Tuesday, April 24, 2012

FIRST POST - A YEAR LATE

I created this blog almost a year ago and am finally posting!
I thought Dean's story would be a good place to start. In the back of my mind, I have always wanted to let others read about our experience because when he was born, one of the first things Kellan and I did (when the shock subsided) was google everything we could about 26 week preemies. We came across plenty of... medical information and statistics that scared us to death. But I REALLY wanted to read the personal experiences of other families so that I could see proof that everything would be okay for Dean. With his first birthday approaching I think I can finally type it all up. I have tried a few times, but it was too difficult. I'll try to keep it short....

I was 26 weeks into a great pregnancy. I LOVED being pregnant. No morning sickness, I don't think I was too emotional (but maybe Kellan would say otherwise), and had just started "showing". This photo was taken the night before Dean was born.


I woke up about 3am in horrible pain. This was our first baby so I thought "WHAT THE HECK IS GOING ON?!" and "I don't think this is normal but I hope it is normal because everything needs to be normal". I don't want to get too much into all the ooey-gooey labor terms, so I'll sum it up by saying that from the moment I woke up, I needed to push. I tried to see if the pain would subside but after a half hour I cried to Kellan "Call my mom". She advised us to head to the hospital. We went to Banner Gateway, which is only about 10 minutes away. After what seemed like 2 hours of checking in (probably 10 minutes) the triage nurse came to check on me. I'm sure they thought I looked like just another young lady, during her first pregnancy, that is whining and "in pain". She snapped a glove on to check me and her face went blank. She looked up and said "I'm so sorry to tell you this, but you are fully dilated and you are going to have the baby right now". I can't describe how I felt. I knew how developed a 26 week baby was. Kellan and I sobbed while the nurse called about 15 nurses/nicu specialists into the room. They paged my doctor and he came within a half hour. He got dressed, and two pushes later Dean arrived with a loud squeal. The sound was amazing and let me know he was alive and when I saw him, he was TINY. Tinier than I imagined, and pictures don't do him justice! 


It was May 5th, 2011 5:30am - He weighed in at 2lbs 1oz and 14 inches long. He was immediately taken by the NICU team to be stabilized. The air-evac team wheeled him in for me to get a peek at him before he was flown to Banner Desert (because they have a level 4 NICU).






We still do not know why Dean came early. I had no infection and my doctor ruled out several other things that he didn't think were the cause.
Family and friends visited me throughout the day and Kellan took some of the family to Banner Desert to see the baby. Kellan had a sweet experience giving Dean a priesthood blessing after he arrived at the hospital. The blessing brought us peace and assurance that Dean would be strong through his many health problems. Needless to say, I was very anxious to be with the baby too. Luckily my doctor discharged me early and I was able to "meet" my little one at about midnight.


I was so relieved to be there but it was very scary. He was SO small.
We were extremely happy to hear that he didn't have any brain bleeds.
His heart was having problems because he had patent ductus arteriosis (this heart artery closes later in pregnancy).

He was intubated to breath because his lungs weren't developed.
He had monitor sensors taped to his chest and belly.
Under the shiny heart sticker is a thermometer because he couldn't regulate his body temperature.
He had a PIC line. This is a more intense IV. It goes through the forearm, up the shoulder, and directly to the heart.
Two other lines going into his belly button.
A pulse oximeter on his foot. Monitors the oxygen in his blood.
He needed blue light therapy for a couple weeks for jaundice.


Banner Desert Hospital has a couple rooms for parents to stay in if needed when their baby is in the NICU. It was like teeny tiny motel room. Pretty much a toilet and a twin bed. Yes, we slept on the twin bed together. But it was great because the baby was just down the hall.

The next morning we walked over to see our baby. We hadn't chosen a name yet because we thought we had 3 more months to decide on that! He looked just like the picture below. We looked at him, looked at each other, and agreed that he would be named Dean (after my grandpa). DEAN PATRICK BRADY


Later that afternoon we were watching him and the nurse was taking vials and vials of blood. SO much blood out of his tiny body! Kellan started walking away from me, speaking jibberish, and then collapsed on me in the hallway! I screamed for help because I had just had a baby the day before! We love laughing about that now. His lil sis almost fainted as well, but I knew the signs after Kellan fainted and we sat her down. Something about seeing such a small little baby...

We loved his wrinkly knees. He would kick his legs out of the "cocoon" he was wrapped in. Dean lost a lot of water weight after he was born. His lowest weight was 1lb 7oz.



The first time holding him was truly amazing. It had been almost a week of just touching him through the incubator. It took a nurse and a respiratory technician to move Dean onto me. They would then arrange the tubes/wires and tape them to me so that nothing came undone. We could snuggle for 1-2 hours a day.




