Jack

October 20, 2007

2007-12-10T11:39:00.000-07:00

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

2007-10-18T14:23:00.000-06:00

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

2007-10-14T21:28:00.000-06:00

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

2007-10-13T10:36:00.000-06:00

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

2007-10-11T22:27:00.000-06:00

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

2007-10-10T20:59:00.001-06:00

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

2007-10-08T21:58:00.000-06:00

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

2007-10-06T22:42:00.000-06:00

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

2007-10-05T13:42:00.000-06:00

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

2007-10-04T21:28:00.001-06:00

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

2007-10-02T20:29:00.000-06:00

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

2007-09-30T20:51:00.000-06:00

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

2007-09-28T21:29:00.000-06:00

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

2007-09-26T20:54:00.000-06:00

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

2007-09-24T21:04:00.000-06:00

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

2007-09-23T21:34:00.000-06:00

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

2007-09-20T14:27:00.000-06:00

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

2007-09-17T21:11:00.000-06:00

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

2007-09-16T22:17:00.000-06:00

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

2007-09-15T20:43:00.000-06:00

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.

Thursday September 13

2007-09-13T20:39:00.001-06:00

Jack is almost back to his birth weight. We are happy that he is making progress. The doctors are hoping that Jack will be ready for his surgery late next week. He is doing well despite a little infection that he is battling. They found it quickly and were able to begin treatment soon after so we hope that it won't be too big of a setback. He seems to be responding well and glad to be feeling a little better. They are planning on taking the stitches out tomorrow, so here is the before- and tomorrow night you can see the after pictures. We hope life finds you well. P.S. Thanks for the blanket Connie, we've tried both sides and everyone is commenting on how cute it is.

Tuesday September 11th

2007-09-11T21:39:00.000-06:00

Jack told us he wanted you all to be the first to get to see his cool scar. They normally don't stitch the skin but because they had to go back in the second time they had to suture it shut. As a result he will have the full effect of a nifty Halloween scar. I am feeling good about it because we won't have to spend $40 in the Halloween section of Fred Meyer purchasing fake scar materials so uncle Cam can spend 3 hours doing make-up before he goes trick or treating.
Jack has a new room. We are now in bed 8, further away from all of the in and out traffic of bed one. The new room is a little bigger and offers us a view of the construction going on outside. It was a little extra, but we thought we'd splurge. Today Jack got a PICC line put into his arm. (peripherally inserted central catheter) In order to reduce the risk of infection he had the line removed from his neck and they replaced it with one in his arm. It travels up his arm and into some bigger veins by his heart. This is a more permanent solution to an IV, it will be helpful to not have to replace them as often. We were happy that they were able to do it on the first try here at the bed side. He has been doing pretty well the last few days, we are still waiting on his kidneys, however, tonight he is showing marked improvement. We are so happy to know that Jack is in good hands, the nurses are very consistent in their care of him. Jack mostly has all of the same nurses, so every time his nurses work they are assigned to him. This is comforting as they are always up to speed on how he has been doing, his progress, and what he needs specifically. We never feel like we are getting a nurse that doesn't know his condition or the ways in which his care has changed from day to day. It is nice going home at night knowing he is in good hands and can call if we get anxious. We appreciate everything all of you are doing for us, we don't know what we would do without you.

Sunday September 9th

2007-09-09T22:55:00.001-06:00

Jack is still having a hard time getting rid of fluid in his body. They determined today that they needed to replace a chest tube that they had previously removed. We are learning to be patient with the little guy, he definitely sets his own schedule and lets us know that he is the only one in control of his recovery. We knew from the beginning that this would be a long process with lots of ups and downs and we are being forced to actually believe it. His kidneys have taken a beating through the surgery and all of the medication he has been on. All of the tubes that drain the fluid have made them lazy so they don't think they need to do their job. You know you really have arrived when your days consist of staring at a tube, waiting incessantly for the liquid gold to pile up. We count every drop of it. Thanks for all of your love and support.

Game Day 9/8

2007-09-08T23:04:00.001-06:00

Jack's grandpa gave him some sweet swag for the big game. Thanks Gramps!!
Oh yeah, few of you were asking who we think Jack looks like. It is fairly easy although lately it has been hard to decipher him between one of us and Bionic Boy. He definitely has Sarah's eyes and hairline and his lips and chin come from his Dad. His hair appears as though it may have some Dudley red and even a curl or two. Maybe it is his temper that has convinced us of that. But we'll just have to see about that one.

