Christmas Break!

We've had a wonderful Christmas and break from school. Here is just a little of the fun...














We've gotten a ton of snow to play in!


















Christmas Day!
































Cookie making! Something we don't do very often anymore. With no fat, no peanuts, and low carbs...cookies just don't mix. We have yet to find a TRULY fat free cookie recipe so today we just used Matthew's fat free brownie mix to make cookies. They are flat but good and he is happy...that's all that matters!

We love that our children are home bodies like us. We are looking forward to our family tradition of camping out downstairs, stuffing our faces, games, and wii tournaments for New Year's Eve.

Monday's Memory 14

I wrote up a little story about Noah joining our family last night to post today which chronologically follows last weeks post. But, when I went to look for pictures to go with it I couldn't find anything. I have got to get better organized. If anyone ever wants to do anything for me...scrapbook all of my pictures for me! Just kidding...that just is something I don't really enjoy and am overwhelmed by, but I will do it one day. Anyway, while going through my pictures I found some that go with last weeks memory...I knew they were here. I wanted to post a couple of little thoughts I had instead of moving on to Noah.


First of all, thanks to the notes on my pictures, I see and remember now that we celebrated Easter a week early in preparation for surgery.













These next two pictures are Easter Day.





When I saw these two I remembered something that I didn't post before. When Matthew had his first surgery at one week of age, we brought Joshua down for a visit. For this visit I'm thinking of in particular, Matthew had been having periods of "awake time" but we hadn't seen it yet. It always seemed to happen during the night or some time when we weren't around. So, Joshua entered the ICU, we all could hear his fire engine sounds coming. Matthew opened his eyes to see his brother. It was the sweetest thing!

Another little tid bit I'm remembering about the 2003 surgery is that some group paid for and put together a nice Easter Dinner for families of patients in the hospital. We left Matthew for a little while and went down and ate Easter dinner together. There are good and kind people left in the world!

Here is how we spend our time on the floor.



Doesn't Matthew look great?!

Here we are ready to go home.








And here is Matthew loving his snowman, hanging with Grandpa in the backyard just 10 days after surgery.

Karate Advancement Award Ceremony

The boys have completed another semester of Karate. Matthew and Noah advanced in rank to green belt, purple stripe. Joshua "the Zen Master Zenn", (as he is referred to by his instructor) is a ranking black belt, and so was an Assistant Sensei. They all did great! I had to post the video of Matthew receiving his award...so sweet! I'm not sure what got into him but thrilled to see it!
(You might need to turn your volume way up.)

Monday's Memory 13

Blur, blur, blur… blur, blur… blur, blur. I hope that’s not what you get from this as you read. It is how I feel as I read hospital records trying to jog my memory. This is too much work! What I gather from the next portion of our lives is that Matthew did well for a little while with that temporary shunt. He continued to grow and develop, saturating in the 80’s. He had a cardiac catheterization in January of 2003 at 2 ½ years of age. We were hoping that we would find that his body would be ready for the 3rd and final stage of operations, the Fontan procedure. This cath showed a discontinuity between the left and right pulmonary arteries which was not good, and still, mild stenosis and obstruction of the aorta. There was also elevated pressure in the right lung thanks to the generous flow NOT going into the left artery. It didn’t look like they would be able to do the Fontan but would discuss in conference and let us know the plan in a couple of weeks. More waiting! Have I ever mentioned before that I HATE the waiting?!

At this point, our third child was on the way. Maybe I was overly emotional, BUT…this news was hard to hear. I had a very interesting experience with this…one of those “tender mercies”, I feel. I just had to say…”THIS STINKS!” We had hard news, after hard news and some rough surgeries. I was expecting to be chastised for such a terrible attitude but instead I felt such comfort. He knows this stinks! He doesn’t want us to have to hurt any more than I wanted to see my baby in pain and suffering. This did stink and it was HARD!!! I felt wrapped in His arms and he just let me feel bad for a while…then we sucked it up and got to work.

After extensive discussion with the team, it was concluded to go ahead and do surgery – the recreation of continuity between the left and right pulmonary artery, takedown of the current shunt, and create a fenestrated Fontan.

This is my understanding of these surgeries. The Fontan allows all the blue blood to bypass the heart and go straight to the pulmonary arteries thus allowing the only single working ventrical to pump only oxygenated blood to the body (give it some relief). In the fenestrated Fontan – you are getting a little window where blue blood can leak through to help relieve some of the pressure – an escape valve. You are more BLUE with the Fontan but this is the only way to do the Fontan in a patient with elevated lung pressures like Matthew.

First though, Matthew needed eye surgery. All of our children – (well Isaac hasn’t been diagnosed yet, but we see it) – have strabismus. An eye that crosses or turns in. We had been treating Matthew with glasses and patching for some time but it was not helping. So, he had eye surgery to realign the eye muscle in February of 2003. He was miserable for a day and then fine; the surgery worked. His eye still crosses REALLY bad when his glasses are off but with them on, they are perfect.

