Leveling Up Lucas - Week 1

Hello Family and Friends,

I thought I would keep an update once a day of the progress of our little man as he gains experience (as if he was in a video game) and eventually levels up so he can join us at home. 🙂 Just for instance, we are expecting that he stay in the NICU this week. I get to stay with him 24/7 while Fernando and his parents are taking care of the girls at home.

Saturday 3/16 (DAY 4 in NICU) - Currently, this is the support he is receiving:

- Oxygen: he's being given a very low amount of supplemental oxygen which is a nasal cannula (tube) run across the bottom of his nose.

- feeding tube: he has a feeding tube in where he can be given milk if he doesn't finish his bottle. He has a few aspects to his overall health that relate to his energy. The cardiologist mentioned that he might get tired out when trying to eat or move around because his heart will beat faster and the blood in his heart will mix and result in tiring him out. Lucas was eating a bottle well of a certain amount, but they put the feeding tube in to help him eat more, which will help him gain strength in the next several days and then when he can begin to eat on his own that's another indication he'll be ready to go home. Today he ate a bottle on on his own and had other feedings where he got tired half way through eating and they used the tube for the rest. Great news is that they are using my breast milk to feed him so I know he's getting the best nutrition possible and I also feel useful! ha ha. :)

- temperature: he has been getting support with his temperature and we actually had good progress. They took him off of temperature support today because he is regulating well. So this is the first success of him getting stronger in that regard.

Each day he gets stronger and moves around more. I am so encouraged. Fernando has his hands full, Isabelle came down with strep throat at home so I've been staying at the hospital and he's been taking care of her. She's got the medicine she needs and is beginning to feel better. I'll probably go home and spend some time with the girls tomorrow. We're grateful Fernando's parents are staying with us now and looking forward to us all feeling better/stronger and getting all home together. :)

Here's a video of him kicking around: https://youtu.be/ExISkm23tTk

 

Sunday 3/17 (DAY 5 in NICU)

Today was the first day of Lucas gaining weight! It is very normal for newborns to lose weight for a few consecutive days after they are born. The nurses have been increasing how much he's been eating and today he gained 30 grams. He'll continue to gain strength and weight over these next few days.

They also took him off temperature support. So he's maintaining his temperature all on his own. So now it's just the breathing tube and feeding support.

Monday 3/18 (DAY 6 in NICU)

Weight: 5lbs 14.4oz - gained 28 grams

Being Fed 80 Mls/day

Temperature Support - minimal

Breathing Support - Minimal

Feeding Support - eating some by bottle, the rest via feeding tube

Notes: He continues to be more active every day. He's been opening his eyes more and looking around as he wakes up to eat every few hours. They did put him back on temperature support last night.

 

Tuesday 3/19 (DAY 7 in NICU)

Weight: 5lbs 15.6oz - gained 34 grams

Being Fed 100 Mls/day

Temperature Support - minimal

Breathing Support - Minimal

Feeding Support - began nursing!, the rest via feeding tube

Notes: He continues to be more active every day. We didn't get much sleep last night as he was really active around 1:30am and I nursed him using a nipple guard and he actually nursed quite a bit! So now our new norm is that when it is feeding time, I nurse him and then he gets the 100 mls of milk via the feeding tube which means he's getting a ton of nutrition each day. He's been opening his eyes more and looking around as he wakes up to eat every few hours. They are going to work on weaning him off of oxygen support and the doctors shared with me the results of the blood test they took when he was born and confirmed the diagnosis of down syndrome. I let the doctors know that we already have an incredible pediatrician lined up who will meet Lucas once he's discharged and get us started with care once he's home.

 

Wednesday 3/20 (DAY 8 in NICU)

Weight: 5lbs 15.4oz - lost 2 grams

Being Fed 120 Mls/day

Temperature Support - minimal (beginning to try to wean him off again)

Breathing Support - Minimal

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!

Notes: Early this morning, they tried to take the oxygen off and ended up putting it back on about an hour later. The nurses and pediatricians think that he has been eating really well, they want to see him get up to 160mls of milk/day which will happen on Friday. He will continue to grow and the more weight he puts on, the better he'll be able to regulate his temperature so that is just a matter of time. We're weighing all his things and we'll be watching attentively to how he's doing over the rest of the week and the weekend and re-asses on Monday to get a better idea of when he can be discharged. He has an echo cardiogram of his heart that will be done sometime tomorrow and I'll talk to the cardiologist about the results on Friday. So I'm eager for that. On a side note, we had some visitors today and got some snuggles in. :)

I have been exclusively at the hospital up til today. Now that I'm feeling better, Fernando is coming to pick me up tonight and until Lucas is discharged, I'll be spending the nights at home so I can see the girls, sleep in my own bed and help with getting them out in the morning during the week and getting them to school since I can drive. So I'll be at the hospital 9:30am-7pm each day, which'll be nice.