October 20, 2007

The day of Jack's funeral was rainy and cold. We were all sad and the heavens knew it. The next several days were beautiful, filled with blue skies and sunshine. Jack was welcomed home by so many people that it seemed like he wanted to introduce everybody. Jack's best friend Luke passed away the day of his funeral and within one month 3 more of his buddies left their families as well. We joke that as soon as we get there he's going to be grounded for taking his friends with him. It has been a blessing to be a part of such a wonderful network of friends who are experiencing similar challenges. We are filled with gratitude for each one of you who has followed us down this slippery road. However, there are always treasures awaiting the traveler that become priceless experiences and memories that are held forever. The beginning of roads such as these are often marked with "dead end;" however, upon returning the signs suddenly read "scenic overlook 2 mi. opposite direction." We often find ourselves somewhere along that path, reliving the moments that have shaped the last few months of our lives. Peace is in our hearts knowing the plan of our Heavenly Father is real. We are grateful for all of our friends and family who have been so kind and supportive. This experience has brought all of us closer together and deepened our commitment to the principles of the gospel. Thank you for all you have done, you were there when we needed you the most.

October 18th

It is difficult to describe our emotions over the past few days. Jack accomplished all that he was sent here to do and returned home. We are heartbroken but have peace and understanding at this time. As the week progressed Jack helped us realize that his mission was complete here on the earth. After doing all that we could physically do, Heavenly Father found a place for him. We are so grateful for all who have been so involved in his life and would like to welcome you to a service held in his honor on Saturday October 20, 2007 at the Wells Ward. (1990 South 500 East Salt Lake City) A viewing will be held at 9:30 a.m. prior to the 11:00 a.m. service.

Baby Jack returned to his Heavenly Father on October 17, 2007 after enduring complications from heart surgery. Although he was only here for a short time, he accomplished all that was required of him. Jack’s little life brought countless people to their knees and has invited change into all of our hearts. The network of family and friends that have surrounded Jack has been a constant amidst the unknown. His parents would like to express their heartfelt appreciation to the many hands that cared for him in the Pediatric ICU at Primary Children’s Hospital. The depth of their touch has left an imprint on our hearts forever. Jack is survived by his parents, Darren and Sarah Nelson. A funeral will be held at 11:00 a.m. Saturday October 20, 2007 at the Wells Ward located on 1990 S. 500 E. in Salt Lake City. A viewing will be held an hour and a half prior to the services. We can’t wait to see you again Jackie B!

October 14th

The weekend has treated us rather nicely. Jack has had a really good day. Now we know that Jack really loves the nitric oxide so they decided to leave him on it for a little while longer. It may have been just too much for him yesterday. Jack has had 37 IV's, 4 PICC lines, and a few central lines. In doing all of this the nurses have to be really careful which medicines they give simultaneously through the same lines. Because Jack is so small the lines they put into him are equally as small and if not carefully monitored they can become occluded. Recently one of Jack's PICC lines was not working for this reason and it became unusable. Luckily today they were able to fix the line and now it's working. These are obviously little things, but they make life for Jack and his nurses a lot easier. It is amazing to see how skilled the nurse is who places these lines. We are always so thankful for his work.
Jack has done a great job today. Doctor Hawkins stopped by and took him off one of the diuretics that works on his kidneys but adversely effects his blood pressure. It has proved to be a good move as his blood pressure has increased significantly. Thanks to the blood pressure he is peeing better than he ever has. Between 9 and 10 tonight he hit a record high of 19 cc's. We're prepping him for the redneck games. We hope that the trend continues and we have similar things to say tomorrow night.

