Sunday, December 31, 2006

Back in the hospital

Well, we were just released from another few days in the hospital. On Wednesday 12-27, by suggestion of our pediatrican, we were sent to the ER at St. Joseph's. At our DR appointment that day when she was scheduled to get her 3rd Synagis (anti-RSV) shot, she was having difficulties breathing and was very congested. After checking her Oxygen saturations (SATS) they were only coming up about 65. She has been breathing at about 80, so this was quite a drop. She was retracting a bit while she was struggling to get enough oxygen to breathe. So our pediatrician told me that she really didn't want us going home just in case anything might happen, so she strongly urged us to go right to the ER.

So I called Mike and met him halfway to the hospital and Mom came and picked up the girls. We then called the heart surgeons and they told us to go to their office before we went to the ER. They thought she needed to be admitted immediately, so they called PICU and found a bed for us. We were so grateful to be avoiding hours and hours waiting at the ER with many other sick, RSV kids.

At first they were concerned that she had a heart infection because the echocardiogram they did on her was showing that she was having lots of leaking from her tricuspid valve (which we had already known about.) So one of the cardiologists went over to the Mesa office to personally view the results of that last echo done in November just to compare the two. They found that it was not any different. Thank heavens. We were quite relieved because the treatment for a heart infection is 8 weeks of IV antibiotics. Whew...

So they continued to run blood tests, testing for RSV and other bacteria and viral infections. Everything came back negative, so they concluded that Brynlyn was just fighting an unknown viral infection and she would just have to let it pass.

They started with breathing treatments every 4 hours which includes CPT (chest pats) and deep suctioning of the lungs. They pulled out quite a bit of fluid out of her lungs, so that hopefully would help the passing of the infection.

She started to look better clinically so they released her from ICU on Friday and then released us on Saturday around 1:00 p.m.

She is very happy to be home and has slept almost nonstop. (I forgot how much sleep you miss by being in the hospital.) We are happy to have her home also.

The interesting thing is that Mike and the girls were all packed up to leave on Thursday to go to Utah for New Years. They were going to be leaving early the next morning. It is just another reminder to us that you just never know what's ahead in the future and you never know what's going to happen from day to day. You just have to plan as best as you can and "roll with it" when plans suddenly change.

Tuesday, December 26, 2006

Merry Christmas!

Ya gotta love Christmas clothes. Brynlyn looked oh so cute in these clothes. We loved the touch that the red/white socks added to her ensemble. Christmas is such a wonderful day of the year, and a huge milestone for Brynlyn. We're so happy she is here with us and doing so well on this festive holiday.

Story Time

This is so darling! Lauryn is reading a story of "The Littlest Christmas Tree" to Brynlyn while Katelyn holds her. Brynlyn was so interested in what her big sisters had to say to her. You would think that this was the best story ever!

Wednesday, December 13, 2006

The Jimmy Leg

Brynlyn does the funniest thing. She sticks her leg up in the air and just holds it there for seconds at a time. It's always the left leg, never the right. Since Mike is such a die-hard Seinfeld fan, he has nicknamed her leg "The Jimmy Leg" after a Seinfeld episode. He will say to her, "Brynlyn, show me the jimmy leg." And she will stick her leg up. It's such a crack up. I really think that these two need to take their show on the road! ha ha

Tuesday, December 12, 2006

Say cheese and meet cousin Abby!

I love these pictures. They were taken at Thanksgiving time. We were having a very large family reunion and unfortunately, Brynlyn could not take part in any of the festivities because she was being quarantined to keep any illnesses away from her. Well one night, all of my siblings and their spouses came over late late late to eat and scrapbook and play cards. It was such a fun time with memories I'll never forget! I took this picture with Brynlyn's back towards me because I had to show you how many people were checking her out and trying to get her to smile. That was the funniest picture of all! And Brynlyn was loving all of the attention.

(going clockwise from the bottom:)

Mike holding up Brynlyn's head, Aunt Sandy and new cousin Abby, newlyweds Robby and Emily, Aunt Connie, Aunt Barbie.

The bottom picture is Brynlyn and Abby. Abby was born 2 weeks before Brynlyn in June. So they are destined to be buddies. I was curious to see the size difference, developmental and behavior difference. Brynlyn was smaller than Abby and definitely not quite doing developmental things that Abby was doing. In the hospital, they told me that each day in the hospital, puts an infant about 3 days behind in development. I didn't believe them until I see it now. It's true the Bryn is behind. In fact, she's almost 6 months, but really she's doing 3 month developmental things. I know she'll catch up, and she's going to start getting physical therapy and speech therapy. But I do find it very interesting regarding the delays just because of the hospital stays.

