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Hello Enfaport

Hey friends,

We’ve had a pretty good day. They did notice that Judah’s fluid from his chest has turned from almost clear to a milky color indicating that his body is not able to absorb the fat that’s in the milk. This is something we were hoping would not happen, (as talked about in this post) but did, so now they will need to address it. For now, they have changed him over from breast milk to a special formula called Enfaport which comes with much of the fat already in a form that he can handle. We are talking about some different options with the doctors and we will have more information on what this means soon. Other than that, Judah has been stable and and is still very cute.

Tomorrow I’ll be gone for the whole day to shoot a wedding in Buffalo. For those of you that don’t know, wedding photography/videography is something I love and of the ways I make a living. This is the first time either one of us will be gone for more than a few hours so please keep us all in prayer as it will be difficult to be gone from his bed side for so long. Thank you all so much for sticking with us through this!

Much Love,
Nick and Liz

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No News Is Good News

Hey everyone,

Today was a very steady day. No news is good news. We expect this to continue until his next surgery on Tuesday. The doctors are pleased with how he’s been doing since he had to be re-intubated early yesterday morning. Considering that he only had a little more than one lung to breathe with and did so for over 40 hours is actually quite impressive. Apparently, for a teenager or an adult, this isn’t such a big deal, but it is for a newborn. And, if you factor in that only one side of his heart is doing all the pumping, we know he’s a fighter for sure. Yeah, I’m bragging a little. :)

One of the positives right now is that Judah will have about a week to “fatten up”. It’s good that he’ll have some time to gain some healthy weight before the surgery. Also, they are weaning him off some of the medications for his heart and transitioning him from getting his meds through IVs to taking them orally (through his feeding tube). So, it’s encouraging that while we’re waiting for the surgery, he is still making progress in other areas. In addition, they did an echocardiogram of his heart to check its functionally and it’s doing great! We’re incredibly happy about that!

Yesterday was a very hard day so we’re grateful that today was smooth. Thank you all so so much for your messages and comments yesterday. It helps so much more than you know. The love and care that you’ve shown us is something we are continually amazed and humbled by. It will never be forgotten.

Here are a few prayer requests:
– that he would continue to tolerate the milk they are giving him through his feeding tube
– that he would gain some healthy (not water or fluid) weight
– that his heart would continue to grow in strength

And above all these, that our God, who is able, would release healing into every part of Judah’s body.

Thank you all!

Much love,
Nick & Liz

Here’s a great video from today:

Judah’s Hiccups from Nick Dantonio on Vimeo.

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In It For The Long Haul

We knew from the beginning that it would be this way. They said it would be a long road and it would be full of ups and downs, two steps forward and one step back, and they were right. We got a phone call at 6AM this morning letting us know that Judah had to be re-intubated (they had to put the breathing tube back in). Since they removed it on Monday, he has been having a hard time breathing on his own. We hoped it would be something that he could work toward correcting himself, but that just isn’t the case.

In addition, his doctors have determined that his left side phrenic nerve was damaged during his heart surgery. This is the nerve that controls the diaphragm, which helps us breathe. As we inhale, the phrenic nerve tells the diaphragm to contract, which enlarges our chest cavity and creates suction that draws air into our lungs. Because his nerve is damaged, it actually does the opposite and effectively only gives him use of 1½ lungs instead of 2. This is the reason he’s been breathing so hard.

The fix for this is an operation called “Plication of the Diaphragm,” where they will flatten the top part of the diaphragm so his lung can expand the way it needs to. This operation will take place on Tuesday. The reason for the wait is because of the cardiac anesthesiologist’s schedule.

The good news is everything else is working well. Judah’s heart is doing great and he is digesting milk just fine; he is still receiving milk through a feeding tube. Because of the breathing tube, we’ll have to put attempting to nurse on the shelf for the time being.

We knew this would be a hard road from the beginning but we’re in this for the long haul. As I stated in a previous post, HLHS is one of the few diagnoses that the hospital will allow you to take your baby home to expire and not try to stop you because they know how difficult it is to walk through. We in no way regret our decision or are having any thoughts of giving up but are beginning to see why they do allow it.

We choose to rely on God’s grace and are resting in His love. He is a good God. We remain steadfast in our cry for a miracle over Judah’s body. We are so grateful for your prayers and the way your words and actions have carried us over the last few weeks.

Much love,
Nick & Liz

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Small Steps

Hey friends,

As I talked about yesterday, Judah had his breathing tube removed and began breathing on his own. Things got a little bumpy last night around 11PM. They were considering putting the tube back in because he was breathing pretty hard and wasn’t settling down. With this news Liz and I decided to spend some time praying over Judah and believing for God to change the path we were headed down. Soon after they checked his blood gas levels, (which was the deciding factor) and they came back good! Thankfully he began to settle down and had a good night.

