Sunday, October 31, 2004, 6 pm MST

This morning Julian’s creatinine came back down another 0.3 to 3.1: just 0.1 away from (most likely) not needing dialysis! Good news indeed. All other indicators are pretty positive as well, as far as the numbers are concerned, and Julian continues to become increasingly aware of his surroundings. He’s a beautiful little boy!

The plan right now is to continue to wean him from his fentanyl (pain medication/narcotic), and begin to wean him from his ventilator. As such, his induced breathing rate has been reduced to 18 breaths per minute. We’ll see how he does. I anticipate that he’s going to go through a few days of discomfort, as the pain med will be gone before the ventilator will, and he’ll still be able to feel the breathing tube down his wind pipe. They’re also going to insert a second, trans-piloric (sp?) feeding tube that will push past the stomach into the upper intestine and put his feeds on a continuous drip in order to help him stop spitting up/vomiting his feeds. The concern here is that he might aspirate some of the milk/vomit, which increases the possibility of infection in his lungs. We can’t afford to risk that, as his lungs are already compromised, so the doctors think this will help. [8 pm update: they inserted the new tube, and when they took an x-ray to ensure it was in the right place, they discovered that his right lung had suffered a partial collapse. He's not symptomatic, so they're not terribly worried about it, but they've put him on his left side, elevating the right side, hoping that his right lung will re-inflate fully. We'll know more in the morning.]

In general, however, Julian is continuing to improve significantly each day. In fact, after the lead Nurse Practitioner had checked in with us this morning, she encouraged us to “get out” and do some together stuff outside the unit. She told us that Julian is no longer “horribly critical”, and in effect she told us “Look, he’s going to be OK. We’re down to the fine tuning, and he’ll be OK here with us without you watching every little thing that happens 12+ hours every day.” She also let us know that when Julian was first admitted on the 13th, they didn’t really expect him to survive. This is the first time someone from the unit has actually come out and told us this to our face. He really is our little miracle baby!

As such, Stacy and I went out and bought her a rocking chair for the nursery, something we had planned to do an eternity ago, and simply hadn’t got around to before Julian was born. Right now I'm at Starbucks while the van is outfitted with new tires, and Stacy and her folks are on their way to meet me here so we can go to dinner together. And Stacy and I have started talking about when we might be able to check out of the Ronald MacDonald House so I can refocus on my role as the family provider, while Stacy commutes from Lyons to visit Julian in the NICU every day (you know, for less than 12 hours at a time).

Not long after Julian was born, I remember thinking about the immediate state of our life, and how things seemed to be spinning out of control. Our control, anyway. When Julian was first admitted, it seemed like the odds of his survival were about a billion to one and rising. Then I remembered something someone shared with me about God being the God of the bottom of the ninth, that throughout the Bible it seemed as if God purposely stacked the odds against Himself, in order to show beyond a doubt that He is the almighty maker of heaven and earth, and that He loves us personally. All this seemed pretty far away at that moment, but as I think about it now, it’s getting pretty real. This is the most tangible expression of God’s grace that I’ve ever witnessed first hand.

Xane. God’s grace. And we picked it because we thought it sounded cool.

Who knew?

David

Monday, November 1, 2004, 6 pm MST

HOOOOOORAY!!! Julian’s Creatinine dropped to 2.9 this morning! The Kidney Dr., Dr. Ford, said that if Julian was between 2.5-3.0 or thereabouts he wouldn’t need dialysis in the short term! (The long-term possibility would still exist if his kidney ever stopped functioning correctly, which due to the circumstances the Dr. said it would be likely it wouldn’t last past his 12th birthday. But, the Lord has been doing amazing things, and I am convinced he is fully capable of fully healing Julian’s kidney!) Time will tell, please pray that Julian’s creatinine level would continue to drop to normal levels, which is 0.3. He is still having trouble keeping his sodium level up as well, which is also tied to kidney function. Today, however, they took his PICC line, his last “long-term” IV line, out, which was on his right arm, and they installed a temporary one in his head just to finish weaning him off his Fentanyl which will be done tomorrow. Yay!

So, after tomorrow he will have only two tubes left in him, and possibly one! His ventilator (which he’ll have for a couple more weeks) tube going down his throat, and his urine catheter which is in his vasecostomy to keep it open, which they don’t think they need anymore because the hole will stay open on it’s own now. They will probably remove it tomorrow.

Meanwhile, Julian’s right lung is still somewhat collapsed. Please continue to pray that God will re-inflate it and keep his left lung healthy in the process. They are slowly weaning him off the ventilator, they changed his setting yesterday to 18 breaths per minute and 42% oxygen. In order to try letting him breathe on his own without the ventilator, he needs to be off the Nitric Oxide entirely (it is down to 4.7% from 20%), he needs to be down to 10-12 breaths per minute, and down to about 22% oxygen.

