Monday's Memory 10

I'm not going to write a memory so much today...it is Thanksgiving week. We have spent many holidays in the hospital; Thanksgiving, Christmas, Easter, several 4th of Julys, and several birthdays. While many blessings and miracles occurred during these times, I don't want to remember any of that right now. My sister and family are here and nobody is in the hospital (maybe I shouldn't say that yet or it might happen!) SO we are going to focus on making new, happy, & fun memories this week.

Things are moving along...we are becoming adjusted to the new changes in our lives. Even if there was time to, I couldn't stop and think about it too much or I would be a lump on the couch. We so appreciate the prayers on our behalf...we can feel them working. We are very blessed. I was given the opportunity to speak at Relief Society meeting this week and the topic was How my testimony has been a blessing to me. That was a wonderful thing to reflect on. I am truly blessed!

On a side note...we did finish the bathroom in time for guests...the pictures aren't that great because of the small space so they don't do it justice. I must say, we did a great job for our first bathroom remodel! I am SOOOOO glad that it is done...FINALLY!

IT'S UNBELIEVABLE!

Our little 2 year old Isaac has diabetes. Isaac has been drinking and peeing a ton so naturally we were worried and took him in today to be tested and sure enough...we were with an endocrinologist an hour later giving him injections and finger pokes. I don't know what else to say about that...still processing.

We also got test results back on Matthew that show he has Sjogren's Syndrome...another autoimmune disorder where the body is attaking itself. Mostly includes dry eyes, dry mouth, and joint pain but can also include issues with the entire body like neurological problems, brain fog, dry nose, dry skin, stomoch upset, swallowing/heartburn/reflux issues, lung disease, etc.

Mike and I are totally healthy...who knew we would pass on all of this crud to our kids!

Monday's Memory 9

Night before surgery

On Matthew’s 8th day of life he was taken into the operating room to undergo the 1st of 3 planned heart surgeries. The 1st stage is called the Norwood procedure. Because the left ventricle cannot pump blood adequately to the body, the Norwood procedure allows the right ventricle to pump blood to both the lungs and the body. The procedure involves reconstructing the aortic arch (the main blood vessel supplying blood to the body) and inserting a tube that connects the aorta to the pulmonary artery (the blood vessel which supplies blood to the lungs). This operation needs to be done soon after the diagnosis is made. The baby will still look blue (cyanotic), after this first-stage operation. (Description from the Mayo Clinic.)

We’ve learned that before any surgery or procedure the Doctors give you a little list of things that can go wrong. Sometimes they will point out one odd thing that very rarely happens and for some reason, Matthew will do it. For this first surgery they talked to us about Tachycardia. I could be wrong but I remember him saying something like this. “Now there is a rare complication with this surgery where they go into what’s called a junctional ectopic tachycardia. The heart will beat really fast and if it goes above a certain number, the body can only sustain it for so long.”

I can’t remember a lot of the little details of that day. I don’t remember saying goodbye to my baby…probably because I’ve blocked it out…it was too painful. The risk of death is highest with the first stage of surgery. I was on Percocet too…only 8 days out from my own surgery. I don’t remember how long any of Matthew’s surgeries were. I do know that most of the time we are the first ones in the waiting room and the last ones to leave during the day. They are long and torturous...such an emotional rollercoaster. I think we’ve been in there for up to 9 hours. It is very interesting to watch other families and how they deal with whatever it is they are going through. You feel for each one as they enter the waiting room after just leaving their baby with tears in their eyes. It is heart wrenching.

You wait for the phone to ring, hoping it is your team calling to update you on your baby. I read in Matthew’s hospital records that for this procedure they had to cool his body to 67 degrees F, the right pulmonary artery was punctured accidentally and Matthew struggled with oxygen saturations and pressures after coming off bypass during the re-warming period but then stabilized. Of course, they don’t tell you any of this at the time.