In April 2003 (2 yrs, 9 months old) we arrived for Matthew’s 4th heart surgery. The Cardiologist had explained multiple complications and dangers with this surgery. A couple of them could cause us to be in the hospital for 3 months including infection and bleeding that might require more surgery. We also risked the pleural effusion issue again as well as a 5% risk of death and a high possibility of central nervous system injury. Later, down the line…protein-losing enteropathy was a risk. Depressing!

Amazingly, we felt calm for surgery despite the possibilities. I was due exactly 3 months from the day of surgery so I told everyone that Matthew can’t stay in the hospital that long. It just couldn’t happen like that. We received more “tender mercies”. Surgery went very well. Matthew had very minor issues with swelling and junctional rhythm. In the surgeons words…”With these surprisingly good hemodynamics, we are hopeful for an uneventful recovery.” And that it was. We were home in 8 days! We were so excited we took him to the Scout Taco Dinner that night to show him off to our ward family who had taken good care of us and prayed and fasted so hard with us. It was such a miracle! Our smiles were as big as they get. We were/are SO grateful to catch a break and for smooth sailing!

When I read back about all that my children's little bodies have been through and remember all of the emotional agony we have struggled through, I am just in awe and have such gratitude for all of those tender mercies that have pulled us through!

I don't have any pictures of these surgeries so I put a few BEFORE fun memories.

Halloween 2002 - Joshua and Matthew


Joshua and Matthew sledding - February 2003


Joshua's 5th birthday - March 2003

Monday's Memory 12

I mentioned last week that Matthew developed croup at 14 months of age...the beginning of a long adventure that will unfold over many Monday memories. I took him to Urgent Care for respiratory distress. They took their sweet time getting us through. When the nurse finally hooked up the oximeter to check his oxygen saturations I couldn’t see the monitor. She said just a minute and ran out the door. In seconds she comes running back with the doctor and puts it back on then hussels around the room getting nebulizer stuff out. He was saturating at 50! They did a neb treatment and then had me drive him to Children’s Hospital where we were admitted just for the night. Steroids, nebs and a little oxygen did the trick.

At 16 months of age he was a little more blue than we wanted – saturating around 70%. He had another heart catheterization which showed that there was a narrowing of the aorta and also that his pulmonary arteries were very small. He was a little small yet for the Fontan (the 3rd planned stage of surgery) and with the small pulmonary arteries was not a good candidate for it anyway. They decided that they would do surgery to clean him up a little and help him get ready for the Fontan at a later date.

Photo: Joshua age 3 1/2, Matthew age 16 months

We were able to wait until after the holidays this time for surgery. He was 18 months old. He was so close to walking right before surgery. He would take a step, fall, get up, take a step, fall, get up…he worked so hard. It was really sad to see him get so winded through the process but he kept trying. We knew very early on how STUBBORN he can be. This is one area where that is a good thing.

For this surgery…I didn’t feel so good. I just couldn’t help but feel that this was going to be a long one. We went in on the 9th of January. Surgery went ok. They were able to fix up the aorta where it narrowed and they put in a shunt from the superior vena cava to the right pulmonary artery. It initially didn’t work and they had to try again. The surgeon came out from surgery and told us that they were able to do what they needed to do but that the pulmonary artery walls were paper thin and he just wasn’t sure if this would help them or if he would ever be a candidate for the Fontan procedure.

Matthew struggled with a little bit of junctional tachycardia again but not as bad as last time, only 210 heart rate this time. They cooled his body and it slowed the heart. He was fine after the first 24 hours. He was extubated on the 5th day and saturated at 85-90%. At discharge he had a pleural effusion…there was fluid in his chest, which they thought was mild pulmonary over-circulation and thought that it would work itself out. We were discharged on the 16th.

Photo: Matthew after an awake period while intubated in the ICU. I love the foot on the rail.

Photo: Not feeling so hot after surgery.

On the 18th we were admitted again for respiratory distress from the pleural effusion…saturations at 70%. He received extra diuretics & oxygen, which improved the situation. We were discharged on the 23rd.

Photo: Matthew at home; obviously needing to be back in the hospital.

Photo: Feeling better now after diuretics.

By the 28th, he was back in respiratory distress, puffy, not eating, breathing hard, and somewhat blue; re-admitted for the 3rd time, x-ray showing the right side completely full of fluid. They finally decided that it must be a chylothorax…fat leaking into the chest cavity. They told us there were 3 things they would try. First, a chest tube and a no-fat diet. If that didn’t work, then we would put him back in the PICU and pour a chemical down his chest tube that would literally burn the chest cavity wall and scar it. (The hole/holes are so small you can’t see them I guess.) Lastly, they could do surgery and scar his chest cavity by hand by scrubbing it. Knowing Matthew…I knew we would get to surgery. A chest tube was placed in his right side to drain the fluid. We started a no-fat diet. It was somewhat helpful, but not enough.

