Sunday, October 17, 2004, 11 am MST

We spent our first night at the Ronald MacDonald House last night. It felt great to sleep in a comfortable bed and take a real shower. However, sleep is still fitful for both of us.

When we left Julian last night at around 9:30, he seemed like he was a little agitated, maybe uncomfortable. His oxygen saturation was a little eratic and although his blood pressure was stable, his pulse was a little high. A couple of times he would clench all the muscles in his body so tight he would stop responding to the oscilating ventilator (i.e. he would stop vibrating/oscilating). Just thinking that this agitation might be due to his feeling pain is about enough to send both of us over the edge. At this point Stacy and I were so tired we had to leave; it was no longer helpful for us to be there.

This morning we learned that they had to evacuate approx. 60 cc of air from his chest cavity, by way of needle (they had to stick him twice). Hopefully this is a one time thing, and they won't have to insert yet another chest drain tube (he has 4 chest tubes already). If there is more air, we hope they can evacuate it by needle only.

Urine output seems to be going up and down, but we're hoping for an increase through the course of the day today. Julian's progress is evaluated daily, but at one week he should be assessed for candidacy for dialysis, and if so, what kind. Please continue to pray that Julian's kidney function continues to improve.

As far as Julian's pain is concerned, the doctors are evaluating the level of sedatives/pain relievers/anti-anxiety meds that they're giving him. We're confident that he's in good hands. He's a lot more relaxed today, although he does squeeze Stacy's finger from time to time.

Stacy and I will be here most of the day today. Thanks for all you emails. Sorry we can't respond to them as they come in. Please know that we love you and are thankful for your presence in our lives - even those of you we've never met. If you're reading this, please feel free to forward the link to this page to all those who might share our concern. Thanks!

One of my closest friends told me before Julian's delivery that I would be amazed how quickly and fully I would fall in love with this new little person. He was so right!

David

Monday, October 18, 2004, 4 pm MST

Stacy and I arrived this morning at 7 am after we called in and found out that the nurses were wrestling with Julian’s vitals, in particular his blood pressure and blood oxygenation. On arrival, we found that Julian needed to have more air evacuated from the lower right side of his chest cavity. The staff were able to take care of it without having to insert another tube, by “needling” him and pulling the air out with a syringe. In total, they pulled 140 cc’s of air out of his chest. His vitals stabilized almost immediately.

Regarding his kidneys, his urine output is slowly increasing. Yesterday he output about 100 cc’s (about 1.5 cc/kg/hour), and it appears that today he’s on track to output about 150 (about 2.2 cc/kg/hour). This is very good. We’re by no means out of the woods with regard to kidney function, but without urine flow, we’ve been told there’s almost no hope for Julian’s survival. From what we’ve gathered, 1 cc/kg/hr is a very minimal baseline; 2 cc/kg/hr is better, and means that he might be able to receive peritoneal dialysis without needing a G-tube for supplemental nutrition. We’re not sure how much he needs to output to be able to avoid dialysis altogether, but suffice it to say that more = better.

We did receive some good news this morning from Dr. Hall: we were told that one of the keys to kidney function is the level of creatinine in his blood. We surmised therefore that excessive levels of creatinine in his blood were toxic. As it turns out, this is not the case. Creatinine, a metabolic byproduct of the muscles, accumulates in the blood, is cleared by the kidneys and is expelled in the urine. However, it is not toxic: it is simply a measuring stick used to evaluate kidney function (as of this morning, Julian is at 4.0; normal is 0.3). In this case the key is electrolyte balance, in particular things like potassium, which, in excess, is highly toxic. At present, his electrolyte balance is not a problem, but it’s very important that this remain the case. Another indication that kidneys are failing is an increase in blood pressure. Due to Julian’s fluid restriction (he’s very edematous (sp?) – swollen, puffy), the staff is actually having to give him meds to help keep his blood pressure up. They’re also keeping a close eye on his blood gasses to make sure that the acid/base balance in his blood is maintained.