Brynlyn can hardly wait until she and Abby can play together. I know they'll be fast friends.

Simply worn out

I absolutely cannot resist this cutest baby! I love the little dimples in her elbow on her arm. It gives me so much relief to see "chub" beginning to form on her. I know she's gaining more weight and feeling better each day. I love how she holds her hands when she sleeps each night. I love that she still loves Piglet. (Piglet is a very loyal friend who has been by her side since the beginning.) I love this bunny that is laying on top of her head. It is absolutely the softest plush animal ever. And Brynlyn loves it and coos and kicks her legs whenever we rub the bunny ear up against her cheek and face. She also loves it when it is laying against the top of her head. It's the funniest thing, but when she was in the hospital, we would always lay a beanie baby up against the top of her head. She loved it and I think it gave her a sense of security. Ever since then, she loves it when something is laying against the top of her head. I love it that she sleeps with her mouth wide open. That is SUCH a Jensen thing. Daddy and Lauryn do that every night and love that Brynlyn gets that from them.

Photo shoots, doctors, and speeches...oh my!!!

This has been another busy couple of week for our little superstar.

Nov 29th, Brynlyn and I were invited to be a part of a photo shoot down near St. Joseph's Hospital. They are redoing some of their billboards for a new heart campaign and they wanted Brynlyn on their billboard! Yeah! So Mike and I went down with her to have our picture taken with her. There will be an adolescent boy, heart patient, also on the billboard along with a woman who is a heart patient. They billboard will be at Central and Thomas. They will probably put the billboard up in mid to late March and it should run for about 6 months. SO...we were very honored to be asked and it was so much fun to go and be invovled in this photo shoot. We'll keep you guys posted as to when it's going to be put up, etc. We were thinking that the timing might be perfect if Brynlyn goes back in for surgery in March.

Nov 30th, she had her 4 month pediatrican visit and got another Synagis shot with some other immunization shots. Yikes, those really aren't any fun at all. You'd think after 4 kids I would be used to shot days. Nope, they still hurt just as much as they always have. The shots really throw Brynlyn and it takes her about 2 days to recover, poor thing.

Dec 6th, I was called up on Tuesday the 5th and asked to fill a guest speaker spot at a Heart Walk Kick off Luncheon down at the hospital on Wednesday, Dec. 6th. I was really nervous as I was preparing my remarks, but if there's anything that Thornocks can do, it is to TALK!!! We were all born with the gift of gab. ha ha So I wasn't nervous per se about the speech itself or the delivery. I just wanted to make sure I made an impact on these committees so that they would be inspired to go out and do fundraisers and raise money for the heart program at the hospital. They loved seeing Brynlyn and just oohed and ahhed over here when we introduced her to them following my speech. She was certainly the hit of the luncheon for sure! The photos above were taken following the luncheon at our house. (Check out Brynlyn's darling designer denim dress. Thank you to Angie Cook who went shopping for Brynlyn in NYC at H&M. Love it and we were so glad for an opportunity to show it off!!)

I felt the speech went very well and was very pleased with the outcome. They were quite receptive and it turned out to be such an enjoyable experience. I'm grateful for the chance I had to go down and thank them for the work they had already done and would continue to do.

Dec 7th, back to Dr. Stock, cardiologist, for EKG and follow up appt. He says her heart looks great and he doesn't need to see her again until mid January.

Whew...time to take a nap...ha ha

Saturday, December 02, 2006

Our very own Beanie Baby

We have our very own beanie baby! Brynlyn's crib and set up is in our bedroom. And our room is the coldest room in the house. It gets very chilly at night, so we have started putting on this pink knit hat to keep Brynlyn's head warm. I can't say that she actually likes it and it is usually off of her head by the morning. But she looks so cute in it that I couldn't resist a photo shoot.

Bryn is doing great. Last week she received her 3rd Synagis shot (to prevent RSV). She also received her 4 month immunization shots. She is weighing in at 12lbs. 12oz. She is 23 3/4 in. long. She is charting on the 11th percentile for weight and 10th percentile for height. Hey, she may be small, but atleast she's proportionate! ha ha They say she'll have substantial weight gain following her reconstructive surgery.

She is so happy pretty much most of the time and is generally good natured. She still sleeps so much each day. She gets tired really easily so her wake times are fairly short. She is doing well, so far so good. We are still very cautious about taking her anywhere. She gets to go to DR appointments and that's it. This is hopefully to prevent any wintertime sickness.

