Saturday, June 15, 2013

Does Anything Ever Go As Planned????

Tuesday morning Evie's home-health nurse came by to check on her. She comes once a week and has been a true blessing to us.  Even if it is just our weekly reassurance that her back looks good and we are doing everything correctly...I need that.  So, she came on Tuesday and did the usual, weighed Evie (11lb 11oz - what a piggy!) and looked at her back, all is looking well, and then measured her head (as usual).

Her head circumference was 2 cm bigger than it was on Friday when the home-health nurse was at our house. This was quite alarming as her head was only growing about 1 cm PER WEEK up until this point.  We knew she had hydrocephalus but it was a slow growth of her ventricles and Dr. Elbabaa decided it would be best to have her back fully healed before surgery. The plan was to wait it out until July 2nd and place a shunt at that time if her head had grown any more. We were prepared for shunt placement for the 2nd.

So, since her head grew so dramatically I thought I better call Dr. Elbabaa just to let them know.  I spoke to his nurse Rachel (love her!) and she asked me if she was acting normal otherwise, she was, so we decided to continue to watch her but that if Evie started vomitting with eating we needed to call her back.  Low and behold, I feed Evie about 20 minutes later and she pukes 3 times, coming out her nose and all. 

I called Rachel back (after much convincing from Joe - I felt so stupid for calling back so soon) and she said to come in to clinic (Dr. Elbabaa has a neuro clinic on Tuesdays and this prevented us from having to pay the stupid ER co-pay). She told me to get there ASAP and to have a bag packed....I knew what that meant.  I called Joe to let him know to meet us there after work and my mom was already on her way. My dad offered to drive us there so we didn't get stuck with 2 cars at the hospital and we were off.

We got to clinic and they measured her head again, it was actually about a half cm bigger than what I had thought.  They thanked us for coming in and said that we were on top of the game and good job for knowing when to call.

Dr. Elbabaa came in (with 4 other doctors/nurses - that made for 8 people in a tiny exam room) and he said we needed to place a shunt....TOMORROW! He asked if I was prepared for the hospital stay that night because he wanted to admit Evie right then. I said I sure was because Rachel told me to pack a bag. Dr. E laughed and said "if only all my parents did what Rachel said!" Made me laugh.

They admitted us to TCU (Transitional Care Unit - like ICU step-down) room 3200 and we were going to be there until Thursday as long as everything went well.  Surgery was planned for 9:30 am on Wednesday. 

Once in our room in TCU a nurse came in to get an IV started for Evie because they needed labs in order to procede with surgery and they would obviously need an IV for the surgery.  To make a long story (a 5 hour story) very short, no nurse could get an IV started. They tried 7 different times, causing my girl to scream her head off each time. They gave her a rest and ordered the tests they could to be collected via heal prick instead. This caused her heals to get poked around 15 times but there was still 1 test that HAD to be drawn by IV. This meant we had to get a nurse in there to have an IV started before the morning to get the test run and get enough antibiotics in Evie (since her wound on her back is still partly open, her risk for infection is higher so they wanted more antibiotics).

At about 9:30pm a nurse from the transport team (the same team that brought her over to Cardinal Glennon after she was born) happened to be walking down the hall delivering a patient and asked if anyone needed anything. Well, actually we do, thanks for asking! She came in to Evie's room and got everything ready, I told her she was being pretty optomistic getting the tape ready and everything and she winked at me - like "I got this". 

One poke, no digging around, and she had the IV in. She drew the blood from the IV and then sealed it off. So now, by the grace of God, she had her blood for her final test and the IV. THANK GOD!!!! My heart was already broken from watching Evie in pain all night and now we were set.

[side note from the night - we spoke to the plastic surgery department who said
Evie could be released to her back for surgery and for the purpose of getting an IV in and then could recover on her side after surgery for a few days and then be released to her back full time.  This allowed me to hold her for the very first time like a "normal" baby.  We video-taped the nurse flipping Evie to her back for the first time - we both cried. I had never seen my daughter's full face since she was born - 5 weeks ago.  It was wonderful, I was glad to see her but it also made me sad because I saw how big her head really was.  It was quite difficult to judge the size of her head when she was on her tummy and you could only see part of her face at a time. At this point I was happy with our decision to proceed with the shunt a few weeks early.]

Wednesday morning Dr. Kemp (neuro doc) came in to mark Evie's head for surgery.  We waited around a bit in the morning and they were ready for us at about 9:00 am - holy cow, we were actually going to be on time! We walked her down to the OR holding area and then watched her get wheeled back.  I felt helpless but knew it was what she needed to feel better. [the doctor said she has probably had an enormous headache for a few weeks due to all of the pressure on her brain from the fluid]

She got wheeled back around 9:45 and we got the call at 10:00 am that they had just started surgery.  At 10:37am Dr. Elbabaa came and got us from the waiting room, they were already done! That was lickity split! They had us prepared for a 2 hour surgery!

Dr. Elbabaa said everything went perfectly. When he placed the shunt in her ventricle a lot of fluid came off the brain. They put the valve on a setting that drained a minimal amount of fluid just to make sure she would not drain fluid too fast.  [her shunt is the "fancy" kind that can be programmed by a magnet on the outside of her head preventing multiple surgeries to correct the amount of fluid drained].

We saw Dr. Elbabaa again that evening and he reassured us everything was looking great. As long as Evie continued to eat she would be able to go home in the morning.

Thursday morning came quickly and Evie was still eating great.  We saw Dr. Elbabaa and Dr. Kemp again.  They scheduled Evie for a head ultrasound to take a look at her ventricles and make sure the size was going down.  They decided to re-program her shunt to allow more fluid to be drained because it wasn't making the progress they expected. It was no big deal, easy peasy and they said the discharge orders would be entered.

We all know hospitals don't work quickly so we didn't get out of there until 3:30 in the afternoon but that's fine.  Dr. Kemp sent orders to the medical supply place to let them know Evie didn't need her apnea monitor anymore and we were off!

We got home, got her situated, Joe went to pick up Gavin and we just tried to keep Evie comfy the rest of the night.

Yesterday we took of the dressings on her head and tummy (incision on the head to place the catheter and the valve and on her tummy to make sure the tubing from the valve to her tummy was where it needed to be and to coil up the extra tubing - there needs to be extra to accomodate growth). She did pretty good all day yesterday but was still kind of clogged up from the anesthesia so the night time was a little rough.

She is now comfortably sleeping in front of me and we are so excited that she can go to her back tomorrow! We will get to hold her like a normal baby!! YAY!!!  Her back is continuing to heal and much to my surprise it doesn't look any different than before. I was so worried we would mess something up. 

Even though this didn't go as planned as to the date, everything about the surgery went perfectly according to plan.  I guess my girl likes to be 2 weeks early for all of the plans I make for her. She came 2 weeks ahead of her scheduled delivery and now she wanted her shunt 2 weeks early as well.  We are now on the road to recovery and hoping this one is much faster than what we have been dealing with for her back.

Thank you so much to all of the prayer warriors out there especially on Tuesday during a very difficult time for us.  God is working a miracle in our girl - you watch, she WILL walk!! Much love to you all!

Monday, June 10, 2013

Evie at 1 Month

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!

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!

Evie on the exam table at clinic.  Since we can't dress her, we have to have headbands and bows galore :)

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!


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!

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!

 Our empty room as we left.