One other concern is possibility of infection from all of the incisions in Julian’s little body. He’s on antibiotics to fight such infections, but because he isn’t clearing medications through his urine as quickly as a normal baby, the doctors are concerned about negative side effects of having the antibiotics in his system for an extended period of time, which include possible hearing and kidney (!) damage. At this point, there’s not an actual problem – they’re just being very careful, trying to take all angles into account.

Overall, things are looking good – relatively speaking. Dr. Hall spoke with us at length this morning about Julian’s overall condition, and although Julian is still having issues with leakage in his lungs, he feels the greater issue is still kidney function. Dr. Hall does not consider Julian’s case hopeless, but he does deem it extremely serious. Julian is still a critically sick baby.

We’re taking some time out of the unit right now (Stacy is sleeping) to give the doctors time to do some of Julian’s major work today, which will include: a) removing 2 of his chest drain tubes (including the pericardium (sp?) tube which drains that sack around his heart); b) adding one tube to the lower right side of his chest; and c) moving his ventilator (finally) from his left side to his right. After all the major stuff is done, they’ll start to make minor adjustments to his chemistry, including beginning to wean him from his NO2 (helps with oxygenation), reducing his dopamine while adding some hydrocortisone (helps maintain blood pressure), evaluating his antibiotic diet, making a slight increases in fluid and glucose (helps with nutrition and clearing medications and toxins from his blood), and continuing to evaluate his blood gasses and monitor his vitals. Whew.

Stacy and I are very tired today, after only getting about 5 hours of sleep. We still request that unless specifically instructed or requested to do so, please do not call or visit the hospital. However, please feel free to write a line or two in an email - we love the brief notes of encouragement. In the mean time, add this page to your favorites and check back daily for updates. I can’t say when the updates will be posted, as Julian’s progress and condition pretty much dictate our schedule. Thanks for understanding.

We’re thankful that Julian is receiving this level of care here at DCH; the doctors, nurses and everyone in between are incredible. We’re thankful for Julian’s overall increase in urine output (yeah!) and the fact that we’ve been able to share this time with him. He’s the cutest baby I’ve ever seen in my life!

David

Tuesday, October 19, 2004, 4 pm MST

Dave and I had a relatively quiet afternoon yesterday after the mornings commotion. Things looked sketchy when we had arrived that morning, but by afternoon Julian had stabilized. The doctors on their rounds decided after consulting that the following things could be done yesterday afternoon:

• Julian needed one more chest tube inserted on his right side to evacuate air so they wouldn’t need to put any needles in him.
• They could remove both of the tubes on his left side.
• They could remove his peri-cardial tube around his heart.
• They could move the ventilator to his right side so the ventilator tube would be positioned primarily on his left side to let the right side of his chest rest and hopefully heal (it still inflates and is fed air, but the pressure from the ventilator would focus on the left side, which seems to have closed up and healed) This is great because he had been laying on the left side of his head since he arrived last wee Wednesday.
• He could be further weaned off NO2 (which helps his lungs to bind the oxygen to the red blood cells) and he could be weaned off some of the pressure that the ventilator outputs.

Julian took the changes well through the early evening, and was looking very good. On a sidenote, when I get really tired I become neurotic about his care and maintenance, and begin to focus on his stats and what exactly the nurses are doing to him or not doing to him that I believe they should be doing to him. I’m sure, and I’ve told the nurses this, that Dave and I (especially I) are the parents that they tell stories about in the staff break room…and we laugh a bit about that, but I don’t mind being that kind of parent. We watch him like a hawk, and that is good because one time yesterday I noticed that he was pretty red and warm, and that his heat lamp was still on, warming him even further. I mentioned it to the nurse, who realized that his body temperature sensor must have fallen off after they moved him, and since the sensor was picking up the room temperature instead of his temperature, it was operating at high capacity to try and heat him up. He got a sauna for a while, but ultimately his temp only got to 37.5, and I blew on his forehead for a while to cool him off.

