Thursday, April 18, 2013

Last Appointment at FCI!

I can't believe we just went to our very last appointment at FCI! It seems like yesterday we were walking in there more scared than ever and sat through an entire days worth of appointments, crying so much we couldn't think straight and hearing a lot of "I don't knows".

Today was different.

I was strong and we got some answers to questions that we had accepted "I don't know" as the answer to!

We went there thinking we were going to be meeting with Dr. Vlastos again and Dr. Elbaba (the pediatric neurosurgeon).  But Dr. Vlastos didn't need to see us again, we weren't sure why we would have seen him 2 days in a row anyways, and Dr. Elbaba wasn't able to be there so we met with his nurse, Rachel.

Rachel is awesome and knows so much. If I couldn't see Elbaba, she is the next best! She was able to answer so many questions for us and we didn't even have to ask them, it was all just part of her speal!  So here goes.

Evie's surgery is scheduled for 2pm on May 20th.  My c-section is at 10:30 and we all know nothing ever goes on time.  This is good and bad.  I say bad for selfish reasons because it is mostly wonderful that her surgery is at 2!  This means we will probably not have the full 2 hours to bond with her before she is taken from me and transferred to Cardinal Glennon but this means that her back will be closed SO soon and she will be on her road to recovery much sooner than we expected! She will not be able to eat until late in the evening on the 20th or early morning on the 21st.  They will attempt to feed her with a bottle; however, since she has to be on her tummy post-surgery for at least 24-48 hours it all depends whether she figures out how to latch on to the bottle while laying on her tummy with her face sideways.  If she can't, they will place a feeding tube until she can be on her side or back and at that time I can even attempt to nurse her! This is wonderful news! We had been told that I may not be able to attempt to nurse for up to 2 weeks, now we are talking only 2 days!

Rachel believes I should have the chance to hold Evie for a short period of time before they request she stay on her tummy.  We weren't sure if we would be able to hold her, but as of now we can!

After surgery she will stay on her tummy and if her incision is healing well then they will gradually begin to rotate her to her side after 24 hours (longer if needed) and then after a few days on the side she will get to lay on her back.  Depending on her recovery we could be out of NICU as soon as a week but may be there more like 2 weeks. It just all depends, but we do have a much better understanding of what indicators to look for to gain an idea on time table for being discharged.

At discharge she will be sent home with a donut shaped insert for her car seat to relieve the pressure on her incision.  We had always wondered if we needed a special seat and everyone said "I don't know".  Well now we know! The answer is NO! Good thing too because I already got her a seat!

As far as the shunt to help drain the fluid from her brain....Dr. Elbaba likes to wait as long as possible to see if the child can figure out for itself how to accomodate the fluid after the spinal closure surgery.  A lot of times babies have shunts implanted when they may not have needed it in the long run.  Since babies have such pliable heads no brain damage will occur while we are in the wait and see phase.  If Dr. Elbaba determines from MRI and ultrasound that Evie doesn't need a shunt and she is eating and sleeping well then he will discharge her and see her back weekly to keep assessing her ventricles to make sure we don't need to intervene.  We love that the doctor is so willing to give the babies a chance instead of doing a brain surgery right away that might not be necessary. 

Rachel said she has seen it all different ways. Sometimes the brain actually improves after spine closure surgery, sometimes it gets worse fast and a shunt is needed before discharge and sometimes the child is stable but needs one later. This is one of those wait and sees, but it is nice to know there is a plan of attack. I like plans.

After discharge we will either go to the Neurosurgery clinics on Tuesday mornings or the actual Spina Bifida clinic on Wednesday afternoons. This all just depends on how she is doing and what doctors she needs to see.  The clinics are great because doctors of all different practices are in the same place so that we don't have to go running around to see everyone. It is just a day of doctors!

Rachel thinks we should be able to take Evie on a trip to Springfield towards the end of my maternity leave as long as her spine is closing well and her fluid is stable.  We will have to stop frequently to get her out and relieve the pressure off her back, but what family can not stop frequently with a one year old and a baby???

Rachel said that our case of Spina Bifida is a great case and that the lesion is low enough to where the prognosis for walking is very good. 

