Leveling Up Lucas - Week 2
LUCAS' PROGRESS
Rounding into another week. Things are looking so great in general. Our man just needs to get a little bit stronger. Now that we both have a whole week under our belts in healing and adjusting, I think we're in much better shape!
Here are the updates from the 2nd week in the NICU and very likely the last week!
Feeding Support - in a habit of nursing and also through feeding tube. the nurses give him a bottle when I'm not there for a feeding so he's getting lots of practice!
They removed temperature support today at 5am! Lucas hasn't needed temperature support all day so that is looking good! He's been tolerating increased milk consumption so they are going to increase by 10 mls in the morning and try 10 more mls for his evening feeds to see if we can get him up to 140mls today. Lucas would have been 37 weeks today, which is the earliest they would consider a baby full term. :)
Lucas also had an echo cardiogram today. I'm excited to talk with the cardiologist about the results tomorrow. The pediatricians came by and said that Lucas looks good. Lucas continues to eat more and more by bottle so once he catches up to eating as much as 160mls, they can take out the feeding tube.
Friday 3/22 (DAY 10 in NICU)
Weight: 6lbs 1.9oz - gained 24 grams - officially back up to birth weight!
Being Fed 140 Mls/kg/day
Temperature Support - off!
Breathing Support - Minimal
Feeding Support - continues nursing w/ nipple shield & bottle, the rest via feeding tube
Notes: Lucas had a echo yesterday. Talked with the pediatrician and they said that they were able to talk with the cardiologist and the echo results are unchanged from last week. The echo looks at his heart defects and how the blood is flowing as well as measure pressures in the heart so it is good that it is unchanged because we don’t want to see the pressures and flows to get worse. I can talk more with the cardiologist early next week. The heart defects are a factor in his energy and his need for oxygen so even if he needs to stay on oxygen, if he gets strong enough to eat enough by mouth, then we can bring him home and keep him on the oxygen. Early next week they will also look at trying to remove the breathing support again and see how he tolerates it.
The pediatrician is happy with how much Lucas is eating each day. The goal is to get him to 150mls/kg - per day and he’s at 140 today. They are going to let him hang out there today and increase it to 150mls/kg tomorrow. That’s where Lucas will stay and then it will just be a matter of how much he’s eating by mouth each day. So far, that has been a matter of how much energy he has - he drank 19% by mouth yesterday, but they’ve also been increasing how much milk he’s been drinking too. So now that they will be holding that steady, we can get a better picture of how much he’s drinking each day and see that percentage increase over the next several days. Once he gets to 80% then they can remove the feeding tube and look more seriously about when he can come home.
Saturday 3/23 (DAY 11 in NICU)
Weight: 6lbs 4oz - gained 60 grams (that's the most so far in one day!)
Being Fed 140 Mls/kg/day
Temperature Support - off!
Breathing Support - Minimal
Feeding Support - continues nursing w/ nipple shield & bottle, the rest via feeding tube
Notes: Pediatrician did talk to me a little more about the results of his echo and touched on the possibility that he could likely go home with the oxygen and get that support as long as he needs. Which would bring us just down to see how he's feeding by mouth these next several days. They plan on having them do another echo on his heart on Wednesday. We can see how he eats until Wednesday and then re-asses. It is a possibility for him to go home with the feeding tube as well, but they'd like to avoid that if possible and they think he has a realistic chance of building up his strength to eat well enough on his own by this Friday (3/29). So we'll just be supporting Lucas until Thursday and then have all the conversations around his heart, and his feeding and see what we want to do.
I'll include in the summary details above what % of his food he's taking by mouth either with nursing with me or by bottle. As a staring point, on Thursday he ate 19% by mouth and yesterday he had a more sleepy day overall and ate 11% by mouth. So we are likely to go up from there. The nurses and pediatricians did mention that with down syndrome, it would be totally normal for Lucas to have more energetic days over all as he grows, but to have a day or two along the way where he just seems more sleepy.
Sunday 3/24 (DAY 12 in NICU)
Weight: 6lbs 5oz - gained 60 grams
Being Fed 140 Mls/kg/day
Temperature Support - off!
Breathing Support - Minimal
Feeding Support - continues nursing w/ nipple shield & bottle, the rest via feeding tube
We're just hanging out today. Here's a picture and a video of our Lucas kicking around a bit. ☺
Monday 3/25 (DAY 13 in NICU)
Weight: 6lbs 6oz - gained 45 grams
Being Fed 150 Mls/kg/day
Temperature Support - off!
Breathing Support - Minimal
Feeding Support - continues nursing w/ nipple shield & bottle, the rest via feeding tube
Notes: Exciting day! First thing this morning the nurses and pediatricians came in for updates and to check out Lucas. They made it very clear that their intention is that Lucas can come home on Friday! So we'll be getting ready this week. They have to put in requests for all the supplies we'll need. He'll be coming home with oxygen and the feeding tube so they'll be training me on how to do all that stuff - I have been watching/helping the nurses while I've been here so I'm fairly confident I can do it, although it is a bit daunting. I'm glad they'll be training me. The biggest missing right now is I haven't talked to the cardiologist yet. I DO have a few questions for them, but I'll talk to them either today or tomorrow. They'll do an echo cardiogram on his heart while we're still here, on Wednesday, then we can talk to the cardiologist again on Thursday and then get discharged Friday! We have a plan!
This time in the NICU has been very precious, especially because I expect our lives to be full of appointments and check ups for Lucas once he comes home with us. So bear with us as we get a feel for our new lifestyle with our little man at home! We love you all and thank you for your continued support, thoughts, and prayers! I also finished crocheting him a hat! I need to make some adjustments, but I think it'll work for his first hat!
Tuesday 3/26 (DAY 14 in NICU)
Weight: 6lbs 6oz - gained 5 grams
Being Fed 150 Mls/kg/day
Temperature Support - off!
Breathing Support - Minimal
Feeding Support - continues nursing w/ nipple shield & bottle, the rest via feeding tube
Notes: Pediatricians have talked a little more with the cardiologist and he actually said he doesn't need to do an echo cardiogram on Lucas before he leaves the NICU. We would have been waiting for that to be done on Wednesday this week. So now that we don't have to worry about that the only thing really to be done before Lucas leaves is for me to be trained on how to use his oxygen and how work his feeding tube. So if we can get that supplies and get me trained in the next couple days, he could come home late on Wednesday or Thursday! ☺ I'll keep you all posted!
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