October 13th

During the last few days Jack got a new chest tube, a new arterial line, and had some of his medications changed. His head and belly are measuring a centimeter less than they did on Wednesday so we are encouraged by that. Everyone in the PICU had a hard night. Over the last few weeks we have become friends with a Mexican family whose little boy is next door. Last night they had to send him home to heaven. It was nice to be able to talk with them and be strengthened by their faith in the plan of our Heavenly Father. We pray for them.
Jack's kidney function continues to slowly improve and they are weaning him off the nitric oxide. We will see if the pulmonary hypertension is better. Jack weighs 9 lbs 6 oz, without all of the fluid he would weigh about 6 lbs 8 oz. You can imagine what your child may look like if he or she had almost 3 lbs of water weight. Hence the lack of pictures on our blog. GO UTES!

October 11th

Jack went on a little field trip today to the cath lab. He spent about three hours downstairs while he was being checked out. Yesterday, an echo of his heart showed some pulmonary stenosis. This basically means that his pulmonary artery had narrowed for reasons that are not entirely clear. They were thinking that this could be part of the reason he continues to retain fluid. After inserting dye into his heart his function looked good and they determined that it wasn't really an issue. It was good for them to be able to look at things a little closer now that he is stable enough to withstand it. We are glad that things looked good during the cath procedure, however, it would be nice to understand a little more clearly why his body is behaving this way. Jack will be able to progress as long as his output can be 150 cc's or so more than what goes into him. So far tonight he is about half way there so we are encouraged. This is largely dependent upon his ability to avoid receiving fluids in order to improve his blood pressure. All things considered today has been a good day. He has done a good job peeing and endured his tour of the hospital without much distress. He is a brave little soldier who is doing his very best.

October 10th

Although Jack continues to pee, the swelling is sticking around. He is working really hard to get better and we love him more each day. He has had to withstand incessant suctioning of his little nose all day and has been such a champ. We can't imagine how uncomfortable he must feel sometimes. It is incredible that he is usually able to calm himself down when he gets angry and most of the time do it without the help of medication. The nurses are so good to him even though certain activities like this make him really upset. Jack continues to receive among other medicines, two different diuretics and hydrocortisone to help his kidneys. The numbers that are used to measure kidney function usually lag behind the changes that occur, however the numbers have started to head in the right direction after his struggles the last couple of weeks for which we are relieved. Hopefully he is busy storing his energy for what lays ahead of him. We are so thankful to all of you for the prayers being offered on our behalf.

October 8th

Here's a look at what all of you have been praying for. Beautiful isn't it. That's what we think. We are getting real good at telling how much is in the tube before it actually gets measured. I'm going to say that's about 6 cc's. Not bad for 20 minutes. The two little boxes on the floor are the chest tube drains. Jack has had a good day. He is resting well and wakes up enough to move around a little and mobilize some of the fluid. In the other picture I was just making sure he would be able to hold his own churro when his mom takes him to the state fair. Thanks for all the posts. You don't want to know how many times we check each day to read your comments.

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.

September 24th

Today's nickname is Black Jack. The IV team came today and for the 21st time were successful in placing a new IV. Many of the drugs that they give him are not compatible with each other so they can't be administered through the same line. All this means is that he has to have 2 or three places at a time where they can give medicines. He currently has an arterial line in his leg to measure his blood pressure, and an IV in both feet. He also has the PICC line in his left arm so they can give medicine to his heart. Dr. Hawkins saw him this morning and wants to wait to see if he can get rid of little more fluid before he goes to surgery. They started him on a different medicine to help him pee and so far it seems to be working well. We are glad that he is where he is today and couldn't be prouder parents.

September 23rd

This is a poem that appears to be floating around hospitals and other similar places, unfortunately I can't quite verify the author. The version we have says it was written by Diane Critcher but the sources appear to be conflicting. Anyway, I think it describes some of the thoughts and feelings we have had recently.

When you're going to have a baby. It's like you're planning a vacation to Italy. You're all excited. You get a whole bunch of guidebooks and you learn a few phrases in Italian so you can get around. When it comes time, you pack your bags and head for the airport--- for Italy.

Only when you land, the flight attendant says, "Welcome to Holland."

You look at one another in disbelief and shock and say. "Holland? What are you talking about? I signed up for Italy!"

But they explain there's been a change of plans and you've landed in Holland, where you must stay. "But I don't know anything about Holland! I don't want to stay!"

