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The other day we had a Heart Mom dinner up in Ogden at a great restaurant called Rickenbackers.
There were about 100 of us that came and I am so happy that I was able to meet and see so many beautiful and strong women in one room.
A wonderful mom put this all together which I'm sure was stressful. It turned out so great!
There were also a few amazing speakers.
One of them had us all stand up and link arms as she spoke.
She described how we are all there for each other and are there to hold the other up if the floor falls out from under us.
Some wonderful pictures were taken throughout the night. Theses ones are some of my favorites...
I am so happy that I can be a part of a group like this although I never wanted to be put into this world. All of the support and love that we provide for each other is indescribable. None of us have been through the exact same experience, but we all know what each other has been through that no one else would ever know.
One year ago today we were finally able to bring our 20 day old baby home for the very first time.
I remember being so excited and sending posts to FaceBook as often as possible to let people know our progress on the journey home.
Our journey to get home started with waiting for the shuttle to come and pick us up from the Ronald McDonald House in LA to take us to the airport. It showed up pretty close to on time and we were on our way!
The driver was kind of crazy, but I guess that's normal for LA drivers? I remember I kept lurching forward to make sure Tanner was ok with every swerve or break the driver did.
We got to the airport and to the gate with no issues at all. Going through the security check with Tanner and the car seat was a bit of an adventure though. I had to take Tanner out of the car seat and carry him with me through the metal detector. It made me worry since his car seat canopy was my shield for him from any germs, so I had him completely covered up with a blanket. It probably looked like I was nursing him.
Only his little feet were sticking out. Some of the security ladies saw them and commented how tiny he was and asked how old he was. I told them he was one day short of being 3 weeks old and we are finally going home after him having open heart surgery. They were so helpful in getting his car seat through the scanner fast so I could get him back in it and shielded again! The only issue is that the guy that put the car seat through put it upside down with the inside of the canopy touching the belt. grrr
Once we got on the plane I just held him with a blanket covering him the entire flight. And he slept the entire time up until we were coming in to land!
Then we drove home and were finally able to relax and snuggle our baby.
Today Tanner had a bit of an accident. I was pumping and he walked out of the room. The next thing I heard was a crash then crying.
I got to where he was and I saw blood all over his mouth and hands. Kind of freaked me out since that didn't help at all to know where he was hurt.
After I got him all cleaned off, this is what I found...
At first it looked pretty deep and he wouldn't let me look in his mouth to see if he got cut in there as well.
I called Kollin since he had my car and luckily he was already almost home from work.
We took him to KidsCare just to see if he needed stitches it not. Better safe than sorry!
We got there and waited for about an hour and were finally seen. The Dr said it didn't need stitches (yay!) and gave us a little thing of antibiotic ointment that was also over the counter.
It was really nice to know that he didn't need stitches, but it was sad that we had to pay the $40 copay just to get a thing of ointment that we could have picked up for just a few bucks. Sheesh.
So happy he is OK and hoping it doesn't scar. We'll see!
This is also my first post from my phone, so we'll see how it turns out!
Tanner had his one year pediatrician appointment last week. He had been sick, so his weight was pretty low. So our Dr. asked us to come back in this week and have him weighed again and get his flu shot since we didn't want to hit him while he was already down.
We went in today for his follow up and he weighed 17 lbs 3 oz last week. 9 days later he weighs 17 lbs 15 oz! That is a gain of 15 oz!
I asked the nurse if that was good and she said it was very good, that the Dr. looks for a gain of an oz a day. So Tanner did great!
Then he got his flu shot and was a total trooper. But now he's got a fever because of it, so I better go!
Every 15 minutes a baby is born with a congenital heart defect . 4,000 of them will not live to celebrate their 1st Birthday . I pray and hope just like every other parent who has a child born with a congenital heart defect that more awareness comes soon . There are no cures only repaires or broken hearts !
Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.
We Need More Awareness for our Babies and families ....
* There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.
* In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
Tanner was born February 3, 2011. As far as we knew prenatally, he was perfectly healthy. After his birth he was still a perfectly healthy baby.
The day we were supposed to be discharged from the hospital and go home with our healthy baby was a day I will never forget.
Our pediatrician came to us in the hospital and told us that he could not feel his femoral pulses (in his legs), and was worried that it might mean something.
So we went to the NICU to have tests done and it confirmed that there was something horribly wrong with our baby's heart.
We were life flighted to Primary Children's Hospital in Salt Lake City, Utah where they performed more tests and found four different issues with his little heart.
1. Coarctation of the Aorta: Part of his aortic arch had a pinch in it that did not allow enough circulation. Later on, we found that it was not just a pinch but a bigger part of the aortic arch was very narrow.
2. and 3. ASD (Atrial Septal Defect) and VSD (Ventricular Septal Defect): Holes in the septum of his heart. The septum is the wall that separates the right side from the left side of the heart. He had a hole in both the upper and lower chambers of the heart which allowed blood mixture between oxygenated and non-oxygenated blood.
4. Subvalvular Stenosis: Ok, this one is hard to explain... it is one of the parts of the wall of his heart where one of the holes are, grew to the side and created a "flap." This flap was now almost blocking the aortic valve and needed to be removed or stitched back so that valve could get circulation and grow.
We ended up being life flighted to the Children's Hospital of Los Angeles to have the surgery done at 7 days old. We were lucky that he has only needed to have one surgery and hopefully no future ones (knock on wood).
This whole terrifying ordeal lasted about 3 weeks (not to mention all the doctor appointments afterward and for the rest of his life). We got home from LA the day before he turned 3 weeks old and we finally had our newborn baby in our own house.
Tanner is now a thriving healthy boy. It almost seems like he never had a problem with his heart at all. I am so happy that he is doing so well, but there is always the elephant in the room in the back of my brain that will always be stressing and wondering if something else will happen as he grows.
Our experience with Tanner's CHD (Congenital Heart Defect/Disorder) was the most petrifying experience of our lives. Another heart mom said this one day and I just love it. She said that she never thought about heart defects or wanted to be a part of the CHD world before our child was born. But now that he is here we would not change our experience for anything.
There is a CHD board on Pinterest that has many more stories of other children and adults that have been affected by CHD. You can read their stories here.
Help spread awareness for CHD week! February 7th - 14th!
We had Tanner's first birthday party and it was a blast!
The day before Kollin and I baked up all the cupcakes and cake for Tanner.
All ready for the party!
I think it all turned out pretty cute.
*BEFORE* the cake
*during* the cake
*AFTER* the cake
Yay for balloons!
It was such a great time to have as many friends and family with us that could make it.
I know that he had no clue what was going on and that these parties for one or two year olds are just for the adults. So I will just say that Tanner us adults had a great time! Tanner we are loving his presents! Tanner we loved seeing everyone today!
Ok, ok. I'm sure that Tanner really did enjoy all of those things as well. As with all kids, I'm sure that his favorite parts were the cake he got to dig into and of course the presents!