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.