Monday's Memory 2

(Joshua - 1 week old)

There is always waiting involved when dealing with medical stuff. I HATE THE WAITING!!! The waiting is the hardest part. The day of the appointment with the cardiologist finally came. Mike, Joshua and I went to the Children’s Heart Clinic together. Tests were run…they did an EKG, a x-ray, and an echocardiogram. We were left sitting in a room for probably 10 minutes or so and then the cardiologist came in with a model of a heart. My heart sank. We knew that couldn’t be good news. He explained that Joshua had Mitral Valve Stenosis. The mitral valve is on the left side of the heart between the left atrium and left ventricle. Stenosis meaning abnormal narrowing. (As a mother, a large part of you feels such relief at the news that something is wrong with your child because you knew it all along…not that you want anything to be wrong with them but because there was something wrong, now they can get help. It’s hard to explain. Answers are always good!) Surgery would need to be done to give him a new valve. We would start him on some meds to help with the heart failure symptoms and run a 24-hour test called a holter monitor to watch his heart function especially during an episode. They hooked him all up and we went home. We were to journal his activity while on the monitor. We delivered it to the office after the 24 hours was over and waited again for results. We dropped it off on Thursday I believe and Friday evening we had a message to call them. The cardiologist said we are seeing something on the test that concerns us; we need you to bring Joshua to Children’s Hospital tomorrow to be admitted for more testing. Saturday, we got Joshua a priesthood blessing and then arrived at children’s hospital. We were met by the cardiologist who began to describe what they saw and what they needed to do. They were concerned that we might be dealing with something like cardiomyopathy , where the actual heart muscle is weakened and can’t pump properly. I still have the paper towel that she drew pictures on to help explain what they were seeing on the holter monitor test.



We did nothing but wait that weekend. He was hooked up to monitors. His oxygen level was dropping quite low every time he nursed so on Monday, the first test they did was a swallow test and confirmed that he was aspirating every time he ate. Tuesday they put him to sleep and took him in for a catheterization. They confirmed the mitral valve stenosis and found that his heart muscle function was good. There were no other problems. They decided he was in bad shape and would do the surgery the following day so they kept him asleep and intibated. When they talked to us about surgery the only thing I remember them saying is “if he goes into one of these episodes that he has been having during the surgery, we will loose him. There will be nothing we can do.” They said it 4 or 5 times like we weren’t understanding how serious this was. We were at COMPLETE peace. The calm we were blessed with through the entire ordeal is indescribable with my own words. Remember, we've only been married 3 years, just moved far away from all of our family, in a place we don't know with people we don't know. It is exactly my favorite scripture in Mosiah 24 “And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage.” It’s only been in the last few years that I understood the second part to that; “and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions. And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.

I love that scripture and try to remember frequently that because he has done this for me; because he visits us in our afflictions; I need to stand as a witness of him, my Savior Jesus Christ AND submit cheerfully and with patience to all the will of the Lord. That can be a hard thing to do…but we try…because we need those blessings. It is impossible to get through it without his help and strength.


(Joshua - 8 months old; 1 month before surgery)

Yummy Noodles!

Mike was nice and thought to video tape this for me while I was at the Julie B. Beck fireside on Saturday. This is Isaac trying to eat Ramen noodles.

Monday's Memory 1

I'm going to be corny and begin a Monday's Memory spot. Most often, and when time allows, I will post something from our medical journey. It will be long and incredibly boring to most of you but at least I will have it down for my children. I love the word REMEMBER! While I'm sure there are many little miracles that I have already forgotten, I love to reflect on our blessings and lessons learned.

I realized earlier this year when we were having an especially difficult time with Matthew (behavior issues) that we hadn’t shared a lot of his miracles with him and I wanted him to understand how very blessed he was and what a miracle his life was…he shouldn’t be so grumpy! Matthew’s story could not have happened had it not been for Joshua and our move to Minnesota. So I write about Joshua today.

Joshua was born in Colorado. Our first baby…a son! It was a great spring day. We watch video of daddy getting to hold him for the first time…grinning from ear to ear. Grandparents, aunts, uncles, and cousins outside the door waiting to see him and tears flowing when they finally do. He seems perfect… until the following day. The nurses say he is breathing kind of fast so they put him in the Level 2 nursery – that’s what they called it. They put him on oxygen and run a bunch of tests. We can’t find anything wrong they say…it is probably just the high altitude…some babies struggle with that here in Colorado.

