An Update from Jeff

Hi, this is Becky again. Jeff just called me and here's an update he wanted me to post for him:

• Yesterday the doctors did a brain scan/ultrasound on William and discovered some dark spots on the left side of his brain which might indicate that some brain cells have died. This could mean he may end of having cerebral palsy and unable to move his lower body. Although, he is moving his lower body quite a bit and ultrasounds aren't always correct, so this is unsure.
• There is a really important big tube that goes into William's belly button and is used for testing his blood, blood pressure, and a whole host of other things that measures how his body is doing. Right now the tube isn't working. They think there might be a blood clot in there. If the doctors take the tube out and replace it with a new one, the clot could dislodge and cause damage to other parts of his body, or he could get an infection. The other option is to put the tube in his foot, but that would cause his foot to swell very large. They are going to try and replace the tube in his stomach, but there's definitely risks.
• William is on 100% oxygen right now and has had his 3rd dose of steroids to help his lungs. The longer he is on oxygen, the more damage it can cause his lungs, which are already small and may be underdeveloped. The steroids should reduce inflammation but this also causes his immune system to be weakened. The goal is to try to use the steroids so his lungs can heal and grow, and have an easier to accept oxygen so his blood gets the oxygen he needs to all parts of his body.
• William is getting a little bit of breastmilk every 6 hours but it's just to prepare him for receiving more food later. If they give him too much, his blood will circulate more in his digestive system rather than in the areas where he needs the most healing. 

• The doctors are very worried about William but it's too soon to tell what will happen. As noted above, William has a lot of risks, so keep praying. He's managed to survive these risks before so we hope that continues!

Here's some good things that happened:

• Jeff and Melissa were able to see William without the top hatch of the incubator
• They could hear his little voice as the ventilator air flowed past his vocal chords (which is normal). Jeff said it was like a little squeaky breath, in and out, and very cute.
• William was holding Jeff's finger very tightly today!
• William is still moving around a lot, which is good.
• He has blondish-red eyebrows like Jeff. :)

Please keep praying for William:

• The tube can be replaced without any issues
• His lungs would grow and heal quickly
• The spots on his brain will turn out to be nothing
• That he won't have any damage to the rest of his body
• That he will not get any infections

Power of Prayer

For those of you who are prayer warriors, the next few days may be very crucial.
William did start out strong, but because he's so little, he's gotten pretty tired by now and needs a lot more extra support from his breathing machines and drugs. This morning, he had a pretty rough day apparently.
We've been having to keep upping his blood pressure medicine, and today we had to start him on a more powerful steroid to replace the hydrocortisone to try and reduce the inflammation in his lungs. This is to help him reach the oxygen saturation in his blood that he needs to survive. There's a host of other risks with this drug, and he's getting the minimal amount for the shortest possible period where it may be effective. So while that is scary, it's also somewhat a matter of survival or not.
So far he seems to be doing well with it. We'll probably have a better idea tomorrow, too. Since he's been on pure oxygen for over a day, it's important that we wean him off of it, because that much oxygen can be toxic, so hopefully we'll be able to start weaning him off of it slowly tonight.

Facing that William is in more of a critical condition today than he was a few days ago is really hard. I don't really know what other details to go into just yet, because we don't really know for sure how the drug may otherwise affect his body. It could slow his growth. It could cause brain damage. But this is also what he needs to survive right now. And all I can hope is that his feedings can increase and that he will get what he needs to overcome this rough patch. Pray, pray, pray. Cry out.
I was reminded today that God's power lives within each of us, so I'd like to think that harnessing that power could accomplish another miracle.

Happy 1 Week!

We have gotten to know William for a week now.
It's been a blessing to touch his head.
It's been a blessing to have him squeeze our finger in his palm.
It's been a blessing to smell him.
It's been a blessing to get to be part of his feedings.
It's been a blessing to meet and see this remarkable human being who is part Jeff and part Melissa.
William is SO CUTE.

Mommy's Recovery So Far

So surprisingly, my recovery from delivering William has progressed smoothly. I've felt better and stronger than I have during most of the pregnancy and I don't really seem to be having many labor related aches and pains. 

I do notice the effects of prolonged bed rest test, though. My lower back is killing me and super weak, I'm having to be very conscious of trying to correct my upper body posture and I can use my abs again. 

My sleep schedule is pretty crazy since I'm trying to establish a good milk supply for later on (and that's going pretty well, considering I'm a Preemie mom). 

Most days I still want to save my energy to make the walk from the parking garage to the ISCU (on opposite sides of the hospital...) and to be able to stand for longer amounts of time so I can touch William. So when I'm at home, I'm trying to make myself chill, even though I have all these projects I want to get my hands on and I really enjoy having the energy to take care of myself more. Hurray for getting my own beverages (except this morning... I was already hooked up when I realized I was thirsty and asked Jeff to supply me, lol)!!