Last night Dave and I left at 8pm to spend some time with each other and get some rest. We had Papa John’s pizza, and went to bed. This morning, we came in and found Julian just as we left him, stable and content. We have more access to him now that he has zero tubes on his left side, so that is nice. The X-ray came back from this morning and the Doctor told us it is the best one he’s seen yet, that it appears that Julian’s lungs are getting stronger and are in fact on the road to recovery. They weaned him off more pressure and more NO2 (now the next step down with the NO2 is actually to turn it off! Praise God!) If he continues doing as well as he is with all these changes, they will take him off the oscillating ventilator and put him on a conventional ventilator. We are looking forward to that day!

Regarding his kidneys, he is producing more urine, and is on track to produce as much today as he did yesterday. Dr. Hall, his neonatologist, told us that his lungs are looking great so he is hoping to have just one battle to wage, which may be his kidney function if that doesn’t pick up. He said he has seen babies sometimes whose kidneys don’t fully open up until 6 weeks of life, however, so just because they aren’t doing exactly what they should be now, it is possible that the one kidney that actually looks like a kidney (his right one…) may still be able to function at some capacity. His left kidney is just a bag of cysts, so that one is definitely non-functioning.

They do not see dialysis as necessary quite yet, as his electrolytes remain within acceptable ranges. They are really looking for his kidney to start clearing the BUN and the creatinine from his blood, neither of which are toxic but are measurement indicators of kidney function.

The bottom line is that the Lord has given us 7 precious days with this little guy, whom we have already gotten to know, and today has given us a glimpse of further hope that Julian will indeed pull through this monumental challenge. Dave and I have told him lots of stories, about how we met, and about his family history on both sides, so he is probably the most well-informed 7-day old on the planet. We’re convinced he is retaining most of it, of course. As far as his features, I don’t know if Dave has told you who he looks like yet. I haven’t read all of his updates, someday I will, but right now I’m living it right along with him so I’m choosing to look forward! =)

Baby Julian has Dave’s square jaw line, Dave’s very serious chin, (I can’t describe how a chin can be serious, because I lack the words…but Julian has a very serious chin.) Julian has Dave’s two dimples underneath his bottom lip, which is just adorable and not a feature I’ve seen on many people…we don’t quite know if Julian has one eyebrow or two (Dave has one long one that goes from one eye over to the other). Julian has Dave’s lips. Julian is pretty much Dave from the chin up to the bottom of the nose. Then he is all me, from the nose on up. Dave and I both have high foreheads, so we think he’s pretty much doomed to have that feature, we’ll know when his hair starts coming in.

As I type this, Dave is rubbing Julian’s feet with Eucerin lotion, because they are very dry and blistered, with skin flaking off because of how swollen he was. He just had his first meal, fed down a feeding tube, also. So far he has been sustained with IV nutrition, but the Doctors on their rounds this morning said he could start taking very small regular feedings, so the nurse put a feeding tube in him and we gave him some milk!

That is pretty much the update for us! Oh yes, please pray that we don’t get evicted from the Ronald McDonald House. There is a stipulation that you have to live 60 miles away in order to stay there, which we don’t really know if Lyons is and haven’t looked at a map. The lady who checked us in wasn’t sure either, so she checked us in anyway. We just got a message from her that she needs to speak with us about something, so we are naturally assuming that it has to do with the mileage stipulation and we might be asked to leave. As the Ronald McDonald House is located directly across the street, we would so much appreciate being able to stay there instead of having to be on the standby list for the sleeping rooms upstairs every day, and not knowing until 5 pm every night if we have a place to sleep here or not. All of this is ancillary, however, please pray for Julian first and foremost and only pray for our lodging situation if you have time…we’d prefer Julian to get all the prayers first! Again, thank you for your involvement in our lives by reading his updates, and thank you for your prayers. I asked the Lord for a few extra guardian angels around his bedside last night, and I know that He answered my prayer. I also know that when we aren’t by His bedside the Lord still is, and He cares for Julian as much as we do.

In Him,

Stacy

Wednesday, October 20, 2004, 4 pm MST

Yesterday was a relatively good day for Julian - probably his best so far. Late last night, however, an x-ray showed that he had some new air accumulation on his upper left side, where he no longer had a chest drain, as well as some on his right side, where existing chest drains were unable to get to it. They were able to needle his left side, which is good as it didn't require a new tube; then they were able to reposition one of the tubes on his right side to drain the air there. He settled down and we returned back to our place (i.e. Ronald MacDonald House) to sleep around midnight.