We were brought back to the bay in the PICU after surgery where they had Matthew all set up. It is always difficult to see your baby’s new little body cut and scarred for life. They lay there just in their little diaper and you want nothing more than to bundle them up in a soft blanket and just hold them. I remembered and found comfort in the words of a blessing my brother gave to his little daughter Caitlin when she was admitted for pneumonia at 6 months of age. I hoped Matthew didn’t have to feel the pain.

The whole day I felt ok but just not very much at ease. This has happened on several surgery days and when it does, Matthew always seems to have something up his sleeve. He likes to pull stunts and scare us all to death.

After this first surgery, all of the staff had made Matthew comfortable and then left. Just his nurse remained. We watched all of the monitors and talked about surgery and the drugs they were giving him. We saw his heart rate start to rise…and rise…and rise. The nurse called the cardiologist. He came around that corner so fast…I feel like he was there as soon as she hung up the phone. I love our cardiologist mostly because his face is so easy to read. I always know what is going on and he doesn’t have to say a word. I knew this was serious. His heart rate was up past 240 beats per minute. Pretty soon, the surgeon and two other nurses were there, buzzing around him. After about 8-10 minutes they all just were still and we all stood there looking at that monitor. The rate was not coming down. The cardiologist said, “We’ve given him everything that we can.” This is like one of those out of body experiences. I felt like I was watching all of us from a distance. I was tense but calm and at peace at the same time...I can’t explain it. You’re praying really, really hard in your mind that it will resolve.

Suddenly, a nurse ran over to the freezer behind the counter and grabbed some ice bags. She ran over to Matthew’s bed and shoved them under his back right under the heart. I couldn’t help but think about how cold and uncomfortable Matthew must have been. She explained that she had just read a medical article last night that something like this was happening and they cooled the body to make the heart slow. IT WORKED! We watched the rate drop and drop until it eventually went back to normal. Coincidence…I think not!



Night after 1st surgery

The rest of recovery went fairly well. Matthew did have severe edema and so was intubated for 11 days post operatively. They began nasal feedings at that time. After moving out of the PICU up to the floor we began the difficult task of bottle feeding. Because he had never sucked except for on a pacifier the first 2 days of life, this was a hard thing to learn. It took time for Matthew to be able to take in enough milk to go home.

Matthew was in the hospital for 1 month. This long month was the only time I have ever left my child alone at the hospital. It was very difficult for me to do that. When you are on the floor you tend to be left alone a lot so this made me nervous. I had to heal myself though. My favorite memory was coming to visit one day and as I approached Matthew’s room I saw a LARGE man…a hospital volunteer sitting in the rocking chair, little (barely 6 pounds), tiny, Matthew snuggled up on his chest. It was such a sweet and comforting site…I knew he was being loved and taken care of. I appreciated the good friends that took large chunks out of their day to drive me to the hospital to see my baby.

Of course, we were absolutely thrilled to be able to bring Matthew home on August 11th. Many tiny miracles occurred during this month that I will not go into. I do want to thank all of my family and friends that reached out and helped and supported us, and all of the prayers offered.

As I typed a Monday’s memory last month I could not remember which family members had come to help that time. I wondered why that was because one of the most difficult parts of these heart surgeries for me is leaving other little ones behind at home. I stress about their welfare and whether they are getting their medications and whatever else. I realized that when family comes, I don’t have to worry. I have someone that I can trust completely and I know they are in good hands. I can focus on the child in the hospital and that has been an enormous blessing for me. Thank you! Thank you!


This is a horrible picture of us but this is the only picture we have coming home with Matthew.

Monday's Memory and MORE 8

Matthew’s Birth Day

The day of Matthew’s birth was here. It’s supposed to be one of the most exciting days in your lifetime. This just wasn’t. I think we drove to the hospital in silence. I had Mike’s mom there to take care of Joshua, whom I had never left before and my mom, sister Jeni, and brother Joey at the hospital with me for moral support and priesthood just in case.

