband - crying - in public - at the simple thought of how much he misses them...my heart broke. I knew how much of an impact they had made on my life and they (she) knows it too, but I had NO clue that he had that same emotion as me - I guess we need to talk more :) Anyways, right as we are feeling most down and most desperate for our friends to be back, I get a text from her just lifting us up. Sometimes people just know what to say and when - I can't imagine our lives without them. 300 miles will NOT let us lose the friendships we made. We miss all of you guys so much!
Speaking of feeling lost - I have been feeling attacked lately. I have been so positive about our journey with Evie and coming to the realization that we have been chosen for her but sometimes I can't help but find myself wishing I was having a "normal" baby. Then I hear Nicole's voice in my head saying "who decides what normal is - maybe she is the normal one and we aren't". I know she will be perfect in every sense of the word and I feel awful after those terrible thoughts go through my head. I then remember that I am extremely THANKFUL for this baby. The doctors said I couldn't have a baby then 3 years later we got Gavin and then they told me after his birth I was physically incapable of conceiving on my own and here I am 24 weeks pregnant with our perfect baby girl - all on our own. I am thankful for this miracle, but can't help but feel attacked lately...prayers appreciated :)
We have an exciting 3 weeks coming up and I am so ready! This weekend is the women's conference at DC in Republic. Joe's parents are watching Gavin for us while he works and I get to go see all of my friends in Republic and be blessed at an amazing conference. The next week we get to see our baby girl again and the week after that we get to see her yet again and our friends from Republic are coming to St. Louis! Time sure is flying and we have so much to do but I remain extremely thankful for everything that has been given to me!
**EDIT** I can't believe I published this post without mentioning how THANKFUL I am for my amazing parents! Both of my parents have more than stepped up to the plate with us moving home. They have rearranged their schedules and lives to accomodate my little family living in their basement. They have spent who knows how much money finishing their basement just for us and putting in whatever it is that we need down there to make it comfortable for us so that we can be there as long as possible to save money and pay off our debt once and for all. We are still finishing it up - painting and such - so my parents have sacraficed the last how ever many weekends to help with the basement. When Joe works they are the first to step in. I am a complete emotional mess lately and my mom can sense when I am at my breaking point and joyfully takes Gavin off my hands so I can have a mommy break. My sister and I used to never get along and were always at each other's throats and now we can see more eye to eye. While she makes me crazy because she is a typical teenager and doesn't always pull her weight around the house, she is usually a complete blessing to me and Gavin. She loves playing with G and always helps with things I shouldn't be doing like lifting dog food and carrying things up and down the steps. I have been beyond blessed with the most understanding, caring and helpful parents out there and I couldn't be more thankful for everything they have done and continue to do for me!
Last Friday while we were at the doctor I had my blood drawn for the Alpha-Fetoprotein test. The test results do not change our course from here on out, it simply provides us a little more information during our waiting game.
Today, the genetic counselor called me to give me my results. A normal AFP test (a child without an open neural tube defect) should expect the results to be no higher than 2.5. A child with some sort of thin covering should expect the number to be between 4-6 and a completely open defect should be expected to be between 8-10 (per my MFM doctor - I didn't just make those up!). My MFM doctor said he expected my number ot be between 8-10. While the numbers don't ALWAYS predict whether there is a covering or not or how thick or thin it is, the number does provide some information, generally speaking.
OUR NUMBER WAS 3.1!!!!!!
As I said, my doctor was expecting between 8-10! I can't wait until I seem him next to pick his brain on what he thinks this means. It is barely over what they consider normal.
While talking to the genetic counselor, she did say she has a patient right now that has a completely skin covered SB and her number was 1 something, so that means we aren't totally skin covered, but maybe, just MAYBE we have some thin layer of skin or sac or something that isn't showing on ultrasound providing some protection to our little angel's spinal cord rather than it floating all around.
