My Big Girl!!!

Birthday girl!!!!

Opening birthday gifts!!

Brookie turned one in July of 2009!!! This was a very welcomed birthday that we were so very happy to celebrate. So for my baby girls birthday I had her a fairly big party!!! It was not that great of a day for Brookie. She was very anxious, and wasn't happy unless Ben or I were holding her. She did however enjoy the cake and ice cream that her poppie fed her, & had fun trying to open presents!! And she looked so adorable in her little birthday outfit that I made for her!!!

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)

in the NICU!!!

The first couple days in the NICU were very tough for her. She was seen by every specialist imaginable. Her oxygen sats. were usual in the low 70's to the highest being 78. during feeds she would drop them very low and turn a dusky bluish color. most every thing that she ate (pumped breast milk) would come shooting back out of her nose in high volumes(very traumatic to see). They had to basically force feed her to get her to eat she would try to suck the bottle but would get tired after about 10 milliliters , and start gagging and choking. She developed a cough and they told us that it could be due to her aspirating her formula during eating or the nasal vomiting. The doctors decided to do a swallow study and determined that she was aspirating, due to her inability to suck, swallow, and breath all at the same time. They decided that it would be best to feed her through an ng tube so that she would at least get some food in her. Cardiology had examined her daily and confirmed the tetrology of fallot diagnosis we received while pregnant. We were told that she had, had them all scratching their heads trying to make since of her echo, but they later discovered a very large Ventricular Septal Defect (a hole between the bottom 2 pumping chambers of the heart), an Atrial septal Defect, a right sided aortic arch, and a very small under formed pulmonary artery, and a possible esopheogial ring (wher the arteries coming out of the heart loop around the esophages). It was decided that they would be able to wait until she was a little bigger to perform her open heart surgery. However she did have to have her first surgery at 3 weeks old to fix a hernia, and place her G-button (feeding tube). after a week recovery from surgery she was considered to be well enough to go home with us (one day before her 1 month birthday ). We had to stay 2 nights in the NICU just learn how to care for our baby girl, and take a CPR class. We were happy, excited and TERRIFIED all at the same time.

Brooklyn Aliyah Strahan 7/9/2008, 5lbs. 15oz., 19in.

Happy Birthday!!!

After being on bed rest and medication to stop pre-term labor (due to more than double the normal range of fluid causing stresson my uterus) since about 7 1/2 months, i went to the hospital at 36 weeks having contractions. They kept us for a week trying to stop labor and on July 9th,2008 my doctor decided that today was the day for us to bring our little baby girl into the world by c-section.

I remember the room was full of doctors and nurse and everything went so quickly. Brooklyn was Born Weighing in at 5 pounds and 15 ounces, and she was 19 inches long. We saw her VERY briefly before she was rushed to the NICU. They did how ever wheel the bed down thru the NICU so I could look at her for a couple minutes(I guess since they figured it would be a while before I would be able to get up and go down there to see her). The first thought I had was Oh MY she is soooo tiny, and WOW its amazing how much a little girl can look like her daddy!!

This is Brooklyn in my Tummy!!!!

receiving our diagnosis!!!

When I was pregnant with Brooklyn, at my 20 week check up I was told that we had the option to do a blood test called the quad screen to test for risk of genetic defects such as neural tube defects, trisomy 21, 13, & 18. Thinking that of course there was absolutely nothing wrong with my baby girl we agreed. Not thinking much more about the test I received a call from my OBGYN stating that I need to see a high risk Ob doctor and speak with a genetic counselor to discuss the results of our quad screen.

The genetic counselor explained to us that our results were for high risk of a chromosome abnormality called Trisomy 18, this is when 3 copies of chromosome 18 are present. She went on to explain that T18 is considered to be "Not compatible with life." and that most babies with T18 don't make it to Birth and if they survive birth it is not likely that they will live more than a couple hours, maybe days. Doctors will perform no measures to save these babies lives.

We were devastated to say the least. She told us that a High resolution ultra sound would be able to tell us more and get a more definite answer. During the ultra sound I remember asking the sonographer if every thing looked to be normal, she said "I can not say the doctor will be in to discuss the findings with us in a moment. " The doctor said we believe that your daughter has a heart defect called tetrology of fallot this further confirming the possibility of a genetic defect. She explained that we could do an amniocentesis to get a 100% diagnosis of a genetic defect.

We agreed to do the amniocentesis and I remember waiting for the results seemed like such a LONG wait my husband an I were both so anxious. As we both listened on the phone receiver, we heard "your amnio test results were NEGATIVE!!! for Trisomy 18 (I could have jumped through the roof) then I heard the genetic counselor say BUT, Your daughter's results for a test called FISH came back positive. This means that your daughter has Velo-cardio facial Syndrome (VCFS) a deletion of a portion of the 22nd chromosome. "

Having absolutely no clue as to what this was I started to Google like crazy, trying to find out everything I could!! To be the second most common genetic defect (1 in every 2000 births) my husband and I, along with all of our family had never even heard of it.