This morning, we found out that Julian has had no new accumulation on his left side, which means that he does not need a new chest tube/drain on that side - for the moment. Also, his air leaks on his right side seem to be contained, so the doctors are considering removal of one of the remaining two tubes. Progress is slow, but at least he seems to be getting better.

Julian's kidneys appear to be slowly improving as well: two days ago, his urine output averaged 2.2 cc/kg/hour; yesterday he averaged about 2.7. Also, his creatinine levels, although still on the rise, are slowly beginning to plateau: two days ago, he was at 4.0; yesterday, 4.4; this morning, 4.6. We're hoping that this trend continues and that his levels beging to decrease, as this would indicate that his kidney(s) are actually clearing the creatinine from his blood. This would be very good news.

Today, Stacy and I are very tired, and we're still not sure about our accommodations for the near future. We're hoping we can stay at the RMac House; we'll find out soon.

Please continue to pray for Julian: he's slowly making gains (baby steps), and is looking more and more stable, but his is still on a respirator, his lungs are very fragile, and his kidney function is uncertain. We love this little guy (!) and are praying for full restoration of his lungs and kidneys. After that we can concentrate on the lesser issues. Also, continue to pray for us, as we really need to stay healthy.

Thanks for your love and prayers. Check back soon.

David

Wednesday, October 20, 2004, 9 pm MST

Today I brushed my hair for the first time in over a week. (This is Stacy) This afternoon, as Dave was typing today’s update, Julian had another one of his chest tubes removed. He is now down to one chest tube, on his right side. Today, his left side appeared to hold its own, even with the increased pressure that came from switching the ventilator to the other side of his body. They began to feed him more milk down his feeding tube, and I washed the crusties out of his eyes. He didn’t like that part too much, and because the swelling in his head is diminishing somewhat, we could see him furrowing his little brow in deep concern…kind of like what his daddy does from time to time! He is also becoming more responsive…so far, up until today, he could really only move his hands/fingers, and feet/toes. We’ve spent many hours holding that little hand and that little foot! However, today he began doing more baby things, like responding negatively when wiped with a cold wet-wipe. He is attempting every once in awhile to open his eyes, and now that the swelling is down it looks like he may actually be capable of doing it…I think it still may be just too much work for him right this moment…we’re hoping maybe tomorrow? He was stable all day today, with his heart rate, oxygenation, and blood pressure, even though he is completely off of his blood pressure medication, both dopamine and hydrocortisone. They did need to give him some potassium because he doesn’t seem to want to retain it in his blood. We are hoping at some time soon to be able to switch him from the oscillating ventilator to the conventional ventilator, however the Doctors aren’t sure that his little lungs are ready for that yet, although they have shown much improvement this week.

My parents came into town on Saturday, and Dave and I are very thankful to have them here. They are staying in their motorhome in Lyons parked outside our home. My mom just started a new Chemotherapy drug treatment because the previous one that she has been on for over a year stopped working through the summer, and her tumor markers began to rise. We are hoping this new drug keeps the tumors at bay.

Last night Dave and I went to dinner with Wayne and Patti Weissman, they (Wayne) is the Director of Ravencrest Chalet Bible School and Conference Center, where I was the Registrar for a little over 3 years. They came down to pray with us over Julian and to provide encouragement with their presence. It was interesting, as we were getting into the elevator to leave the hospital, either Wayne or Patti asked me what his (Julian’s) name meant. Dave and I named Julian in memory of Dave’s Grandma Julia, whom he was very close to. We picked the middle name Xane out of the blue, so to speak, and after deciding on his name I looked both “Julian” and “Zane” (we have an alternate spelling of our own creation, with an “X” instead of a “Z”) up online to see what meanings were attached to them, and where they came from. “Julian” is Latin, meaning “Youthful”, and “Zane” is Hebrew, meaning “God’s Grace”. So, we are fully expecting God to show both Julian and us His Grace in Julian’s youth. That would be now.