I had Matthew at a hospital that is connected to Children’s Hospital by an underground tunnel. My first two babies were in a breech position and so I had to have c-sections. I feel this was a blessing for them so the birth wouldn’t be too stressful on them and they were scheduled so medical help was available and ready. They prepped me for surgery and took me in the operating room. People were hustling and bustling around me getting everything ready. There was a NICU team off to the side with an incubator and other supplies they were setting up.

Besides him not living, my next biggest fear about Matthew’s birth was that I was not going to be able to see him. I asked everyone about the birth; my doctor, the nurse, the anesthesiologist, the staff when I took the tour of the hospital, everyone; whether I would be able to see him… just real quick… before they rushed him away. They assured me I would get a quick peek of my baby.

They began the surgery. I could feel a LOT! It was VERY uncomfortable but I was very focused on my baby…just waiting to hear a cry. The atmosphere was tense…everyone was very quiet. Finally I hear my doctor say “here he comes”. And then she said, “What are you doing baby? He’s pooping everywhere!” And then she hands the baby to the NICU team and began to fix me up. THEY DIDN’T SHOW HIM TO ME! I could hear him cry which was a little comforting. But I didn’t get to see him. It was such a disappointment!

It seemed like forever I lay there with my eyes glued on a member of the NICU team’s butt! That’s all I could see. Just hoping and praying that she would move just a little bit so I could get a glimpse of my baby. They were busy doing something to him and had quieted him so I didn’t even know if he was still ok. Nobody was saying a word. I didn’t want to ask because I knew it was more important to let them take care of him. They wouldn’t let Mike over there either…they said they had a sterile area set up and he wasn’t allowed past a certain point until they were done doing whatever it was they were doing. I know eventually they got some IV lines set up in the umbilical cord to start meds immediately. Finally, someone said, the baby is doing ok. That was it! They finished with me before they finished with Matthew so they wheeled me out to recovery.

It was all I could do to stay together and not scream that whole time. I wanted to burst. There was WAY too much emotion in me. My family could see it when I came out. They were right outside the doors and my sister Jeni looked at me and said “Are you ok?” I could feel it in my face…I needed to explode BUT…I held it together. I knew if I said anything, I would loose it so I don’t think I even answered her.

Finally, the team got him stable enough to move him through the tunnel to the NICU at Children’s. They had to pass my room so I got to see my baby, sort of. I had just been sliced open and so could not sit up to see in the incubator-it was much taller than my bed, but I was able to reach through the little circle of the incubator and touch his hand. Then they left.

This is how I saw my baby for the first time.

After my hour of recovery was up the nurse said she was going to take me down to see Matthew. She didn’t want to give me any morphine so I would be awake and alert to actually see him. It’s so embarrassing to be wheeled in a bed down through that long tunnel and then through Children’s hospital with people everywhere but I did want to see my baby. By the time we got to him though I was in so much pain. I really needed that morphine and didn’t care about the baby anymore. I saw he was alive and happily sucking on a pacifier, content in his bed. His nurse was trying to tell me all about what they would be doing with him in the next week but I couldn’t hear her. I needed drugs. I asked to go back to my room. By then I thought I was going to die. It took 4 doses of stuff – I don’t even know what they were giving me - to take the edge off the pain and then I crashed. I slept for 6 hours straight. When I woke up I felt great and was ready to get on with whatever was going to come.

Our Cardiologist in the blue shirt. Matthew's nurse on the right.



They have a cool set up in the hospital. There is a camera at each infant’s bedside in the NICU so that the Moms can see their baby whenever they want to from their room. You just call down to their nurse and they will turn it on for like an hour at a time if they are not doing rounds with the Doc’s or procedures on the babies. That was nice because it is a little bit of a trek through the tunnel.

