Surgery

Brook's tube sight never closed on its own and they told us it was no big deal, and they would just go in and close it surgically!! In the mean time with so frequent ear infections we were advised by her pediatrician that she would need to have tubes put in and beings that she was going to have the tube site closed that would be a great time to do both. After seeing a ENT and coordinating the surgeries for the same time, and being cleared to do the surgeries by cardiology and neurology. we went a head and had the surgeries done. Since this surgery She has been doing Great!!!! Only one ear infection in 4-6 months (this was great compared to every 3 week)!!!!

Hospital Pics due to seizures!!!

Almost back to 100% after being in the hospital for a week!!!!

Being care flighted to Scott & White after having her second seizure.

Resting after having 2 seizures in a 4 hour period.

During the video EEG She was not happy at all!!

Scary new Symptomes

After having Brook's feeding tube removed we ended up having to go out of town for business. While in Sommerville Brooklyn got sick and started vomiting after every feed. She got a low fever and was very lethargic. Worried, but not panicked because this had happened on other occasions, we decided that she was okay that we would treat the fever with Tylenol and Motrin to keep it down (never got over 99.4). At around 7:30 she was sleeping on my chest, she began to squirm a little and I thought she was just waking up. Her body tensed up and started lightly jerking. She was gasping for air but could not get a breath. I screamed for my husband while running through the house "Something is wrong with Brook, she is not breathing!!!!" I was absolutly terrified!! By the time that found my husband she was purple and had went limp in my arms. My husband (Ex-state trooper and always calm) yanked her from my arms laid her on the floor and began trying to feel for a pulse, not finding one he began to do CPR. While a friend called 911 in a panic. After about 3 1/2 minutes of being unconscious with no signs of life I heard my baby girl start weakly crying just as the paramedics came in. They took us to the hospital where we ended up staying the night. Doctors told us that her calcium level was fine and that she had a febrile seizure (not likely at 99.4). They also told us that seizures were not related to VCFS , and that she would more than likely never have another one. Well, they were WRONG!!! about a month later the same thing happened and she was care flighted to Scott and White hospital in Temple, and while in the ER she had another seizure (2 within a 4 hour period) we ended up staying there about a week. They did every test imaginable but could find no reason for the seizures except to say she had a seizure disorder with epileptic tendencies. She was released from the hospital on a seizure medication and a vitamin B6 (to help with the side affects of the seizure medication). we had one more seizure where we were taken by ambulance to the hospital and they gave her a stronger seizure medication. After my poor little girl going through 4 seizures and having to be revived, we for at the moment seem to have figured out her dosage and medication!! Her last seizure was Spring of 2009 so from a neurological stand point we are stable for the time being!!!

4 Months to 6 Months!!!!

Playing in her Bouncy chair!!

Playing with her toys!!!

Brookie before her button was removed!!

After Brooklyn's heart was fixed it was like we took a completely different baby home. In the hospital the doctors repeated her swallow study and said that they felt that she could start feeding by mouth some. We had to thicken her formula quite a bit though. She had so much more energy and loved to play. It was amazing to see her looking so much healthier!!! We did have lots of ear infections and upper respiratory infections and were on antibiotics so frequently that some of them became ineffective. By the time we reached 6 months Brooklyn was pretty much taking all of her feeds by mouth and the only time the button was used was when she was given medication (because she left the hospitial on 6 different medications). After working hard to convince the doctors that she did not need the button any more they finally removed it!! The doctor told us that there was no need to close it that it would more than likely close on its own.

Fixing her broken heart!!!

3 days after surgery and still very swollen

Right out of 8 hour surgery (very swollen due to being on bypass)

At almost 4 months old Brook's cardiologist told us that she was now big enough, and that it was time to fix her heart. Her heart diagnosis was tetrology of fallot (VSD, Pulmonary valve stenosis), right sided aortic arch, and possible vascular ring. The cardiovascular surgeon explained to us that if there was a salvageable valve that this would be her only surgery, but if it was unusable they would just have to cut it out.

On October 21, 2008 she under went an 8 hour surgery to repair her heart. During our consultation with the surgeon right after the surgery we were told that there was no vascular ring as previously thought, but they were unable to save the valve so they will have to do another surgery to replace the valve later in life(because there was nothing that they could put it that would grow with her).

Seeing our baby girl after surgery was very shocking and scary!! Absolutly nothing can prepare you to see your child like that. On the up side my normally dusky blue baby was the most beautiful shade of pink!!!!!!! Her O2 sats were 99% when we first saw her(big difference from usually being in the low 70's)!!!

Her cardiovascular surgon Dr. tam was so amazing to be able to partially fix such a tiny little heart inside a little bitty baby girl!!! We are so thankful for the great team of cardiologist, cardiovasular surgeons, every one in the OR, and all of the great doctors and nurses that cared for our sweet little angel while at cooks children's hospital!!!

first weeks!!

Brooklyn & her big brother Bryson (who absolutly adores her!!)

The first weeks at home were very akward. Although Brooklyn was my second baby it was compleatly different caring for her. I had to pump breast milk because she could not eat anything by mouth, clean all of her tubes, clean her tube site, and learn how to use a machine to feed her, on top of all of the "normal" things that you do to care for a baby. things were very busy the first couple of months with doctors visits (sometimes up to 6 in a week), making sure that prescriptions stayed filled, and trying to keep her from getting sick!! We saw a variety of specialist including a cardiologist, endocrinologist, Infectious disease (to regulate her immune system), genetics, and pediatric surgery, and her pediatrician. With in the first 3 weeks at home she ended up with her first ear infection (and by the time she finished antibiotics a week would pass and another ear infection). I was very worried about how her brother Bryson would take to not being the center of mommy's whole world whenever she came home from the hospital. I was so happy to see that he welcomed her and was happy to have his baby sister at home. After her spending a month in th NICU we were all so thrilled to have her home to be able to hug and kiss and love on her all the time.

Pictures of Brooklyn while she was in the NICU.

First Surgery 3 weeks old (G-tube insertion)