The amniotic fluid is what causes all the damage to the nerves and cord and such. It is toxic. So if not a lot of protein is coming out to be measured in my blood, not a lot of amniotic fluid can be going in, right?! I know I am no scientist by any stretch of the imagination and sometimes my practical way of thinking can set me up for false hopes, but I really do think that my baby girl is being healed by Jesus and that is why the number is so low.
Now we will continue our waiting game, but it is somewhat comforting knowing that we blew the doctor out of the water with our number compared to his expectations...he just hasn't figured out that our baby is a MIRACLE baby yet :)
Keep the prayers coming....they are working!!!
OUR GOD IS GREATER!!!
Let's start with the good news. Joe started his job yesterday at KMOV here in St. Louis. He is a News Producer and they pretty much created the job just for him so that he didn't go work for a competitor because they didn't have a position for him open when he applied. He works Friday - Monday (Friday and Monday are daytime hours and Saturday and Sunday are afternoon/evening hours -- could be worse). He makes MORE money working part time at this station than he did in Springfield where he was pulling his hair out due to frutration, so that is always good. That means Gavin only has to be in daycare 2 days a week while Joe is at work so we are saving huge on daycare expenses in St. Louis - which I might add are CRAAAAAZY compared to Republic! So that's the good news.
The bad news is that my Maternal Fetal Medicine (MFM) doctor or "high risk OB" is only at his clinic on Fridays until 11:30 a.m. He teaches at SLU and does work at Fetal Care Institute (FCI) which is where Evie's doctors are. So there really isn't an alternate time we can go see him, it's Friday mornings or nothing. THIS BLOWS! Joe is the one that completely understands what the tech is saying and showing us during the ultrasounds. I know what to ask and can gather information but it sucks not having someone there to explain what they are seeing in a way that I can understand.
I know things could be a lot worse and I am SO thankful he has a job in the industry he loves, but Fridays, really? Why can't he work like Saturday - Tuesday?!?! His work knows about these appointments but I guess we can't be too picky since this job technically isn't even really a position.
My mom has said all along she would be at any appointments we wanted her at, looks like I will be taking her up on that offer. I just hate to interrupt her busy day because I know she is in meetings or trying to meet crazy deadlines every single day at work. I know this is important to her too and she wants to do whatever we need her to do, I just hate to ask her to attend these appointments with me because the later in pregnancy I get the more frequent they are. I guess we will cross that bridge when we get to it. In the meantime I am just frustrated that Joe can't be at my appointments :(
UGH!
We went to the doctor again on Friday, just 8 days since I had seen all the specialists at the Fetal Care Institute. The doctor we saw was my "high risk" maternal fetal medicine doctor. We loved him when we met him at FCI and he happens to have a practice so I decided to keep him for consistency and just becuase!
While at his office I had another ultrasound. For the first time EVER, Evie decided she would cooperate without too much hoaxing! She was wiggling like crazy but our tech was the best yet and was able to keep up with her. The tech was explaining everything she was seeing, and we were, of course, asking a million questions.
Right now we know enough to get us in trouble. We know that we need to keep an eye on the ventricle sizes and that they are maxed out for what is considered "normal" so we don't want them any bigger. We know that her head size is great right now and that we don't want any more fluid build-up around her brain. We know how to correctly view her feet and leg bones to check for clubbed feet...so again, we know enough to get us in trouble and ask thousands millions of questions during the ultrasound! Our tech was great, she was glad we were so informed and she gladly answered all our questions and showed us exactly what she was seeing.
Evie's head was checked, her ventricles were the same. While this is GREAT news, it was only 8 days since the last check, so the doctor wasn't expecting any big changes. Her head still looks like a little lemon, but the fluid is stable and her head size is still good.
The tech was telling us all about her brain and I was like great, moving on, can we look at her little back -- afterall, that is what the BIGGEST issue is! I kept asking and asking how her back looked, where it was looking like the abnormality was and so on. She kept saying she couldn't see anything!!!!!!!!!!!!!!! She said "I can see some widening, but it's not alarming" so she pulled out a different probe and put it in my belly button. It wasn't that uncomfortable for me but Joe said it looked painful. It was with that probe she could FINALLY see the "abnormality" and was actually able to measure the size of the opening.