When I go back to my next postpartum check up, I will be treated as low risk, for which I'm grateful.

The Race Begins

We've seen some changes over the last day and a half. Some good, some expected, some worrying me and Jeff. 

Let's start with the good:

William responded well to my milk, so he now gets to eat every six hours. When I held the syringe today, he squirmed a little when he started feeling it trickle down into his belly ❤

William was a lot calmer today. Probably because they went up on his pain medication a little yesterday, but also because he's on a different respiratory machine today. 

The nurses replaced one of the IVs that went into his belly with an IV that is in his leg and can be much more permanent, possibly even stay there for a month.

We taped a picture of Jeff and me to the incubator, William is looking right at it. If he opens his eyes, he'll see us, although he probably won't be able to see much.

The expected and more complicated news that puts is on edge:

He got switched to a different breathing machine. That in and of itself isn't bad, but the reasons for that happening (the blood pressure difference between his lungs and the rest of his body, and the heart bypassing blood flow to the lungs sometimes, leading to undersaturation of oxygen in the rest of his body). So today, with the ventilator, he's also on another drug/gas that is being mixed with his air to relax the blood pressure in his lungs. At the same time, he's been getting dopamine again, and they've increased the dose somewhat throughout the day. 

In addition, he was testing high for carbon dioxide in his blood, so they've had to turn up the ventilator to force William to take more breaths per minute. Over the course of the day, they've gradually had to keep increasing the breathing rate. He's getting close to maxing out the speed of the machine, so he may need to go back to the oscillator sometimes tonight. His latest blood test tonight looked good enough for them to leave the settings as is for now.

What we really need prayer for:

It seems that we have now reached a point where it's apparent that William's lungs have exhausted themselves and he needs more help. Now, we're in a bit of a race. Can his body grow and heal his lungs faster than they are being damaged by the life support he's receiving? We hope that the increased frequency of feeding with breast milk will give him what he needs to heal and beat the clock. It's also good that he got a break from the oscillator I guess, to change the stress he's been undergoing. So, pray that William's lungs will grow and heal faster than they are being hurt.  

Lungs -new info-

So, William's Doctor says he's generally doing pretty well, but this afternoon they decided they needed to go back up on the hydrocortisone to stabilize his blood pressure. William has been shunting (at least that's what the nurse called it, I think it's spelled correctly?). His blood pressure in his lungs is too high from the stress they're under, and since he's little enough that he has an extra hole in his heart, the blood can somehow bypass the lungs and get into his system, so that some of his blood is not as highly saturated with oxygen. So they poked and prodded a little to make sure that resuming the original hydrocortisone dose is the best course of action. We are expecting that since his lungs have been taking such a beating, that they are basically getting exhausted and that he might be needing stronger support from the oxygen machines. There's still different drugs and settings they can use to change things up. Regardless, he will still be getting milk everyday from now on, and that is probably still the best thing for him to get, even to help with the lungs. GROW GROW GROW.
After they repositioned the breathing tube today, he was much much happier. Not squirming and seemed more stable. But we needed to be more hands off with him today, which is hard. He's getting enough stimulation already, and it's more important for him to chill and let the machines help him. We need to be prepared for a lot of ups and downs with his lungs for a while.

And a few hours later, in the words of Jeff who called in for an update on his way home from work:

Ok... so I don't know how to do updates on the blog, been too busy.  But the latest is that:
  He wasn't getting enough oxygen through his body with the oscillator, but he did better when they were "bagging" him by hand.  So they moved him to a normal ventilator, and so far he seems to like it better.  The doctor I spoke with thinks that's a good thing, because it means his lungs are more developed to handle the normal in and out breathing.  His blood pressure was too low, so they put him back on dopamine.  The air pressure from the ventilators is too high, so they are mixing the air with nitrous oxide to lower the air pressure.  The combination of low blood pressure and high air pressure going into his lungs causes his blood to reverse flow, due to an artery that's open in the heart in small babies (Melissa called it  a hole in the heart I think).  But it's not really a hole... just a vein that doesn't close until later in life.  It's supposed to be open when the baby is inside the mommy.  So, for now William is stable, but he is on more and different machines.

Feed Me!

Today, William received his first real food provided by mommy!
His blood numbers were stable enough where it was time. His blood sugar, which had been high, measured in a normal, his salt levels were better, he didnt need sterile water anymore, and has stayed off of insulin and dopamine. His hydrocortisone dose is being reduced as well.

The feeding was pretty special. Our nurse filled up a syringe with a ml of milk/colostrum and I held it above William's head. It just trickled right down the feeding tube going through his nose. When he got his first taste, he literally clapped his hands! He sort of half missed them, though. I've been watching him for almost an hour now after the feeding and he seems to be tolerating this new experience pretty well, according to his vitals.
He will "eat" three times daily for now, every eight hours. Gradually, it will become more frequent.
So proud of you, William Elliot.
And William's doctor was very optimistic today, as well.