Withdrawal

Hey everyone,

Just a quick update tonight. Judah has been spitting up quite a bit yesterday and today. The doctors believe that he’s going through morphine withdrawal. He has been on Methadone, which is being used to slowly wean Judah off morphine. They have made some adjustments to his dosage and they are hoping that gets him back on track.

Please be praying for continued growth and stregnth and also that his body can get through this withdrawal phase and back to resting quickly.

Much love,
Nick & Liz

Home Sweet Hospital

Hey friends,

Yesterday we made the decision to not go through with the G-Tube surgery today. We, along with the doctors, felt that he just needs more time to grow and get stronger before undergoing another surgery. Judah needs the pediatric general surgeon to perform the G-Tube surgery, and the cardiac anesthesiologist to administer the general anesthesia, and their schedules only line up on Tuesdays. Unfortunately, because we decided not to do it today, we’ll have to wait at least three more weeks before the surgery can be done because the next two Tuesdays are Christmas Day and New Years Day, and one or the other will be out of town. The G-Tube requires about a week recovery time. Assuming everything else is good, the soonest we’ll be able to go home is the middle of January. We’ve accepted this and even embraced it. We’re going to celebrate Christmas as normal as possible. This year, our living room just happens to be Judah’s hospital room. : )  We even have a tree! Although we’d love for him to be well enough to come home, we’re happy to stay as long as we need to get him healthy.

Judah has been doing pretty good since being re-intubated last Thursday. He had a fever over the weekend but that has turned out to be nothing serious. Today he was spitting up a lot and the current thinking is that they weaned him off morphine a little too quickly. Hopefully, that is the cause and they can adjust what they’re giving him and it’s not anything more than that. Aside from that, he’s gaining weight slowly and that’s a really good thing!

Prayer requests:
– that Judah would continue to gain weight and get stronger (particularly his lungs)
– that there would be no other complications along the way
– that God would bless the doctors and nurses and give them wisdom in making decisions
– that God would completely heal Judah of all his infirmities

Thank you all so much for caring so much about us and our baby Judah. Your prayers and words mean so much to us!

God bless,
Nick & Liz

Sunday Evening Update – 12/16

Hey everyone,

Judah had a pretty good day. He didn’t have a fever at all today. However, they said that sometimes babies with his condition will spike a fever and then it drops a little below normal when they are fighting an infection. We haven’t heard back about the tests they ran on him to see if he has an infection or not. Sometimes it takes up to 48 hours to hear back. So far, it looks good on the outside, we hope it’s as good on the inside.

We will talk tomorrow with the doctors and decide if it’s best for Judah to get the G-Tube surgery on Tuesday or not.

Please continue to believe with us for complete healing in Judah’s body. For his heart (which still needs a minimum of two surgeries), for his lungs, that they would grow strong, that he would gain weight, that his incision sites would heal well and that there would be no infection and no other complications. We believe our God is able to do it. Thank you for standing with us!

Much love,
Nick & Liz

Saturday Evening Update – 12/15

Hey friends,

Judah had a pretty good day today. He was able to get lots of rest. This evening he spiked a fever. Although it has dropped, they are running tests to make sure he doesn’t have an infection. There was also some concern about some redness around is side incision site. This could be a sign of infection or nothing at all. We should know by tomorrow evening.

Please pray for rest, growth and no infection!

Much love,
Nick & Liz

Progress

Hey friends,

We had a pretty good day. They decided to remove Judah’s chest tube this morning. The amount of drainage has been very low recently and also mostly clear. I’m sure he is pretty happy not having it in. Also, they changed the Vac Dress over his chest incision and it looked so good that they decided not to put it back on, but instead to just use gauze! If you read yesterday’s post, you’ll remember I said that one of the biggest indicators that he wasn’t getting enough nutrition, was that he wasn’t healing well. To see these things happen so quickly is amazing! He has been resting well and comfortably almost the whole day. Even though he has the breathing tube in, it’s good to see him not in pain or upset all the time.

Please continue to pray that Judah would continue to grow and get stronger as the days go by. Pray that he doesn’t have any more complications and that we, and the doctors, would have wisdom as to what to do next. Also, if you’re praying for us, please pray that the God that has carried Liz and I during this time would also carry the families that lost their most prized treasures today in Newtown, CT. Pray that God would protect our children and our nation from such incredible evil.