We're having a fun time with her, just trying to enjoy and take it day by day. That's the latest.

Wednesday, November 08, 2006

Special Pictures by Joy Carmona

These pictures were taken by our very talented friend Joy Carmona. They turned out amazing and we just couldn't wait to share some of our favorites with you. Thanks for everything Joy. You are amazing and we are blessed because you are sharing your talents with us. Love ya...

Next Heart Surgery ???

Today (November 8th) we visited the pediatric Cardiologist, Dr. Stock. He is such a terrific DR and we are so lucky to be going to him.

They did an echocardiogram (DEFN: An echocardiogram (also called an echo) is a type of ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off the different parts of your heart. These echoes are turned into moving pictures of your heart that can be seen on a video screen.
Transthoracic echocardiogram (TTE). This is the most common type. Views of the heart are obtained by moving the transducer to different locations on your chest or abdominal wall.

The results looked very good and he said her heart is functioning very well. She has some leaking in her tricuspid valve, but apparently she has had that since birth so he's not overly concerned about it because the volume has not been increasing. He will have them address that at her next heart surgery. (DEFN: The tricuspid valve is on the right side of the heart, between the right atrium and the right ventricle.)

Also, they did an EKG (DEFN: An electrocardiogram (EKG, ECG) is a test that measures the electrical signals that control the rhythm of your heartbeat.)

Those results looked great as well and nothing had changed since her last EKG about 4 weeks ago. So he is taking her off 2 of her medications: captopril and lasix because she's functioning so well and has too many meds as it is.

She has gained 1 pound in a week and she now weighs 11 pounds. They are so pleased with her growth and she's growing right on schedule (and even a little ahead.) They charted her on a growth chart today and she is between the 15th and 20th percentile. Wahoo!

The indicator of when they will do surgery next is contigent upon her weight and oxygen saturations (SATS). She is currently "satting" between 75 and 85, and really she is about 82/83 range. As she grows, her sats will drop because of the additional work on her heart and shunt. Dropping sats is what they will be looking for and expecting to see with her growth. When she is satting in the high 70's, 79, 78, they will schedule a heart cathetrizaion. Just to give you an idea, a "normal" body needs 95% to 100% saturations in order to be receiving the proper amount of oxygen to function. Her saturations are lower because her heart is not "fixed" yet and she has mixed blood in her veins.
(DEFN: Cardiac catheterization is a test to check your heart and coronary arteries. It is used to check blood flow in the coronary arteries, blood flow and blood pressure in the chambers of the heart, find out how well the heart valves work, and check for defects in the way the wall of the heart moves. In children, this test is used to check for heart problems that have been present since birth (congenital heart defect).

This heart cath will most likely be done in January. It will be an overnight procedure. So we'll get another night at St. Joe's. We are missing all of our nursing friends there. So that will be a good excuse for a reunion. Then depending on how that looks, they will possibly schedule surgery for late Spring (unless Brynlyn tells them differently.) When she is consistently satting around 75, they will go in and do surgery.

We are really enjoying this time with her. It is still very scary and busy and late nights and always checking her breathing and giving meds and trying to do home PT, and playing, and tummy time...aagh...yes, I need a nap. ha ha

But we are being so blessed and Brynlyn is being blessed. She is doing so well (knocking on wood) and we are grateful to see her thriving as well as she is.

Pumpkin (cutie) Pie


Tuesday, October 17, 2006

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! can I disagree?! ha ha

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

Sunday, October 15, 2006

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.

Tuesday, October 10, 2006

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.

Monday, October 09, 2006

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.

Friday, October 06, 2006

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:

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.

Saturday, September 30, 2006

Life with the G-Tube

Well I couldn't blog without showing you life with the g-tube. The picture on top shows the incision site where they inserted the foley g-tube. They have kept this on for 6-8 weeks post op to give the track to her stomach time to heal. When we went back in for follow up last week, the tube was hanging on by a few stitches, so the nurse put this hollister bandage over the tube securing it in place until we can have the foley tube replaced with the button I talked about earlier in the blog. They will do the button on Oct. 10th. They are confident that the stomach track will be fully healed by then. There will be no love lost between me and the foley tube. It's no fun to work with at all because it's leaky, gets clogged at times, and it catches on everything and then tugs on Bryn's stomach. And honestly, it's a little strange seeing a tube coming out of your child's stomach. I'm sure this balloon button thing isn't going to be much better to look at, but it's very low-profile and only protudes about the skin about 1 inch. I'll be sure to post a picture of the "button" after it's inserted into her.

