Navy - Month 2

I can hardly believe I am typing this post from the comfort of my own home - YEP Home! Navy had a very busy and positive 2nd month here with us. Most importantly we are home! Here is her monthly overview.

CDH
The biggest change this month was Navy's discharge from the NICU on March 20, 2019 after 53 days! She had reached all of her necessary milestones in order to leave.

Navy's going home outfit!

Goodbye Bed 27 in the NICU!

In the car on the way home!

On her 1-month birthday Navy lost her PICC line, and then started getting her medications enterally (through her feeding tube). Throughout the month she was slowly weaned off of the sedation and pain medications she had been on since birth. This was a slow process because they have to be sure she didn't go through any withdrawal symptoms. She did a great job as they slowly chipped away and on 3.17 she was officially medication free!

There were some initial concerns about Navy's heart, because it was so shifted due to other organs overcrowding. But after her repair, the team was pleased with the location and formation of her heart. She also had some pulmonary hypertension, which is very common with CDH. That also resolved during her second month of life. This month, Navy received OT to help with muscle tone, head positioning, infant massage, and scar treatments. She also got music therapy - which she LOVED.

Before we could be discharged, we had a few things to complete. Mom & dad had to attend a CPR class, watch videos on shaken baby & SIDS, and schedule an appointment with her pediatrician. Navy had to pass her newborn hearing screening, get an MRI, get the Synagis shot (helps prevent RSV), and improve her feeding.

After 53 crazy days in the NICU we were discharged to go home!!! We were absolutely elated. The only support Navy left on was Vitamin D drops (because she is getting breastmilk) and her NG tube. We have already been to the pediatrician twice back here in State College. Navy has been gaining weight beautifully at home and got all of her 2 month shots. She was not thrilled! After being discharged from CHOP, we are not free and clear of our friends there. We are headed back to see our surgeon in 2 weeks and have multiple other appointments over the course of the next year. The first year of Navy's life is the most important to be mindful of her progress and condition. It is really important that she does not get sick or exposed to germs that could cause issues with her lungs. As we transition home during the tail end of cold and flu season, we have to be super mindful of germs. CHOP has hand sanitizer and posters everywhere about hand-washing, and we are attempting to do the same at home, but it is not quite as easy as it was there.

Snuggles with big brother Dexter

Officially home on 3.20.19

Respiratory 
Navy's respiratory track has been consistently pretty positive - and this month was no different. When this month started, Navy was on the CPAP with Nitric gas. On 3.1 they took off the scuba mask and used a RAM cannula to give her little face a break. Then on 3.2 she was officially off of the Nitric gas (which apparently runs around $2k an hour!!!) The next step was High-flow oxygen, which Navy was placed on 3.5. Two days later (3.7) she was already on low-flow oxygen, and on 3.8 she was on room air! Being able to breathe room air for a baby with CDH is so so huge. And the fact that Navy took her own feisty path to get onto room air is no surprise. The cannulas were barely in her nose over the last week she was on respiratory support. Her lungs will continue to grow until she is school-aged. However, we need to monitor that she doesn't get any infections/colds that impact her lungs, as they are extra-susciptable especially during the first year.

Enjoying her Mamaroo on the RAM cannula

High-flow oxygen

Yahoo! Navy is on room air!

Feeding/Nutrition

At the beginning of this month, Navy started full, continuous feeds into her intestines via an ND tube. Navy was getting 24mL per hour through the tube. She has removed her tube MANY times during this month, but with the ND tube you need to check placement with an X-ray, because if it was pulled out too much it would actually be putting food into her stomach instead of intestines. On Monday, 3.11, Navy's nurse and I were starting to feel a little suspicious about her tube placement. She was pretty sleepy all weekend and the nurse pulled some milk back into a syringe, which is not supposed to happen. They ordered an X-ray and sure enough- she had pulled her tube from her intestines into her stomach and had been tolerating full feeds with ease for 3 days before anyone noticed! This was ahead of plan and completely not out of character for miss feisty!

Because she had done so well tolerating feeds into her belly continuously, our next step was to work on condensed feeds. This means giving her 75mL of milk over specific timeframes. We started with 2 hours (3.12), then worked to 90 minutes (3.13), 60 minutes (3.14), 30 minutes (3.15) and finally gravity feeds (3.16). Gravity feeds are when the food is placed into a tube/bag and works its way into her belly via gravity instead of using a pump. Navy was able to be discharged if she could successfully handle gravity feeds. We started gravity feeds on 3.16 and she never looked back! Because her digestive system developed in one part of her body then was shifted, many CDH kiddos have pretty bad Reflux. So far, Navy has not had huge problems with spit up, but she does tend to have a little spit up after each feed.

Navy with her NG tube and adorable bee sticker

Trying her first bottle

Navy started seeing a speech therapist to work on her feeding this month. Speech specializes in swallowing and sucking (oral feeding). We started speech on 3.7, and were able to start pacifier dips. I would take freshly pumped milk and dip a pacifier into it, then insert it into her mouth in attempt to get her to suck. After a few days of this we started trying preemie bottles (3.9). Navy took/takes anywhere from no milk to 15mL per attempt at the bottle. One thing that continues to surprise me is that CDH kiddos often have oral aversions and issues with feeding. I do not really feel like we were prepared for that side of things. The good thing is that we are able to go home and continue to work on feeding. The bad thing is that Navy is getting 80mL of milk per feed, and so 15mL is not going to cut it. I was also able to do some non-nutritive breastfeeding in the hospital. That means I was able to put Navy to breast after I had pumped. The goal of NNBF is basically to encourage them to latch and suck without the fear of them choking. Navy was really great with both and continues to be at home for brief periods of time. It is truly still a hope that was can get to exclusively breastfeeding at some point.

Before we left, Dustin & I had to take a course on placing her NG tube. And before discharge we both had to place a tube into her nose so that we could show we were able to. Both in and out of the hospital, little miss has pulled out her tube and we have been able to successfully replace it. Medically, it only needs to be replaced every 30 days- but no way is sister allowing it to stay in for that long. We will continue to work on her bottle feeds in hopes we can eventually ditch her tube. In the meantime, we give her feeds in a gravity bag on our trusty IV poles 8x per day.

Navy's board in bed 27

Navy's bed in her room

So sad to leave our favorite nurses/staff at CHOP

Rocking her Penn State pride at home

Bedtime at home with big brother Dexter

The initial 4 month timeline we were given was cut in more than half - which isn't a surprise to many. Navy has truly written her own story throughout this entire journey. She is an incredible little lady with a lot of fight in her. Although she has come SO far since birth, she still has a little way to go. Happy 2 months to our sweet Navy Bean <3