The second step was called chemical pleurodesis. IT WAS ABSOLUTLY HORRIBLE!!!!!!!! They literally poured a chemical into the chest of my little 18-month-old boy to scar the chest wall and close up any holes there. I watched him for the next hour roll all over his bed crying out in pain. That had to be the worst day of our lives. Oh, it was awful! It’s the only time I’ve ever had to leave the room to compose myself…I couldn’t stand to watch it. I was completely helpless. It was good that he was rolling all over because they needed that fluid to get everywhere in the chest to work.

Photo: After scarrification surgery. He was a thumb sucker and loved that blanket.

We ended up in surgery a couple of days later…that horrid procedure had not worked. They told me that morning after rounds that they would take him into surgery in a couple of hours. I made some calls to let people know. I called Mike and told him to come. I called our Bishop’s house and got the answering machine and just left a message that we were going back in to surgery. I was on the phone with my sister a little while later and she asked if I was going to get him a blessing before he went in. I replied that it was the middle of the day and I didn’t know of anyone that could come but kind of jokingly said that Heavenly Father would send someone if he needed one. As we talked I looked out the window and here comes Bishop Pratt. He said I work just a little ways from here and thought I would come and see if I could help give Matthew a blessing.

How grateful I am for inspired leaders and good friends. Again, a huge testimony builder that God does know us personally and loves us. He gave Matthew a beautiful blessing and we were off to surgery. He came out with a new incision across the side of his rib cage. The one on his front chest was still fresh, only a few weeks old and 3 chest tube holes. He looked awful. But…it worked! We finally went home on February 12th. He stayed on that fat-free diet for about 6 weeks, I think. It took him quite a while to rebuild his strength. He didn't get back to walking until he was 21 months old.


Photos: Matthew's homecoming with cousin Tyler.

Monday's Memory 11

Totally missed last Monday…Everyone but Noah had the stomach flu last week, AND everyone but me had a cold. Good times!!! It was the first time Matthew had to use the vest and nebulizers in 8 months and he got a puffy face, which also has not happened for several years. It’s gone now though and all is well. Isaac got a little break from his insulin shots, only needing 1 a day instead of 4 a day for a week. Now it’s back in full swing but he is so good about it. I’ll say, it’s time for your blood test. Most of the time he’ll climb up on the stool and get everything out and ready. Every once in a while he’ll say, I don’t like it!…but that’s it…he does it anyway! The hard parts are having to wait to eat and watching everyone else have a treat when he can’t. He’s been trying to say “diabetes” and he’ll look through a book and say, “it says NO peanuts!”

On to Monday’s memory! This part of Matthew’s life is where things get confusing for me. Surgeries start to blend together and I just really don’t remember a whole lot. I’ll do my best not to bore you.

Coming home from the hospital with Matthew was very exciting. He thrived and grew and was just a happy baby. Everyone called him smiley. He was so mellow and calm and…well…HAPPY.

The greatest blessing was that Matthew was able to nurse. The cardiologist and nurses told me that he wouldn’t be able to do it. They said nursing is harder than the bottle and it would tire him out. I had pretty much given up the idea but Mike encouraged me to try and he did it…just fine. (Another miracle where we didn’t see all of the blessings from that until several years later. I truly believe that nursing saved his life…again. He had no immune system…we didn’t know it for years…he was the healthiest baby. It wasn’t until after he was weaned that he first got sick at 14 months of age.)

At 3 ½ months of age, Matthew had grown increasingly BLUE. He was living on 65% oxygen saturations. He underwent a cardiac catheterization to determine if he was a candidate for surgery number 2, the Glenn shunt. A portion of the aortic arch had narrowed and so a balloon angioplasty was done. It was determined that Matthew was a candidate for surgery number 2.

The Glenn shunt is actually the beginning half of the Fontan procedure, which is usually surgery number 3. For the Glenn shunt, the superior vena cava is connected to the right pulmonary artery allowing the blood from the top half of the body to bypass the heart and go directly to the lungs. The blood from the lower half of the body still goes through the heart until the Fontan procedure is complete in stage 3. This shunt allows some relief for the single working ventricle - less volume load - and better oxygen saturations.

At 4 months of age, and of course, the day before Thanksgiving, Matthew endured his 2nd heart surgery very well. We felt at great ease the whole time (this surgery only had a 3% mortality risk) and it was very uneventful, thankfully. We were only in the hospital for 8 days. There was some concern that the right pulmonary artery was too small to handle this surgery but it turned out not to be a problem.

This was the last surgery done on my children by the very talented cardiac surgeon Dr. Helseth. He was a large man…his hands were the size of Matthew’s whole body almost. We joked with him about how he could work on such little tiny hearts. He retired soon after this surgery and sadly, died of a heart attack just a year or two later. So bizarre that he spent his life saving all of these little heart babies and children and then his heart fails him in that way. Very sad.

The rest of Matthew’s first year was…NICE! We just enjoyed him. We had little things, like the circumcision and regular baby stuff to take care of but Matthew continued to thrive and grow.