And you thought Jack was tired.......

2007-09-07T22:47:00.000-06:00

Just to clarify, I want you all to know that Sarah is the one who needs the most sleep around here. Working hard to assure Jack receives good nutrition, Sarah is very dedicated despite the odd hours and the uncertainty of his feedings. We are excited that he is back on the milk, and so far so good. Jack has come a long way in the last 3 weeks yet still has unimproved roads ahead, but we are so thankful that the Lord has allowed him to come this far. Today he is officially off all of his heart medications. His next big hurdle is for his kidneys to function without the help of medication, and to begin to breathe more and more on his own. I thought I'd make sure you all knew that Jack isn't the only one who can sleep despite the uncomfortable circumstances. We have to be good sports about whose turn it is to sit in the rocking chair. Otherwise things are going as good as can be expected at this point. We are just praying that he avoids infection and that the systems in his body can recover from all of the medication he has been on. Your comments have been so rejuvenating to read and we feel blessed to have so many who care with such sincerity.

September 6th

2007-09-06T20:19:00.000-06:00

Today marks two weeks since Jack had his heart repaired. He has been such a champ. We are pleased to report that today Jack's blood pressure is sustained without the help of medication. The past few days he has been weened off Epinephrine, Dopamine, Vasopressin, and Milranone. He continues to receive Amiodarone to help with the arrhythmia, Fentanyl for pain and whatever minerals he may need to keep his body in balance. They also turned down the ventilator today to let him adjust to breathing on his own. He has made such improvement during the last three days that we can hardly believe it. It is hard watching him get better knowing he is going to have to recover again from another surgery. However, the next operation should be less complicated and allow him to recover fairly quickly. We hope to have many more days similar to this one.

September 5th

2007-09-05T20:16:00.000-06:00

Well, today Jack joined the ranks of both his Grandmother's... he received his first dose of Ativan. For all those who are already wondering, no we won't be taking a prescription home with us. The doctors say Jack has had enough narcotics, so they are using other medications to help him stay comfortable. It appears as though he is finally acting like a normal baby. We used to be so concerned when he would cry because we knew he was experiencing a lot of pain; now he seems quite comfortable without the help of the Fentanyl and cries here and there like all babies do. The doctors have decided to try and take out the breathing tube and see how he does (this may take up to a week to wean him off), metering his ability to breathe on his own will determine how soon he will need the surgery to correct the vascular ring. If he does well on his own they may opt to wait six weeks in order for him to be bigger and stronger before they operate. If not they will do it sooner depending on the need. Hopefully this will be the end of the diagnoses and Jack can get on the mend for the last time.

September 4th

2007-09-04T21:27:00.000-06:00

Jack's day went really well. During the past two days he has been weened off two of his blood pressure medications and is doing very well despite the added support. They are trying to get him stronger so that he can breathe on his own and hopefully get a little bigger. He is still swollen on his flanks and abdomen but is showing improvement. We are excited because he is beginning to loosen up around his belly button and show little wrinkles in his skin. His blood pressure has stabilized to the point that they have stopped replacing the fluid that he is losing, this will help reduce the swelling even more. Additionally Jack is no longer on the paralytic medication so he is moving around a little and crying more. It is heartbreaking to watch him cry because the little guy doesn't make a sound. He does all the things little babies do when they cry except you can't hear it. Today Jack taught us that he knows who his mommy is. When he gets upset Sarah is able to soothe him and help him through the suctioning of his airway. It doesn't take long for mom to calm him down, I think she's already won his heart. You all have been so nice with your expressions of love and kindess, we truly are indebted to you. Among the many gifts Jack has received are these airplane mittens our good friends gave him, we thought they were cute enough to merit a picture.

