Wyatt is still really swollen - but it's actually gone down some. I have a hard time getting pictures of him because of how he's positioned, and the bilirubin lights make it hard to get a decent picture right now.
Zeke getting touch time.
He's so tiny.... tiny but perfect. I love him so much.
So both boys showed signs of a PDA (Patent Ductus Arteriousus) which is the valve under the heart that controls the fluid that goes into the lungs and what not - basically, it's supposed to close on it's own but in preemies this young, sometimes it can take too long and they need help closing it.
Both babies needed the medication to fix it, Zeke was starting to show symptoms and struggle with his blood pressure from it, I'll go into details on both babies in regards to their personal updates and history and why we did it on each of them and their risk and condition factors, but i'm just trying to explain it first.
The risk of NOT treating it, is if it becomes symptomatic is the blood pressure numbers will continue to spread further and further apart in numbers (they call it widening) and it starts to cause a lot of problems with blood pressure, and heart and the flow of blood and oxygen. Making them work a lot harder.
So they both had Echo's to see if they had this issue, and how bad it was.
At bedtime after first dose, they both appear to be handling it well and actually showing signs of immediate improvement, which is a good sign.
The medication is similar to ibphrophen, it tries to close the duct with out a lot of interference with other issues, they are both so tiny, the risks to them are pretty high but we had to weigh not treating it vs the risks of the medication..
The main issues they are worried about is with the brain bleeds in their head, it messes with the platelets for clotting factor that contribute to the brain bleed in their heads. Since they already each HAVE a brain bleed, we had to weigh treating them, vs leaving them untreated. We tried monitoring it first, but they started to decline, showing symptoms directly related to needing the PDA treated and closed.
The main things they worry about is the bleed factor, and making sure the kidneys and urine output stay good....
It works in 3 doses. One at 5pm roughly, one 12 hours later, then another 24 hours later.
They'll closely monitor their labs, urine output, and clot factors to make sure they are tolerating the medication before the next dose, and to ensure they don't need blood.
They will both continue their feeds, between the two of them, they are each getting 6ml of breastmilk per day right now. So i'm giving a fresh 12-15ml tube of milk per day for both of them.
The upside, is my milk production is finally starting to go up, and i'm back to producing .5 oz, to 1oz per pump session. I need more time with an electric pump, but were getting there. In 2-3 weeks, if they both do well, full feeds will require 8oz per day for both of them put together. (so 4oz of milk total per day.)
The way they measure feeds is based on weight, so when they reach 2.2 lbs, it will be 4oz per day each (8 total). When they reach 4.4 lbs, it will be 8oz of milk total per day each (so 16 total) . (although hopefully by 4+ lbs, we'll have them on the breast. The doctors totally are willing to work towards that goal with me, but we need to get them off the ventilators, their pic lines out, and get them eating feeds for real... but that's my end goal and it's what's giving me hope they'll go home and i'll get to cradle them in my arms and nurse them... I need hope and something to look forward too so the doctors have been really encouraging about my desires to do that and promising to be supportive and achieve that goal when the time comes.... being cooperative and not in their face but fully supporting them and asking questions with out being hostile probably goes a long way for the way i've been treated so far. My nurses and doctors all have been kind, patient, understanding and have gone out of their way to explain everything and gone above and beyond for me to connect to my boys, despite their uber-early entrance into the world.)
Okay, sorry I got off topic, i'm tired, and it's late. LOL
What they'd do is give blood for platelets if they end up showing signs of a bleed, but we had to understand the risks.
The reason we were able to go ahead and accept the risks for both babies were the following reasons :
They both showed signs of their clotting factors (other clot factors not just platelets) being in place on the last few blood/gas draws. indicating that there was no new hemorrhaging or deterioration in the brain. We can't confirm that until tomorrow's new head scan, but the labs and everything else looked positive in that direction. So crossing fingers. We really need them to feel better, and hopefully closing the PDA will give their bodies the additional support they need to keep growing and moving forward.
Bedtime he was stable and doing well and actually showed some signs of improvement with his blood pressure. The reason for this is as follows, and it goes for both of them, but their condition starting off was slightly different, and i'll cover all of that in just a moment.
Wyatt has been tolerating his feeds and is now up to 1ml every 4 hours like his brother.
He started to show signs of struggling more with both blood pressure and oxygen because of working harder due to the blood pressure changes. So they ordered an echo. He has a 2.5-3mm PDA and it's urgent, they decided to treat and pray that it helps with no complications because his was getting bad enough that he was declining too much to be safe to wait for the results of his head ultra sound tomorrow to check on his grade 2 bleed to see if it had for sure turned into a grade 3. I consented to letting him be treated. The risks in his situation were too urgent to really play it safe on the brain bleed, in order to start the medication to fix the heart issue. They'll give him blood and clot factors if he needs it and monitor his head as carefully as they can, but the heart needed fixed... The pro's for him definitely outweighed the con's in his situation if we want to keep him alive and safe. They really believed this would work out with minimal issues, so I trusted them.
He had a dose of morphine in the morning to help with pain and keep him calm but he was weaned off it by this evening so as far as I know, he hasn't had anymore since this morning.
He went up to 19 from 18 this morning as they started weaning him off the nitric oxide. He went from 2 down to .5 and they are hoping to have him weaned off it tonight.
(Mom note, Wyatt has really, really long hands compared to his brother. He's got big, gigantic boy-hands!!! LOL)
The nurse allowed me to hold his foot for a minute and let him know I was there. But he hasn't been handling stimulation well, and we both agreed that the less is more with him right now.
He needs to get healthier before we handle him so he tolerates it better. I'm sad about it, but his health is more important to me then getting to put my hands all over him right now. I'm just grateful I got to let him know I was there for him for a minute.
He is still really swollen and his bruising is getting better. the swelling is worst in his face and neck, and they are reducing his fluids because of that. (which is a sign of the PDA being worse or getting worse - which is why it became really important to treat. his swelling in his face/neck were not improving.)
Despite all of that, compared to where he was on monday, he's doing fairly well, stable. He still has bilirubin lights but they are going to try to turn them off soon and they stopped antibiotics.
The doctor said they think we can have some hope for him at this point, and we can be positive about his outcome. It's obviously VERY dicey still, but he's pulled through a situation already that most babies don't, and he's a fighter. That's something to have faith in.
Zeke also is doing well and stable - despite needing the PDA treated. Same risk factors as his brother, except his is smaller, 2mm and less extreme. He has no swelling, but he started showing symptoms of issues with his blood pressure too and we needed to treat. His was described as being "tiny" compared to post PDA's in babies his age. Which was good, but still enough to need treatment based on how he started struggling with symptoms from it.
He'll get his levels on his bilirubin in the morning since he's been off the lights for a while, more labs, gas levels, platelets, and clot factors, another ultra sound to recheck his bleed, but the doctor suspects it's stabilized for now. (lets hope so!!)
They are hoping the treatment will allow his vent settings to go back down and his blood pressure to stabilize and allow him to feel better so he can relax a little and tolerate more progress slowly over time by fixing the heart issue.
Feeds are also 1ml every 4 hours, so he's getting 6ml per day right now.
He still hasn't pooped, so he got a suppository. antibiotics have stopped.
Touch time is obviously being allowed : http://youtu.be/yFDiGhCKG-g
His prognosis for today is "Very hopeful outcome at this point" (of course it could change, but based on what he is TODAY... he's got a good chance of coming home.)
on Apr. 25, 2014 at 2:57 AM