It all started Wednesday morning when I showed up at Jackson's house (that is what we call the NICU now). I could hear him squirming and squawking in his bassinet so I went to give him a good morning kiss. I immediately noticed something was missing. As I looked in his mouth and under his chin I asked the nurse, "Where is his cannula?" She smiled and said, "I was hoping you would notice that."
Really? My son has had a piece of plastic offering whiffs of oxygen in his little nostrils for 29 days now. You really thought I would not notice it was missing?
Apparently, she noticed that the cord to the cannula was under the wheel of his bassinet and she realized he had not been getting any oxygen. His saturation levels had been in the 90's so she decided to ween him down from 100% to 50% oxygen. When he continued to do well she took him all the way down to 21%, or room level oxygen. After that, she made the decision to take off his cannula. He had been cannula-free since 5 a.m. and was doing just fine without it.
Hooray! Finally, he decided he can breathe in enough air on a regular basis and get off his little crutch. I know 100% oxygen sounds like a lot, but he was on such a low flow of air it was almost negligible. It is like there is a little line of oxygen molecules slowly marching towards his nose making themselves available if necessary.
He had also been feeding so well on Monday & Tuesday, the doctor decided it was time to go to ad lib feeding. This means Jackson calls the shots on how much and when exactly he eats and no more gavage feeding. He had to accomplish eating a minimum amount of food by mouth in 24 hours, which was determined to be 320 ml according to his current weight.
All of these changes were very exciting because they meant we were inching closer to the end of the ride. In reality, this also meant I had two things to be completely stressed over all day long. Is he eating enough? Is he keeping his oxygen saturation (sats) high enough to stay off his oxygen? I literally had my eyes glued to his monitor all day while I resisted the urge to force food down his throat. It was completely brutal.
In true Jackson fashion, eating was not a problem. This kid is hungry. I recognized the profound change in his feeding behavior when I came in Monday morning. It was as if a light bulb had gone off and he realized he enjoys drinking his milk rather than having it shoved directly into his stomach through a tube. He easily met his 160 ml half day ad lib requirement in the 12 hours I was feeding him and actually exceeded that amount.
The oxygen was a different story. As the day progressed, his sats started getting lower and lower. They like to see his sats in the 90's so they know his blood is carrying enough oxygen to his tissues. He spent an excessive amount of time in the 80's and even dipped into the 70's. When I left at 7 p.m. I had a sinking feeling he may not make it off his oxygen.
When I arrived on Thursday morning my suspicion proved correct. Even though the flow of oxygen he has been on is so low, he needed it. Most of the time it is not necessary, but there are certain times, such as when he refluxes or when his tummy is really full, the oxygen helps just enough. I tried to refrain from being disappointed and wrapped my head around the idea of going home on oxygen. Time to focus on feeding.
The nurse told me not to get too discouraged if he was too tired to eat. He had a rough night despite the fact he managed to eat his ad lib minimum. He was sputtering and had several brady episodes at his 2 a.m. and 5 a.m. feedings. Again, Jackson is a feeding champion and refusing to eat really does not happen. He proved the naysayers wrong and exceeded his ad lib minimum again. Most likely being back on his oxygen gave him just enough energy to easily feed. It was glorious to experience that victory with him.
The neonatologist was also unfazed by the fact he was back on his oxygen and we set a plan to room in on Saturday if everything continued to go well. Jackson had to continue to feed by mouth and eat enough to meet his ad lib minimum and gain weight. If we had to go home on oxygen, so be it. Rooming in means we spend most of the day and the night in a suite in the Family Birthing Center with Jackson. It is our chance to take care of him on our own and without monitors, yet the nurses are right there if we need anything. It is practice before we finally take him home.
After a successful day on Thursday (with the exception of the oxygen, which alone would not keep us in the NICU), I was relieved to arrive to much better news on Friday morning. Jackson exceeded his feeding minimum again and this time had no issues. He even woke up early a few times ready to eat. The doctor asked if I was willing to try one more time to get him off his oxygen. I was more than willing. Going home with oxygen tanks (explosives) was something I had accepted but preferred not to deal with.
Jackson was a feeding, breathing rock star. All day I felt like I was watching a different baby on the monitor as he maintained sats in the 90's with no oxygen support. I was so surprised I even asked the doctor if it was normal for a baby to improve so dramatically so fast and he verified what we were seeing was normal. The NICU staff calls it "the lightbulb turning on". Of course, feeding was not a problem and he was eating more and more at each opportunity he had to nurse or bottle-feed. All Jackson had to do was get through one more night and we were on our way back to where we started in the Family Birthing Center.
Colin and I worked until almost midnight on Friday getting the house ready. We had the carpets cleaned so we had to replace (and rearrange) furniture amongst several other "bringing home baby" chores. Somehow I slept that night between pumpings despite my anxiety. One stimable brady episode (drop in heart rate requiring stimulation to recover) and the going home clock would be reset for another 5-7 days. When you are so close to the end of the ride, the idea of even one more day is unbearable.
I was an annoying nervous wreck as we made our way to the NICU this morning (Saturday). This was it, are we rooming in with the plan to finally leave room 3 on Sunday? Will we be going home on oxygen or did Jackson do well overnight without it? Can I finally spend 24 hours a day in my home with my baby? Is Jackson going to finally be the cordless baby I was expecting?
Yes!
Jackson did great overnight again! He ate his food, kept his sats up, and had no brady episodes. Our last hurdle to get out of the room in the NICU was the car seat test. Jackson had to spend an hour in his car seat and keep his sats up. I refused to sit in the room for an hour watching the monitor. Remember, my blood pressure was a problem a month ago when Jackson joined the world and I did not need any more stress. We left the hospital and killed some time with frozen yogurt and furniture shopping. When we got back he had passed his test. Victory! The ride is almost over!
Ironically, the ride ends right where it started, in the Family Birthing Center. Just like a roller coaster, you get off where you got on. If everything goes well tonight, we get to be those proud parents leaving the birthing center with our term baby in his car seat. We will be the people we have envied for 33 days. Colin said today that we will no longer be NICU parents and be able to park in our special parking space. He quickly took it back.
We will always be NICU parents.
Hopefully Jackson will gain weight and we can blow this Popsicle stand. Fingers crossed. Time to get off this ride.
"I am a champion, and you're gonna hear me roar."
Your amazing little boy is astonishing and awe-inspiring. He clearly gets his strength, will-power and fighting spirit from his mother and father and I couldn't be prouder to say that you are family. Your faith in him was not unjustified, and I can't wait to see how he develops over the years. God Bless!
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