Thursday, July 31, 2014

Two Months Old!

Micah is 2 months old today!!  I think he can officially be dubbed a Washingtonian.  He weighed in at 8lbs 2oz. Still so little! Here's a picture of the little guy :)

The doctors restarted his feeds last Thursday and today we are up to 5mLs per hour. So proud! 

We had a slight hiccup this morning. He randomly vomited just as his physical therapist was unwrapping his swaddle. The nurse notified the doctor and the doctor said if he does it again then they need to stop the feeds. So of course, he threw up for a second time! They turned off his feeds. It was hard to watch because it's taken us so long to get him up to a measly 5mLs! Also, I didn't see how stopping feeds would prevent him from vomiting again as his vomit was all bile and his feeds are going directly into his intestines.

I brought up my concerns to the nurse and she agreed with me. Then she suspected that he's still withdrawing even though they increased his methadone dose. The doctor said to reassess him after an hour. If he hasn't thrown up then we might be able to restart feeds at 5mL again. It's been 2 hours, he's doing great, and they just restarted his feeds! Woo!

The doctors also said they wouldn't try taking Micah off the vent again until he is at full feeds, 18 mLs per hour. Who knows when that'll be!

Still no timeline for coming home. I've decided Micah likes to take his sweet time. And I've been making friends with other CICU moms - it makes things a bit easier around here. 

Anyways, Dylan and I are feeling much better. Thanks everyone for the continued prayers :)

Wednesday, July 23, 2014

Breathing Tube and Feeds

This week has been somewhat uneventful but Micah hasn't been progressing as smoothly as we'd like. Micah, who hasn't had any food in his stomach for over two weeks, was reintroduced to breast milk on Monday via feeding tube directly to his belly. They started him at 1mL/hr. He seemed to be tolerating it so they increased it to 2mL/hr on Tuesday. 

The doctors stopped feeding him by Tuesday night because his intestinal NIRS (his NIRS monitors oxygen saturation of his brain, kidneys and intestines) were steadily declining. By this morning, Micah was a dusky gray color, he still hadn't had a stool, and his NIRS were low enough to cause concern among the nurses and doctors.

They ordered an x-ray of his intestines and planned to give Micah a suppository. Thankfully, the x-ray was normal and by the time the doctors notified us, Micah had pooped (before they gave him the suppository; and there was no blood!) and his intestinal NIRS we're picking up good oxygenation.

The doctors concluded that Micah wasn't tolerating his feeds and that they'd have to approach it much more slowly over the next few days.

Separately, we're having trouble weaning him from the breathing tube. Micah was on versed (pronounced ver-said) and morphine for anxiety and pain relief. In order to wean him from those drugs, they used methadone and ativan to help with his withdrawals. Now he's only on methadone and ativan, but both of those drugs make him too relaxed to breath above his vent. For example, the vent gives him 15 breaths per minute, and the doctors expect Micah to take an additional 15 breaths, however, Micah is not taking any additional breaths. And now he's going into withdrawal from the ativan and methadone! The doctors are still trying to find a good balance between relaxation and independent breathing...

Also, Dylan and I have come down with some sort of illness. Dylan came home from daycare today with a crazy fever, a cough, and a swollen/oozy eye. I just have a sore throat and a bad headache. I hate to be sick because I don't want to pass anything to Micah :( I've heard it before and I'll go ahead and repeat it; parents shouldn't be allowed to get sick.

Anyways, keep praying for us!

PS: This is a special thank you to everyone who has brought us a meal. You have no idea how much of a time saver it's been in the evenings and the left overs are perfect for lunch at the hospital. So THANK YOU! :)

PPS: Please pray for our small friend Caleb who will be going into surgery tomorrow.

Friday, July 18, 2014

Progress After 48 Days in the CICU

This past week has been so awesome! Micah has been progressing wonderfully since he had his second cath and was removed from ECMO. 

His stools have been blood-free and his X-rays indicate he doesn't have NEC anymore. His antibiotic treatment ends Sunday which means they plan to reintroduce breast milk via feeding tube on Monday!!