Labor Day

2007-09-03T13:48:00.000-06:00

The article below explains what the doctors are suspecting that Jack has. There are two aortic arches that form a ring around his esophagus and trachea. The Doctors believe that this is the cause of the difficulty in ventilating him properly. When Jack is agitated the vascular ring clamps down on his trachea which in turn blocks the air from the endotracheal tube trying to enter his lungs. From the article it appears that there are very few cases in which this is found in conjunction with transposition of the great arteries, however the article is 8 years old. This necesitates another operation order to redirect the aorta from the trachea and esophagus. Dr. Hawkins told us this is the first time that he has ever seen both the transposition and the double aortic arch in the same patient and he has done almost 200 arterial switch operations. Normally the two defects present themselves separately. He has explained that this shouldn't be something terribly difficult for him to correct, however, there is a nerve that is very close to the aorta that leads to the vocal chord that if disturbed can make it impossible for Jack to breathe on his own. In order to avoid this the surgeon will enter on the side of Jack through his ribs. They would like to get Jack weened off all of his blood pressure medication and as stable as possible prior to the surgery so we don't anticipate this happening at least for a few days. We will keep you posted.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=101111

2 Weeks in the PICU

2007-09-02T22:48:00.000-06:00

Today Jack is again receiving milk from his mommy and is less two of his chest tubes. He sailed through the day relaxing and enjoying his medications. Tonight his heart decided it wanted to beat really fast and although he seems to tolerate it well, it really isn't a good situation for the little guy. The doctors and nurses have been working on it a while but haven't been able to slow it down. It is such a blessing that we have the ability to be here with him in the hospital. Sarah and I have commented on numerous occasions how great it is that we live here in the valley, so close to such excellent care. As we have met others who are in a similar situation, we have thought many times how different our experience would be if we were from out of town. We are so fortunate to have family and friends so close that support us, not to mention work and school that afford the flexibility to continue with our plans amidst the craziness here. Although Jack has more rubber and wire coming out of him than a blown out radial tire, he still is adorable and melts our hearts. Thanks for everything.

Saturday September 1

2007-09-01T22:32:00.000-06:00

Considering all that Jack has endured the past few days, we are so grateful that he is so determined to experience life. Whether we attribute the minor improvements made today to yesterday's surgery or not is yet to be decided, however, Jack's little body seems to be doing more of what the doctors would like to see. His blood pressure continues to be marginally better today although tonight he made sure our blood pressure skyrocketed. He had a little bout with his heart rate jumping up to the 200's. Normally he should stay somewhere near the 160's. This has been something he's experienced before, however, tonight it wasn't quite as momentary. After attempting various remedies they gave him some medicine that immediately broke the pace and put him right back in rhythm at 160 beats per minute. It is hard to believe that someone, somewhere, figured out that this little mixture of chemicals when placed into the heart will have the effect of stopping the heart momentarily and placing it back in its regular pattern. Unavoidably, this little experience also leaves me awed as to the intricacies of our bodies. The specificity wherewith this drug worked is almost incomprehensible, while on the other hand there is still so much that we don't understand. This has made me think of one of my favorite scriptures: Mosiah 4:9. Each new day Jack allows us to capture a slightly greater glimpse into the schedule he has in mind, albeit not exactly what we have planned for him. Consequently we are learning to be patient and allow Jack the time he needs. It reminds me of the all time favorite line given to expectant parents... "you know he's not going to come with an instruction manual."(usually followed by some form of a partially amused smile) I feel confident we prepared for the lack of instruction manual, we just didn't think he would surprise us with this! We are strengthened by the hand of the Lord as he truly has supported us through our trials, our troubles, and our afflictions.

Friday August 31

2007-08-31T10:44:00.001-06:00

Another rough day for our little Jack is coming to a close. As I have mentioned he has struggled for the last couple of days maintaining good blood pressures and getting rid of fluid. The doctors were unable to find anything conclusive in the cath lab last night so in an effort to exhaust all resources they did a CT scan this morning. The surgeon was at a loss as to what was causing the hypotension and all of the tests they performed were inconclusive. In an attempt to find out the source of the issue, Dr. Hawkins operated on Jack this evening. He started about 5:00 p.m. and met with us around 7:00 p.m. He told us that his heart is pumping very well, that the corrections made during the initial surgery are functioning as expected, and that by all measures he should not be having the problems that he is experiencing. In the initial operation he used a substance called "gel foam" to stop the bleeding around the vessels. Sometimes, because of the amount that is used, the foam puts strain on the heart and doesn't allow it to be as efficient as possible. Dr. Hawkins suspected that this may be the culprit, however, after removal of the "gel foam" he expected to see a fairly rapid increase in the blood pressure which unfortunately didn't occur. The team of doctors remain at a loss as to what is behind the lack of progress. We continue to be hopeful, and are careful to report that in the hours following tonights operation, Jack has better blood pressure and seems to be responding to the care given him. Once again, our hearts are full of thanks to all of you who continue to keep Baby Jack in your prayers.