We love you all,
Nick & Liz

Still In It For The Long Haul

Hey everyone,

Together with the doctors today, we had to make the tough decision to re-intubate Judah.  As I mentioned in my last post, we’ve been dealing with a pretty rough cycle. The root of many of his problems is his body’s inability to fight, largely due to not getting the nutrition he needs. The main catalyst for this theory is that the incision from his heart surgery isn’t healing as fast as they’d like it to. With him having the breathing tube back in, it will allow the following to happen:
1) He will not burn the calories and nutrition he needs to grow by struggling to breathe.
2) It will help his left lung fully expand, (which he isn’t yet strong enough to do on his own) which will force any fluid out that has accumulated.
3) They will be able to suction out the (very thick) mucus out of his throat much easier.
4) He has been throwing up pretty regularly. Mainly because he has mucus in his throat, so he coughs and gets himself worked up to the point where he gags and gets rid of all the nutrients they just gave him.
With him not having to deal with many of those things, he should be able to rest easier, get stronger and grow bigger.

At first, the suggestion of putting the breathing tube back in was hard to consider. But as Liz and I talked about it, we realized that he has been unhappy and uncomfortable for a large majority of the past few days. And, although it seems like a step back, it might be the best way to get him to take a few steps forward. It’s a decision that had to be made more intellectually and less emotionally, which can sometimes be hard. So, this afternoon, they re-intubated Judah. It was pretty uneventful – which is good around here. Since then he’s looked more comfortable than he has in a while. Now, we just need him to stay comfortable and grow.

There is also the issue of getting the G-Tube put in. This is a small and short surgery but surgery nonetheless. It would require general anesthesia which does carry some risk. Right now, he is still on the schedule to have it done this coming Tuesday, but at this point, the plan is to see how he does over the next few days and then make the final decision. The cardiac nurse practitioner (who’s been overseeing him since we got to Strong) would like him to have a week or two of “nothing happening” – just being a comfortable baby.  If we decide to wait, we would have to wait until after New Years to have the G-Tube put in because the surgeon will be away for a couple weeks. Although that would be a long time to wait, it may be the best plan for Judah.

Right now, our main prayer request is that Judah stays comfortable and grows. Once Monday rolls around we’ll have to make a decision about whether or not to go forward with the G-Tube or if we should wait.

Thank you all again for your prayers and messages. It means the world to us that you care enough to carry our Judah in prayer. Let’s believe for miracles.

Much love,
Nick & Liz

Happy One Month!

Hey Friends,

Happy one month, Judah! It’s been a full month since he came into our lives and changed us forever. We’re so grateful for how God has carried him and us through this time. We know this is only the beginning and that God has great plans for Judah’s life.

Here’s an update:
He’s doing alright. He is still getting oxygen through the nasal cannula, they don’t feel he’s quite ready to get rid of that yet. They also put him back on the continuous feeds instead of  feeding him every 3 hours. This also means we’re taking a break on trying the bottle. It just seams like it’s too much for him at this point. He’s been pretty uncomfortable the last few days but today has been better. The drainage from his chest tube is no longer “milky” so that means that the “skim” breast milk he’s getting through the tube is working well, so we’re glad for that. Unless there is a major turnaround in the next few days, it looks like he’s going to have a G-Tube put in next Tuesday. This would most likely be needed in order to go home and the surgeon that does this surgery will be gone after next week until after the holidays. I’ll go over some of the pros and cons if this is definitely going to happen.

We also learned today that we will most likely not be home before Christmas. This is something we were really hoping for, so today has been a little hard for us. It looks like sometime after the new year is when we’ll finally get to take Judah home and show him we don’t actually live in the hospital.  : )

Here are a few prayer needs:
Judah still has tons of mucus in his airways. This is actually keeping him from growing because when he can’t breathe easily, he tries to cough, which is painful. So then he cries and works himself up to where he’s using much of the calories and nutrition he’s taking in. To make it worse, in order to get the mucus out, he needs to grow and gain strength but is having a hard time doing that because he’s burning calories being upset. It’s kind of a vicious cycle. Please pray he will be able to grow and get stronger so that he can cough, breathe easier and get off the oxygen.

Judah would need to start drinking large amounts from a bottle in the next 4-5 days in order to not need a G-Tube. This would be a miracle. He doesn’t really know how to do it yet. With him being on continuous feeds, he’s not ever hungry.

Thank you all so much! You have made this trying time much easier to bear. Your prayers are felt daily. Thank you for taking the time to care for us!

We are believing for miracles!

