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.

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 www.mic-key.com 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.

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!

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.

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!

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