Our first family photo

One of the hardest things I’ve had to do in my life came the day I was discharged and my baby was not. It was SO hard to leave him behind. That really stunk!!! The worst was when I got home and Joshua, who I had never been away from before this hospital stay, woke up from his nap, saw me and started crying uncontrollably. He wanted NOTHING to do with me for a good hour. Mike took him outside to calm him down and I sat on the couch all alone and cried. I couldn’t help either one of my babies. That was the worst feeling.

At the time of my discharge, Matthew had been having a lot of apnea spells because of the meds they were needing to use, prostaglandin, to keep the hole open in his heart so they had needed to intubate him and he was pretty sedated so we couldn’t hold him. The plan was to do his first surgery at 1 week of age. This would allow time for the pulmonary vascular resistance to fall. Why that needed to happen…I can’t say, but that’s why they waited the week. They kept him going on IV fluids only.


My discharge day...saying goodbye to my baby.

My focus had to be getting myself healed quickly. I visited once a day for just a short time. The walk from the parking garage to his bed was longer than my stay. All of you who have had surgery know what I’m talking about. Slow and steady. Everyone would offer me a wheelchair but I wanted to keep moving to help the healing along so I walked.

I wrote the above last night and was going to end there. That day was not fun in the least. It was very, very, very hard and I never want to do it again but Mike said I had to end with something profound and spiritual like I usually try to do. I had no idea what to end with until now.

Today I am not having a good day. I came from a meeting at the school this morning where they spent an hour telling me all of the “problems” they see with Matthew and then told me that they are not going to do a single thing to help him. I am so frustrated and feel so helpless right now. I don’t know how to help Matthew. Why does a child have to COMPLETELY fail before someone will step in and do something? I am grateful to be a mother though. Heavenly Father, with his crazy sense of humor, saw fit to give me these children…I of course, have learned a lot! One day during the pregnancy when I was murmuring and having a particularly rough day, worrying about what was to come and letting fear take hold…I got the very clear impression that I had promised Matthew that I would bring him here and I would help him through this. I am going to keep my promise. I’m not the best mother…I have a lot I need to fix and change but I do the best I can and hope that one day Matthew can see that. I don’t know what we are going to do to get through this yet but I will find a way with help from above…of course!

They just keep on coming!

So, the last few weeks we've been busy...getting more diagnosis. So much fun!

I've been dealing with Salivary Stones...I had never heard of it either. I guess they are like kidney stones or gall stones but in the salivary glands. So bizarre! Got an infection in the lymph node in my neck because of stuff backing up. Been on Augmentin for 5 weeks. Lymph node still enlarged. Waiting, waiting, waiting. May have to see the ENT for surgery. Like there is time for that!

Joshua's issue is a little more private so will not discuss here. Waiting to have ultrasound done soon.

Matthew, Matthew, Matthew! It was confirmed last week that he does have Hoshimoto's Thyroiditis. Basically, your immune system attacks your thyroid...eventually he will become Hypothyroid - where your thyroid doesn't make enough - meaning more meds.

We've known that he has a growth hormone deficiency; the question is...do we help him grow or will that strain his heart too much. I think we've decided that we will do the replacement but it has to be done soooo carefully. At his current rate of growth, he will not even reach 5 feet; so, you can see our dilemma.

He was also RE-diagnosed with asthma yesterday. The pulmonologist always believed he had asthma but after getting the immune deficiency diagnosis and then getting stents in his pulmonary arteries and helping them grow and then finding the Plastic Bronchitis...we thought he was all fixed up and maybe didn't have it. But, it's been 6 months off of asthma meds now and there was quite a difference on his breathing test yesterday between the before and after albuterol. He has been complaining that it hurts to breath after gym class. He also says that his heart feels funny so I thought it was his junctional rhythm heart stuff - the reason he needs a pacemaker. It didn't even occur to me that it could be asthma still.

So...I'm completely overwhelmed - I actually already was...I'm going into my SURVIVAL mode again where I don't feel anything - just take care of business! That's 19 regularly used meds for Matthew with another 4 to be used as needed and more to come. Each new thing takes time to implement additions to the routine. Sorry to be a downer today but sometimes you just have to grieve. We're looking for brighter days! It won't be today because I have to go replace Noah's glasses...grrr!