The doctors tried to extubate him on Monday. His heart rate remained stable, blood pressure was stable, O2 sats looked great but his breathing was labored and quick and his CO2 levels were too high. He began to look a little purplish and after about 30 minutes they decided to reintubate him. They determined his heart function is great but his lungs need more time to develop and get stronger (which is why I'm so excited about starting feeds on Monday!). It seems like a set back but I'll take it!

Since then he's been super alert and they've LET US HOLD HIM EVERYDAY!! Sooo good for my soul <3 Also, they've weaned his vent settings, his arterial line (which monitored his blood pressure in an artery in his wrist) was removed, and his milrinone and morphine drips were stopped! They also did another test today where they turned off his vent (without removing the breathing tube) and he passed, which is huge!

I feel like I'm seeing a speck of light at the end of this dark tunnel. I'm afraid to get too excited though. But the thought of finally bringing him home is just too good not to think about.

Thursday, July 10, 2014

Micah is off ECMO

Last Monday evening the doctors gave the go ahead to wean Micah off ECMO.  Laura and I were really excited, but also felt concerned about the doctor's hopefulness.  We couldn't help but feel they were deciding to wean the ECMO simply because there wasn't any other better option of what to do. After multiple attempts at weaning the vent, I was prepared for the wean to go poorly.  Laura was at the hospital and sent me nearly hourly updates.  Each hour, they turned down the amount of work that the ECMO machine does in pumping and oxygenating his blood - while monitoring Micah's oxygen and heart beat.  Every hour progressed just fine and by the next morning he had successfully weaned to the lowest settings and still maintained solid oxygen levels.  At some point prior to the morning x-ray, part of Micah's lung collapsed (pneumothorax).  I definitely felt that this would cause a delay/cancellation of the decannulation (removing ECMO entirely) - but the doctors were able to remove the air that was between his lung and chest cavity and they didn't cancel the decannulation.  The last step was to have the surgical team remove the cannulas (tubes) from his neck.

After waiting around all day and being bumped in line, the surgical team came and performed their job.  Laura and I waited in the family waiting room for the surgeon to contact us.  Sure enough, everything went fine and Micah was stable. 

Micah's now been successfully off ECMO for a few days and they are even beginning to wean his ventilator.  The vent really helps keep his oxygen saturation levels high, but it also prevents us from holding him.  Even though in some ways, we are back to where we were a couple weeks ago, we are so thankful to be off ECMO.  There are so many risks involved.  Micah had a couple of clot scares and the recent development of blood in his stools could be from the ECMO machine.  We were talking to another couple at the CICU who said their baby, while on ECMO, was at a major risk of needing a foot amputated.  For some reason, there was no blood circulating to their baby's foot.  Thankfully, the doctors allowed a last ditch effort to get off the ECMO machine - which worked. 

Our main concerns now are the blood in his stool.  The concern is that he may have early symptoms of necrotizing entercolitis (NEC).  Hopefully the antibiotics will work and it doesn't escalate. 

Now that we're back on the vent, if everything goes well, we could be off the vent in about a week, be removed from the CICU and sent to their "step down unit" in the HKU (heart and kidney unit) in about 2 weeks and then sent home in about 3.  Micah's finally able to move around and interact with us.  It's very difficult to be a family divided like this.  I can't wait for the 4 of us to be at home, for Dylan to see Micah again and for Micah to grow and be healthy.  

Micah's already over a month old, but looks like he's still a newborn.  Here's a photo of Dylan and Micah at the same age. 

Thank you for the prayers and support.  Laura and I are amazed by how large our prayer network is.  The meal deliveries are wonderful as well. 

Monday, July 7, 2014

Weaning Off ECMO?

The last few days, and especially the first part of today, felt really discouraging. Shortly after Micah's cath on Thursday we were originally told they'd want to start weaning him off ECMO on Saturday. Saturday morning rolled around and they told us that Micah's surgeon, Dr. Jonas wanted to delay weaning until Monday in order to allow his collapsed lung to rest more. A few hours later we were told that Dr. Jonas decided his PAs still looked too small and they'd want to keep Micah on ECMO for a few days after Monday. How frustrating!!!!