So that is the update in a nutshell! We are praising God for his progress, and that although he is still in critical condition at this point due to his lung condition, we are confident that we will have our baby boy Julian home with us by Christmas.

Take care,
Stacy

Tuesday, November 2, 2004, 10 pm MST

As of this morning, Julian’s creatinine level has dropped to 2.7! This prompted the NP in charge to change his order for labs to once every three days, so he won’t be having his level checked again until Thursday or Friday. Obviously we're praying that his level continues to trend downwards. Please pray with us that this takes place.

Also, Julian’s sodium level appears to be stabilizing, which is good, as it means that the kidney is concentrating, or re-absorbing more sodium, than it had been previously. As such, his sodium supplementation has been cut in half.

Julian also had another ECG this afternoon, and after reviewing it, the doctors decided to stop Julian’s NO (Nitric Oxide) altogether. He’s still on the ventilator, 16 breaths per minute at approx. 40% oxygen.

So, progress is being made. However, the most significant thing that happened for our little family today was that Stacy and I each got to hold our son. It was amazing! I thought Julian would be very cranky in response to the new position, or just because he was being moved around, something he’s not really used to yet. Sure enough, when the nurses started removing him from his bed, he got pretty upset, but as soon as he was in my arms, he fell asleep almost immediately. I held him for almost an hour, and Stacy got to hold him for some time after that. It was incredible! Just to think that you’re holding a little life in your arms is pretty awesome – all that potential in 7-1/2 pounds, wrapped up in a cotton blanket.

Tomorrow we go to Blue Cross, Julian’s insurance provider, to start straightening things out with them. A good friend told us that Julian’s insurance claims, bills and benefits will be wrong for the first 3 months – at least. Well, we started wading through the bills and EOB statements this afternoon, and at first glance, it appears that our friend was correct. Please begin to pray that everything from this end goes smoothly.

Thanks for all your prayers and support so far – it’s made all the difference.

David

Wednesday, November 3, 2004, 10 pm MST

Several small things happened today, not a lot of big stuff, and we’re both really tired, so I’m going to have to keep this short & sweet.

Last night Julian’s temperature was a little high, although not high enough to be classified as a fever. This morning he was put on anti-biotics and had his lung secretions and some blood sent to the lab for culturing to see if it might show an infection. He was also given a peripheral IV line so they could put him back on Fentanyl; the NP suspects that part of his temp increase may have to do with some measure of Fentanyl withdrawl, so they reintroduced a small amount so they can re-wean him at a slower pace.

He’s a strong and feisty little boy though: his nurse told us that it took three of them this morning to hold him still enough to put the peripheral line in.

This morning, Stacy and I were so tired we took some time off for a mid-day nap. It helped, but we’re still pretty wiped. This is starting to feel like an endurance race.

At the end of the day, though, came my highlight: I held Julian again, this time for about 2-1/2 hours. Again, he got fussy while he was being handled, but went promptly to sleep as soon as he was situated in my arms. What a sweety!

David

Thursday, November 4, 2004, 6 pm MST

More progress to report today. First, I forgot to mention yesterday that Julian had another ECG, this time to verify that he no longer needed Nitric Oxide, and they found that Julian no longer has pulmonary hyper tension. Plus, Julian had the bladder catheter taken out of his vasecostomy today, so at present all he has is his ventilator tube, an IV, and his monitor probes. Very good news.

Today, Julian’s ventilator is down below 40% oxygen and set at 14 breaths per minute. He’s presently doing so well on the ventilator that the doctors have decided to remove his breathing tube (and thus the ventilator) tomorrow morning. There are pros and cons to leaving the tube in, and at this point they feel that the cons outweigh pros; nevertheless, there are some on the staff who are nervous about the timing. Ultimately, there is no exact way to tell when to pull the tube, and there’s no way to tell how he’ll do after it’s out. So, please pray tomorrow morning; the procedure will be taking place sometime between 9 am and 12 noon MST.

Today, Julian went back and forth between asleep and just plain mad, with short periods of calm interspersed throughout. I think he’s tired of having a tube down his throat, and we suspect that part of the reason the doctors would like it out is that they’re afraid he’s going to pull it out on his own. He’s a remarkably strong, willful little boy.

When this is all over, we’d love for the medical staff to be shaking their collective head, wondering how it came to pass that this little bundle of energy made it so far. They’ve already told us more than once that they really didn’t expect him to survive at all.

On a less exciting note, Stacy and I went down to Blue Cross’s main office in Denver to start the process of making sure that Julian’s medical service providers and his insurance provider are all pointed in the same direction. I can’t say the meeting was fun, but it was informative and reassuring. However, tracking all of Julian’s claims is going to be a part time job.

At the end of the day, Stacy and I are happy with how Julian is doing. One of the nurses commented that Julian has done something every day that exceeded her expectations. We don’t know yet when we’ll be able to take him home, but we’re cautiously optimistic that we might have him home by Thanksgiving. Dr. Barrie indicated to us today that this might actually be possible given his current status. We hope.

