Boston is out of his isolette and hangs out in a regular open hospital crib all day. He seems to be staying warm enough in there all swaddled in footie pajamas and a blanket and a hat. He looks so big these days, weighing in at 4 pounds and 14 ounces! I just want to bring him home and snuggle him all the time! We met with an occupational therapist the other night to see how Boston would do with breastfeeding. He has been waking up and chomping on his binky at a lot of his feeding times, which is a good sign that he’s ready to start trying. He latched right on and did great — he’s not actually full-on nursing yet, though; for now we’re just practicing. This Thursday an ENT doc will check to make sure his vocal chords have not been damaged by his heart surgery so that we can get the green light for breastfeeding. Boston had another eye exam and everything looked great. He has been back on the high-flow nasal canula because the regular canula was drying out his nose and throat. The high-flow canula has a humidifier in it so he will just be on that for a bit until they think he’s ready for a lower flow on the regular canula so he doesn’t get as dried out. Unfortunately the high flow puts a lot of air in his tummy and he has had a very backed up digestive system, with a lot of residuals coming back up out of his feeding tube. Today they started giving him regular enemas to get him pooping lots to hopefully give him some relief. At this point they are still not worried to the point that they’ll be calling in a GI doctor to look at him since Boston’s gestational age is not even 36 weeks, but man his poor tummy has always really struggled. He has also been breathing really fast a lot of the time so it will still be a while before he his back on a regular nasal canula. The goals over the next few weeks are obviously just weaning down on oxygen needs and working on breastfeeding. I am so grateful for how blessed I am to have these precious babies of mine. I hope I can be the mommy they deserve. Thanks everyone for watching my other two babies while I visit Boston and thank you for your patience with their emotions — I obviously have my struggles as a parent and Ava has developed a good deal of sassiness as a result. Maybe the boys will turn out OK? As my mom told me the other day — she’s the first child in her family, as am I — “Raising children is like making pancakes — the first one is always a throwaway!” Ah poor Ava. I’m not quite sure how Kindergarten is going to go and I’ve shed many tears of anxiety over it. Hopefully I figure out parenting someday.
Gah. Guys. Our baby is doing so well. Today the practitioner who did his checkup left me the best voicemail. She hadn’t seen him in a while and couldn’t believe how good he looked. Since we see him almost every day we don’t notice his progress as much as people who see him less frequently, but last night I was looking at pictures from just a day or two after he was born. They make me a little sad because even though I knew he was struggling then, it almost looks worse now that he has made so much progress.
And now he is starting to look like a normal healthy baby. He is basically on the verge of looking us in the eyes and smiling. Yesterday when I held him he kept smiling in his sleep (you know, the little twitchy newborn smiles that everyone tells you are “just gas,” but of course they are WRONG).
In this next picture you can see that he has graduated from the NIPPV to a high-flow nasal canula, and things have been going rock solid! He’s tolerating his feedings (8 ounces of milk a day, plus human milk fortifier to give him some extra calories) (he needs the occasional enema to help him poop) and in a week I’m sure he’ll be 4 pounds and out of his incubator!
I also wanted to give everyone a friendly reminder about whooping cough. Just make sure you had the Tdap vaccine sometime between age 11-64, and you should be good (the every-ten-year Td booster doesn’t cover pertussis). If you don’t think you’ve had it, you can make an appointment or walk in at the health department, but also please just be sure to wash your hands and stay away from us if you are sick whether you visit us at home or at the hospital. I’ve never been a huge germ Nazi — and I like to tell myself that’s why my kids have strong immune systems — but this time around, for obvious reasons, I appreciate people understanding that once Boston comes home we probably won’t have a big party for everyone to come over and pass him around and breathe all over him — I’ll probably be like that mom from the Luvs commercial making people put hand sanitizer on their arms and necks. Oh well.
It’s been a pretty chill week for Boston. He is still on the NIPPV and they are slowly weaning down the settings. He still has some apnea/bradycardia episodes. They have been adding human milk fortifier to his feedings and he now weighs three and a half pounds. Since he’s getting bigger, he hasn’t needed the heater under his mattress, and as he gets better they will slowly lower the temperature in his isolette until he weighs about four pounds, and then he should be ready to move to a regular, open crib. He needs to transition to that slowly so he doesn’t use too much energy regulating his temperature and burn off all the fat he’s gained.
A lot of people ask when he can come home. Generally the quickest answer is that he won’t be home until somewhere around his due date, September 25th. So we are about half way there, as long as everything goes well. Here some of the criteria he needs to meet in order to come home:
-Must maintain his temperature in an open crib, and gain weight at the same time.
-Must be able to take feedings from a bottle (or breast).
-Must be on minimal oxygen from a nasal canula.
-Must have gone at least a week without any episodes of apnea/bradycardia.
There are some other requirements for discharge, like being able to tolerate lying flat on his back instead of being elevated, not needing caffeine, and being able to stay in a car seat without breathing problems.
We should see quite a bit of progress in a few of these areas over the next couple of weeks! I’m falling in love with this little guy more every time I see him and I just want to bring him home so I can snuggle him whenever I want!
On Friday night Nick got to hold Boston for the first time. It was the sweetest thing! I took a video and I have been watching it over and over for days. Boston was so alert and just stared and stared at Nick. He had just had his blood transfusion the day before so he was much more active.
Boston had been put back on the ventilator on Thursday, which was pretty discouraging, but by the weekend he was on the NIPV, and still is. That’s one step down from the ventilator, so that’s a little bit of progress! It’s great to see him extubated again, and I really really hope it lasts this time! I’m really hoping that if they change things they try to skip the CPAP and go to a high-flow nasal canula.
Since Boston is now tolerating about an ounce of milk at a time through his feeding tube, so he is now completely off of IV nutrition. PICC line and other IVs are all gone! This is so encouraging to me and so nice for him to not have those awful things attached to him. His tummy was so, so poofy today when I went to see him, but his nurse gave him a glycerine enema and he immediately pooped lots and his girth measurements went down considerably. It’s always a struggle but he’s definitely improving.
His potassium was a bit low, but that’s pretty normal. I mean sometimes you just need to eat a banana or chug a Gatorade, right? Not a big deal, and since IVs are out they will be giving him that through his feeding tube. They will also be fortifying his feedings with calcium and phosphorus to help his bones get nice and strong. It’s amazing how much they are doing to help Boston grow and develop properly.
A lot of preemies have vision problems — especially when there’s been a lot of oxygen therapy, anemia, or blood transfusions, like Boston has had. They will keep checking his eyes every two weeks until he comes home, and there are plenty of things they can do if he starts to have enlarged blood vessels in his eyes. His eyes are so open and cute! It’s so amazing to see him starting to look around at things, even if he probably doesn’t see much.
Hopefully he will be able to continue weaning off of oxygen. He is breathing really fast on the NIPV and his oxygen saturation levels drop pretty frequently, but they are still hoping to wean him down to a high-flow nasal canula. Thanks for all the prayers and good vibes!