Besides that, the weekend was pretty uneventful.  Ray had a conversation with Dr. Futterman (an ICU attending) about the factors of weaning the ECMO. One thought that really sticks out is when he said, "Micah has a tendency to get worse over time." 

Then last night around 2:30am when I called the nurse to check on Micah, he told me Micah had blood in his stool. They were, and still are, concerned that he might have NEC (a serious infection of the intestines). He's on antibiotics and they're monitoring his abdomen for hardness and discoloration and they'll continue to monitor his stool.

So when Ray and I got to the hospital this morning we were feeling super discouraged about everything. Micah's condition just slowly seemed to be deteriorating.

To top off our seriously discouraged moods, we had a conversation with his Cardiologist, Dr. Donofrio about what they planned to discuss at the Surgical Conference today. I asked her to be frank with us about Micah's condition and she said "Micah's a very sick baby and it is possible he could die." I've always known from the beginning that that was a possibility but actually hearing it was very difficult. I felt very hopeless and began Googling other blogs about babies who never made it off ECMO. 

Probably not the best idea.

The Surgical Conference ended at 6pm and Dr. Donofrio found us afterwards to give us the update. She said all of Micah's doctors looked at images from his cath along with images from an echo they performed earlier today. They were pleased with the images and all agreed that Micah can start to be weaned off ECMO tonight! Praise God! I'm afraid to get excited because multiple doctors are hesitant to take this step... But it does give me hope!

Anyways that's the latest. I can't believe the number of emotions I'm capable of feeling in one day. Hopefully tonight's weaning goes well!

Thursday, July 3, 2014

2nd Cath Procedure

Thank you everyone for your prayers. I think they are working! Today was a pretty hectic day. Early this morning the doctors had scheduled Micah for a cath procedure at noon. At 11:30am the ECMO specialist noticed a small clot starting to form on the arterial cannula (the tube that carries oxygenated blood from the ECMO machine to his body). Clotting (as well as hemorrhaging) is one if the major risks associated with being on ECMO. So the doctors decided they needed to remove the clot and they made me leave the room for the process.

A doctor had come to the waiting room to notify me that they successfully removed the clot. They also mentioned that while they removed the clot, Micah had desatted to the 40s, but only very briefly. This desat just reinforced the importance of trying to find out why this was happening.

The cath procedure was pushed back to 3pm. They took him to another floor in the hospital (which for us presented a scare in itself - Micah doesn't do well with in transport). He made it safely to the cath lab and the procedure was underway. About an hour and a half later the procedure was over and the doctor told us he found severe stenosis (narrowing) of the conduit due to scar tissue. They expanded it with a balloon procedure and now there is much better (but not perfect) blood flow to the lungs. 

Yay!! We were both so relieved and happy and excited that something had actually gone right!

In our moment of happiness the doctor reminded us that the scar tissue could regrow and he could need another cath. We could deal with that because at least we KNOW what the issue is.

Also (drum roll) they said they hope to have Micah OFF ECMO by Saturday!!!!!!!! That was music to my ears. I really hope and pray he is stable enough to come off that machine. As thankful as I am for it's life support, I am terrified of Micah hemorrhaging or having a stroke. 

By the time Micah was situated in his room it was 7pm. Ray and I both decided the last two days were enough excitement for us and so we headed home.

About an hour after we left we got a call from another doctor who informed us that there is air in his chest cavity and it caused his right lung to collapse. They'd need to put in a chest tube to remove the air and re-inflate the lung. Thankfully they don't think it'll delay Micah from getting off ECMO.

You win some, you lose some. But I feel like today was an overall success and I'm SO looking forward to getting Micah off the ECMO machine!

Thank you all again for the kind words and messages!!

Wednesday, July 2, 2014

Prayers Needed

Things in the CICU change so fast. 

