One Child Left Behind - Having Multiples in the NICU
/If you have read all of my blogs up to this point (if not, get to it!) you would think that our NICU time was O-V-E-R but when Rory came home in July of 2018 we were just getting started. Rory had a fairly normal NICU stay. He was the smaller of the two and had a much rougher start but once we were out of the weeds he progressively got better and better each week and he rarely had a bad day, he passed all of his tests (except for the car seat test) with flying colors and he was ready to go home just 8 short days after his due date. Once he was home he only required a small amount of oxygen while in the car, thickened feedings and a daily multi-vitamin, we were lucky.
And then you remember we have twins. We knew early on that Jack would be in the NICU longer than Rory however, we thought just by a few days, maybe a week and then came my 30th birthday. Rory was three days from coming home and it was time for Jack’s video swallow study (VSG). This study had been so helpful for Rory and told us exactly what thickness his food needed to be and once thickened he was taking all of his meals by mouth within 24 hours. Walking into the radiology room I was so excited, then about 20 minutes later I was crying in a hallway in front of the security guard who was there to make sure I didn’t steal my kid. Jack had failed the VSG by aspirating on the thickest level of formula (like when you drink and it goes down the wrong tube, who knew there was a fancy word for that) so he was back to tube feedings for 2 whole weeks before we could try again which meant at the very least 3 more weeks in the hospital. We were crushed. Everyone kept saying, “no, this is a good thing you get to get your feet wet with just one baby at home, isn’t that great?” Let me break down for you why this is not great…
I didn’t have one baby, I have two. I don’t need to know what it’s like to have one I need to know what it’s like to have two.
Just because one is at home does not mean I have one baby, I still have two but one of them has a downtown apartment.
I have a husband and a partner who I love and I choose to have by my side every single day. However, when you have two children and they live under two different roofs you are forced to be apart a vast majority of the time.
So you see what they should have said is, “how fun, you get to just have one baby at a time AND you get to be a single parent who spends 50% of their non-working time in the hospital, and you have to take turns seeing your kids, so now you have to go entire days without seeing one of them… oh wait that’s not so fun is it?” No sweet, well intentioned friend, it’s not.
What we thought would be three weeks for Jack turned into many, many more weeks. The aspiration caused him to have fluid on his lungs (pneumonia) which caused him to get progressively worse each and every day. We got to a point where the hospital he was born in was going to try one more round of steroids and if that did not work we would be forced to move onto the big children’s hospital in our area where he would be evaluated for a tracheostomy. Spoiler alert, the steroids did not work. One Saturday morning I got to the hospital at 6AM because I had a friend’s baby shower to go to later that day and I wanted to get my snuggles in early. Once I got there I immediately noticed that he was on NIPPV, which is not a good thing to notice. His nurse came in and explained that he had gotten worse overnight and that the doctors would be in later to discuss his transfer. I sat there in that room that morning and rocked my baby and cried, I couldn’t stop. Every time the nurse would come in I would have another question locked and loaded:
How long will he have a trach? – 2-5 years
How long will be have to be at Children’s? – Hard to say but probably 6-12 months
Will he be able to eat by mouth?– No, he will have a gastronomy tube in his belly to eat through
Will he be able to talk or cry? – No
That last one hit me like a Mack truck. Jack had the cutest little yawn and it made the sweetest sound and this tracheostomy thing was going to take that away. I cried the whole way home (Sorry for missing your baby shower Michelle!) because I could not bear to tell Josh this over the phone. We had the worst day, we moped around feeling sorry for ourselves and feeling sorry for Jack. Then we agreed that this move was necessary and that hopefully the big hospital would be able to find other ways to help our little man avoid any more tubes.
Jack’s moving day and the days leading up to it were tough. We were still wrapping our heads around the whole thing and every day was a new goodbye to our favorite nurses. Side note – we literally had the best primary team ever, if you find yourself in the NICU for a long period of time make sure you love your primary nurses, it is so awesome to go see your kid and your new friend at the same time, it’s also an added bonus when your new friend knows everything about your baby and loves them as much as you do. All 8 of these ladies were with us from the first week and they would be the thing we missed most, I am a better person and mom because of them and I will forever be grateful to this elite squad. We loved our OG hospital, it was hallowed ground to us now and nothing and nowhere was ever going to be the same, but it was time to go.
Stay tuned next week for Jack’s next big adventure!