Post Op Day 7

2007-08-30T21:13:00.001-06:00

Today has been a hard day for little Jack. After a few days of strong improvement Jack's blood pressure began to decrease without responding to the medications. The doctors have been trying to figure out all day how to correct the problems he was having, but thus far to no avail. The blood pressure in his lungs was high enough for the doctors to be concerned. They decided to take him to the Cath lab this evening, inject dye into his heart and see what the problem was. Through the procedure tonight they hopefully will be able to decide if the problem is with his anatomy and would need another operation, or if it is something that can be corrected with medication. If need be they will operate in the morning. We will keep you updated.

Post Surgery

2007-08-30T13:32:00.000-06:00

We were finally able to see Jack about 4:30 p.m. We were somewhat aware of what to expect, but it was still heart wrenching to see our little guy hooked up to everything imaginable. When they operate on little babies (Jack was 5 days old) they usually don't close their chests for a few days after the surgery. By leaving it open they can get back into him easier if need be and they can let the swelling go down. He was really swollen and puffy when he came out of surgery because of all the fluid they gave him to help his blood pressure. He had a big dressing over the incision that runs from the notch in his neck down to the zyphoid process. He had wires going into each of the chambers of his heart to monitor pressures and give medicines. An external pace maker was in place in case they needed to help his heart beat. He also had three chest tubes and one tube in his gut to drain the fluid. The ventilator was also breathing for Jack so he could rest from his big day. We were so grateful that we had made it to this point and felt like we had truly witnessed a miracle. Words cannot express how thankful we are to the countless friends and family that have exercised their faith in his behalf. I read a scripture that sums up the past 10 days, D&C 123:17. Thank you to all those that have done all that was in their power to do.

Surgery August 23, 2007

2007-08-30T12:24:00.000-06:00

Prior to his operation we felt it important to give Jack a name and a blessing. He was blessed Jack Bitner Nelson. This was an unforgettable experience which I know not only gave Jack strength but helped us to realize that his life would now be in the Lord's hands.
Jack was scheduled for surgery on Thursday 8/23. The surgeon expected it to last 6 or 7 hours. This proved to be the longest day of our lives. We arrived at the hospital early that morning so we could spend some time with him before things got started at 7:30 a.m. The hardest moment came when we had to say goodbye, Jack went one way and we went the other. We waited in the OR waiting room trying to stay positive and received updates about every hour. It was so nice to break up the anxiety knowing each time we were a little bit closer to the end and that things continued to go well. At about 2:30 we got a call from the OR telling us that Jack was off of the heart lung bypass machine and that his heart had good squeeze and was pumping well. The nurse practitioner told us the surgeon would be out in about 5 minutes to talk to us. In the mean time they were busy warming Jack's body back up and preparing to move him back to the Pediatric ICU(where all of the heart patients are treated). Another 45 minutes went by and the Dr. Hawkins came to tell us how things had gone.
Dr. Hawkins first words to us were, "Well, your son wore me out." We could tell that he was totally drained. We cannot comprehend what skill and expertise he must have to do all that was done on a heart that is the size of a walnut. It is incredible. He said that everything went well, that he was able to correct the coarch of the aorta with a donor vessel, switch the arteries and patch the holes. He used a piece of "dachron" to patch the hole between the ventricles. One of the consequences of working so close to the septum that separate the right and left side of the heart can often be the disruption of the electrical impulses that the heart sends to the different chambers to squeeze at the right time. After surgery Jack heart was not beating in "sinus rhythm", but it was beating which was what we were mostly worried about. We would just have to wait and see whether or not the connections had been disrupted and be patient as he recovered.