It’s late, I’m tired, and we are going to bed. Thanks again for participating with us in this very important part of our lives. Oh, and if any of you were wondering what this does to our plans to move to Phoenix in December, well, your guess is as good as ours. We are currently planning our lives hour by hour, not day by day, week by week, or month by month.

Stacy

Thursday, October 21, 2004, 9 pm MST

Another stable day to thank the Lord for! Julian is still off all blood pressure meds, and is holding his own that way. Also, they removed his last chest tube today! This is real progress in the right direction, as far as his lungs are concerned! The Doctors were actually smiling while they were gathered around Julian’s bedside as they were doing their rounds. After they discussed his case, Dr. Hall, the Attending Neonatologist (the big gun, so to speak,) turned to Dave and asked if he thought he was getting smaller…..(he was sooo swollen with fluids)…and Dave said “His water-line is receding!” Dave was speaking about the gathering of fluid that has settled just under the skin at the base of his little head where it meets the pillow…his head seems to be returning to normal size little by little every day. Then Dr. Hall asked Dave how he thought Julian was doing…and Dave said “He’s pink!” The Doctors laughed at both of Dave’s comments, perhaps they will include it in their medical vernacular from now on…general assessment “Water-line receding, and pink.” But to us, these are major milestones. This means Julian’s little body is pulling in the fluid he has been retaining in his cells and that has been making him puffy, and it is a good sign of general healing. The “pink” means that his lungs are capable, with the help of the ventilator of course, to properly oxygenate his blood and therefore the rest of his body. Amen!

The Doctor went on to tell Dave that he is pretty sure Julian’s lungs are on the mend, and will recover. He had a bit of excitement this morning when they were taking the chest tube out, as his ventilator connection came apart, and they had to “bag him” for a minute or two while the Respiratory Therapist came to put the hoses back together. Donna, the Nurse Practitioner who was bagging him (feeding him oxygen through an inflatable rubber bag that she pumped herself) said that his lungs felt good, nothing like the day he came in to the ICU…when he came in they were hard and rigid, very non-pliable. This is why he kept springing leaks for the first several days. This time the lungs were more pliable and soft, which is awesome! Dr. Hall said that perhaps tomorrow if he has still maintained his condition and has no new air leaks they will transfer him to a conventional ventilator instead of the oscillating ventilator. A conventional ventilator does the actual breathing motions, big breath in, big breath out, instead of vibrating the air through the lungs as the oscillating one does. This would be a big thing for us, as it means we would probably be able to hold him! The next step after that would be to be off the ventilator entirely.

Regarding Julian’s kidney, Dave and I are still praying for full kidney function, at least with his right kidney. His blood creatinine level has been continuing to rise, but instead of rising 4-5 points each day as it did at the beginning of the week, it has only risen 4-5 points in the last 2 days. We are hoping the level plateaus out very soon, as if it does not do so we will need to put the little guy on dialysis.

Note: If Julian’s blood creatinine levels start to plateau and then go down, it means that through this entire ordeal of a working diagnosis of underdeveloped lungs, kidney failure, and impaired urinary function, Julian will leave the hospital with only the impaired urinary function, which they will operate on in a few years to attempt to reconstruct. Meanwhile he will have a little hole from his bladder which will drain into his diaper on an on-going basis. This is what we desire for little Julian, that he come home with us in time for Thanksgiving. What a Thanksgiving that will be! Basically, it will be a true miracle. Lord, please make it so.

Dave and I are trying to get some rest tonight, so I will sign off right now. Tomorrow is my birthday, and the best present ever would be that Julian’s creatinine levels would go down, and that he would do well on a conventional ventilator. That’s all I want for my birthday. Bye everyone! Oh yes, be sure to watch the little video (click on the right picture above) of little Julian doing fun things with his mouth. [You'll need a video/media player to watch it. If you don't have one already, QuickTime works well.] He was much more responsive today! He must be feeling better. The picture on the left shows you (if you click on it to enlarge it) what else he was doing today! Now that his face is less puffy we can actually see these little expressions, and when we took this picture he was NOT a happy camper! We call this one his “munch-face”. He is so adorable!