After we met with Rachel we met with our nurse, Jenny.  She just told us good luck and that many prayers were being sent our way.  Another few nurses came in and said that we didn't know them but they felt like they knew us from reading our file and hearing all the wonderful things the other nurses had to say about us.  They all asked if we would bring Evie for a visit.  It's so crazy how I just met all these people less than 4 months ago, had only 3 appointments and I feel like we have such a bond.  God truly placed a lot of wonderful people in our lives!

I feel very prepared after our appointment today.  I feel like I have the plan of attack all ready to go from my c-section through surgery and even a few days post-surgery. I feel less like my world is spinning out of control and know that God is slowly revealing his plan to us.  I hate being patient, definately not one of my strong suits, but I am thankful that I have made it this far with very little of the plan known!

Thank you all for the continued prayers for our family and our little miracle baby! She is going to be here before we know it!

Wednesday, April 17, 2013

Not What I Wanted to Hear....

Today we were at the doctor's office again.  Overall summary, I didn't hear things I wanted to hear.

We got called back and got the awesome tech again, been getting her a lot lately! She was a lot less talkative this time which made me nervous. She took measurements of the ventricles, not much as changed, both right around 2cm (when we started they were at 1 and .9).  She was able to show us a bunch of hair that Evie has been growing, looks like she has a whole head of it! Her legs look good, no clubbing of the feet. 

But then we looked at her back.

The past 2 months or so we have been high on the news that the doctors strongly believed this was a case of Meningocele rather than Myleomeningocele which is a more rare form but a much "better" form of SB to have.  Meningocele means no nerves were affected and the child will most likely like a completely normal life, with perhaps bowel/bladder control issues, but as far as physically, no limitations. 

That all changed today.

We saw her spinal cord in the sac.

There it see the 3 lines which make up the cord. They all lay just right and then you see the opening, the bubble, and the middle line of the cord go into the bubble and then back down her back.  

I was devasted. Completely devasted.  I couldn't look at the screen anymore.  I turned my head and just waited for her to finish. The tech couldn't tell me much of anything because she isn't a doctor. So we waited.

Next was the Non-Stress Test.  We were on the monitors for a few seconds and I could see all of my contractions on the screen.  Sometimes they hurt and sometimes they don't.  Evie's heart was unusually low today. Measuring in the 120's - 130's and would spike around 155.  I was more concerned about her little heart than my contractions but apparently it should have been the other way around.  After 20 minutes the nurse said Evie had passed her portion of the test but that the doctor wanted me on the monitors for a little while longer to assess my contractions.

So we waited on the monitors for a total of about 40 minutes and the doctor said it was fine for me to come off of them.  

We met with Dr. Vlastos again today. He said the baby looks good.  She weighs 5lb 6oz right now.  I asked him about her back. He thinks the nerve has been in the sac this whole time and we just couldn't see it (I was so afraid of this).  He did say that her legs are nice and fat and she is moving her toes which means the nerves haven't been so damaged that her legs have no muscle tone - so I guess that is good news. 

He checked me today since I was having contractions the entire time and my back has been acting up and I have severe pressure.  I am only 25% effaced and not dilated at all. That is good, she needs to cook longer.  (although this is good news, it doesn't tell us much because I was only 2cm when I had Gavin by c-section and I was in active labor with my water broken for over 6 hours).  The doctor said our new goal needs to be 37 weeks rather than 39 with all of the contractions I am having.  

My blood pressure is slowly rising - we are close to the cut-off where I will be put on bed rest.  Just praying I keep her in a while longer to finish cooking.

Tomorrow is FCI where I will meet with Dr. Elbaba (pediatric neurosurgeon) about the details of Evie's back closure surgery.

Prayer warriors - keep praying.  I am feeling very defeated and attacked. What was becoming a story of a miraculous healing is crumbling in front of my eyes.  I know "this is the plan" but it is very hard to cope with this plan that is being uncovered for us.  It is nearly impossible to not ask why me? why our baby? I know I have to have faith in this plan, it is just becoming more difficult. 

Friday, April 12, 2013

Weekly Check-Ups

We are well into our weekly check-ups and they are becoming more and more exhausting.  The coordination of care for Gavin (or having to bring him with us), Joe picking me up from work, going to the appointment, brining me back, working the rest of the day, blah blah. I know it is for the best and to make sure Evie is doing good in there, but this is exhausting!

