October 6th

Jack's swelling has continued to decrease over the past few days. His output continues to be consistent and we are able to see more and more of him. It has been days since he has been able to open his eyes and today the puffiness around his eyes subsided just enough for him to peek up at us. It was worth the wait. We are humbled by the manner in which the Lord has touched our family.

October 5th

We are cautiously optimistic as Jack condition has improved. We can't describe how we feel for all of you who have been so concerned for Jack recently. I mentioned yesterday that soon after we held Jack he started to pee. His urine output has been consistent since then and has shown remarkable improvement. His head and chest measurements are 1.5 centimeters less than they were yesterday and he is being ventilated with much less effort. The treatment hasn't been changed during the past two days- only the removal of medicines he appears to no longer need. We are grateful to have climbed that mountain and are newly invigorated for the bumps that lay ahead.

October 4th

We are so grateful that we are able to spend another day with Jack. Unfortunately updating the blog has kept me a little too honest and I feel that under any other circumstances I would never be this honest about something with so many people. This morning we held Jack in our arms for the first time in six weeks. We felt that it may be our last. The fluid in his tissues has caused his chest wall to stiffen to the point that it became very difficult for the ventilator to fill his lungs. As we held him he slowly started to open up and the rocking in the chair caused him to drain over 100 cc's of fluid out of his chest tubes in less than 4 hours. He also started to pee and by the time we were done he had 25 cc's of the liquid gold in the tube. That was over a 7 hour period but it felt good to have that much in the tube at the same time. Since then his blood pressure has been outstanding and they have weened down some of the medications. It has been one of the most difficult days of our lives. We are strengthened by all of your prayers.

October 2nd

We feel Jack's little angel Grandma's were with him today. As has been mentioned, Jack's condition has worsened over the past several days. The doctors have been trying everything they can think of to help facilitate his kidney function but to no avail. Nothing has consistently shown that his kidney function is bad enough to cause the resultant lack of urine but it remains a mystery as to what is causing Jack to not respond to the treatment. Due to the immense swelling, it became very difficult to ventilate Jack's lungs this afternoon. Thankfully they were able to get things under control and tonight he has been doing better in that arena and his output has started up again. It is hard to have the ball completely in Jack's court. I suppose these are the moments we all have when we understand a little better what it means to be "sufficiently humble."

September 30th

Tomorrow is a new month. It is nice to have a new beginning with Jack and renew our outlook. He is currently in "protective isolation." Normally when babies get sick their white blood cell count goes down instead of going up like it would in an adult to fight off infection. Jack's white count is down which eludes to infection somewhere. They are testing cultures of blood and thus far nothing has grown. Over the past few days he has really gotten swollen and has been having a hard time. His urine output has increased throughout the day so we are feeling positive about that. Most of what we hear is simply to wait and see how he responds to the new treatment he is receiving. The doctors are trying new combinations of drugs that he has had previously along with others that are working more specifically on the kidneys that don't have as big of an affect the rest of his body. It was so nice to go to church today and feel the love and support of so many of our friends. We have such a great ward family and are so thankful for them for all they have done for us. For all those who have been so great, know that your prayers are received here in room 2309. We feel of your love and know that we all wished we could do more. Please know that what you are doing is not in vain, keep it up. We join our prayers with the chaplain who stopped by the other day and prayed that he would grow up to be a little boy who chases the frogs and plays on the computer. We know he will.

September 28th

Historically Thursday's and Friday's have presented themselves with bumps in the road for Jack. Each weekend we seem to be experiencing the same things over and over. This week was no exception. He started to take some baby steps forward and ended the week taking a couple of big steps in the opposite direction. Ideally, the physicians would like to see Jack's urine output around two or three ml's per hour. Yesterday he put out 9 ml's the whole day. Consequently Jack does not look like our little baby anymore. He has cauliflower ears and his eyes are swollen shut. All he needs is a singlet and we can throw him in the squared circle. Like I've said before, he is a fighter. They started him back on nitric oxide to help the pulmonary hypertension. He is also on another set of diuretics. His blood pressure has started to sag again probably because he is so dry intravascularly. They are choosing not to give him more fluid to increase the blood pressure because whatever fluid they do give him leaks back into the tissue. He is dealing with two problems that kind of work against each other that really make it difficult for the doctors to treat. The fluid helps to maintain his blood pressure and since Jack can't keep the fluid in his circulatory system it causes him to get more swollen. In essence he has plenty of fluid it is just in the wrong spot. Basically they are sacrificing the lower blood pressure in hopes that his kidneys will start doing their job without a higher blood pressure. On the bright side his heart function looks good and is improving. With the surgery Jack has undergone at such a young age we try not to be surprised that he is having a hard time bouncing back. Today we made the realization that from day one his body didn't get a chance to do normal body things. The first five days he was without much for his kidneys to process, then spent a day on bypass. It is no wonder that he is having a hard time doing the normal baby stuff. We are grateful he is being watched so closely and that he still gets mad when he is bothered by something. Sarah was lucky and got to hold him while they changed his bedding today. I know he couldn't have been blessed with a better mommy. She is doing such a good job.

September 26th

The catheter was removed from Jack's stomach tonight. It was draining the fluid off his belly but it had slowed down enough that they thought it a larger risk for infection than useful for removing excess fluid. It has been very infrequent that Jack hasn't received an echocardiogram (ultrasound) of his heart. Today's echo showed good heart function although his triscupid valve continues to have moderate regurgitation. Dr. Hawkins feels that when the vascular ring is corrected the pressure will decrease enough that the valve problem will be less of an issue. Waiting for the swelling to go down is a slow process but it appears as though things are going in the right direction. We are always excited for Wednesday because everyone in the hospital gets to play bingo, and better yet, everyone wins a prize. (even if you're too little to play) This week Jack prize was teddy bear with a green bow.