The opening in Evie's back is less than 1cm right now. While it will grow, the doctor said it will only be the size of 2 vertabrae and on a baby that should be about an inch, maybe a little bigger maybe a little smaller.
This is the most AMAZING news we have gotten. The tech kept saying if it wasn't for the signs in E's head she would have never thought she had SB. It is wonderful that we have these fantastic doctors at our finger tips and they are able to prepare us and baby girl for her upcoming fight. What is completely insane is that Joe, my mom and I all saw the abnormality just 8 days prior without any special probes. It was pretty big and it looked like her spine just stopped and then started. It was quite literally a black hole in the ultrasound and now everything was there....the tech even pulled in my doctor to look for himself. He said that before it looked like her spine just stopped and now it was all there.
CAN WE SAY THIS IS A MIRACLE IN THE MAKING?!?!?!
I saw it, we all saw it. Her spine was not there just 8 days earlier. It was the same machine, the same doctor viewing and reading the images, I swear, this is a stinkin miracle!
I would like to be face to face with ANY person that does not believe in our amazing GOD! I will show them the pictures myself, I will tell them myself....HE is here, HE is real, HE is in the business of miracles. If he is interested in healing my baby girl who hasn't even set foot on our soil or breathed our air, HE is interested in saving EACH of us! I promise, this is a miracle! My baby girl is being healed right in front of our eyes! I don't know how else to explain it, there isn't any medical reason her spine magically appeared.
While we understand, with SB things are constantly changing, at least her opening is little and her spine is there. Common sense would tell us all the smaller the area is open the less damage can be done to the nerves that float in and out of that opening.
We go back to my doctor again February 15th for another ultrasound and to meet with the doctor. I then go back to FCI to meet with Evie's doctors on February 21st. I love that I get to see my baby girl all the time now. While it is under the least of ideal circumstances, at least I get to see her sweet face (I think she already looks like me!) They print us pictures every visit...here is a picture of our sweet girl praising Jesus with a smirk on her face! (the part that looks like is on her face and above her head is her cord, don't be alarmed :))
Since we found out the news of Evie having Spina Bifida we have had countless people praying for us and our sweet girl. While most people don't think about what to actually pray (it just comes to them naturally) I sometimes have problems with knowing where to start or what to say or ask for.
A good friend of ours we met during our time in Republic posted a prayer she had been praying for Evie...I thought I would share as it is so specific to her and her needs and for those of us that need a place to start or would like to join us in prayer it is a fabulous little prayer!
"Lord, because You have instructed us in Your word that we are to pray for one another so that we may be healed, I pray for healing and wholeness for Evie. I pray that sickness and infirmity will have no place or power in her life. Ipray for protection against any diease coming into her body. Your Word says "He sent His word and healed them, and delivered them from their destructions" (Psalm,107:20) Wherever there is disease, illness, or infirmity in her body, I pray that You, Lord, would touch her with Your healing power and restore her to total health. Deliver her from any destruction or injury that could come upon her. Specifically I ask You to heal her spine and back. If she is to see a doctor, I Pray that You, Lord, would show us who that should be. Give that doctor wisdom and full knowledge of the best way to proceed. Thank You, Lord, that You suffered and died for us so that we might be healed. I lay claim to that heritage of healing which You have promised in Your word and provided for those who believe. I look to You for life of health, healing, and wholeness for Evie."
Thanks again to all of you out there praying for our girl. She truly is our miracle. We know she was sent to us for a reason. It took a long while to accept the fact that we were chosen to be her parents for a reason, but I do think we are finally sitting in the right frame of mind. I believe our God is healer and I know that He has a plan for our little angel.
(On a side note: I listen to this song ALL.DAY.LONG -- it's my anthem for my girl!!! -- enjoy!)
Lots of love to you all!
