Saturday, May 31, 2014

William update - 67 days in the NICU

67 days in the NICU:
5,788,800 seconds
96,480 minutes
1608 hours
67 days
9 weeks (rounded down)

We met with the NICU Staff taking care of William Friday and got an update from his doctor. OT was there and did some stretching exercises with him. Basically overall the lungs continue to be the concern. They are focusing on getting him to grow. He is still at risk for all sorts of problems but we are just focused on praying for him and loving on him as much as possible. 

We got to see him get a bath today and helped with some of his physical therapy. After the meeting they gave him the bath and he loved getting the water squeezed over his head. He even got some bubbles added for a Jacuzzi effect. 

Mad face

After the bath he got a massage from his nurse and we got to help. So much loose skin on this boy.

Earlier in the week William's Sister and brother visited with him. She cautiously held him. I think she was intimidated by everything in the NICU. 

Tuesday, May 27, 2014

2 Months old 4+ Lbs

This week William turned 2 months old and crossed the 4LB mark. He had to go back on the SiPAP machine because they were having to increase the O2 with the cannula. The eye surgeon saw him on Tuesday night and said that his eyes had changes but that he was not bad enough to need surgery. He got his first bath - I only have a few pictures but we will get video of the next one.


Friday, May 16, 2014

7 Weeks old and making progress!

51 Days old today (Friday)
This has been a big week for baby William the Warrior. We are thankful for your prayers and praise God for his continued progress. A big thanks also to the NICU staff - Nancy, Lauren, Jamie, Andy, Lori, Maurine, Kathleen, Dr Hayashi and others!

The two big accomplishments are crossing the 3 Lb mark and even bigger - moving from the SiPAP to the CPAP to the high flow nasal cannula. He really likes being off the SiPAP and having that big mask smashed up on his face.

When I saw him on Tuesday He was still on the SiPAP and it looked like he was trying to do baby pushups. He even turned his head completely around the other direction which I thought was pretty impressive.

Last Friday night and on Sunday when we saw him he just seemed unsettled. This week he was better and way more relaxed on the nasal cannula. They were even giving him drops of milk on his binky.
Normal progression is from a ventilator to the SiPAP and then the CPAP and then the nasal cannula. I was surprised to see him on Wednesday with the cannula since I never saw him when he was on the CPAP. That's because it was only for a few hours overnight. 

Thursday when I stopped by he was really relaxed. He has been on 5 liters of O2 with percentages in the low 40's which is the same as he was on the SiPAP which is good since typically this is less support and babies commonly need more O2 on the cannula.

He ended the week at 3lbs 3.15 oz. PIE seems to no longer be a concern. No X-rays done recently. They have stopped doing the nas score, no morphine anymore. He's still getting some diuretics and electrolytes but they stopped the caffeine which was used to keep him stimulated and he hasn't missed any breaths in a while. He is getting an iron supplement. 
Premature babies sometimes have issues with the blood vessels in the eye which are from high O2 levels. If the blood vessels start growing abnormally they can cause retina detachment and blindness. ROP which I believe is Retinopathy of prematurity. Eye surgery is done by laser right in the NICU and is usually successful.  William's eyes showed some signs of this but the eye doctor will see him again on Monday and make a decision on surgery. 

Saturday, May 10, 2014

Day 45 in the NICU

The past week or so has been about the same with a few ups and downs overall.
As of Friday night he was 2 Lbs 15 oz - 3 Lbs here we come!

Stopped in to see William on the way to work Monday morning and he was content and a little bit alert. I saw him looking around a bit. They have been able to wean the settings on the SiPAP machine a little bit (BPM 15 to 10) and the O2 I didn't notice today but they said it was 40 or in the 40's this weekend.

He had just had a head ultrasound so his hair was all gelled.

On Wednesday my Daughter got to hold her little boy for the first time ever! I got to talk to them over facetime which was pretty cool to see.

His doctor said that his foot does look better as time goes on. She said that occupational therapy has seen him and is probably going to make a little splint for his foot.

Saw him Friday afternoon. I needed a visit to cure an otherwise stressful day. Overall about the same. I didn't get a lot of details but he's doing good. Very content laying there sucking on his binky.

Scores are better for nas (not sure what that stands for) so lower dose of morphine. He has a new mask and headgear that they think will be a little more comfortable.

This was from late Friday night/Early Sat. They were re-doing his feeding tube and mask and I got a video of him with no gear in the way. The tape is still on his nose and lip and the prongs have stretched his nostrils out so he has a little piggy nose, but that will go away.

Friday, May 2, 2014

William is making progress! NICU update day 37

Day 37! Wow. I almost didn't stop on my way home to see William but I am SO happy I did.
He is doing really good!

First the update and then some pics and video.
PICC line is out! no more IVs
Ativan no more!
Meds are all going in feeding tube now. Morphine is every couple of hours now vs IV.
22cc of milk and 26 calories fortified.*They are starting to up his calories.
O2 had been as low as 39% today!
7.37 PH and CO2 in the 40's which is better than he has ever had including the jet ventilator!!!

Praise God from whom all blessing flow…
Thank you all for your prayers for William and family.

FYI William's NICU nurse Lauren is doing the March for Babies tomorrow. Here is her fundraising page. If you donate put something on there saying where you are from or heard about William:
Lauren's Bayview NICU March for Babies fundraiser page

Listen to this little guy who finally found his voice:

Sneezing and more crying :) (I was too)

He's got plenty of skin to grow into. Looks a little like a hairless shar pei ;)

For size perspective. 

He's gonna be mad at me for taking this one. His face is all kind a scrunched up here.