<Sunley Summit has HRHS, specifically DILV with a large VSD, and TGA. She has either DOLV or DORV, which will be determined during her Glenn procedure in a few months.>
It has been an intense five days. I’m sorry that I haven’t been able to blog more frequently. I pictured NICU days with lots of down time, but it just hasn’t been that way. I’m trying (and failing) to get enough rest to recovery physically from a very difficult birth, pumping every 3 hours for Sunley, feeding her a bottle every three hours, followed by 10 minutes of attempted breastfeeding, trying to make time for my older two kids…you get the picture. Most everyone has been following the little snippets I’ve posted on facebook, but I’ll recap for those who haven’t. If you’re already caught up, just scroll to April 30th.
April 25, 2018
We were called in to the hospital for our induction at 6.30am, and arrived by 7. I started Pitocin at 9am, and contractions began immediately. I had been having contractions all day on the 24th, and was already 2cm and 70%, so I was fully expecting a quick delivery. For this reason, and because I’ve had not-so-great epidural experiences with my first two, I decided to try for no epidural. Long story short, after hours and hours of very little progress with back-to-back contractions, I started to worry that I would be too tired and weak to push when the time came. I opted for an epidural. I’m not sure if the epidural didn’t fully work, or if it was just a smaller dose, but it was PERFECT. I felt every contraction and could still move my legs, but nothing hurt. I’m so glad I opted for the epidural, because it got my through a pretty long day of strong back-to-back contractions. Unfortunately, the no pain thing ended at about 7cm. I’ll spare details, but the last few cm were pure torture. Finally, I was allowed to push, and Sunley came pretty quickly after that. The last few minutes had some complications which left me more injured than with my first two, but not everyone wants those details ;) Just means a longer recovery that I’m still working on. Sunley Summit was born at 8:56pm after 12 hours of labor.
The doctors immediately started checking her out. I couldn’t believe how healthy and pink she looked. It wasn’t as chaotic as I had pictured, and I’m thankful for that. Unfortunately, they couldn’t get an IV in after three pokes, so they decided to put in an umbilical line (UAC and UVC lines). Because I’d had time before now to research possible outcomes for Sunley, I knew that a UAC would mean that I would not get to hold her, so I asked for them to hand her to me while they prepared for the procedure. I’m so thankful for that minute I was able to hold her. I looked in her eyes and told her that lots of people had been waiting for her and praying. I told her not to be scared, and that we loved her, and that I would hold her again as soon as I could. The procedure took quite a while. I heard the woman who started the procedure tell the doctor in charge “I haven’t done this before,” and I almost came out of the bed and took over, but I refrained. The line placement went well, and off she went to NICU4 with her daddy. I got to visit her just a couple hours later. We could touch her and talk to her, but just couldn’t hold her. She had an echo that night which confirmed her HRHS diagnosis. The night was rough. My nurse missed every single pain dosage by over an hour – if I didn’t call her for the pain pill (which was a very low dosage anyway), it wouldn’t come, so I got pretty behind on recovery from the get-go.
Recovery with a baby in the NICU is NOT easy. I had to come all the way back to my room just to use the bathroom, or to get my pain pill, or to pump (I found out later that I could have pumped in the NICU but I didn’t know that at the time). I took a wheelchair of course, but those trips really wore me out (and Derek, too). Toward the end of the day, one of the nurses started hinting at the possibility of me holding Sunley with the UAC line in. There was debate over this, and we decided to wait another day before deciding. She also had another echo, because her heart is very difficult to understand. The doctors can’t tell if she has any right ventricle at all, and they won’t be able to tell until her Glenn surgery, when her heart is opened.
I finally got a great nurse, but unfortunately was getting discharged so I didn’t have her for very long. I was very upset about being discharged without my baby, and went to the NICU to tell Sunley. I was shocked and SO happy to arrive and see her without any umbilical lines!! Being able to hold her so soon after her birth took away a lot of the sting of having to leave her that night. I went back to my room to gather up my stuff. I asked one of the nurses if I needed to use a wheelchair to leave. She said, “You don’t have a baby, right? Ya, it’s fine, you can just walk.” I know she didn’t mean to be insensitive, but that sentence about knocked me off of my feet. I stayed with Sunley for a long time after being discharged, but eventually I had to go home without my baby. That was a very long night.
