Sunday, October 24, 2004, 2 pm MST

Today Julian seems very content and very asleep: not a lot of movement, lots of steady breathing. Stacy is stroking his head and singing him songs. We are so thankful that Julian is no longer the center of attention here in the NICU.

At the other end of the NICU, a little one had to be put on ECMO (Extra Corporeal Membranous Oxygenation), a very serious procedure involving a machine that basically replaces the heart and lungs in the event that the body’s own heart and lungs are unable to pump and oxygenate the blood properly (used routinely for open heart surgeries, but still pretty major). In the words of our nurse, “not good – the be all and end all of life support.” When we were on our way to the hospital on the 13th, the medical team looking after Julian was seriously considering putting Julian on ECMO because it was unclear just how his little lungs would perform. They opted instead to put him on the oscillating ventilator, and he responded well. Now he’s on the conventional respirator, and he’s doing great!

Every day, he seems to have one less tube or probe attached to him, he’s resting well, he’s moving around (as much as he can anyway), and he’s got great color! His creatinine level went up to 5.3 yesterday, but the doctors think it was because he had been so fluid restricted. They changed his fluid and nutrition diet, and today his creatinine level is at 4.7. We’re hoping it continues to fall! Also, a week ago, his urine output was below 1 cc/kg/hour – very serious: the doctors wanted to see a bare minimum of 2 cc/kg/hr. Two days ago, he passed the 5 cc mark, and yesterday he was above 7 cc/kg/hr. Now the doctors would like to see him slow down, so they’ve pretty much stopped giving him diuretics altogether.

Now, a few people have asked when Julian will be off of ‘critical’ status. As long as he’s on a ventilator, he’ll be considered critical. After that, it will depend in large part on how his kidneys work, how he eats, outputs waste (i.e. pees and poops), how he processes fluids, etc. As far as when we might be able to take him home… at this point, no one is saying anything. It might be weeks, it might be months.

We’re so grateful at this point, because at every stage Julian seems to be exceeding the doctors’ expectations. We know this is a direct result of the prayers being petitioned on his behalf, and we’re confident that his progress will continue. Psalm 27:13,14 says the following:

I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong & take heart & wait for the Lord.

We are still confident. The waiting is the hard part.

While we’re waiting… Many of you have asked how you might be able to help us while we’re here at the hospital and living at the RMac house across the street. Or biggest need at this point is meals. We simply don’t have time to cook our own meals while we’re here. I’m sure the nurses would love for us to get a life, but with few exceptions, if we’re awake, we’re here with Julian. If you would like to help us with meals, please consider buying a gift certificate for us and mail it to us at the RMac house. Click here for more information.

David

Tuesday, October 26, 2004, 4 pm MST

Stacy and I were up in Lyons and Estes Park yesterday for a follow up appointment at the Estes Park Medical Center. It was the first time we'd left Denver since the 13th, and although it was good to see home again, it was emotionally taxing to be gone for so long during the day. By the time we returned to Julian's bedside around 8 pm, we were drained.

Julian, however, seemed to weather our absence well: he was just as pink on our return as he was when we left him in the morning. Today, Stacy is by his bedside as I type. As you can see, he's opening his eyes more now than ever. In fact, yesterday when we arrived at the NICU, he'd had his eyes open for several hours and had "overstimulated" himself to the point where he needed mild sedation to allow him to go back to sleep. Today, he seems a little less overwhelmed by the vast world on the other side of his eyelids.

Julian's doctors today gave us very positive reassurance that Julian's lungs should recover and heal. Right now Julian has a minor fluid buildup in his chest, adjacent to his right lung (in the same place they were evacuating air from last week). Although it's not serious right now, it could build over time to become a real problem. The doctors are taking steps to ensure that this doesn't take place.

The main issue for Julian is still the working capacity of his kidney(s). Today his creatinine level measured 4.5, down from 4.9 yesterday. This is good, especially since the doctors seem to think he's a little dehydrated: normally, his creatinine level would go up if his overall fluid level is down. We're hoping that the creatinine level continues to trend downwards. In the mean time, the doctors are having a more difficult time chasing his electrolyte levels. Yesterday, his NA (sodium) level dropped to a point that prompted the doctors to begin supplementing his body's sodium level aggressively. Only about 2 hours ago have we had some indication that his sodium has stopped dropping. Once the doctors have a handle on his sodium level, they speculate that it can be maintained with oral supplements.

Right now, Julian's kidney(s) are passing a lot of urine, but they haven't yet started to appropriately regulate what gets passed into the urine and what gets reabsorbed into the bloodstream. It would seem that he needs to retain more sodium and pass more creatinine, and in general do a better job keeping things in balance. The Urology and Nephrology (kidney) doctors have told us that they've seen cases where newborn kidneys don't fully engage until 6 weeks after birth.

