Scars Tell Our Story

So now that I've shared Nehem's birthday, I want to share about the two weeks (plus a few days) since his birthday. It has been an emotional rollercoaster, mostly good, but a few hard, moments.

Friday(7/28/17)- Nehem's first full day of life: We knew that Nehem would be going into surgery pretty early that morning. Mine and Shane's plan was to wake up early and go down to spend some time with him before they took him into surgery. My sweet Nurse decided in the night that because I was sleeping so well she would skip out on my pain medicine. Bad choice less than 24 hours after a pretty intense c-section. When I woke up, I was hurting. Bad. It took my normal pain medicine, plus a double dose of Percocet to get my pain under control. At this point I knew I wouldn't be able to make it down to Nehem no matter how bad I wanted to be there. Cue the tears. Shane went ahead and went over to be with him and FaceTimed with me, but laying in a hospital bed when your newborn baby is about to go into major surgery is not ideal. They originally told Shane that the surgery would only last 1-2 hours, but once they got started they realized it would take longer. It's hard to tell the size of a lesion through an ultrasound, so when Nehem was born we found that his lesion was quite large, 3inx3in. This meant that he would have to have a neurosurgery team close the lesion and a plastic surgery team repair the opening and make his back look nice. They called and kept Shane updated and about 4 hours later, we met with the plastic surgeon. He was very happy with how the surgery went, and explained how they went about repairing Nehem's back. We were finally taken back to see him. Because of the size of the lesion, it took quite a bit of work to repair his back. Instead of skin grafts, though, they stretched his skin and used tissue from other areas (much more ideal than skin grafts). This left some gnarly incisions. Refer back to post title. We walked back to the NICU with Nehem and his team and by the time we got settled, they had us leave so they could put in a PIC line-which is basically like a permanent IV where they could administer all of his fluids, medicines, etc. I had finally gotten to my boy and I had to leave. Cue the tears. I decided to go back to my room, get some pain meds, eat, etc. When I got there, the Nurse came in to take my vitals. My blood pressure and pulse was super high. Cue the tears. My precious Nurse spent probably an hour hanging out with me, getting me special food, and helping me calm down. All while we looked at pictures of Nehem. I will never forget this Nurse and the impact she had on me that day. Labor and delivery nurses are something special, I tell you. I FINALLY was able to get it together and spend some time with my baby until bed time. He handled the surgery like a champ. He was pretty knocked out on good pain meds, but he was also getting fluids and lipids pumped into his tiny body, so he was getting some nurtrition as well.

Saturday (7/29/17)- With the permission of my nurse, I was able to go spend the day with Nehem. I knew when I needed to get my pain meds and did not skip out on those. I spent the day talking to my boy, stroking his perfect little head, and examining his precious body. I couldn't hold him yet, but it was so nice to just be in his presence and feel like we were bonding. It was probably my imagination, but I felt like he knew my voice. I mean let's be honest, he heard me talk non stop for 9 months. I was present during rounds (when the doctors come around and discuss the patients and treatment plans) and their biggest concern was pain management for him. They also were discussing cathing him which they were already doing, because it's often hard for people with Spina Bifida to completely empty their bladder. I think by this day they were cathing him I think every 6 hours, and still getting less output than they need, so they kept upping the time in between caths.

Sunday (7/30/2017)- I was discharged from the hospital this day. They did my discharge stuff pretty early, I don't know if that's common practice at Vanderbilt or they knew I didn't want to be in a hospital room while my baby was in the NICU. Either way, I was discharged by 9:30am and made it to Nehem's room right in time for rounds. They decided to take him down even more off the Fetanyl drip and allow him to attempt taking some bottles. I wasn't really producing much milk at this point, and I just wanted my baby's belly to have something in it so we agreed to start on formula. After our families left, Shane and I attempted a bottle with Nehem. He knew how to suck, but wasn't quite sure what to do with the milk once it got into his mouth. After the second bottle of him doing the same thing, they decided to insert a feeding tube through his nose into his stomach. Cue the tears. I knew this was ok. He needed food in his belly. But it was still hard to see and watch your baby get a tube stuck down his throat. At this point they were cathing every 12 hours and STILL getting less than the amount that they needed. You go little man. Shane and I spent the rest of the day by Nehem's side. It was exhausting. But I couldn't picture myself anywhere else at that point. We weren't able to get into the Ronald McDonald House yet, but luckily, the hospital had Sleep Rooms, like little hotel rooms, for families to stay in while their babies were in the NICU. We happened to get one that night and were able to sleep a little. I pumped and took milk to the nurses for Nehem and at some point in the night (early morning) the Nurse told me that he had taken his entire bottles by mouth for her and had gotten very little output in the caths (meaning he was emptying his bladder on his own), so at this point was bumped to every 24 hour caths. Cue the happy tears.