Today we made a few attempts at nursing, but Judah didn’t seem too interested. We intend to convince him otherwise. They did put a feeding tube in through his nose and began giving him milk that we’ve frozen and he is digesting that very well.

Our prayer needs are the same as stated in yesterday’s post with the addition of extra grace for Liz and I. With Judah being weaned off a lot of his meds he is much more awake, but also unhappy and crying most of the time. We know babies cry. But it’s especially hard because we don’t know if it’s caused by pain in his body or because he’s only 16 days old. It’s also difficult because we can’t just pick him up; we need a nurse to help move him, and we have to stay in a chair while holding him because of all the wires and tubes connected.

We just learned of a friend who is about 22 weeks pregnant and having surgery tomorrow morning at 10:30AM. Her baby was diagnosed with Spina Bifida and she is having prenatal surgery to try and correct this. Please pray for them tomorrow. For more info, click here: Baby Seggio Blog.

We praise God for what He has done and how He as kept us during this time. We also want to again thank you for all the prayers and support over the last two weeks.

Much love,
Nick & Liz

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The Tube Is Out!

Today was a great day! I went down this morning to catch the doctors “rounds,” (eavesdropping on all the doctors as they brief each other can be a great source of information) and they were happy with Judah’s progress but thought he needed another day before taking his breathing tube out. This was fine with us. Around noon, they said they were thinking about taking the tube out this afternoon because “He’s feisty and I think he wants it out.” So, around 3PM they did just that and he’s been doing very well breathing on his own since then. The doctors are “ecstatic about his progress.” Also, because his tube is out and his chest is closed, Liz and I were able to hold Judah (like a real baby and not on a pillow) for the first time since his first 24 hours. Getting to hold him let us connect with him in a way we haven’t been able to in a long time.

Now that the tube is out we have some new goals. They’ve had him on three different medicines to help his heart adjust to the surgery. They have already begun to wean him off these heart meds. The doctor said that “he probably hasn’t needed those meds for a while now.” The first goal is to get him off of those drugs completely. Once that’s accomplished, he will be able to start “eating”. Since this all began he’s been getting nourishment through IV fluids. This goal is for Judah to breast feed. That can be difficult for a newborn without all of the traumas he has been through so they don’t expect this to be easy. Most likely, they will have to supplement him through a feeding tube that would go into his belly. They will give him a day or two to try breast feeding and then decide about feeding tube. It’s our hope and prayer that he will be able to breast feed and not need a feeding tube. Another concern is that that during the surgery, it’s possible his thoracic duct could have been damaged. (For more details about what that does, click on the link in the last sentence.) If it was damaged, some of the fat that would come into his body through the breast milk could leak out into his chest. This isn’t something that could really hurt him but it would mean he would instead be given formula, which doesn’t have as much fat in it.

To simplify, here are the prayer requests:
– that he would remain breathing on his own with no complications
– that he would be able to breast feed well enough that he doesn’t need a feeding tube
– that his thoracic duct didn’t sustain any damage during surgery

Aside from all that, this is the first time since his first 24 hours that Judah hasn’t had tape all around his mouth, so we’re able to actually see what he looks like! We think he’s pretty cute. Also, because he’s had the breathing tube in, his throat is still a little inflamed so he doesn’t have a voice right now. However, he still can cry pretty good and when his voice comes back we think it’s going to get a lot louder in our little corner of the hospital. We were also told today that the goal is to have us home by Christmas. It most likely won’t be that long, but they don’t want to get our hopes up too high. Our hope is to be home in a few weeks but we know it may be a bit longer. We trust God in this and know He will give us more than what we need until we get home.

We’re so grateful for what God’s done and how He’s kept us during this time. We don’t know what we’d do without Him. He’s our hope, our grace, our safety and our healer. We give Him glory and pray that through Judah’s life, many will come to know Him like we do.

Much love,
Nick & Liz

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A Solid Sunday

Hi friends,

Judah had a very solid day today. He is adjusting to his chest being closed and all of his vitals are where they should be. He had a fever last night, (which is normal for patients who have undergone chest closures) but it dropped steadily overnight and was totally gone today. He opened his eyes for about an hour this afternoon, which was really good to see after his procedure yesterday. We love being able to have eye contact!

The next big thing is getting his breathing tube out. They started weaning him down last night and the hope is to have him breathing on his own by tomorrow afternoon! They warned that every baby does this at their own pace so we shouldn’t get our hopes up too high.

We praise God and give Him glory for bringing Judah through to this point. HLHS is almost always caught during pregnancy, so the fact that they noticed a problem before it became dangerous is a miracle. Let’s pray that Judah will continue to breath more and more on his own and that they’ll be able to remove the tube early this week.