Transposition of the Great Arteries

2007-08-30T11:22:00.001-06:00

Now I am not an expert but I will try and explain how I understand what was wrong with Jack's heart. Jack's pulmonary artery was connected to the left ventricle and his aorta was connected to the right ventricle. In Jack's body the blood was being pumped from the lungs into the left ventricle then back to the lungs because of the switched artery. The right ventricle received oxygenated blood from the body and pumped through the aorta and back out to the body again. There was basically two separate systems running in his heart. This inhibited the oxygenated blood from the lungs and the oxygenated blood from the body from mixing. This will probably explain it better.
http://www.americanheart.org/presenter.jhtml?identifier=11074
Normally the PDA closes at birth allowing the new babies lungs to oxygenate their own blood, Jack was given a medicine called prostiglandins that allowed this hole to remain open so some of the blood could mix. Mixing of the blood was also facilitated by a hole between the right and left ventricle (VSD) and through a hole between his two atria (ASD) that allowed for the blood to mix as well. Because of the holes in his heart he avoided being ventilated prior to surgery. This meant great things for us as we were able to hold and love him before the surgery knowing we wouldn't have this chance until after he recovered from his surgery. Through the series of echo cardiograms that the doctors did to understand his heart as well as they could they discovered that the bend in his aorta caused it to be too narrow for blood to consistently pass through. It was shaped similar to a candy cane and Dr. Hawkins had the job of widening the passage. Obviously this complicated the surgery even more, however, Dr. Hawkins is an aggressive surgeon and opted to do the switch of the aorta and pulmonary artery, correct the arch in the aorta, patch the hole between the ventricles and the atria, and close the pda in one operation. We were told that with these complications the operation could easily be drawn out over 3 or 4 different surgeries but that Dr. Hawkins wanted to go in and correct everything and be done. Thank goodness for a competent and confident surgeon who specializes in these procedures and has become one of the best in the country. At every turn through this experience we have felt the Lord's hand in Jack's life and his sweet spirit comforting our heavy hearts.

Jack's First Few Days

2007-08-30T10:52:00.000-06:00

The next few days were the hardest that our little family had ever gone through. After a thorough echo cardiogram on Monday, they decided to attempt to fix his heart on Thursday. The cardiologist said, "I will explain to the surgeons what needs to be done and they will either agree to do it all in one surgery or they will laugh in my face."
Dr. Hawkins, who is Chief of Pediatric and Adult Cardiothoracic Surgery for Primary Children's Medical Center and the University Health Care, prepared to perform the operation. It was so great to be able to hold him for a few days before the big day. These were some of the longest days of our lives waiting in anticipation for the surgery. Dr. Hawkins visited with us about the operation and what he was going to do to repair his heart. Normally the success rate of the "arterial switch" operation is 95%, Dr. Hawkins helped us understand that with the complications of little Jack's heart it was more like a 70-80% chance that he would make it through the surgery. We obviously were very anxious, however, we felt confident that everything would turn out okay.

Happy Birthday

2007-08-29T20:29:00.000-06:00

We knew it would take a life changing experience to make us become a 'blog' family...
Saturday August 18,2007 we welcomed Baby boy Nelson into our family. Mom did exceptional and things went pretty much as planned. At that point he was without a name but came in at a whopping 5 pounds 6 ounces and 20 inches long. The feeling of love that is seared upon your heart the moment that your eyes lay hold upon the little guy is indescribable. We finally believed everything that we had heard, love truly took on a new meaning that evening. We were able to bathe our new little guy later that night and Sarah got a chance to feed him. Early Sunday morning Jack (as he would soon be called) started to look a little dusky and his blood sugar was low facilitating a trip to the NICU to check things out. Jack had swallowed a lot of fluid at birth and needed a lot of suction to get it out of his lungs. In order to assure he didn't aspirate any fluid into his lungs they took an X-ray and saw clear lungs but also saw an enlarged heart. The doctor then heard a murmur and so they ordered an echo cardiogram to take a look at his heart.
After many hours of waiting, the neonatologist came to our room around 5 pm and told us our son had a serious congenital heart defect that would necessitate a trip to Primary Children's Hospital and eventually a major open heart surgery. The next few hours were a blur. Sarah was quickly discharged from the hospital only to run up the hill to meet Jack in the PICU. A flood of nurses and doctors explained exactly what was wrong with his heart. The plumbing to his heart was messed up, more particularly the oxygenated blood was going in a circle from his heart to his lungs but not getting to his body (Transposition of the great arteries). He also had a small aortic arch (Coarch) and a hole in the bottom of his heart between the two ventricles (Ventricular Septal Defect) plus another hole between the two atria(Atrial Septal Defect). It seemed the list just kept getting longer and longer and our hopes of a healthy newborn diminished quickly. That night, both mom and baby had a wonderful blessing from Grandpa which gave Sarah a gift of peace and a charge not to worry. As comforting as it was the worry and heart ache were inevitable.