We remain hopefully optimistic.

David

P.S. While at the doctor's office yesterday, we saw a poster with the following saying:

Everything works out in the end.
If it hasn't worked out yet,
it's not the end.

Wednesday, October 27, 2004, 4 pm MST

Today is Julian’s due date! However, as he was induced 2 weeks early, it’s actually his two week old birthday! Praise God, Julian is 2 weeks old today. As I write this, I am sitting by his bedside making sure he doesn’t spit up/throw up any of his last feeding. Yes, the nurses do keep an eye on him, but their eyes on him ever minute or two and my eyes on him every second could make the difference between him being suctioned immediately from the spit up or it sitting in his mouth for a few minutes until the nurses notice. Yes, I’m a mom. =)

The big good news today is that Julian’s Kidney doctor was smiling! This is the first time we have seen him at Julian’s bedside without a very serious look on his face, and we are overjoyed. He said that Julian is still not forcing their hand to do dialysis, which is a miracle in itself. Julian’s creatinine level was down by .1 again today, which brings it to 4.4 and it looks like the trend is that it has at least plateaued, if not begun to go down. Dr. Ford (his kidney doctor) said that if it can drop below 3.0 (preferably below 2.5, but we’ll take what we can get!) it is foreseeable that Julian would not need dialysis as an infant at all! That is, so long as the kidney continues to function at a level sufficient enough to KEEP the creatinine level low. Often times, the Doctor says, it is only a matter of time before it finally poops out if it starts out impaired, but we are trusting that the Lord will continue to INCREASE his kidney function, and that the doctors would see Julian as a miracle baby. This is our continued prayer.

Meanwhile, Dave and I are more exhausted this week than last week. I didn’t think it possible, but we are. We could also use your prayers to keep us sustained.

But Julian is as adorable as can be, he is busy sleeping right now…tough work with all these bells and whistles going off, and all the excitement of the Newborn ICU. His nurse just put another sodium intravenous drip on his IV tower, to keep trying to bring his sodium levels up. They are getting better, but are still lower than normal.

It’s interesting I seem to be fine with trusting the Lord for the big stuff, like saving Julian’s life, healing his lungs, and firing up a stalled kidney... but it’s the little stuff regarding his daily maintenance of electrolytes, his gassy feedings, the little bit of fluid that they picked up in his lungs on the last X-ray, etc, that I have a tough time giving over. It’s like I’ve given Julian over to the Lord for healing, but am looking over His shoulder standing by to give direction… isn’t that a silly notion? You’d think it would be as easy as saying “Do I trust Him or not?” When I let the fear creep in, I know instinctively that I’m NOT trusting Him fully. I can be vigilant but steadfast, not vigilant and fearful. That is my prayer for myself.

Okay! Now, for a heartfelt thank you to whomever paid for our Ronald McDonald House visit, THANK YOU. It was unexpected and very welcomed, and did much to warm Dave and my hearts. It was interesting, some family friends who live in Parker dropped by a gift for us at the “House”, and when they did they also tried to pay for part of our stay at the House, and the front desk told them the first two weeks had already been taken care of. We have not yet inquired as to whether or not we can find out who actually paid, so we can’t thank you yet individually. If you have preferred to remain anonymous however, and we CAN’T thank you individually, please consider this our thank you.

One last thing: If you've been praying for Julian, please write him an email: it could be your prayer for him, or just to let him know who you are and that you've been thinking of him. We'll save them in a book and share them with Julian when he's old enough to understand the gravity of what's going on right now. Conveniently, it will also allow us to update our Christmas card address book, and when this is all done, we'll send you a very special holiday greeting! Please include your name and mailing address with you note.

Email Julian at: julian@davids.org

Thanks!

Stacy

Thursday, October 28, 2004, 2 pm MST

Yesterday the Doctors were following little Julian’s lungs, the x-ray showed that the lungs are still battling some fluid. However, no new holes, no collapsing, nothing of that sort. Please pray with us that he is guarded from pneumonia, and that his body will be able to get the fluid out. He is still working pretty hard to breathe, so we are hoping the Doctor will boost his ventilator support a little bit today to see if that can allow him to relax somewhat. He is in awesome hands, and we believe the Lord is guiding the Doctors in making their determinations and courses of treatment.

His sodium levels are within normal range, which is a big praise!

Regarding his kidney, his creatinine level DROPPED (Praise God!) by .3 this morning, and that is even after a dose of diuretic (which conceivably may have shown an increase in creatinine even if it had stayed the same because his blood should have been slightly more concentrated). The Kidney Doctor yesterday said that if his creatinine levels can drop below 3.0 he will not need dialysis in the short run. His creatinine level is currently at 4.1, and his high at one point was 5.3.