Also, today, three of Liz’s sisters came home from a two week missions trip to Ghana, Africa. They left the day Liz went into labor, so this was their first chance to meet Judah. Because there was very limited internet and phone access, we had a lot of catching up to do. We feel very blessed to have so much family around.

I’ll keep you posted on what happens tomorrow. We love you all and want to thank you so much for believing with us for our little Judah!

Much love,
Nick & Liz

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All Closed Up!

Everything went really well! Aside from “showering” the surgeon during the procedure, (which we just think was a “thank you”) there wasn’t a blip on the radar.

They put a VAC Dress on him (as previously described in this post) – basically, it’s a sponge with a vacuum that removes out any extra fluid or debris. He is sleeping peacefully now. They will watch him especially close for the next 24 hours to make sure he’s tolerating everything well.

Thank you all so much for all your prayers!

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Chest closing procedure happening at 11AM

We just heard from the doctors that they will be closing Judah’s rib cage around 11am today.

Last night wasn’t the greatest night he’s had. His heart was a bit irregular so they had to put him back on a pacemaker to help him with that. This is a temporary line that goes into his chest and is connected to a external machine. This is not a traditional “in chest” pacemaker. Even though they had to do this they are still confident now is the right time to close him.

Someone reminded of something I heard a friend say years ago: It’s safer for me to be on a boat, in the sea, in the middle of a storm if that’s where God has me than to be in “safety” on the shore. Today, we’re on the boat but we’re so grateful we’re not alone.

Please continue to pray for our baby Judah. Here are some specifics:
– that God would be with the doctors during this procedure
– that his heart would become strong enough to not need any machines to regulate it.
– that the procedure will go smoothly and there will be no complications.
– that his body will tolerate his chest being closed in every way.
– that there would be no infection after the procedure. (This is a very real risk that may not be caught until after he is closed.)

Also, I’ve been told that some of you have subscribed to the blog but aren’t getting the email notices. If this is you, check your “spam” folder and make sure your email program isn’t marking them as “spam”.

I’ll update you all when they are done.

Thanks!

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Chest Closure Tomorrow

Hey everyone,

Judah had a pretty good day today. His vitals have been good and he’s continuing to lose the fluids he needs to. Earlier today we heard from the doctors that he is scheduled to have his chest closed tomorrow morning sometime between 10-12. They anticipate that things will go well because his body has reacted so well to everything so far. They also did warn that things don’t always go perfect and there is still plenty of risk involved. Because things didn’t go so well the first time they tried this procedure, they will watch him closely for 18-24 hours after the closure to be sure things are okay. To be honest with you all, I wish we could just skip to Sunday but this is one of those times you can’t go around the storm, you have to go through it. It’s going to be a long 24 hours for us so please keep us in your prayers.

Please pray…
– that he will stay stable through the night and into the morning.
– that he will continue to lose all the fluids that he needs to.
– that the procedure will go smoothly and there will be no complications.
– that his body will tolerate his chest being closed in every way.
– that there would be no infection after the procedure. (This is a very real risk that may not be caught until after he is closed.)

We are so incredibly grateful for the prayers and support you have shown us over the past two weeks. We are believing not only for the things I have listed, but also for complete healing in Judah’s body. Thank you all so much for believing with us!

Again, if you want to receive an email when I post an update, you can subscribe by adding your email address to the subscription list on the right sidebar of the page.

I will let you know when they take him in tomorrow morning and how things went once its done.

Much love,
Nick & Liz

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Friday Afternoon Update

Hi friends,

Judah had another good night! They changed the tape around this mouth that holds his breathing tube in, so that looks much better. They also washed his hair, (it gets pretty greasy from everyone touching his head) so he’s looking extra good today. The doctors have decided to wait until tomorrow to close Judah’s chest. He’s just not quite “thin” enough yet. I’ll give more details tonight.

Yesterday was the first time Liz and I felt free to leave the hospital (to do something other than driving to another hospital) since she went into labor almost 2 weeks ago. Some family came up and we went out to eat for Thanksgiving. It was hard to leave, but we know he’s got the best care in the world. There was the temptation to feel guilty or to feel that you’re being a bad parent by leaving, but we felt like this was a good and healthy thing for us. (Plus we were only going a few miles away.) These past few weeks have been so full of ups and downs, but we know God is in control and we choose to trust Him in everything.

The blog seems to be working well. Again, if you’d like to subscribe to the blog, just enter your email address at the top of the sidebar on the right side of the page. You’ll be able to read the newest blog post right in your email application. Also, if you want to save the blog page, just click and grab the icon to the left of the website address at the top of your browser and drag it to your bookmark bar. If you’re using an iPhone or iPad, you can choose the icon at the bottom of your browser app with the arrow and then choose “Add to Home Screen,” and that will give you a direct link to the blog on your device. I’m pretty sure this will work for Android users as well.