Joshua was on oxygen for 1 month and then was finally weaned off. He appeared to be ok. He grew slowly and was VERY colicky. He wouldn’t feed for very long and wouldn’t sleep through the night. (I’m a first time mother…I don’t really know what he should be doing…I see a lot of this in hindsight). Doctors assured me that he was fine. At 6 months of age he started “passing out”. I don’t know the medical term for what was happening to him…passing out is just the only way I can describe it. The Doctor told me it was breath holding spells and not to worry about it. He ran out of the room and brought back a sheet of paper to read about it and we were on our way.

The “passing out” began to come more frequently – at first; maybe once every two weeks, and then once a week and then every few days until every day it was happening. They scared me to death! During all of this we were moving to Minnesota. My gut said this Doctor is wrong, my baby is NOT ok but I just kept feeling like I needed to just hold on…we’ll get in to see a new Doctor as soon as we can after the move (which by the way is a miracle in and of itself which I will share later).

I wanted to be able to explain the episodes better to the new Doctor so I watched carefully during them. I could tell one was coming on one day and placed my hand on Joshua's chest while he "passed out". I felt nothing! No heartbeat! I don't know if it was just very faint or if his heart was stopping...I don't think I WANT to know.

At about 8 ½ months of age we finally saw a Dr. David Griffin who I will love forever! He said… "babies don’t just pass out for no reason". He did an EKG which was abnormal - SURPRISE. He called and got us set up with a cardiologist a few days later.

To be continued…

Miracle 1: Becoming parents.
Miracle 2: Joshua lived through these "passing out" spells...many of them.
Miracle 3: Getting to Minnesota.
Miracle 4: Great Doctors and medicine!

School Days

Ahhh, the first day of school.


So much excitement & anxiety. What a day! We actually got through the first day of school this year with no broken legs, no tears, and nobody being sent home on the wrong bus! Joshua started 6th grade, Matthew started 3rd grade and Noah started 1st grade. They were nervous but all did great! Isaac joined in the excitement and had to wear his backpack to the bus. He did well without his brothers here to entertain him...he's not going to let me get much done.

It is hard for me to send my babies out into the world...hoping they will remember everything we've tried to teach them and to have the courage to choose the right. I enjoy having them around and will miss days like these...



...where they just get to be kids. This summer went WAY TOO FAST!

Good News!

We love good news! The cardiologist says Matthew looks fantastic! We will do a Holter monitor in the spring to check on that junctional rhythm he's got going on...hopefully that pacemaker is years away.

Joshua does have increased blockage in his valve. He was at 7 a year ago, 10 today and he said 13 is when they need to look at doing surgery. (Don't ask me what 7, 10 & 13 mean...I didn't catch that part.) The Doctor was worried that we would need to do surgery next summer and not be able to wait for him to grow a little more but then Joshua did the treadmill test and passed with flying colors so he's not going to see him again until next August. We are hoping we can hold off until the following summer (2011) and not have to do it during school...we will see!

My fear is that the boys will end up needing their surgeries around the same time again. Talk about stress! Actually, that might be really nice to get it all over with at once. BUT, we are not going to worry about that now...we will take the good news and do our best to keep the boys healthy this winter. YAY for good news!!!

Speaking too soon!

I frequently feel that I speak too soon. I HAD to put on here that Isaac was completely healthy with all my pride that I had one "normal" son. Today, we confirmed that Isaac is allergic to peanuts. The blood test on Tuesday showed a class 3 allergy but today's scratch test showed that the blood test was an UNDER estimate. He has a severe peanut allergy. This will be so fun. Easy for Matthew because he already can't eat any fat. Me...not so easy (please don't make me get rid of my chocolate!). I am very afraid to say it but will anyway..."Can we complicate things anymore?!?" Such is life. I realize that a peanut allergy is not that big a deal and that it is very common. We are already used to lack of convenience shall we say. Tomorrow it will seem like nothing at all. We'll get into our habits and way of life and that will be it. Today though...I want to complain. I'm sure it will be an easy adjustment. Just praying that cardiology appointments go well this afternoon. Good news...please!?!

Filling every last minute of Summer

Today we took care of two well check appointments...Isaac & Joshua. Quick view...Isaac was tall (90th percentile), large tonsils (worry about that in the future), flu shot (not even a whimper), blood test for food allergies (again, not even a whimper). Josh was short, skinny, x-ray of spine for some pain he's been having, x-ray of hand for bone growth, two shots. Again, waiting for results (hate the waiting) but both are doing great! The appointments were several hours apart... (They can never get them in at the same time!) so we packed a lunch and spent some time at the zoo. It was a beautiful day!

This is how it goes...Josh, Noah & Isaac always stay together...

Matthew always goes off on his own.


I have to find him and make him join the others so I can get some pictures.