2 weeks ago at my appointment we got the original tech that did our first US at this doctor's office. We LOVE her! She is so patient, loves explaining things to us and most importantly SHOWS us what she is seeing and talking about.  We got to see some awesome pictures of Evie's back for the first time ever! We saw her SB in 3D! There is a covering over her spine, it is bubbling ever so slightly, which isn't good or bad, the best news of all is just that there is, indeed, a covering!

This tech re-measured her ventricles, which did grow slightly but they aren't nearly as large as the last tech that measured them.  They are at 1.7 and 1.8 (ish). She measured them all different ways and those two numbers are pretty much the average of all of the measurements. We got to see Evie's hair on her head, she has a lot of it!

We spent a lot of time in the US and got to see lots of cool 3D images because this tech actually likes her job and takes her time!

Then we went to the NST test, sat there a while. My heart dropped a few times because Evie was acting crazy and her heart would go way up into the high 160s then drop down way low, like 110-120! The nurses said it was fine that it was just because she is so active.

Then we met with the doctor. This week we met with Dr. Vlastos (he is Dr. Nguyen's partner and also does the Fetal Care Institute that we go to - so very convenient).  He walked in and the first thing he said was "Your babe looks awesome!" I  had a frown on my face and said "no she doesn't!". He immediately asked why I would say that and I spilled my heart out that her ventricles were clearly growing and her spinal abnormality was growing and that it wasn't good and I was worried. I'm sure I babbled on for longer than just those few statements. He reassured me there is nothing to worry about and that this case of SB is a very good case (if there is such a thing) and that we are all good.  He said the opening looks much larger on US because they zoom in so much to see it. So what is taking up the entire screen is really only the size of the first part of your thumb.  He said the opening is very small and should be really easy for Dr. Elbaba to close up.  He said not to worry about her ventricles because the size in the womb is not indicitive of whether or not Evie will need a shunt. So all in all, he really put us at ease.  I once again tried convincing him that May 13th was a perfect day to have a baby (instead of May 20th - come on if you know us, you know 13 is our number!) but for the sake of Evie's health and not wanting to create any more problems the 20th it is! We really love Dr. Vlastos and love that he takes his time with us and answers everything so that I can understand it! 

Before we left I asked him if he had gotten my 3 hour glucose test back. He looked in the computer, pulled up the results and flipped the screen so I could see it.  All I saw at first was the word ABNORMAL highlighted in yellow. I said "Abnormal, are you kidding me? What do I have to do now?" All he could do was laugh, like belly-holding laugh at me because I was so mad.  He said do you see the little "L" next to the word abnormal? I said yes. He said that means it was LOW, abnormally low, you are good, you passed! I said thank God! Glad he got a good chuckle because for about 30 seconds I was already missing pasta!

That was that. Next appointment was the following week (yesterday).

So yesterday we went back to get testing - wouldn't be meeting with the doctor this time. We had Gavin with us this time so we didn't have to have a family member rearrange their whole day for just an hour of testing (plus drive time). Gavin was good, as usual in public. He likes to watch everyone and what is going on. He didn't love waiting for me to get my NST but other than that, he was a good boy.

We didn't get the awesome tech but we didn't get the crabby rude one either, I'll take that as a win, although she wasn't too thrilled to be at work.  She measured and checked Evie's breathing on US.  Evie's ventricles didn't change over the week, great news! Her back looked the same, although it took her forever to find the spot and said it is VERY hard to see, also good! The US was rather quick this time but we did get a "thumbs up" picture - Evie must have known big brother was with us and wanted to let him know she was all good! We saw all her hair again, there's a ton! I hope they don't have to shave it all off if she needs to have a shunt implanted!

Then we went to sit and have my NST. I'll tell you what, having a NON-stress test while having a 1 year old with you probably isn't the best idea, but we passed and got out of there in no time. Gavin was happy to leave and decided he was going to lead us to the door. Crazy boy, acting like he owned the place!

I have another appointment with tests and meeting with Dr. Vlastos again next Wednesday then next Thursday we have our FINAL appointment at Fetal Care where we will meet with Dr. Elbaba again and get Evie's spinal closure surgery on his calendar. 

I am so excited that time is flying and we will meet our angel in just 5 1/2 weeks but I am getting more and more scared of how our reality is about to be rocked! I knew it would be rocked just by adding another little life but with the increased medical attention that will be needed, I am starting to freak out and wish she could live in me forever, although I am done being pregnant already! We will figure this all out and know that we have an awesome God that has this all under control, because I sure don't!