Kellan's wedding ring fit up to Dean's shoulder.


Kellan's first time holding Dean.


When he was about 3 weeks old, he needed heart surgery. The artery in his heart was still open. Medicine had closed it, but it eventually opened back up. His heart problems were also causing breathing problems. The surgery is called a PDA ligation. Kellan and his father Pat gave Dean a priesthood blessing before the surgery started and we once again were comforted that all would go well. I was amazed at the doctor who did the surgery. He wore magnifying glasses to do surgery on Dean's heart that was only the size of a quarter. The surgery went flawlessly. We had hope that his oxygen needs would decrease after healing from surgery, but unfortunately, we didn't see much improvement.


After about 6 weeks on a ventilator and a round of steroids, Dean was finally strong enough to switch to a CPAP machine. It honestly made my heart hurt a little bit looking at him, but it was a very happy day for our family and we were so grateful for the progress he made.




He was a month and a half old and still so small - about 3lbs.



After 1 week on the CPAP machine, Dean was able to be on high-flow oxygen!


That pacifier is smaller than a normal one and still looks so big on him! Its really neat that they make them with a cut-out at the top for the tube for vented babies. (Plus they smell like delicious vanilla for some reason).


First smile caught on camera. Brought tears to our eyes.



After almost 2 months, Dean reached the weight limit to move to the CCN - Continuing Care NICU. He had previously been in a 'Pod'. That is a large room of 8 or so babies with curtains dividing them. It was soooo nice to finally have our own room. It had a couch! And it kind of turned into a bed (I would say smaller than a twin bed). Kellan was working out of town and stayed the night at the job about every other night so I would stay the night at the hospital a couple nights a week.


He was swimming in preemie clothes.


At this point, we had started the feeding process. He had previously been fed through his NG tube only but we were able to start bottle feeding! Dean had to learn how to suck, swallow, breath. It was extremely difficult FOR ME. He was fed every 3 hours, which meant I had a mini anxiety attack every 3 hours (Jk... but seriously). I was working part-time and would call the nurse on my break to find out how he did at the latest feeding. The suspense of good/bad news would kill me! It was a roller coaster. One feed good, one feed not so good.... day after day. It got to the point where he didn't really want to take a bottle at all. He developed oral aversion. This is where everything in his mouth had been a negative experience so he didn't want anything to do with the bottle. He would often take a drink, choke, his heart would stop, and he would start turning blue. What I was supposed to do to get him to breath again went from being incredibly frightening to becoming routine.



Dean smiling back at his primary nurse Tamara. A great friend, and one of the sweetest, strongest people I know.




He was sure chunking up with his feeding tube. He got the calories without all the work of eating.


The doctors had let us know that Dean wasn't improving enough on his oxygen levels to go without it and that he would need it for a few months at home.


After over 4 weeks of feeding struggles, the doctor met with us about sending Dean home on a feeding tube. With many prayers and fasting, and a change in feeding tactics (TMI for the blog), he actually started to improve!


Wa-Wa..... then he got thrush. He didn't want to eat anything anymore, well I could see that he wanted to but it hurt so he couldn't. The thrush wouldn't go away with medicine so he got the ginseng violet treatment. As you can see from the picture below, he didn't like the taste. It also stained his mouth purple for two days!


After treatment Dean ate well again and gained weight. Then I got a call from Dr. Watercotte (below) that Dean could come home the next day. It was a shock and I remember asking the doctors a few times after that "Are you sure? Are you really sure that he can come home???"

Here we were with Dr. Watercotte. I have too many good things to say about him. I get teary even thinking about him. More than once, when I really felt low and alone he just happened to walk in and tell me exactly what I needed to hear. He was the answer to many of my prayers.


August 12th, 2011 - Two days after Dean's due date and after over 3 months in the NICU, we could take Dean outside of the doors!!!


It was the best feeling to have him HOME!
Dean's "newborn" session two weeks after coming home. Although he was already 3 months old, he was still technically a newborn. We go by his due date until he is 2 years old. I loved that we got the pictures done while he was on oxygen for the memories. We did sneak it off for 20 seconds at a time for some pictures though.



Little sweetie. Ahhhh...... There! 3 of the hardest months of my entire life all in one post!

3 comments:

  1. Ah, so sweet. Thank you for sharing this story. How inspiring to EVERYONE!

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  2. Nat! That is condensed very nicely :) I can't imagine how hard that was to write. I think of when I had my Mckay..just a normal healthy, induced labor. And I BAWL through every step. ha ha. I love that baby Dean and can't wait to squeeze him this weekend!

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  3. I loved it! What an amazing story!

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