David

Friday, November 5, 2004, 11 pm MST

Sorry this is coming out so late. I know some of you are checking on the hour for the latest update, but tonight we had the chance to spend some refreshing time with some dear friends, so I’m a little delayed.

This morning at around 10:30 Julian’s breathing tube was removed and he was put on CPAP. CPAP (pronounced see-pap - I have no idea how it’s spelled or what it actually stands for) is an intermediary breathing support which delivers air w/ oxygen at positive pressure into the nose. That way, the little air sacks that make up the lungs remain partially inflated even when he exhales. It allows Julian to breathe on his own while giving him the support he needs to keep breathing on his own.

This all sounds great, but it’s really quite uncomfortable. When they first put Julian on CPAP, they used a little rubber nozzle that had 2 prongs shoved up his nose. Julian did not agree with this option, so they switched to the little nose mask you see in the picture above. Even so, they had to sedate him in order to calm him down enough to properly oxygenate his blood. He was livid, and it was so cute because he finally had that tube out of his throat and could really scream. However, because he’s had a tube down his throat his entire life, he was a little hoarse; when he opened his mouth to cry, it was only a whisper, even though he was moving a considerable amount of air.

The real reason this made me smile was because on October 13th he tried to cry for the very first time, and all he could do was grunt. He’s still working really hard to breathe, but not nearly as hard as he was back then. The nurses today weren’t sure he’d be able to make it on CPAP, but as of last check in at 9 pm, he was still doing well. There was a chance it might not work and he’d have to be put back on the ventilator, but so far that hasn’t been necessary. We’re very happy about this little bit of progress.

Julian’s creatinine level was measured this morning and came in at 2.8 – slightly up from 3 days ago. We weren’t happy about this, but we’re still hopeful that it will start to go down again; other indicators still suggest that Julian’s good kidney is still slowly gaining momentum. Dr. Ford, Julian’s kidney doctor, also stopped by this morning, and I asked him, now that we were below 3.0, what we should expect. He answered, “Well, now that we’re below 3, I’d really like to see him below 2.” He told me that if Julian’s creatinine was down to 1.9, that would put dialysis “way out.” So, that’s what we’re praying for now.

Today was the first time Julian’s doctors looked at his feet, which appear to be slightly deformed. They want to call in a pediatric foot doctor (not really sure what the official term is) to have a look at them. They’ll probably put them in splints, but I don’t know when or for how long. More details as things develop.

It’s late… good night.

David

Saturday, November 6, 2004, 8 pm MST

Greetings! Today Julian transitioned from the CPAP unit (see top left picture) to a Nasal Canula (see top right picture) with high volume output (to help keep his lung pressure up=inflated). He is making such forward progress that they are thinking of transferring him from the Newborn ICU to the Infant Care Center, which is the equivalent of moving him from the “emergency room” to an “in-patient hospital recovery room”. He also got his IV out again, and no longer has his vasecostomy tube (just a hole now) and so this baby is not hooked to ANYTHING except for his oxygen tube in his nose and a couple of monitor probes!

Dave and I are giving all praise to God for bringing him through all this so far. His kidney is still not fully functioning, but we continue to pray for that, and that he won’t need dialysis. The Kidney Doctor, Dr. Ford, would like to see his creatinine below 2.0, and it is presently at 2.8. Please continue to pray with us for this! We told the nurses that we had tons of people praying he’d get below 3.0, and he did, so now we’ve amended that to 2.0 because that’s what the Doc would like to see. Now, if his creatinine levels stay between 2 and 3, but he is growing and thriving, then dialysis would not be necessary in the short term. However, the Doc said if he is not thriving we’ll need to do dialysis to lower his creatinine level so he CAN grow and thrive. God is bigger than all of this, and He designed kidney function, so we trust Him that He has everything in His control.

Yesterday, Dr. Barrie told us that he is so pleased at Julian’s progress, and that when Julian first came in he didn’t think Julian would make it, because infants having as many chest tubes as Julian did (other lung and kidney problems notwithstanding) have a very high mortality rate. We were able to share with him that we had probably around a thousand people praying for our little guy. Thank you again for holding us all up in prayer. This is truly our little miracle boy. Once again, if you have been praying for Julian and would like to be included on Dave and my address book, please send Julian an e-mail at julian@davids.org. You may write something to him, or not… it’s up to you, if you’d just be so kind as to give us your current address that would be wonderful. You have no idea what it means to Dave and me that you are involved as you are. We’d like to show Julian someday who was involved in such a critical way in his first months of life. Thank you!

I was able to hold him for about an hour and a half today. He was awake for about half of it, then he couldn’t fight off the sleep any longer. He is in a normal stainless steel crib now, and they’ve dressed him up in a little robe…the nurses are always talking to him and loving on him when we’re not at the hospital. We are very blessed.

In Him,
Stacy