It's what Fun is!

Wow, it's been a busy week! Lance and I got to go to Lagoon, Abbie turned 4 months old and had her 4 month check-up, and we celebrated Father's Day of course!

So first things first, we got some discount passes to Lagoon and we were so excited to go, especially me. I wanted to go on some roller coasters so bad since I was pregnant last summer when we went to California and Lance got to go to Six Flags. Anyway, so we get to Lagoon and went immediately to Wicked before the line got too long. It was a pretty sweet ride! Only a few short rides later, Lance was feeling nauseous, I had a killer headache, and we were both tired! What happened to those carefree days of youth when we could run around, going on ride after ride, and never get tired? We couldn't believe how old we felt! We even had to take a break and go to my parents house to take a little nap! Oh well, we still had fun, even though it didn't turn out to be the day we had imagined. Abbie had a fun day with Grandma J going on walks and being spoiled! Thanks Mom!

I can't believe Abbie is 4 months old already! She gets cuter and cuter everyday and she's doing well developmentally, despite her rough start in life. She weighs 12 lbs. 12 oz. (30th percentile) and is 24 1/2 inches long (60th percentile). She had to get some immunizations and she was a little cranky, but a little bit of Tylenol, a cute new dress, and some stylin' sunglasses, and she was as good as new. The most common question we get about Abbie is "How much longer will she need her feeding tube?" We have no clue! We are trying to work with her but there is only so much we can do if she won't suck. We're going to make an appointment with another feeding therapist (I didn't feel like the first one was helpful at all) and see if that helps.

And last, but not least, Lance got to celebrate his first Father's Day on Sunday. He is such an amazing Daddy! He's so good at taking care of Abbie and he's not afraid to change a dirty diaper! Abbie loves her Daddy and always has a smile for him! Thanks for being such a wonderful husband and father!

Fun Weekend

It's 10 o'clock in the morning and Abbie is STILL sleeping! So I thought I'd take advantage of it and do a little blogging. It's always a little sad when the weekend is over (especially because Lance takes the Abbie night shift on weekends!) but I love the weekdays when Abbie and I get to relax in our PJ's all day. Anyway, we did have a fun weekend. Lance and I got to go on not one but two dates thanks to our wonderful parents. On Friday night we left Abbie with Grandma Moss and went mini-golfing at Cherry Hill where Lance proceeded to give me a good walloping.

Saturday we did a little shopping while G & G Johnson watched Abbie. We love our little baby but let's face it, it's nice to have a little break sometimes. Saturday night we had a BBQ with Lance's family and Sunday night we had our monthly family night with my mom's side of the family. It was a pretty full weekend but Abbie gets cuter every day and we love watching her grow and change and showing her off to friends and family.

Just Another Day

I guess it's been awhile since our last post but there hasn't been that much to post about. There still isn't that much to post about but here goes. We've just been getting into a little routine around here, Abbie wakes up anywhere from 6-8 and is usually pretty happy in the morning. Sometimes she even lets me get a load of laundry in! The rest of our day consists of short periods of Abbie taking cat naps while I try to sneak in some breakfast, lunch, and rest. When she's awake and happy (which doesn't happen very often some days) we try to work on bottle feeding. She still won't suck on anything but at least she'll let the bottle into her mouth without throwing a fit. Lance gets home at around 4 which is so nice for me because that is generally when Abbie starts to get crabby. It's nice to be able to switch off when our muscles and joints are aching from bouncing and rocking and jiggling. She usually goes to bed at 9 which gives Lance and I a little time to watch a movie or play a game before our eyes start to droop.

In other news, Abbie has finally graduated! Since we came home from the hospital, Abbie has been seeing her pediatrician every week to make sure she is gaining weight. Well, yesterday, after Abbie weighed in at a whopping 12 lbs 2 oz, our pedi told us that we didn't have to come back for TWO weeks! hehe. Well, we have to celebrate the little things! Heck we celebrate when she only throws up twice a day instead of the usual 4-5 times. Lance went on a short business trip this week. He was only gone 2 1/2 days but wow it seemed like a lot longer than that! Abbie and I missed him and are very glad he's home now. Well that's about all that's been going on with us. We're excited for nice weather and a fun and laid back summer. Here are some random pics just for fun.

Abbie's new talent

Abbie's funny hair after her bath

Sunday Night Drama

Ninja Warrior

We should have known from this picture that Abbie had lightning quick ninja reflexes, but we were fools and turned our backs for one minute. In that one minute, Abbie managed to do this:

Yes, she pulled out her feeding tube! The feeding tube that we tried so valiantly to keep in! And you can tell she was pretty proud of herself! (ok, this picture was staged, but isn't it perfect?). Anyway, we had to call a home care nurse to come and watch us put it in since we've never done it ourselves. We had to try three times to get it all the way down her nose to her stomach and little Abbie was not a happy camper! I have never seen her as upset as she was last night! We felt terrible, but of course she was just fine a few minutes later. Now if she pulls it out, we can put it back in all by ourselves, not that it's a happy event, it'll just be nice to not have to call a nurse to observe.

3 Months Old!!

Wow, I can't believe my little baby girl is 3 months old already!

3 things Abbie loves

1. Being rocked to sleep

2. Watching American Idol with mom and dad

3. Going for rides in the car

Dad rocking Abbie to sleep

3 things Abbie hates
1. Getting strapped in her carseat
2. Getting her nose suctioned out
3. Right now, her binkie :(


3 things Mom loves about Abbie
1. Dressing her up all cute
2. She sleeps through the night!
3. Her big smiles!

Abbie's favorite sleeping position

3 New things we've tried with Abbie this week

1. Going to church for the first time

2. Going to the feeding therapist

3. Getting a new tube (an NG-tube that goes to her stomach instead of her intestines)

Abbie sporting her new tube and a new hat. Isn't that face priceless?!