Monday (7/31/2017)- Shane and I spent the whole day next to Nehem's side. He had been pretty much taken off the constant fetanyl drip, so he was a little more alert and acting a little more like a "normal" baby (crying when he was hungry, looking around, etc.). Our Nurse even let us hold him on our laps, on a pillow, but hey I'll take it. It was magical. I wanted so bad to really be able to snuggle with him, but at this point, just to have him in my lap was good enough for me. We didn't leave N's side the entire day, except to eat or take an occasional bathroom break. By the end of the day, I was exhausted. Physically. Mentally. Emotionally. I couldn't do it anymore. NICU days are long. And hard. And exhausting. I decided that night that I needed to get out the next day, and after talking to Shane, I realized that I hadn't left the hospital since I had gone in for my c-section 4 days prior. I needed to see the light of day. That didn't make me a bad mom (Thanks for reminding me of that, Shane). N's nurses were incredible and he was well taken care of. He was doing fabulous. He was no longer being cathed, taking a good amount of his bottles by mouth (though he still had the feeding tube in), and there wasn't much we could do other than sit there and talk to him. He had a head ultrasound and MRI, showing that his fluid levels were still stable, so shunt placement was not needed yet. Praise the Lord. 

Tuesday (8/1/2017)- Shane and I got up, got ready, peeked in on Nehem and left the hospital. We ate breakfast, went to Target (of course) and a few other stores. The only thing I could think about was Nehem, but this morning was so refreshing for me. I needed this day. After lunch we went back to the hospital and hung out with Nehem. We helped with bottles, diapers, and other care. We still hadn't gotten into the Ronald McDonald House so we decided to get a hotel room close by. Vanderbilt partners with nearby hotels and the hotels give better rates to families who either need care or have a family member inpatient at Vanderbilt. After spending the afternoon with Nehem, we checked into our hotel and I still feel a little guilty for how well I slept that night in a real bed.

Wednesday (8/2/2017)- Shane and I got up, ate breakfast and hung out with Nehem. Man, that sounds pretty repetitive. During rounds, they had bumped up N's intake minimum, even though he hadn't reached his prior minimum goal. We always started with a bottle feed, but he was exhausted by the end and never could finish the bottle, resulting in all of his feedings ending with the tube. He also could only eat every 3 hours, and this kid is MINE. He gets HANGRY (and that's pretty much the only time he cries). But he had a taste of what a full belly felt like and he liked it. So he was getting hungry sooner than the 3 hours, crying, and then tiring out before he could finish his bottle. Cue the tears. I left the hospital that night feeling super frustrated. My baby was hungry and though he was eating, it wasn't what they felt like, enough. So they kept the dang feeding tube in his nose. It wasn't fair. Why'd we have to wait 3 hours if he's hungry every 2.5? Feed my baby. But in the NICU, parents don't have a ton of say in care, unfortunately. So we went with the flow. I cried. Shane consulted me. Shane and I prayed, and we asked for prayers from others.

Thursday (8/3/2017)- When I woke up that morning, we felt like we should call the NICU and check on N. When we talked to N's nurse, she told us that he had taken all of his night feedings, his morning feedings so far, and she was going to take the feeding tube and PIC line out at his next care. Cue the [happy] tears. I will never forget this Nurse, either. She fought for Nehem. Thanks, sweet lady. I will never forget you. When we got to the hospital, we found out that she had also gotten it changed that Nehem could basically eat when he was hungry. He's my kid, remember? This was a good day. We hung out with Nehem, got to snuggle a little, he was completely off all pain medicine and with his feeding straightened out, we were basically just waiting on the incisions to heal.

Let me pause here, and say, that his NICU stay should have been much worse with the condition that N was born with. With Nehem's large lesion, hydrocephalus, chiari malformation, we should have been going through a lot more than we were. With the hydrocephalus, meaning, extra fluid on the brain, there is an 80% chance that Nehem will eventually need some sort of intervention, whether a shunt, or some other type of surgery to drain the excess fluid out of his brain. These surgeries, though life-saving and necessary, are still brain surgeries. Our neurosurgeon told us from our very first appointment while I was pregnant that the longer we could hold off on a shunt (or other intervention) the better. Usually, kids who can make it one full year with no hydrocephalus intervention will never need any intervention. His head circumference and fluid levels are assessed very often, but we are praying that intervention will not be necessary. Also, with the chiari malformation, meaning, N's cerebellum is pulled down (a result of the lesion on his back, and very common with Spina Bifida), there are often some breathing problems, swallowing problems, or other symptoms. As of right now, N is asymptomatic of the Chiari. Praise the Lord. So, I know you are reading through all that Nehem has been through thinking "this poor baby" and although I had some tough days, we were constantly Praising God. Nehem is a miracle baby, in so many ways, and I hope I never forget how God worked in and through Nehem at the beginning of his life.

