My first real bath

FINALLY!!! We get to bathe this child with something other than a sponge. Since Brynlyn now has the g-tube, she can be submerged in water and get a real bath. Imagine not being able to bathe your baby for the first 3 1/2 months of their life. It was a really interesting challenge and I think it just about drove Mike crazy (we all know what a clean freak he is! LOL) She wasn't liking it at first, but then she eventually got used to it and realized it wasn't a form of human torture after all. It was a nice feeling to know that she was then squeaky clean.

If you think I'm cute...

Well I just couldn't resist this one. This cute t-shirt was given to us with one of our previous girls from Mike's grandma, Nana Curtis. The shirt says: If you think I'm cute, you should see my mommy! Hmm...how can I disagree?! ha ha

Big shout out to Raquet and Jog fans in Tyler, Texas! Giddy-up!

The Nutriport G-Tube

Well, as promised, here are pictures of the infamous Nutriport G-tube. This contraption is a great thing (if you have to have it.) Yet, it has been quite interesting to get used to. In fact, I'm still learning little tricks and tips. This top picture is how the tube fits into the g-tube for feeding time. This is what Brynlyn looks like when she's eating a meal. The green clasp covering the tube actually locks it into place so if she rolls over at night, it won't come out and "feed the bed." Since Brynlyn is continually fed all through the night (from midnight to 7am) this is really an important feature because I'm not always right there watching her. (I do have to sleep occasionally, you know.)
The bottom picture is what the tube looks like when there are no feedings going on. It is fairly low profile to her skin so it doesn't catch very often on things. I am still very cautious when I work with it. I'm nervous it might come out, even though it's quite secure in her stomach. I definitely like this much better than her foley tube they put in after fundo surgery, but it's still scary to work with new devices. Give me a few weeks and I might be a pro afterall.

A couple of busy weeks

We have had our share of a few busy weeks. Many of our days are filled with DR visits. On Monday (10-2) we saw Dr. Finch, the GI DR. He thought Brynlyn's weight was doing okay (she was weighing about 9 lbs) and so he didn't change anything with her feeds. She just needs to be a feeder and grower now. We'll go back and see him in 6 weeks for another follow up visit.

Tuesday (10-3) we saw Dr. Stewart. She thought Brynlyn was sounding great and very clear. She did hear a few crackles in her lungs and so we have switched her breathing treatments to every 4 hours to continue her clearing of her lungs from the pneumonia. Then Tuesday afternoon, we had a little scare with her medications. Our pediatrican caught that Brynlyn was receiving too large of doses of calcium and that the medicine had not been compounded as it should have. She had been receiving almost 9x more than the dose she should have been receiving. So they sent us STAT to the cardiologist's office to have an EKG done. It showed that Brynlyn has an "abnormal heart rate" which is correct because her heart is not fixed yet. But the "abnormal rate" was normal for her. So they were okay with what they saw. They were specifically looking for arrythmia (DEFN: An arrhythmia is an abnormality in the heart's rhythm, or heartbeat pattern. The heartbeat can be too slow, too fast, have extra beats, skip a beat, or otherwise beat irregularly.) They did not see anything, thankfully. Then we rushed over to the Sonoran Quest Labs to have Brynlyn's blood drawn for a CBC (complete blood count) and some other tests. The test results came back normal, amazingly. Another blessing from up above.

Wednesday (10-4) we had a home visit scheduled with CRS (Child Rehabilitative Services). They needed me to sign documentation in order to get Brynlyn signed up for the program. It's a program that is provided by the state. With Brynlyn's lifetime diagnosis of DiGeorge, she qualifies for it. This will help with DR visits, some financial aspects and follow up.

Thursday (10-5) we had an appointment with Dr. Christine Mohler, our pediatrician. She is so great and on top of things. We just love her and think she's awesome. Brynlyn received her first set of immunization shots (4 shots, yikes!) Interesting note, DiGeorge babies cannon receive live immunizations shots because it could cause complications to their immune system. So Brynlyn will only receive immunizations that are killed. Usually the live immunizations are given about 1 year old. She also received her first Synagis shot. Synagis is a medication that will help Brynlyn to fight off RSV, which could be potentially devastating to her. She will receive this shot once a month from October through March, which is RSV season.

Friday (10-6) Pat, Farrell, Candace, Kim and Jakob (Mike's family) arrived from SLC for Brynlyn's blessing. We were excited that they were coming and spending this weekend with us.

Saturday (10-7) Mom came to watch Brynlyn for a few hours so we could take the girls to see the new movie "Open Season" and then to lunch at Fuddruckers. The Jensen clan came with us and we met up with Ron and Judy Everett (Mike's aunt and uncle) for lunch. It was a fun day and it was nice to get out of the house for something OTHER than a DR visit. ha ha

Sunday (10-8) Brynlyn's Blessing Day!