But you do stay. You go out and buy some new guidebooks. You learn some new phrases and you meet people you never knew existed. the important thing is that you are not in a filthy, plague infested slum, full of pestilence and famine. You are simply in a different place than you had planned. It's slower-paced than Italy, and less flashy than Italy, but after a while, after you have the chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone else you knew is busy coming and going from Italy. They are all bragging about what a great time they had there, and for the rest of your life you will say. "Yes, that's where I was going. That's what I had planned."

The pain of that will never, ever go away.

you have to accept that pain because the loss of that dream, the loss of that plan, is a very, very significant loss. But if you spend your life mourning the fact that you didn't get to Italy you will never be free to enjoy the very special, the very lovely things about Holland.

Jack is holding his own, we'll have more to tell you when we talk to the doctor tomorrow.

Friday September 21

Tonight Jack is resting comfortably. I have found that updating the blog is a lot easier if there is new news. He is doing about the same. We are anxious to see him take bigger steps in the right direction but we are grateful that he is maintaining his fight. The doctors are fighting two battles that are difficult to fight at the same time. While Jack needs all the help he can't get for his kidneys to get rid of the fluid, he also needs antibiotics to keep his infection away. The antibiotics are very hard on his kidneys so the doctors find themselves walking a fine line between giving the antibiotics that he needs and allowing his kidneys optimal conditions to perform. We continue one day at a time and pray that he improves. Thank you all for your thoughts and prayers.

Wednesday September 19

Yesterday we celebrated Jack's one month Birthday. We still can't believe all that he has experienced in his short little life. Yesterday they removed the wires that were used in case his heart needed to be paced. We are anxiously waiting the return of Dr. Hawkins, who is out of town. It is a little worrisome to have the man who knows everything about his heart so far away, however, Jack needed a few more days to get ready for his surgery. We hope that tomorrow will be the third day in a row that his blood cultures will be negative. If so, we can be fairly confident that the antibiotics have been effective in getting rid of the infection he's been dealing with. He has come a long way.

Sunday September 16

All things considered Jack is doing well despite the infection in his body. He continues to be on the antibiotics and we are hopeful that they will be effective in stamping out the infection. It is interesting that he is not showing more of the effects of it. We are happy to report that today was the first day he has lasted the whole day with good blood pressure without medication. Apparently he doesn't know that he is infected yet and we hope it stays that way.

Saturday September 15

Early this morning Jack's bed was changed with a Utah fleece blanket. During rounds, one of the doctors commented on the blanket and said, "I think it's going to take more than that for the Utes to win today." I'm pretty sure we were all thinking that, but man were we wrong. I think it was Jack's help that pulled us through. What a game. I already heard a Cougar fan tell me that UCLA had a hard time with the altitude and that was the difference maker. Excuses, Excuses. 44-6 baby! Incredible. After a lot of discussion we opted not to take Jack. I think we made a good decision. He got to hang out here and sleep. As you can see they removed his sutures today and his chest looks really great. He is still battling an infection that probably originates from one of his many lines that in his body. The PICC line may be the culprit so they thought about removing it, however, they were unsuccessful when they attempted put a line in his leg. They are going to wait and see if the culture grows for a third day tomorrow, that may give them greater determination to replace it. Jack is also still draining a lot of fluid. Often times after a long operation the ducts of the lymphatic system leak the fat found in his food. This fluid is leaking into Jack's chest, and peritoneal cavity which then drains out of his chest tubes. Sometimes the ducts will close up on their own given time, and sometimes the surgeon has to go in and staple them shut and due to the fact that they are hard to see it is often guess work when they go in with the staple gun. The doctors are concerned that Jack is leaking too much of this fluid. Hopefully he will stop leaking the fluid, if not the surgeon will try and seal them when he operates. Just a small peek into the life of Jack. We are so glad that he is such a trooper and is handling this all so well. So well in fact that I bet if you ask him what he thought about this whole experience when he is older, he won't even remember it.