Notice Brynlyn's fists. In almost all pictures, she has her fist tightly shut. The nurses in the PICU told us that this is actually a "heart baby" thing. Most heart babies tightly clench their fists but what's different than other babies, is that their thumb is tucked inside their fist. It's just very interesting to notice.

Wednesday, September 27, 2006

Brynlyn and Piglet

I love this picture. Brynlyn loves her pacifier and of course it's the huge hospital one that she's fond of. It's still hard for her to keep it in her mouth and so Piglet became my little helper in keeping her pacifier in. This is actually what the nurses in PICU would do to keep her paci in. It works great!

Yesterday (Tuesday 9-26) we had a DR visit with Dr. Lacey (the pediatric surgeon). It was a follow up visit from her fundo surgery. It will be five weeks (on Friday) since her surgery. My how time flies...He thought her incision site looked good. However, the last few of her stitches were still in place on her skin barely holding the tube into her. So he put a stoma bandage of some sorts on it along with a clamp to secure the tube. Brynlyn really didn't enjoy getting the remaining stitches cut out, but it was nice to get it held more securely into place. The track that leads into her stomach needs a few more weeks to heal. This is a good temporary fix until then.

Our next discussion was that Brynlyn will go back into the office in two weeks to replace her "foley tube" feeding tube for her "button" g-tube. I took part in Button Training 101 by the nurse in the office. This g-tube button experience is going to be quite interesting. Check out for more information on these feeding g-tubes. We actually have two choices of g-tubes: the Mic-key and the Nutriport g-tube. I plan on doing research on both these next few weeks so we can make the best decision on which one to use for Brynlyn. There are pros and cons to both. Right now we're leaning towards the Nutriport g-tube.

Then, we also went to Dr. Stewart's office for follow up (pulmonologist). She and Brynlyn had some good bonding time. It was cute because Brynlyn was a little fussy because she had missed her naps and she was bone tired from seeing these DR's. So I was trying to calm her while waiting to see Dr. Stewart. The minute the DR walked in and held Brynlyn (which she calls "Brynlyn time", she stopped fussing and was giving the biggest smiles. More proof how much she loves Dr. S. Dr. S thought Brynlyn looked great and sounded very clear. We're still running a course of antibiotics just to make sure the pneumonia is completely cleared up, but she's thinking it's doing much better.

Brynlyn has developed thrush in her mouth (most likely due to all of the antibiotics that she's on.) Unfortunately, antibiotics destory good and bad bacteria. And she also has a horrible diaper rash right now, which Dr. S says is linked together. So she has added one more medication to try and clear her up.

Tomorrow (Thursday 9-28) we have our first assessment with CRS (Child Rehabilitative Services.) It's a state funded program that children with special needs qualify to be a part of. So tomorrow is our enrollment visit/nurse assessment. I'll let you know how that goes.

Thank you for your interest and prayers for our family and our sweet Brynlyn. She's thriving because of all of the love and prayers said for her.

Friday, September 22, 2006

Lookin' good...

So far, so good

Well, we have made it 13 days being at home. Brynlyn has already broken her own record. She is doing well. This week we were at the pulmonologist's office. This appt is normally a 2 hour appt because Dr. Stewart loves having her "Brynlyn time." What is so sweet is watching how much Brynlyn adores Dr. Stewart AKA Dr. Tink (because she's just like Tinker Bell.) Anyway, she thinks Bryn is doing great and thriving being at home. Her pneumonia is beginning to clear up with help from antibiotics and breathing treatments.

We added another DR to Brynlyn's regimen. "Dr. Mary" Serrantonio is her pediatric endocrinologist. She is so wonderful and we love her already. Come to find out, that Dr. Mary also treats our cousin Tami and Mark Millett's daughter, Heidi. Heidi is such a trooper and is holding her own against diabetes. Here's a shout out to the awesome Millett family. I love that we share Dr. Mary! It's a family thing now.

We spent 2 hours in her office this week while she was getting to know Brynlyn. She is treating Bryn for hypoparathyroidism. DEFN: Hypoparathyroidism is the state of decreased secretion or activity of parathyroid hormone (PTH). This leads to decreased blood levels of calcium (hypocalcemia) and increased levels of blood phosphorus (hyperphosphatemia). Symptoms can range from quite mild (tingling in the hands, fingers, and around the mouth) to more severe forms of muscle cramps leading all the way to tetany (severe muscle cramping of the entire body), and convulsions (this is very rare!). For her treatment, she is on calcium supplements and vitamin D supplements, for life.