Monday (10-9) Our first visit with Dr. Darrell Wong, the immunologist. He ordered some specialized blood tests for Brynlyn to check levels of her blood count and immune system. I'll take her this week to Sonora Labs to have her blood drawn. Then he'll be able to give us a better diagnosis about what her immune system is like.

Tuesday (10-10) Mom, Mike and I went to see Dr. Lacey (the pediatric surgeon). Today was day they replaced the foley tube with the Nutriport g-tube "button." Then we received g-tube training. It's going to be alot better than the foley tube, however, I'm nervous about it and am sure I will be until I work with it more. I'll post a separate blog and show some pictures of what it looks like on her.

Whew...that is a typical week in the life of Brynlyn.

Blessing Day

Blessing Day! This was a huge milestone for our family. On Sunday, October 8th, some of our sweet family and friends gathered at our ward and Mike blessed Brynlyn with a name and a blessing. Then Mike and I both had the opportunity to share some of our feelings with our ward, family and friends. It was such a wonderful day. I couldn't believe it was actually happening and I pretty much held my breath the entire time until the day was over. =) Brynlyn did great. She was a trooper and had an awesome day health wise. This day was certainly a product of many, many prayers said for her and for our family. And Brynlyn looked smashing in her blessing dress, of the "Cinderella Coture" line from Dillard's. You have to make a fashion statement, you know...

Never, never, never give up!

I need to tell you what the story is behind our family motto: Never, never, never give up! One week before Brynlyn was born, we were having Family Home Evening. That night we were discussing how our family needed a family motto and the assignment was that each person was going to be thinking about it that week and we would discuss it at the next FHE to put our ideas together.

Thursday morning, June 29th, Brynlyn was born and we jumped on this gigantic roller coaster that we are currently riding on. Well, two days later we found ourselves sitting in the waiting room at the NICU at St. Joseph's Medical Center waiting to talk to DR's about Brynlyn's condition. Down at the NICU, there aren't any private rooms. The babies are all in one huge room with dividers that they call "pods." It was very dark and intimidating and scary. All I knew is that my baby looked really sick and it was hard to even be by her bedside because they were discouraging us from even touching her because she had severe hypertension. Any slight touch set her heart rate sky high and she would de-sat. There were three other cribs in her pod so there was no place to even sit down. It was awful, to say the least.

So outside by the NICU waiting room, they have a couple "family rooms" where they have families wait, sleep, stay overnight, eat, or just relax. It's like being in a small hotel room because it has a bathroom, a bed, TV, mini-refrigerator, table and chairs and rocking chair. We favored the "koala room." The joke was how terrible the decor was, but by the end of our NICU stay, we were actually beginning to like it. ha ha

On Sunday, July 2nd, we were at the hospital and we were waiting to talk to DR's to get more information. Whenever they did rounds around the NICU, they would get the parents in there to give them information. We had just come out of a "rounds" session and things were very touch and go. Brynlyn was a mystery as to how many things were going on with her. They did not have full answers for us yet and we were feeling very upset and discouraged. I walked out of the NICU and towards the Koala family room. This was the first time I saw that room. I walked in and immediately looked up and this sign was hung on the wall and it said: "Never, never, never give up!" I actually read it and then burst into tears because it was so hard and so discouraging at that point. It was easy to see why people do give up.

I turned to Mike and said, "I think we just found our family motto."
With much thanks to the Birmingham family, this motto hangs on a plaque over Brynlyn's crib at home.

I love my sisters...well, on second thought...

I think these pictures are great, and unfortunately, very accurate. Brynlyn can survive any surgery we throw her way if she can just survive her loving and doting sisters. She really has 4 mothers here at home. For the most part she's diggin' the girls, but there are those moments when she wishes the house were more quieter so she could sleep in peace.

Okay, here is another "Brynlyn teaching moment". Check out the picture where Bryn is crying. Her left side is dramatically drooped down. This is called Asymmetrical crying facies. (DEFN: "We report two unrelated patients with Asymmetric Crying Facies (ACF) and 22q11 deletion. An infant whose face appears asymmetrical at rest and whose mouth is pulled downward to one side when crying is said to have an 'asymmetric crying facies' (ACF). The present report describes a case with cardiofacial syndrome and ACF associated other congenital anomalies, and provides criteria for differentiating absence of the depressor anguli oris muscle (DAOM) from palsy of the seventh cranial nerve and its central connections. The association of ACF with congenital cardiac anomalies is known as cardiofacial syndrome (Cayler's syndrome)." This information came from: http://www.ihop-net.org/UniPub/iHOP/gismo/112905.html

Basically, it's a "DiGeorge and cardiac baby thing." Anyway, I just thought I'd share that with you. Brynlyn truly fascinates me and is constantly teaching us new things.