Monday's Memory 7

Today I begin to piece together memories from Matthew’s life. There are a lot of years that are a blur and so memories may be pretty sporatic and out of place but I’ll do my best. This first memory is very clear though…the pregnancy.

When we decided we were ready for a second child we kept saying we won’t have another heart defect and even if we do we can handle it. The doctors had told us up to this point that they didn't know if heart defects were genetic and it is unusual to get more than one in a family. Our experience with Joshua was pretty easy actually. Man, were we wrong!

I had the usual ultrasound at 20 weeks. I can still hear the technician’s voice saying, “Four chamber heart, looks good!” Big sigh of relief. But, when I went back to my OB for my next check up he said, let’s do the level 2 ultrasound, just to be sure. I am grateful he thought to have us checked out better. (We could have taken him home after birth and we SOOO under-react to everything that he would have died.)

In those next couple of weeks I was very weepy and could not figure out what was wrong. I remember sitting at a Relief Society Saturday meeting and just worrying but didn’t really know about what. I think I was being prepared for what was to come.

At this point, I wasn’t so sure that everything was going to be all right. Mike still was though and so I went to the ultrasound alone. SO DUMB!!! (Don’t ever do that!) The technician began the exam and very quickly, I knew… She said “Rebecca, there is something wrong with the heart. I’m going to finish taking some pictures and then I’ll have the doctor come and talk to you.” I was devastated. I waited in silence for what seemed like forever staring at that stupid screen trying to see what could be wrong. She finished and then the Perinatologist came in. She looked at the pictures and took a few more and then had me get dressed and met me in another room. I knew this couldn’t be good.

Her explanation went something like this… Your baby has Hypolplastic Left Heart Syndrome. It’s too late for an abortion so these are your options. You can take your baby home and watch him die. We can try a heart transplant…which…finding an infant healthy heart in time is near impossible. Or, we can do a series of 3 surgeries to re-route the blood flow. He has an 80% chance of living. Do you have any questions? I was so overwhelmed, I couldn’t think of any questions…except, Are you crazy? My care was switched to the Perinatologist’s office and out the door I went.

The second I stepped out that door my eyes filled with tears and I bawled all the way back…a 30 minute drive. I couldn’t hardly see where I was driving. I had to pick up Joshua at a friend’s house with swollen eyes and all and then headed back home and cried some more. The worst part was I had to be the one to tell Mike. That was so hard to do. (Mike has learned to be ready when I call after a doctor’s appointment…I’ve been the bearer of bad news MANY times since…It doesn’t get any easier either!)

The next few months I had to go in weekly for stress tests and more ultrasounds. It was always fun to watch the baby growing and moving…I could see he was strong. I really struggled those few months though. I was trying to trust God…thought I was trusting God…but just could not feel that peace I so desperately wanted to feel; that peace that I felt when we had gone through this with Joshua. I REALLY wanted to know if my baby was going to live and for how long. After much pondering, some murmuring, and many tears and prayers…I was finally able to give up my need to control the situation. It was just before we left for the hospital because the only thing I knew for sure was that there was not a single thing that I could do. I HAD to trust Him.


This terrible picture is all I have of me headed to the hospital trying to be brave.

(What in the world is Hypoplastic Left Heart Syndrome? One of the most complex and rare congenital heart conditions is hypoplastic left heart syndrome, a condition in which the left side of the heart is critically underdeveloped.
If your baby is born with hypoplastic left heart syndrome, the left side of the heart can't effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body.
Matthew lives on only two heart chambers, the right atrium and the right ventricle. His official diagnosis was Hypoplastic Left Heart Syndrome with no visible mitral valve or left ventricle, aortic atresia and severe hypoplasia of ascending aorta with mild tricuspid insufficiency.)