Also, we increased her feeds because she's just not gaining weight. She's holding her own right now and not losing weight. But we've got to get some meat on her bones before surgery. So she is now eating via g-tube 100 cc's of Pregestimil formula every three hours. (60 cc's = 2 oz) The reason she is on Pregestimil is because it is already digested food. Her body doesn't need to do any work digesting the food, only absorbing the nutrients. She needs to preserve her energy for growing. And they say Brynlyn has very little reserves, so she gets tired and worn out easily. So the more work we can do for her, the better. I suggested to her DR that we could melt a couple of Snickers bars each day and feed them through her tube. Atleast, that's what helped me put on some pounds, I'm sure it would help her gain weight too! ha ha

She is still on her medications, that now total 14. The chart I created to manage the doses is lifesaving and would be so confusing without it.

She is getting so good at holding her head up. It's amazing how I took little developmental stages for granted with my previous children. Now I realize how big this milestone is for her and how hard this is for her to do. She's such a trooper.

And she's sucking on her fist and loving her pacifier. These are such huge steps to help her oral aversion. She is very alert and active and is a typical baby in that she loves being held and fusses when she's put down. Can anyone else relate?

Well that's the latest. I will be sure to be a better blogger and keep the updates coming. Thanks for your interest and concern for us and our sweet baby. We appreciate all of the love and support. Take care and have a safe weekend!

Tuesday, September 12, 2006

Welcome Home!

We never thought this day would come, but we are home...again. Mike and I were at church on Sunday sitting in sacrament meeting. (The girls had spent the night at Mike and Connie's house the night before and so they went to church with them.) Mike got a call from the hospital, which is usually never a good thing. The theory is: "No news is good news." However, this call was good news. We talked with Dr. Stewart (pulmonologist) and she asked us what we thought about taking Brynlyn home that day. We were so excited and had been ready for this since we had taken her in 30 days previously. And this was Brynlyn's number 70th day of total hospital days. Yikes...I think we have worn out our welcome with St. Joe's. ha ha

So Brynlyn is home and doing well. She still has pneumonia, so we give breathing treatments Q2 (every 2 hours even through the night at Q3). And her feeds are Q3 and then continuous feeding through the night through her g-tube, of course. She is also on 12 medications that all have to be given at all odd times of the day and different doses each day. There is even an antibiotic that is only given on M- T- W. I had to create a chart just to keep track of all of her meds.

We have already been back for follow up visits with the CV surgeon group and pulmonologist. In the upcoming weeks, we will continue to have follow up visits with our pulmonologist, CV surgeons, cardiologist, gastroenterologist, fundo pediatric surgeon, and pediatrician. So far, the DR's are pleased with her progress at home. And despite how crazy everything is right now, I know this is a better option than spending more days at the hospital. Brynlyn is doing great and everything is so far, so good.

Thanks for your interest and love and prayers for our family. We feel them daily and really appreciate all of the love and support from our dear family and friends. We'll post again with updates on Brynlyn so keep checking back.

Friday, September 08, 2006

They call me sugar daddy: 8-8-06

So I just have to give a shout out to my sweet husband and let him know how much I love and appreciate him. He is such a great dad to these girls and loves them all so much and they all have him wrapped around their tiny, manicured little pinkies! The entire time Bryn was in the hospital (during her first 38 day stay), he would tell me that he would give anything to have his little baby girl sleeping on his chest. This is one of his favorite parts about being a Dad to a newborn. So one night I came into the room and there he had Brynlyn, tucked in, and she lay on his chest just as comfy as can be, like she was born to lay there and chill with her Daddy. You know I couldn't resist grabbing my camera. He's gonna be upset that I posted this photo but I LOVE it because it shows such a tender relationship between them. Mike, this is why Heavenly Father has given you four daughters: you have such a big heart and so much capacity to love four such unique and different girls. I love you and am grateful for this opportunity to experience this trial and error experiment called Parenting!

Thursday, September 07, 2006

Brynlyn's Birth Day: 6-29-06

Brynlyn Anna Jensen was born on June 29th, 2006 in Mesa, Arizona. She weighed 6 lbs. 13 oz. and was 20 1/2 inches long. She was born at Banner Mesa Hospital in Mesa and was immediately put on oxygen. 24 hours later, she was in distress and they air-evaced her to Banner Desert Hospital in Mesa so she could be ventilated. While at Desert, her heart went into great distress and they discovered she had a severe congenital heart defect (CHD). She was then air-evaced over to St. Joseph's Medical Center in Phoenix, Arizona. She spent the first 3 days in NICU and then was transferred to PICU to begin preparation for heart surgery.

