Milo weighed 5lbs 8oz (this was two days ago, he'll have a new weigh in tonight)
Milo is off the cannula
He is out of the isolette
He had some issues with reflux causing congestion
He will come off the caffeine soon
We could be out of here anywhere from 10 days - 3 or 4 weeks
Happy Halloween. A friend of mine (Sarah Pretty) made us a little Harry Potter cloak for Milo which inspired Shelly to go all out. We dressed Milo up and got some great pictures of him.
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| "The Boy Who Lived" |
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| Two Moms? Get Used to Playing Dress Up |
Just after Halloween, the cannula came out. The doctor came in a couple mornings ago without any ado just as we were about to feed him and took him off the cannula. We haven't looked back. Well maybe once but that came a couple days later and we'll get to that.
Because he was off the cannula, we got to give him a wonderful bath. The nurse gave him a tube vacation and took the feeding tube out for the duration. We put him in a little tub in the sink filled with warm water and he loved it. He totally relaxed and floated wide awake. We got a lot of smiles too.
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| Pampering the little one |
He did great off the cannula (Shelly and I half suspect it was hindering more than helping as he tended to dislodge it constantly and then it would block his nose instead of blow air into it). The other big change is that since his breathing leveled out - previously when he was breathing really rapidly the doctor ordered him uncovered in his isolette so they could keep an eye on him - they were able to test him again with the isolette open and he passed. The isolette was removed a couple days later and he is now the proud owner of his very own plastic tub on wheels... or "crib".
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It really makes the room feel bigger.
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| He would fit right in the corner now... but nobody puts baby in the corner |
I thought I was going to enjoy the crib so much but instead I hate it. It feels like he is always too close to the hard plastic walls and he wiggles so much when he has gas that I fear he will squish his face into it or hit the top with his head when he kicks. Also, the sides of the isolette folded down so you could interact with him on his level. This was great for changing his diaper, dressing/swaddling him, and picking him up and putting him down with ease. The "crib" has high walls that make you have to bend your wrists at odd angles to get him in and out and there isn't enough room to fully spread out the swaddle to receive him. While I felt good about putting him back in his isolette because it was quiet and warm and cozy (he had blankets, bean bag sacs to contain him, and a pleasant incline), I feel very hesitant to put him back in his plastic tub which is just a flat mattress and since they are working on training him to come home, he has to follow the "safe to sleep" rules - flat on his back, swaddled, with no pillows etc.
And then yesterday morning we put him down flat on his back after a feeding and he started desatting a lot. He kept struggling to breath until I picked him up and held him in the cradle position at which point he calmed down and breathed normally. The nurses have been suctioning out his nose to help him breath because he gets congestion that makes it a struggle for him sometimes. They have been having to do it more and more often because it seems like he is always congested. That congestion combined with a gassy tummy to cause him to bear down and not breath for a second and then gasp but still not be able to breath due to the stuffy nose. It was a miserable couple of minutes. I held him for a long while after that, in fact Shelly and I traded off and held him the rest of the day. He did great and showed no more issues.
We consulted with his doctor and told her how he does better when he is at an incline (like when he was in the isolette or being held) and she recommended we try sleeping him based on the reflux protocol. Basically, this means we sleep him on a little pillow on his stomach or hold him upright on our chest after every feed for at least 30 minutes. It turns out the reflux causes some of his milk to get into his nose when he lays flat on his back and that was causing the excess congestion. We decided to hold him all day (the breathing issues always make me want to hold him and never put him down) and to try him on his little pillow for his night feedings. He is so much more comfortable on his tummy on his little pillow, I am really glad that is still on option for him.
I tried to go to bed early knowing I was on duty to bottle feed him at 11pm and again at 2am or 5am depending on his cues. Shelly and I have worked out a plan since she sleeps very heavy at night and I am more likely to wake up to Milo's needs: I bottle feed him twice during the night and she breast feeds him twice during the day and we play it by ear with any other feeding needs. So I tried to go to sleep at 9pm but failed and around 10pm realized I might as well just stay up until his 11pm feeding. He did well on his bottle and then I held him on my chest, per the reflux positioning suggestions until 12:30am.
He got pretty sleepy but when I put him down in his crib, he started snorting and sounding congested again. He didn't desat though so I left him to sleep since he seemed comfortable. His noises kept me from sleeping very soundly but I managed a little rest until his 2am feeding. We decided to give him that feeding through his nose tube (he is technically allowed 3 oral feedings out of 4 per shift based on his cues so this was the feeding we chose to skip). I held my hands on him for a bit with the pacifier until he settled down and managed to get maybe 2 hours of sleep before 4:45am at which point he was scheduled for what we thought was a heel prick to test his anemia. Instead, they needed a lot more blood (1.5ml instead of just .5). I held his hand while they tried taking the blood out of a vein in his arm and when that failed, they got it out of a vein in his head.
He was only slightly annoyed at them and managed to take half a bottle feeding from me afterwards. I felt pretty bad about all the blood they took from him though because he anemic, I am still waiting to hear back from the doctor on why that was necessary (I kind of think it wasn't what the doctor had intended when she ordered the tests but he seems to be handling it ok for now). The results of the anemia test show that he is ever so slightly less anemic. Really just a couple tenths of a point better but since he is growing, it is great news that he has not dropped anymore. I held him skin-to-skin until his 8am feeding at which point I woke up Shelly to breastfeed him.
He is still doing well today. We have him swaddled and lying on his stomach. I absolutely love how much he enjoys when I touch him. His pacifier fell out and he started crying. All I had to do was walk over to him and place my hand on his back and he calmed down and went back to sleep. It feels like he needs us so much more now than he did when he was back in the NICU. Shelly and I are careful to always have one of us here to comfort him now. Shelly took off for the morning to do more prep on the house so I am here watching Milo sleep comfortably.
If all goes as well as it possibly could, he will stop his caffeine today, do his mandatory ten days off caffeine to make sure he is okay without it, during that time work his way up to full oral feeds, pass his carseat test, and head home on November 13 or 14. Any of those steps could be delayed for a bit depending on him and his doctors. If he fails to breath well off the caffeine they will put him back on the cannula. As much as we hate this idea it is better than putting him back on the caffeine since as I mentioned they have to wait ten days to know if he is okay without it (seven days for it to clear his system and three days to make sure he doesn't tire without it) and the cannula can be tested off at any time. Worst case scenario, they can actually send us home with the cannula if we need it. They wouldn't do this until he reached 39 weeks on November 23 so hopefully, he won't need it and we can get out of here sooner.
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| Miles smiles at us so much - our little rewards for going through this journey with him |
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