After 3 consecutive 2-hour chunks of sleep (pumping all night), I headed to the NICU at 6.30am and stayed all day. This was another recovery mistake. I didn’t take any snacks or water, and it turns out that all the hospital restaurants are closed on the weekends. I got a little dehydrated, exhausted and hangry. Derek, Mom, and the kids came up and we did lunch at Chipotle across the street, but I just totally overdid it all day. Sunley, however, had a good day and even breastfed like a champ. In the evening, she had one bad feeding and wouldn’t finish her bottle. The nurse practitioner wanted to put in an NG tube to supplement her feeds, but I and the NICU nurse disagreed and I finally went home and left a note that they did not have my permission to put in a tube overnight. Fortunately, the rest of Sunley’s feeds went very well and the nurse practitioner didn’t suggest a tube again. That evening, Derek got up with me after all my pumping sessions and cleaned the pump parts which gave me about 10 minutes of extra sleep each session.
I knew I couldn’t have another day like Saturday, so I asked my mom to go to the NICU and snuggle Sunley in the morning so I could have an extra hour and a half of sleep (I don’t think she minded). I got up there about 9 or so, just after her chest Xray, which was clear of anything major. We are VERY blessed that her Aorta developed properly. I went home in the late afternoon to play with my older 2, who have been missing their mommy, and Derek went to the NICU in the evening.
Sunley’s case was presented to a room full of about 200 doctors in the early morning. We were told that they would discuss her case, and decide what the best plan was for when to do her PA banding surgery. Derek and I went to the NICU at 8am to wait for cardiology to make their rounds. I think they came by around 10.30. We were SHOCKED to find out that because Sunley is doing so well – her pulmonary artery and aorta are holding balanced pressures, she isn’t on any meds, her O2 sats are steady (80s and 90s) – the doctors have decided to discharge her and just monitor with frequent checkups. Now, a few things before anyone gets too excited:
Sunley is still very, very sick even though it’s hard to see.
Sunley will still have at least 3 open heart surgeries before the age of 3-4.
We don’t know how long we will get to have her home before we go back.
We are still processing everything, and trying to get things ready, which is why it took SO long to get this news out today. While we are SO excited by this news, we are also terrified. Her body is in and will be in a very delicate state for the next several months. As much as I want everything to be normal, she is not a normal newborn. Getting a cold could be catastrophic for her (as in she could die), and with 2 kids at home we are nervous. But. This is MAJOR answered prayer! I never dreamed I would get to bring her home in her going-home outfit that I bought before her diagnosis. We will actually have time to enjoy her at home without the sternotomy precautions, without meds—this is going to be wonderful.
She will have very frequent checkups, and will most likely be put on some medications eventually in order to postpone the surgery as long as possible. We may get her home for just a few days, or we could end up having her here for a month or two. Sunley’s body will decide for us.
We know why this happened. God is listening to His people pray. That’s all there is to it. Thank you all from the bottom of my heart for your prayers. They are working. And please don’t stop.
We have a lot of things to figure out over the next two days, and prayers are greatly appreciated! We are feeling every emotion. We are happy, exhausted, scared, numb, and so so grateful all at the same time. Soapbox: Please be understanding if you visit and we ask you to “scrub in” before entering our house, or if we see you out and don’t let you touch Sunley. As much as we don’t want to be overbearing, we HAVE to follow the doctors’ advice and protect our girl so she can continue to be strong for her surgeries. We won’t be taking her out anywhere for a while, and IF she does get to be home for a long period of time and we go to church, I doubt that we will allow her to be passed around. This is all very overwhelming, and if you think we are over-reacting…we aren’t. Soapbox over.
And another side-note:
The discharge may not happen. Heart babies are known for being day-by-day. It’s very possible that something could change even by tomorrow, but for now I’ve just decided to try and enjoy all of this significant answered prayer.
Things to pray for now:
Clarity and strength as we navigate yet another life-altering routine change. Help her symptoms to be clear when they start, so we and the doctors know when it’s time to go in for surgery.
Please Lord help my Sunley be a quick healer with no complications after her surgery.
Help the older kids to be ok when she (and Mommy and Daddy) have to go back to the hospital.
Please pray for our positivity and strength as a couple and as a family unit.
Pray for my mom, as she is making MAJOR sacrifices in order to help us during all of this.
Pray that no other health issues arise that could compromise Sunley’s surgery or recovery period.
Pray for her surgeon, Dr. Carlos Mery.
We are all attached, and we need Sunley in our lives now. I can’t imagine ever going back to not having her. So please pray that we don’t have to, and that we are able to just enjoy this gift of having her home for a little while instead of filling the time with worry.