Her diagnosis in relation to her heart is: Tetralogy of Fallot, Truncus Arteriosus, Pulmonary Atresia, Ventricular Septal Defect (VSD), Right Aortic Arch and Discontinuous Pulmonary Arteries.

In addition to her heart defects, she has been diagnosed with DiGeorge Syndrome, 22Q11.2 deletion. All of her complications can be categorized under the genetic syndrome. In addition to her heart problems, she was born with abnormalities with her trachea. And she also has laryngotracheomalacia which is causing issues with breathing as well as feeding issues. As one of the neonatologists said to us at NICU, "Your baby is very, very sick." Now we understand more fully of what she was telling us.

Brynlyn continues to beat the odds. More times than not she should not have made it through the night, but she continues to fight hard to be here with us. We are grateful for her and we are enjoying each precious day we have with our special baby girl.

Brynlyn's Grandparents

Brynlyn is really blessed to have such wonderful grandparents and great-grandparents. They have been so loving and supportive during this difficult time for our family. We are lucky to have them in our lives and grateful for all of the hlep and support they have given us. We love you guys!
(Top) Grandparents Farrell and Patricia Ann Jensen
(Middle) Grandparents Russ and Cathy Ann Thornock
(Bottom) Great-Grandparents Horace and Anna Andersen
Brynlyn's middle name is Anna. She is named after these three wonderful women.

Grandparents not shown: Mel and Carmen Curtis; Grandma Dear Thornock; (Grandpa and Grandma Jensen and Grandpa Thornock: passed on)

Sisterly Love: 8-27-06

Sisterly Love: there is nothing in the world quite like a sister. Brynlyn is blessed to have 3 wonderful and loving sisters. Ashlyn (on the right) is the oldest sister. She turns 9 on October 27th. She is an A-student in 3rd grade, is learning to play the piano, enjoys playing the computer and her Gameboy and is a fantastic organizer. Katelyn (on the left) is the second sister. She turned 6 on August 9th and flies by the seat of her pants. She is impulsive, energetic and lives life to the fullest. She just started kindergarten, is an avid thumb sucker (hmmm...) and she has a blanket named "Blue" that she just cannnot live without. Lauryn (middle) is the third sister. She started preschool this year and is learning Zoo Phonics. She is a tenderheart and very sensitive. She is very close to Brynlyn and thinks she is her 2nd mother.

Mike and I feel so blessed to be the parents of these four beautiful, special daughters of God. They enrich our hearts with lots of love and laughter and they give tremendous meaning to our lives. Even though we greatly outnumber Mike in gender and there are a whole lot of hormones running around our home, I know he wouldn't have it any other way.

Pretty in Pink: 8-7-06

These are a few of the pictures we took of Brynlyn when she was home during those 6 days. She was very happy to be home and really loved it when her sisters would hold her and talk to her. We are looking forward to getting her back home with us again.

Fundo Surgery: 8-25-06

'Twas the night before surgery and all through the hospital...

Brynlyn had fundoplication surgery on 8-25-06. This procedure was done to help control her severe acid reflux. In Nissen fundoplication, the fundus (upper part) of the stomach is wrapped around (-plication) the inferior part of the esophagus, preventing the reflux of gastric acid (in GERD). Dr. Rudolph Nissen first performed the procedure in 1951, and the procedure therefore bears his name. In addition to the fundo surgery, she also had a gastrostomy (AKA g-tube) placed in her stomach. This tube provides an alternate way to offer food and / or medicines. It also can be used to vent her stomach for air or drainage. This tube will allow her to consume all of her feedings so she can get her adequate amount of nutrition so she can continue to grow.

As of date, she has recovered from the fundo surgery, but picked up a few bugs in the hospital during her 29 day stay there, so far. She has fought a few staff infections (one on her heart surgery incision, one in her eye, and another in her large intestine.) Currently, she is battling a few strains of pneumonia that she picked up at the hospital. They are being aggressive in her treatments of this infection. She is receiving breathing treatments every 2 hours along with antibiotics. We are hoping and praying that she will be able to continue to fight these infections. She is such a sweet baby and is very alert and willing to give you smile. We sure love her and are grateful that she's a part of our lives.

Family Photo: 7-30-06