Last time we posted to the blog, Grant had been moved from the ventilator to the SIPAP. He was doing very well for his first trial. Without having the normal preparation of a planned extubation (with steroid shots a couple days in advance), he held on for about ten hours. He was still oxygenating well and had a good blood gas, but he was starting to work too hard to breathe. Rather than letting him tucker out and having to intubate him in an emergency move, the care team decided to reintubate him while he was ahead. They tell us that even those short times off the ventilator are good for them, and we are very proud of what he did.
Our babies are now growing up so fast! As mentioned in previous posts, it is often the simple and mundane that gives us a sense of joy and relief. For two months, our kids have truly lived in a bubble. Their Plexiglas isolette (sometimes referred to as an incubator) has been their home in a dark room with no windows. They only left their isolettes briefly for events like Hazel’s PDA surgery, Kangaroo care, and to switch to a clean isolette exactly like the last one. As of last Thursday, they made the move to cribs!
I remember telling someone the news, who seemed unimpressed. Well, I’m sure for full term babies it is no big deal, but to put it in perspective: they moved into cribs exactly 7 weeks prior to full term. They really shouldn’t even be in this world breathing air yet, so I am going to be proud of our kids on that move!
Moving to the crib also means we were able to dress them in real baby clothes! I know Julie has been looking forward to this for a long time. We had to unbury the outfits that we had washed and neatly folded into storage bins, thinking they would not get to wear them until they came home.
On Saturday, they were stable enough that we were able to do Kangaroo care with both at the same time! For the first time ever, we were able to get a family photo with all of us visible in a single shot.
On Sunday, we were able to give them their first baths. They had already gotten sponge baths, but we were able to put them in a little tub and get them all cleaned up. They both tolerated it extremely well, and Grant only fussed when we were putting on his clothes. Once they were all cleaned up, I looked at them a little differently. I couldn’t see the breathing tubes, leads and monitors. Being bundled up in clothes, I felt like we were just spending time with our new babies who had never been so sick or born so early.
Hazel is showing progress on her oxygen needs, so the doctors have given her steroids to prep for a trial extubation later this week. Grant, on the other hand, was not willing to wait. He threw up and his breathing tube was getting pulled out. He was extubated to CPAP for a little bit, but his oxygen needs were at 100%. Not long after, he was reintubated and is holding fairly well.
So, to answer some frequently asked questions:
How much do they weigh? Are they gaining weight?
Yes, they are growing, but their weight fluctuates. Some medications can cause a little fluid retention, and added fluids (like IV or blood transfusions) can increase their weight artificially. When they retain too much fluid, they may get a diuretic as the extra fluid makes it more difficult for them to breathe. At one of the most recent weighings, Hazel just hit the 3lb mark and Grant reached 4.5 lbs (over 2 kilos).
When do they come home?
It’s odd to think that Grant has already surpassed the minimum weight to come home, but weight is not everything. They still have other developmental goals to reach, namely breathing and eating. The general guideline has been their due date, but they will do it at their own pace. In fact, it is most probable they will come home at different times.