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.
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!