Mom and Abbie chillin' after church

Abbie's History

This post is for those who do not know about Abbie's condition or those who want a refresher. For those who have kept up with Abbie's progress, you already know most of this stuff.

Before Abbie’s birth, we found out (in October 2008) about the heart defect that she would be born with. It is called an Atrio-Ventricular Canal or AV Septal Defect, meaning that there is a hole between the atria (upper chambers) as well as between the ventricles. The hole between the atria is larger than the lower hole, but they both allow for oxygenated blood (from lungs) to mix with non-oxygenated blood (from the body), and the two valves (mitral and tricuspid) were basically meshed into one valve.

Happy Birthday Abbie!

When Abbie was born on February 20th, 2009 at 4:16 a.m., she weighed 8 lbs. 7 oz. and was 20” long. She was breathing room air immediately, and her oxygen saturation levels, measured in her hand and foot, were in the high 80s to low 90s, very good considering the AV Canal. Abbie was sent to the Primary Children’s NICU later that day because doctors found through echo-cardiograms that there were a couple of other problems with the heart.

After appearing to progress and get feeling better for several days, Abbie’s health took a turn for the worse on Sunday, March 1st. She continued to breathe very rapidly and build up too much fluid in her lungs.

After some decision-making processes by teams of doctors and nurses, they agreed that Abbie needed heart surgery sooner rather than later. Friday, March 6 was the day, and it was a miraculous success. We most definitely felt the prayers and thoughts of all of our friends and family. In speaking with the Dr. Hawkins, the surgeon, we have found out more about the condition of her heart, and realized how much of a miracle this really is. Besides the Atrio-Ventricular Canal that they needed to fix, there were also some veins going into the wrong chambers of the heart, and an extra piece of tissue that needed to be removed in the Aorta. But in just a few hours, the surgeons were able to “fix everything” in one surgery, and it worked extremely well right after they put the heart back in and started it back up.

Abbie after open heart surgery

Abbie’s own heart rythym didn’t come back after her first surgery, so on March 19th, Dr. Hawkins inserted a pacemaker into Abbie’s abdomen, with leads up to her heart. This type of pacemaker is quite sophisticated, and it has a lead up to the top chamber and the bottom chamber, only giving electrical pulses when she needs them. We found out recently that her heart is requiring one of the pulses about 95% of the time, and about 5% of the time is requiring both pulses. There is nothing wrong with this – the pacemaker is just doing its job, but it’s probably a good thing they decided to put it in.

On the 2nd of April 2009, Abbie had another surgery, called the Ladd’s procedure, which was to prevent rotation and cutting off of intestine functions. Part of Heterotaxy Syndrome, which is what she has been diagnosed with, is the possibility that the baby has a condition called “malrotation”, which translates into Spanish as “bad rotation”, of the intestinal tract. The surgeons basically just have to move part of the intestine to where it should be, to avoid the aforementioned twisting and cutting off of the intestines. They also took out her appendix because of its odd location, so she’ll never have appendicitis.

Abbie's surgery scars

On the 13th of April 2009, the day after Easter Sunday, we got to bring Abbie home (after 7 ½ weeks in the hospital). She was on 5 medications and an NJ feeding tube, but we have loved having her home. We visit at least one doctor or care-person every week, but it has still been a joy to figure this real “parenting” thing out.

Our happy little girl

Abbie's Baby Blessing

On March 5th, 2009, we gave our daughter a name and a blessing. Obviously, we named her Abbie Lynette Moss.

The reason we chose to do the blessing in the Newborn Intensive Care Unit at Primary Children’s Medical Center was because she was going to have open-heart surgery the next day. We know that blessing and naming of children is not an “ordinance of salvation”, since little children are already saved through the Atonement of Christ, but we still did not want to miss this opportunity if something were to happen during her surgery. We had faith that nothing bad would happen, but even the surgeon seemed quite nervous about the whole procedure and gave us some statistics about survival rate for a surgery of this kind. The hospital and nurses were very kind to let us close the curtains around Abbie’s bed for some privacy, and to allow the family to come back altogether, which is not normal visiting policy.

Anyway, I want to share some of the things that Dad (me/I) was inspired to say to Abbie as part of her blessing. We blessed her to be healed and to make it through the surgery(ies); we let her know that many many people were praying to Heavenly Father for her benefit; we blessed her with reverence, with the ability to build a strong testimony of the Truth, with the ability to make good friends, and with the gift of discernment between right and wrong. She was quite peaceful through the blessing, and it was a privelege to bless her.

Those that were available to participate were Dad (Grandpa) Moss, Dad (Grandpa) Johnson, Bishop Justin Reynolds, and Lance’s friends, Dave Hamblin and Mike Kennard. It was a wonderful experience. The Spirit was felt very powerfully, and we are so grateful we got to do that, even under some stressful circumstances.

Back when we found out about Abbie’s heart defect that she would be born with, I had asked a member of my bishopric if people ever do naming and blessing in their own homes, and he said it’s been done for special circumstances, but he didn’t recommend it. We just thought it might be necessary considering her sensitivity to sickness and infection, but I think my question came across as a request to avoid doing it in Sacrament Meeting because of irreverence or pride. We didn’t mean it that way. Later, after we gave Abbie her name and blessing in the hospital before the big surgery, Kellie asked me if I was relieved or disappointed that we didn’t get to do the name and blessing at Church. I’m not really sure if I was relieved, but I wasn’t particularly disappointed. I was just so grateful for the great experience that it was to bless my daughter with true sincerity in a moment when we really might have been preparing for the worst case – and then we were blessed with the best case.