Much love,
Nick & Liz

No News Is…Good

Hey friends,

It’s been a pretty good few days. Judah is still getting a little extra oxygen through the cannula but the doctors are hoping to take that out tomorrow. He has also begun to drink a little bit from a bottle. This is really great! He still has the feeding tube in (through his nose) and they have shifted from giving him a steady flow of milk through his feeding tube to giving him more of a feeding every three hours. First we try with a bottle and whatever he doesn’t take is given to him through the feeding tube. So the volume he gets per day is the same but he’s getting more in a smaller period of time. One problem we’ve been having is that he still has a lot of mucus and is still having a hard time getting it out. Because of this, he coughs and then gags and then some or all of what he just took in, comes out. We are still praying for him to get rid of this mucus that is making things difficult so for him.

We’re still working out the procedure for separating the fat from the milk. He still has some “cloudy” discharge from his side chest tube indicating that there is still too much fat in the milk he is getting. After finding some research, we’re going to try something different tomorrow. If you are really interested in what we’re doing, send me a message and we’ll send you details.

Another positive is that the drainage that’s coming from his chest (where he had the diaphragm surgery) is down to almost nothing. Thank God for that!

Please keep us in your prayers! We’re believing for Judah to learn how to (and love) taking a bottle, clear the mucus out and have no need for the drainage tube and oxygen. Thank you all for your constant support, it means so much!

Much love,
Nick & Liz

…Judah needs a cannula…

Yep. Not a huge (or unexpected) step back, but Judah does still need the nasal cannula to help him get extra oxygen. He is breathing pretty good on his own but not yet 100%. He also has A TON of mucus in his throat and is having a very hard time getting it up. With almost every breath you can hear it in his throat. He doesn’t yet know how to cough, and even if he did, it would probably hurt too much to do so. Having recently (Tuesday) had surgery on his diaphragm, his left side is still very tender. Also, because he had a breathing tube in for so long (and just having that removed on Wednesday) his throat is very sore. So, not a lot going for him getting the mucus out other than time (and prayers of course).

On a positive note, we began turning the stored breast milk into “skim” milk by letting it separate and taking out the fat. As I mentioned in this post, Judah’s body can’t process fats very well, (which will heal with time) so this is a great way to get him the natural nutrients he needs without giving him the part he can’t handle. They are also adding flax seed oil and walnut oil as well as a powder that adds calories to the milk to give Judah everything he needs. So far, it’s been going well.

Prayer needs:
– Judah needs to get out all the mucus in his airways so he can breathe easier. (And be much happier!) Please pray that would happen.
– Strength for his lungs. He needs to build up strength and be able to breathe 100% on his own.
– General healing for his body. His chest opening is still healing, his side is still tender from the incision on Tuesday, his throat is sore from the breathing tube and his back side is still pretty raw from all the diaper changes.
– His heart. Although we got through the first surgery well, kids with HLHS need another surgery sometime between 4 and 9 months old, and at least one more around the age of five. Even after that it’s possible he’ll need a pacemaker or maybe even a heart transplant. They said he’d never be a football or soccer player, but we believe in a God who’s name is above all these things. We believe that He can heal Judah’s heart and that is our prayer.

Thank you all so much for believing and standing with us!

With all the love possible,
Nick & Liz

Who needs a cannula??

Judah before the cannula was taken out

Hey everyone,

As we had hoped, Judah had a great day! He has continued to breathe well on his own. Once they extubated him, they inserted a nasal cannula into his nose to give him a little extra oxygen. Overnight, they weaned him down and ultimately removed it this morning. So now, Judah is breathing 100% on his own. Most of the time he’s doing pretty good. Sometimes he seems to be working a little hard but he is still learning how to breathe on his own. He also has a lot of congestion in his airways that he’s doing his very best to clear. It would probably be a lot easier if when he coughed he didn’t scare himself so badly. :)

At this point, he’s back on Enfaport. He did seem interested and even drank a little from a bottle today as well. It seems like he wants to drink, but hasn’t quite figured out how to breathe and swallow while he has the NG tube in. We will be talking with the doctors more tomorrow about how we will move forward.

If you’re the praying type, please pray that:
– Judah would continue to breathe well on his own and his lungs would grow strong
– he would learn how to clear the congestion from his airways
– he would learn how to drink from a bottle and ultimately be able to nurse
– that his body would be able to digest the fat so he could take breast milk
– the doctors would have wisdom in deciding how to get him the nutrients he needs

Thank you all again so, so much. Your prayers and thoughts have been such a blessing to us!

Much love,
Nick & Liz