As I write this post, I have a hard time believing our sweet girl is already 1 month while simultaneously feeling like I have been living in the NICU for 300 years. Being the parent of a child with health needs in the NICU is truly not for the birds. Nothing could have prepared us for this road. We were told it was going to be a rollercoaster- any BOY has that held true. These last 31 days have tested our emotions, patience, knowledge, confidence, fears and just about every other emotion possible. We have learned more than we ever imagined we could. As Navy's parents we feel responsible for being educated on her status/condition and helping to educate others. I thought it may be helpful to update on how she has been progressing.
CDH
Navy had a left-sided Hernia in her diaphragm. She needed to have cribside surgery (they bring the entire OR into her little Pod and sterilize everything - really cool!). We were scheduled initially for 2.6, but she had a few setbacks and was rescheduled for 2.13. Our Surgeon (Dr. Holly Hedrick) was absolutely fabulous. She is one of the best in the field and we are so grateful to have her as a part of our team. The surgery took about 90 minutes and they used a Gore-tex patch to fix the hole after bringing down her stomach, spleen, bowel, and a small piece of liver. She had to have a ladd procedure with her intestines - basically her small intestine is on one side of her body and her large is on the other. The team was happy with how much left lung she had (all of her organs were on the left side, putting pressure on that lung).
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| The left picture shows Navy's chest immediately after her repair - look at all the space! The right picture is just before her repair, when all of her organs were still in the chest cavity. |
Her surgeon is known for making cute gauze covers for the incisions, and Navy got a heart for Valentine's day! Her incision is about 1.5 inches in length. The patch is designed to grow with her over time, but there is always a chance for re-herniation as she ages. Navy has been on a range of medications to help keep her pain-free and comfortable. We are slowly weaning them until she does not require any additional meds. She also still has a little pulmonary hypertension, which is very common in CDH kiddos. Today (2.26), she had her PICC line removed - which is a BIG deal! It means her doses of medication and nutrition are low enough they can be given in other ways. Every CDH baby is different so it is so hard to compare 2 kiddos - each journey is unique.
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| Navy's heart post-op for Valentine's Day |
Respiratory
One of the biggest areas of concern for CDHers is their respiratory system and the support they need. There is a hierarchy of support that they anticipated Navy was going to need in order to breathe: ECMO, Oscillator, Conventional Ventilator, CPAP, High-flow nasal oxygen, Low-flow nasal oxygen, and finally room air. When she was born we were prepared for the most extreme - ECMO, but she was strong enough that her little body did not require it. We were thrilled. She started on the oscillator. This machine uses a gentle vibration technique to quickly shake the body/lungs. It also uses a tube which is placed into her airway (intubation). During this time we were unable to hold or move her, because it was important her head stayed in the proper position. She was on the oscillator for 20 days then on 2.15 we moved to the conventional!
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| First time Mama got to hold Navy (2.15) |
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| Dad gets to hold next! (2.17) |
While on the conventional vent, she still had to be intubated, but we were finally able to hold her! On 2.15 I was finally able to hold my sweet girl. What an amazing feeling! Shortly after, Dustin was also able to hold her. It was a feeling I had dreamed of but there was always the hesitation that something would go wrong and it may never happen. When we take big steps forward, there is also the risk that they may need to go backwards as well. So even though they switched her, we had to be sure she was stable enough on the conventional vent to stay on it. The team had estimated she would need to be on conventional for about 1 month.
1 week after getting onto conventional, I came in to help give Navy a bath. Right in the middle of things her vitals began to drop and her little body started to turn blue. The nurse called the team, and within seconds 15 people were at her crib trying to figure out what was going on. Those were some of the longest minutes of my life. They determined she had dislodged her breathing tube and they were going to have to take it out and put a new one in. This was one of my biggest fears- I cannot imagine how it feels to have a huge tube down your throat, and Navy made it clear she never liked it. As soon as they took it out and put the oxygen mask on her, her vitals were almost perfect. The team was stumped. The next step in our respiratory journey was CPAP but we were not close to it timeline wise. They hesitatingly decided to trial her on CPAP. They let us know that it was not likely that she would be successful because it was earlier than planned (2.22). Feisty miss had other plans! Since going onto CPAP her numbers have never been better! She has absolutely rocked it and is much happier in general. She is truly the boss and has shown us that she was ready for it. Now that she is on CPAP we are able to get her in and out of the bed whenever we want instead of needing a team of 2-3 people to help us. We kindly refer to her "gear" as her "scuba mask", and even Dexter isn't phased by it.
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| Navy's CPAP Scuba Mask |
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| Dexter loving on his baby sister <3 |
Feeding/Nutrition
This is another large area of concern for CDH babies. At first I was really surprised to learn this, because I figured how could feeding be an issue? But because her anatomy developed in one location then was shifted to another, most kiddos with CDH have feeding issues that can persist for awhile. Before she was born, we knew I would need to pump in order to store milk for her whenever she was ready for it. Before repair, babies cannot have any milk because their digestive system is out of sorts, however we were able to place swabs of milk into her mouth/on her cheeks to get her used to the taste and to give her some of my antibodies. Both Dustin and I were able to swab milk into her mouth. Pumping was one of the only things I could do to provide for her during the early days. This was soooo different from the skin to skin bonding I was used to while nursing Dexter. Not being able to nurse was/is difficult for me, but it is nice to feel like I was somehow contributing. Navy also received nutrition via IV fluids. |
| Navy getting her first dose of breastmilk through her ND tube. The machine hanging on the crib rail pushes the milk through the tube and into her intestines. |
After her repair, we began to talk about the next steps in her feeding journey. She had to have an upper GI test on 2.20 to make sure her intestines were ready for feeds. On 2.21 an ND tube was placed through Navy's nose into the beginning of her intestines using a special probe and films. She was going to start receiving post-pyloric feeds (milk through her tube straight into her intestines). This helps avoid reflux and other possible issues that could result from tummy troubles. She started at 2ml an hour and by 2.24 was already up to full feeds (24ml an hour!) So far she has been really rocking with her feeds. We are getting plenty of breastmilk poopy diapers to prove it :) The next step would be to move her tube into her belly, and provide milk that way. Our hope is that she will eventually be able to take a bottle, and best case nurse. But she will dictate what works best for her body! This is a slow process because we do not want to cause too many issues.
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| Happy 1 month bean! <3 |
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