About 20 minutes after I posted my last blog, Micah began to desat down to the 30s. During the first desat, the nurse and the respiratory therapist were able to bring his saturations back up. Five minutes after they left the room, he desatted again. They brought him back up but it took more time and a few more hands. It happened for a third time and I found myself in a room full of doctors and nurses.

Next thing I know I'm speaking with the director of the CICU, Dr. Berger. He's explaining that Micah is unable to keep his saturations up without constant intervention. They had to give him epinephrine and bicarbonate to artificially raise his blood pressure to push blood to his lungs.

They ordered an x-ray to ensure correct placement of his breathing tube and ordered an echocardiogram to analyze the function of his heart. I could hardly believe the room could fit anymore people or machines. The x-ray results were good.

I became irritated because doctors and nurses would speak in low voices to each other with their backs turned towards me. I kept hearing, "cathetarization" and "unable to maintain levels." I tried to ignore them by looking at Micah who seemed to be growing paler by the minute. Looking at him made me want to fall apart and I really wanted to keep it together until I knew the plan.

Every so often a doctor would come up to me and brief me about what was going on. Finally a surgeon, Dr. Nath, approaches me and says that Micah is unable to stabilize himself and they have to put him on ECMO.

My heart just sank and I began to cry.

ECMO is a heart and lung bypass machine. It's a machine that provides temporary life support. I don't want to explain it here, so you can Google it if you'd like, but it's basically a last resort when the heart and/or lungs aren't functioning properly.

I spoke with Dr. Donofrio who explained that the echocardiogram showed a narrowing of the conduit leading to his pulmonary arteries. As a result, blood flow to the lungs isn't good and they would need to perform a cathetarization to confirm the results of the echo. He'll probably get a cath in the next 24-36 hours and if all goes well we can begin weaning him off ECMO.

It's unbelievable how quickly things can go bad. I feel terrible. I can't even imagine how Micah must feel. Please pray that the risks associated with being put on ECMO are avoided and pray for a quick and safe weaning from the machine.

It's hard for me to comprehend that I have one child on life support and one completely healthy child at home. Why?


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Micah's a Puzzle

Medical Update

We're still at the hospital. No timeline for coming home (because that's the second question everyone always asks - first question is, "how is Micah"). 

Yesterday the nurse noticed that Micah was twitching his arms and legs in unison for 6-10 seconds. There is concern that this could be behavior indicative of a seizure so they've attached an EEG to his head to record his brain activity until tomorrow morning. I pray that it was just normal neuro development movements... 

Here's a picture of his little head wrap, he's so cute!

Micah continues to baffle the doctors. This morning we had a family meeting with the ICU attending and fellow, the neurologist, and the cardiologist.

Micah had an MRI on Friday, June 27. The neurologist said his MRI results didn't indicate any major problems and that the abnormalities she found are common for cardiac babies:

1. There are tiny dots present on the left side of his brain. They could either be blood clots or the result of low blood pressure not sending enough blood/oxygen to those parts of the brain. The dots are so tiny (and common) that they don't present any serious concerns. The doctor did mention that Micah could have slower use of the right side of his body... But maybe not.
2. His brain is measuring slightly smaller than an average size brain at his age. Also common and not a concern.
3. The pons, a portion of his brain stem that serves as the "message station", is measuring slightly smaller, but it could be that it's proportionally small to the overall smallness of his brain. They'll monitor it.

His breathing vent has been adjusted to provide even more support... Finally the ICU doctors admitted today that Micah has been on the vent for about a week or two longer than they like to see. So they've been planning next steps to figure out why.

First, they're going to put a scope down his windpipe to see if it has any weak spots. If results are normal then they're going to wait a few weeks and perform another cath to identify and measure the pathways of the blood flow in his heart. They have to wait a few weeks because his heart is still too fresh from surgery to insert a stent if needed. If his cath results are normal then they might consider steroids.

The good news is that he doesn't have any more tubes or wires protruding from his chest, his stitches from surgery have been removed, and he isn't on any medication to help the function of his heart :) 

We just have to figure out the breathing and oxygen saturation issues.