Friday (8/4/2017)- Shane and I hung out with Nehem, getting all the snuggles. It was a pretty uneventful day. I had my post-op appointment where they took out my staples from my c-section. My sister and brother-in-law came to see Nehem and took us out to dinner. We heard a potential discharge day, but it was dependent on another head ultrasound. We left and went to bed. Shane got a call about 2am saying that they were moving N to what we thought was another room in the NICU. Shane told them to do what was best and we'd be there in the morning.

Saturday (8/5/2017)- I called NICU to find out what room N had been moved to. Much to our surprise, he was no longer in the NICU. I'm sorry what? And it took a few phone transfers to find out what took he was in. Cue the panic. We finally figured out what room he was in, Shane knew he could get ready faster than me, so he got over to the hospital to check on N. Our tiny baby was fine, but he was in his own big room, on a regular floor of the children's hospital. While this had some perks (our own bathroom, a bed for me to sleep in, etc.) we were not mentally prepared for this big move. We checked out of the Ronald McDonald house did I ever mention we finally got in? Oops. Sorry, and I got to the hospital where I would stay until N was discharged. Shane had to come back to Huntsville to be at church on Sunday, so there I stayed and took care of N. As a new mom, I was overwhelmed. In the NICU, the nurses are right there to help you and guide you and answer questions. On this floor, they weren't used to teeny tiny babies like N. I knew that us being on this floor was a testament to how well N was doing, but I still missed my NICU people. But we survived our first night together.

Sunday (8/6/2017)- Another day just hanging out with Nehem. The doctors on the floor knew that I was hoping to go home the next day (Monday), but at this point, plastic surgery wanted to keep us until Friday (2 weeks post-op). Kind of ridiculous, if you ask me, but I assumed I would see them and talk to them at some point. Nehem spent the day eating, sleeping and snuggling with his Mama and being stared at by his grandparents.

Monday (8/7/2017)- Our day started pretty early with a 4am bottle and a 5am head ultrasound. From that point on, there were doctors and nurses and plastic surgeons and neurosurgeons in our room. I talked to Plastic surgery about releasing us, and after informing them that carbeds (a car seat where N could be safely strapped in on his belly since he couldn't back lay) existed, we were released by plastic surgery. Nehem's ventricles were still stable so neurosurgery released us and we were set to go home after an echo-cardiogram (to check out a little spot that was questionable on the day of N's birth). Shane got to the hospital and the doctor on the floor came in to tell us she couldn't release us that day. Because N was stomach laying, he had to go home with an apnea machine and we couldn't get one delivered until Tuesday. Cool. So that night was spent watching Netflix, daddy snuggles and anticipation of going home the next morning. As disappointing as not going home that day was, at least we knew we were going home the next morning.

Tuesday (8/8/2017)- We got discharged pretty early (as promised) since everyone had already signed off on us to go home. Let me say that the Doctor on the floor we were on, though not a neonatologist, worked her butt off to get us home. She was awesome. We got Nehem strapped in his car bed and he pretty much fell asleep as soon as we started moving. He slept the whole way home and has pretty much only woken up to eat since then. He slept 6 hours straight the first night home and is basically the best baby in the world. We're totally not bias.
 
Wednesday-Saturday (8/9-8/12) Being home with this sweet baby is a dream. He literally only cries when he's hungry, sleeps 4-5 hours at night and loves to snuggle. Shane and I can't stop telling him how loved he is, how handsome he is, and how tough he is. He's the toughest kid we know.
We are absolutely amazed by this tiny human God has entrusted us with. I know I've said it already, but he is truly a miracle. From doubting that we would even be parents biologically, to the hopelessness we were given at our initial diagnosis. He is amazing. He is defying odds, kicking butt, and taking names. We were told he would have very little movement below his hips, but by about day 10, he was crawling away from me while I changed his diaper. (Take that, high risk doctor #1) Movement and feeling from Nehem knees down is questionable right now, but we can handle that.
Nehem's journey is no where near over. In fact, this is just the beginning. We're going to have lots of obstacles to overcome. But we serve a God who has never left our side and has had his hand on Nehem since before we even knew he existed.

Our boy was fearfully and wonderfully made by a God who deserves all the glory for every single day of Nehem's life. That will continue to be our prayer for his entire life.