Stacy

Friday, October 22, 2004, 11 am MST

Just a quick update for now: Julian's creatinine level this morning came in at 4.8 - down from 4.9 yesterday. We are praying that this indicative of a new trend in his overall condition, because should his creatinine level begin to go down significantly, it would mean that his little kidney(s) are actually beginning to work! Also, Julian's urine output seems to be doing well at present: 2 days ago, he output about 235 cc, which works out to approx. 3.5 cc/kg/hr. By 11 am yesterday, he had already output 180 cc, which averages out to approx. 5.8 cc/kg/hr! This is good. However, his electrolytes are now running low, so the doctors are bumping his electrolyte intake, and cutting back a little on diuretics. The kidney specialist visited this morning and indicated that while Julian is outputing urine well (!), his actual kidney function is still low. However, Julian is not forcing the doctors to make a decision re: dialysis just yet. We're hoping that after the weekend is over, Julian won't need it. Please pray with us to this end.

Thank you all for your prayers, support and encouragement. Julian has whole churches praying for him, all over the world (literally). Thank you. Julian is our little miracle baby, and we're thankful to have had him for 9+ days now. We just pray that we can take him home with us!

Peace and love to you all.

David

P.S. Today's picture is of Julian receiving his first echo-cardio-gram (ECG/EKG?). We have no reason to believe that anything is wrong with his heart - in fact the doctors have told us Julian's heart is pretty strong - this is just a routine, precautionary measure.

Saturday, October 23, 2004, 2 pm MST

The Doctors are smiling more often now as they go by Julian’s bedside. Praise God! Yesterday he hit another milestone…they took him off the “Shake and Bake” ventilator (oscillating…Dr. Hall calls it the shake and bake because it works by constantly vibrating the patient, and the table that Julian is on is a warming table anyway…)and they put him on the conventional ventilator, which works more by inflating and deflating the lungs in a generally normal breathing pattern. Today they have already started decreasing the settings to begin to wean him off of that as well. His echo-cardiogram yesterday must have looked good, because Dr. Hall went so far as to say yesterday afternoon that he is sure that Julian will recover from the heart and lung issues. (We weren’t aware of any specific heart issues, but we believe they are tied to his lung issues and when the lung issue is cleared up, the heart won’t be affected negatively anymore…)

So! It appears that the Lord is healing this little Bub’s body a little more each day, and we will soon have to focus on his kidney issue. His Creatinine did fall by .1 yesterday, which was a wonderful birthday present for me…but today they rose by .4, so we are still in a bit of a waiting/holding pattern to see his Kidney actually kick in and start working. This is what we have prayed for. At current estimations, we will have about a week before we have to worry about dialysis if the kidney fails to pick up. The doctors weren’t too concerned about the seemingly big jump in the creatinine levels today, because they do have him on a restricted fluid (negative fluid) intake, so they believe he may be dehydrated somewhat and this could have caused the existing creatinine level to become more concentrated, and read higher even though it may not really be. They have him somewhat dehydrated to pull the fluids from his periphery (he has been so swollen with fluids since he came, but has in these last 3-4 days begun to lose his swollen look, and actually today looked like the swelling was almost gone completely…again, praise the Lord!)

Dave and I feel so great about where he is today that we actually both left the ICU AT THE SAME TIME to get breakfast, and now we are across the street at Starbucks updating the website so you can know how well he is doing today also. The little guy is still in critical condition, as he is still on a ventilator, but we felt alright to leave him for a couple hours at a time in the good hands of Jodi, his nurse, after we met with the Doctor this morning and got the day’s update.

OH! Yes, I almost forgot…the little guy opened his eyes today! Both of them! His eyelids were swollen shut up until now, and yesterday it looked like he was trying to open them, but still didn’t have the energy. Today he has discovered that there is a fifth sense that he has just figured out how to access, and his eyes are fluttering open and staying open quite a bit! He is also squirming around a lot, which will help with continuing to decrease his swollen-ness in his body. He began squirming yesterday, and Dave and I were actually concerned because he was moving, and then we realized that’s what babies do, and it’s OK!

Thanks again for praying for us, please continue to do so, we love this little Bub with all our hearts, and there is nothing that we wouldn’t do for him!

Stacy