We wanted to thank you for all or your e-mails and practical support of Dave and I, it means so much to us and we do feel supported. Thanks.

Stacy

We seem to be more tired this week than last week for some reason, and the last few days have been particularly stressful. Less adrenaline maybe. I think we might be getting a little overwhelmed with the lesser issues: in my mind I want Julian’s recovery to be a continuous upward progression, and I get bogged down emotionally whenever there’s a speed bump along the way. I guess I figure by now after two weeks that he should be out of the woods, when in fact he is still in ICU for good reason. It’s still a roller coaster.

Anyway, we’re doing our best to stay rested, nourished and generally healthy, so we can support Julian with our presence. He is so sweet. And please write to Julian. It will be a powerful story later in his life, just as your prayers, notes and support have been a comfort to us now.

David

Friday, October 29, 2004, 6 pm MST

Today seems to have been the best day of Julian’s little life so far. Except for a few minutes while being changed or cleaned, he’s been asleep. The night before last, while doctors were chasing a fluid accumulation on his right lung, a blood gas report came back indicating that Julian’s breathing rate should be bumped back up to 20 breaths per minute, up from 16. Julian has been a lot more relaxed ever since.

Last Saturday when Julian was first put on the conventional ventilator, he was initially set at 30 breaths per minute; that means that he can still breathe on his own, and the ventilator will assist him if he chooses to do so, but he’d get a minimum of 30 mechanically induced breaths no matter what. Not long after (a day or so), he was weaned down to 24, then down to 20. Eventually, this process helps train the baby how to breathe on his own, but it is possible to go too fast. Early this week, Julian was weaned down to 16 breaths per minute, and in retrospect it appears that this just wasn’t enough support for him; he seemed agitated most of the time, and started spitting up his food a lot more than he had previously. Of course, that was also when he was given oral sodium supplementation (try eating half a cup of salt before your next meal), he reached full feeds (50-60 cc’s every 3 hours), and they tried a formula fortifier in his milk. Anyway, since they pulled the oral supplements and fortifier, he’s spitting up less, and since they bumped his breathing rate back up to 20, he’s sleeping a lot more and in general seems more relaxed.

But all that is pretty minor compared to what he’s been through already. When we arrived this morning, we found out that Julian’s creatinine level was down 0.5 to 3.6! This was better than we hoped for, and we hope that the trend continues! Before we arrived at the hospital this morning, Dr. Ford (kidney doctor) checked with the nursing staff, and was very happy with Julian’s progress. When Dr. Hall came to do rounds with the medical staff, he remarked that Julian has continuously astounded him, taking into consideration his condition on arrival, and that he arrived only 16 days ago. He went on to say that the recent elevation in Julian’s blood pressure may be indicative that Julian’s kidney may be “waking up.” We’re thrilled with these reports, and still hope and pray that Julian will be able to come home with normal kidney function.

Right now, our biggest issues seem to be getting him to not throw up when he feeds, and the fact that neither of us has really held him yet. However, when the nurse changed his bedding earlier today, she did allow me to assist, and I got to hold him in my hands (a couple inches off the bed) as she did the dirty work. As he has fewer and fewer lines, catheters, tubes and probes in/on him, we’re hopeful that we’ll get to hold him soon! We're getting more comments now from the nursing staff on how beautiful our son is. We must admit, we agree.

David

Saturday, October 30, 2004, 6 pm MST

Julian continues to heal as he sleeps most of the time. He no longer has an arterial line in his left arm, and so has restored mobility thereof. It's fun to watch him do baby stuff with his little hands. For the most part, he sleeps a lot, and when he's awake, he's pretty calm.

This morning his creatinine level had dropped again, down 0.2 to 3.4. We're getting excited, because Dr. Ford indicated that if his levels got down to the 2.5 - 3.0 range (lower preferably: normal is still 0.3), Julian may very well not need dialysis. Please continue to pray to that end.

Today Stacy and I went to pick up a gift certificate at one of our favorite eateries, and found three (!) gift certificates waiting there for us! Thank you so much for your support in this way - it means a lot to us at this time, and we do appreciate it. A note to those of you who are having certificates held for us at various restaurants - please let us know that we have certificates waiting for us. You can do so by emailing us at djp@davids.org. Thanks again!

Stacy and I are still catching up on our sleep, so we may retire a little early tonight. Julian is doing so well, we feel better about leaving him in the nurses good care while we see to our own well being and upkeep.

That's all for now - please check back soon.

David