Monday, May 25, 2009

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.

Wednesday, May 20, 2009

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

Tuesday, May 19, 2009

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

Friday, May 15, 2009

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.

Wednesday, May 13, 2009


So, I'm probably a little out of the loop but I just barely heard about this site called where they give away a different thing every day. Anyway, yesterday was the first time I had ever entered to win and guess what? I WON!! I won a $25 gift certificate to Baby Bintz. Isn't that crazy! I never win anything so I was pretty excited. So, if you haven't heard of this, go ahead and enter. Maybe tomorrow will be your lucky day!

Results of Swallow Study

Well, Abbie had her swallow study yesterday and she did pretty well. She doesn't aspirate (swallow down the wrong tube) anymore so they gave us the go ahead to try feeding by mouth. This is great news but just because we CAN try to feed her, doesn't mean Abbie WANTS us to try and feed her. They practically had to force her to swallow. She fought it every step of the way and pushed most of the liquid out with her tongue. We're supposed to try and get her used to having liquid in her mouth by dipping her binkie in formula and getting her to suck on it. I have tried several times since our appointment and she just keeps pushing the binkie and formula out with her tongue. It looks like we're probably going to have to find a feeding therapist that specializes in oral aversions if we want to make any progress with her feeding.

We are going to move her tube up from her intestines into her stomach within the next few days and we'll see how she tolerates that. Despite the fact that this is going to be a long road, she is progressing and that's really all we can ask for. Even though this whole process has been challenging, we are so happy that she is part of our family and we love watching her grow and change each day!

Tuesday, May 12, 2009

First Cardiology Appointment

Abbie has been out of the hospital for 4 weeks now! Yipee! We had our first cardiology check-up yesterday and everything went really well! It was a busy day for Abbie with a chest x-ray, a pacemaker check, an echocardiogram, and a blood draw. Poor little girl! She was a trooper though. Our cardiologist, Dr. Puchalski, said that everything looked good. Her heart function hasn't gotten any worse, and may have even improved a little since we left the hospital. Her pacemaker is working great, but no signs of her heart rythym coming back on it's own yet. We're still hoping that someday it will and she won't need the pacemaker anymore. Anyway, we don't have to go back for three whole months! Wahoo!

We have another appointment today for a swallow study to see if Abbie can handle feeding by mouth yet. If the test goes well, they will probably move the feeding tube up into her stomach and we will probably be able to try bottle feeds! It would be so great not to have her tethered to her food all the time! We'll let you know how that goes when we find out.


Sunday, May 3, 2009

Lance & Kellie Moss Family Blog

We have wanted to start this blog for a while now, particularly to share Abbie's progress with friends and family. Here are a couple pics to share to start with.

Lance & Kellie (& Abbie)