Our meeting with Isaac's doctor

Dear Brothers and Sisters,

Again, all of your prayers made a difference today. While I don't think we got the result that we were expecting or hoping for, it seems pretty clear to us that He really wants us to trust Him and to appreciate how much he has blessed Isaac thus far.

It was raining today and traffic was simply awful. Why do the Japanese put the biggest buildings on the smallest streets!!!! Being an impatient LA commuter, I tried my very best to resist my natural proclivities and be patient and calm but it was so hard! It totally seemed like a conspiracy to test the limits of my endurance. My 45 minute drive ended up being almost double that which caused us to be seriously late for our meeting with Isaac's doctor. Of course, there wasn't any nearby parking when I got to the hospital. Thank God that I had a Japanese friend from church (to translate) and my mom in the car as I think I would have had a much harder time with my temper otherwise. Add to that the daily burro ferrying of clothes, water, moist towels, etc... (as a public hospital, you have to pretty much buy your own everything - sort of like a mexican jail!) and heavy plastic bags ripping from their weight and I was completely off my game by the time I finally reached Sonia's room.

All I could think about was how my 23 week old son had been wrongly starved for a week, how he was all skin and bones now looking like something out of a holocaust film and increasingly less active. I all could hear in my mind was Sonia's quiet yet heart wrenching weeping over the phone prompted by the sudden possibility that our lack of preparation to be an effective advocate for our son might have somehow already allowed a critical and potentially irreversible crisis to develop and threaten Isaac's wellbeing.

But He was so in control! I felt like he wanted me and Sonia at our very worst, vulnerable and unprepared so that his glory would be so obvious even to fools like us.

First, He made sure that we didn't have to struggle with language difficulties or risk personally offending Isaac's doctor (by challenging his chosen course of treatment - welcome to Japan) over such an important issue. We were so worried about this, I took a Japanese friend's entire afternoon away from him to translate for us. It turned out that Isaac's doctor had done a 24 hour shift and was not in today. In his stead, we met with his colleague, a Dr. Kawase who not only speaks very good functional english but was also the doctor that tried to save Rachel for us. This was a huge break. Dr. Kawase was actually the doctor who mentioned TPN before. He is also the more progressive of the two (probably more senior and I'm guessing some clinical experience outside of Japan).

Second, because I was late, we ended up visiting with Isaac for an hour before we met with Dr. Kawase. While he still looked really emaciated to his daddy, we were given some guarded but good news. The nurse told us that Isaac's ventilator settings had been adjusted so that he was now receiving an oxygen level comparable to regular air (it was higher before) and that they were able to lower the dosage of his blood pressure medicine (his heart rate is back to around 140 bpm now). His skin was pretty dry and he seemed to be sleeping well. Isaac continues to enjoy his foot rubs and despite their warnings against it, I massaged his legs and arms and moved them around a bit.

On a blessed note, our nurse overheard Sonia singing "Yes Jesus Loves Me" and it turns out that she used to attend Sunday School in her home town! We're going to have to pray extra hard for her now.

Finally, when we were able to meet with Dr. Kawase, he already sensed that we were worried about something and, almost as if He simply spoke to Dr. Kawase directly, he came right out and asked us what was on our mind and how he could help.

We (politely) raised three simple points: (a) every premie parent and MD we have communicated with around the world have consistently and universally stated that IV nutritional support (TPN or some variant) should be used in mcro preemies this young in conjunction with efforts at feeding Isaac a little bit of her mother's milk; (b) what can we do to accelerate the removal of the ventilator as soon as possible to help Isaac's development and avoidance of chronic lung disorder and (c) whether there was any flexibility with the amount of time we could spend with Isaac daily.

Dr. Kawase readily acknowledged that TPN is used aggressively in places like the U.S. and elsewhere. However he said that this isn't the case in Japan because their experience / data shows two problems. First, the Japanese experience with TPN has been that it causes liver complications, especially in micro-preemies because it is much harder for them to absorb the lipids and amino acids that are in the solution. Second, the Japanese have had higher incidents of intestinal necrosis with TPN, again especially with micro-preemies.

Most importantly, he said that despite their experience, TPN would strongly be considered if Isaac wasn't doing as well as he seems to be so far. Isaac was started on his mother's milk at 0.5ml just 2 or 3 days after birth and is up to 2ml per feeding (still needs to get to 6-7ml to break even), he seems to be taking his mother's milk well enough and shows no sign of necrosis, is passing fluids and having bowel movements. The doctor believes that his weight has stabilized, partiallly because he isn't burning a lot of calories now. He felt that Isaac had a shot at getting up to 5-6ml per meal over the next week. Finally, he confirmed that their "natural" approach would not have any materially negative impact on Isaac's growth and development over the long haul.

Despite all of this, he asked us if we wanted to insist on TPN. As he wasn't Isaac's primary doctor so he couldn't order it himself but based on his explanation and Dr. Kawase's guardedly optimistic short term outlook for Isaac, we felt comfortable enough that the doctor's were doing what they honestly thought was best for him. It was also clear that they would put him on TPN if his progress did not continue. The transfer to the middle of nowhere, Isaac's ability to make it to week 24, everything is certainly according to His plan and I we believe at this point that He expects us to rely on Him to take us all of the way. Also, to clarify, they have had him on glucose IV since day 1. I know it isn't much additional nutrition but hopefully it helps a little.

We also talked a bit about the ventilator. Based on a few posts and some research, we understood that the best thing for Isaac was to be able to breathe on his own as soon as possible. Unfortunately, the doctor informed us that this is a function of body weight and that Isaac would need to get to at least 1 kg before they would consider taking him off of ventiliation. In addition, he mentioned that the assisted breathing would help Isaac avoid burning a lot of extra calories at this stage which is a good thing since he is isn't able to take in enough milk yet. Our primary concern was that the ventilator would increase the chances of brain hemorrhaging. However, we were pleased to hear that the doctor felt the odds of this happening had decreased given Isaac's progress. On the other hand, he suggested that the bigger long term issue is PVL periventricular leukomalacia and brain development. The doctor showed us a chest x-ray of Isaac and he said that the lungs were doing pretty good and there were no dark spots or anything. Again, I think we just need to keep praying that everything continues to move in the current direction.

Finally, we decided that we didn't want to push to increase the amount of time we got with Isaac each day until Isaac's milk intake level increased enough where he could burn more calories. As the posts and research suggests that what 23 week olds really need most is sleep in quiet space, we think giving him time may be best. When I'm there, I'm so excited about touching him that I am afraid I'll over do it anyway.

We pray that Isaac's condition over the next couple of weeks will continue to progress enough to allow us to focus on his longer term challenges - CLD, ROP and PVL. I know that sounds strange but we know micro-preemies can take a turn for the worse very quickly and we are not going to assume anything at this point.

Thanks again for all of your continued prayers and support. Your prayer, encouragement and informational posts have been really great. As I mentioned before, they've been a blessing to many others who have visited our blog site.

We aren't medically certain whether this course is the right one and we would appreciate your thoughts but we do feel like the doctors are treating Isaac based on what has worked for them in the past and that what is needed now is faith in Him as much as medical intervention on our part.

Blessings,

Jong