Wednesday, April 30, 2014

One more video from last night with his eyes open. Still doing good.

Tuesday, April 29, 2014

William NICU update 4/29/2014 - extubated!

William was extubated around 1:30 PM today and so far so good!
He is also up to 23cc of breast milk per feeding.

Just after the breathing tube came out:

Ahh First breaths on the SiPAP:

On his tummy:

Saturday, April 26, 2014

Day 31 - One month old.

William is one month old today! Thank you God, Praise The Lord!!!!
 The past week has been weaning him off some support and feeding him breast milk. They started first by giving him a little just to get his digestive system used to food. He has been getting all his nutrition through the IV lines up until now. Gradually over the past week they have increased the feedings. On Tuesday he was up to 11cc and had his first poop. By Saturday they are up to to 20cc every 3 hours. On Friday they were planning on removing the TPN(nutrition) line completely. They did have to reposition his feeding tube because he pulled it out of his mouth. Now it goes through his nose instead.

Weight: William continues to pack on the ounces. He was 2 lbs 11 oz on Thursday and 2 Lbs 12.5 oz Today (Sat).

His 2nd PICC line was removed because he no longer needed it and it was starting to clot. He only has the one PICC line in and gets blood taken from his heel. I saw them do it on Friday and he didn't even wake up. They warmed his little foot up before they did it. They said his blood platelets and hematocrit have been good and he has not required any blood products since 11 days ago.

They have weaned him off of the NO over the past couple of days. the machine was still there on Firday, but turned off. He has tolerated the changes and continued to have good blood gasses. The O2 has ranged from 60-70%

I think his left foot is looking better but it is hard to tell. The left foot is turned in like a clubfoot due to not enough fluid in the womb.

Great Granddad (Poppy) got this picture with eyes open.

Here are some more pics from the week:

Friday, April 18, 2014

Day 23 update for the past week

William update for the past week:
I didn't see him on Saturday, but William's nurse told me his blood gasses were his best ever. They wanted CO2 below 55 and it was 49. They wanted PH over 7.25 and it was 7.31. They adjusted some settings but most things were the same. 
She said they were not ready to start feeding him but Saturday they were going to start swabbing his lips/mouth with milk. My daughter was going to do his first "feeding" she said she was excited about it.

This past week they did say that they have started actually feeding him breast milk every couple of hours through the feeding tube. His nurse sounded positive over the phone. I wasn't feeling good earlier in the week and I don't want to get him sick if I am sick, so I didn't visit. 

The only thing that worried me was a call from the NICU social worker who said she wanted to set up a meeting with the Drs, Nurse, her, my daughter and my wife on Thursday. She didn't sound positive at all and was even saying stuff that I didn't even think was up to date. She was saying that every time they try to wean him off of something they have to go right back up to maximum support and made it sound like they have made attempts and every time they are not making any progress/improvement. 

It's true that some things have been brought back up some, but from my understanding and what I have seen and heard, the Ventilator pressure is still down and the O2% is still lower, the dopamine for his blood pressure is lower (6 from 20) and that his blood gasses and saturation has generally been good the past week, his color is better, he is content, he is gaining weight, the edema and swelling has gone down, they are starting to feed him. 

Maybe I am being naive, but I think He's doing good! He's got 10+ weeks still until we get to his due date! I'm not sure what the social worker is trying to say? I wonder if there is a different expectation for a baby born 13 weeks early at 3 weeks old vs a baby born 10 weeks early? (gestation-ally the same age) as in He's 3 weeks old should he be further along? My non medical opinion would be that it would depend since 3 weeks old is different depending on when you were supposed to have been born.

On Thursday We got a full medical update:
They have been able to wean vent settings slightly
Have not had to go up.
Heart stress from blood vessels is a concern and they are still giving medicine for that.
In general his treatment will take a long time will need 02 and maybe ventilator. 
He has been more alert, Less puffy. Increase sedation to keep him from over-breathing the ventilator. Still on NO2.  
Feedings continue to stimulate the intestines. Will increase. 
Off dopamine completely!! (this was for blood pressure)
Stopped antibiotics!! 
Water pill will be given for the fluid. 
Was on steroids. Went back up will do for a month. Plenty of infection risks still. 
Many babies his age haven't made it. He is an exception. Praise God!
Due date up to a few months after will likely be his stay in the NICU. 
Pie looks better. Praise God!
Step down to reg ventilator is possible if the lungs improve. 

Friday, April 11, 2014

William Friday Update 4/11/2014

My wife and I went to see Grandson William and he's still doing good. They have weaned a few more meds. Dopamine is now 6 (from 20) and NO is down to 5 (from 20) and the heart medicine is lower as well and I think his color looks better.
He seemed very content overall. While we were there he looked like he was having a dream. His eyebrows were up and down and he was making all kinds of faces and opened both eyes for a second. Pretty neat. I love this little guy. I'm praying for better CO2 and PH.

He had his ear muffs off and didn't have the UV light today abd his left foot looked better:

Thursday, April 10, 2014

William Update Thursday 4/10/2014

Another good day!
Pressure weaned to 37 from 42 (no idea what these numbers actually mean)
O2 is up a little to 80% but down from last week still
Dopamine is down to 8 from 20 so he's holding up his own blood pressure.
His NO2 is down to 15 from 20
PH is a little low and CO2 was a little high so the 37 pressure is actually up from 36 for this.
He looks better
His fluid retention looks better
I forgot to ask about antibiotics/infection and they didn't mention it.
Almost forgot He's grown! Born 2 Lbs 1 oz - Now 2 Lbs 10 oz!

They want his CO2 below 55 and his PH over 7.25.

Thursday, April 3, 2014

William update 4/3/2014

William is getting 60 less breaths (down to 240 from 360) We think that's a good thing. The Oxygen has been turned up to 100% and the pressure is at 41. He is getting morphine because he has been very active. The PICC line works! The belly IV has been taken out. He got blood last night to keep his blood level at 40.

Wednesday, April 2, 2014

William update 4/2/2014

William has swelling(edema) in his neck. He got his 2nd PICC line in his right arm with 2 ports. The previous night (4/1) He got a PICC line in with one port. These ports are so all of his many medications do not have to be mixed. He started hydrocortisone steroid yesterday (4/1) for his lungs.