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!
