update

I haven't updated in quite a while, as things are chaos around my house on a daily basis. Having two very busy toddlers leaves for very little time to sit in front of the computer and blog!! But hey No news is good news, because seems like the only time I am blogging is when we are in the hospital with some kind of ailment. Brooklyn is doing absolutely wonderful and hasn't been ill in over 6 months!!! This is amazing to us!! Now to just make it through flu season!! Her developmental progress is coming along slowly but surely!! With the help of multiple speech and OT therapy sessions a month. She is walking and running around everywhere, and getting into every thing she can!! Her speech is still very delayed do to poor muscle control, but she does very well communicating to us with sign language!! She has a very good sign vocabulary of about 50 words or more and is starting to use multiple signs together to communicate what she needs!! Such as "want more candy"(one of her favorites!!) and "cry baby"(don't know where she picked this one up?) She is growing so fast!! Still her baby sister is as big as she is actually bigger by a few pounds, and they often get mistaken for twins. The girls are 14 months apart but Brook is still very small for her age. She hasn't ever measured out of the 5th percentile. We are very proud of our little miracle baby and are enjoying every day of watching her grow and learn new things!!!

Home

Finally home from the hospital!!!!!! We were released yesterday. I had a good rest last night and did some much needed house cleaning today (as much as I could running from room to room so as not to leave Brookie alone by her self, because I am now paranoid again) Before these seizures it had been since the mid to end of last year since she had any seizures. I had started to relax and take for granted that her seizures were under control. I am now absolutely terrified that she is going to start having more. She is doing much better today she was still tired, but she did play a little bit. Her Echo cardiogram and EKG went very well and they said that she would not need to be seen for another 6 months!!! She was also followed by all of her other specialist while in the hospital and they all seemed to be happy with how she is doing!!! I want to say again thanks so much to everyone who prayed for our baby girl!!

more testing!!!!!!!!

We are still in the hospital, but are definitely going to be released tomorrow!!! The swallow study went great!! The hearing screening was a little concerning for me but the audiologist said that she wasn't worried a great deal about her hearing, and commented that she did only respond to the higher range of the spectrum and that could be caused by slight hearing loss. Brook was very distracted and we are going to repeat it again in 1-3 months. We have an Echo cardiogram and a EKG scheduled in the morning, then we should be free to go!!! I can't wait to go home and catch up on some MUCH needed rest!!!!!!!! Many thanks to every one for your prayers!!! The Biggest thanks to Alisha for all of the goodies!!! Much appreciation for my mommy and Two older sisters who helped out so much with my other kiddos!!!!

hospitalized due to seizures again

After what started as a 3 day tummy bug,we are now in the hospital again for the second time in 2010. Brooklyn had 2 seizures at home in a 12 hour period. We made the choice to bring her in to the hospital. Pulling in to the parking garage she had a seizure in the carseat. I pulled her out and we rushed in to the ER while she was actively seizing. While in the ER they tested her blood sugar and discovered that it was 42 very low. She was having light seizures "staring spells" about every 5-10 min that were lasting about 30 seconds a piece(during these she did not loose resperation). The nurses in the ER could not start an IV line (that she desperately needed), after sticking her 15 times they decided to send her up to the anesthesia department to have them try. When we made it up to the room she had another bad seizure. During this one I remember the nurse yelling "get a trachea tube kit!!" My heart sank all I could think was PLEASE GOD NO!!! I was terrified to say the least!! after the seizure ended, the doctor decided that it would be best to put her under anesthesia to start the IV line that she needed very badly. they took her away from us and I was so scared to just be away from her, and have no clue what was happening to her. The doctor walked out and I nearly ran at him to have him tell me that every thing went great (after all, they were only starting an IV). Things did not go great, the doctor said that it was horrible. While under heavy anesthesia she had 3 severe seizures and the only line that they could start was in a main vessel in her neck. (very scary to hear that your baby girl is having violent jerking seizures while a doctor is sticking a sharp object in a vital artery) They gave her high doses of glucose and anti seizure medications. He said that she did not have to have a tracheostomy. I burst into tears (tears of joy, tears of worry, tears of sadness, tears just because I could just handle no more) the doctor did something I needed most at that moment. He took my hand and started to say a prayer for god to keep our baby girl in his hand and to heal her little body. He also prayed for god to give me some much needed strength in this time. While sitting in the waiting room I just cried feeling so bad for my poor baby girl and that she was having to go through all of this. After she recovered enough we were able to go back and be with her, seeing her was was very reassuring. In anesthesia they monitored her for about 30 minutes then she was sent back to the ER, to wait for a room up stairs.

Today she is doing much better, the doctor even said that there was a possibility of going home tomorrow, but he wants to do a swallow study and a hearing screen. He also wants to address the low blood sugar issue with her endocrinologist, to make sure he isn't concerned that this will be an on going thing. The difference in her health from yesterday is absolutly AMAZING!! She is feeling much much better!!!

Stomach virus causes seizure.

Brookie has had the stomach virus for the past 3 days and has been trowing up every thing she eats and drinks (including her medicine). With out having her Calcium, Anti seizure, and heart meds she get even sicker. Tonight (march 5, 2010) Brookie was taking a bath with her little sister, and they were playing and having fun. I felt Brookie fall over and hit my arm while I was washing the baby. I thought that she had just lost her balance so i tried to sit her back up then I realized that her eyes were rolling back in her head and that she was not breathing and starting to become blue around her mouth, her body was very tense. She was having a seizure. I started to yell for Ben all while trying to calm Bryson (who has never seen her have a seizure) and reassure him that his baby sister is going to be okay. After about 3 minutes and Ben having to do some rescue breaths she came out of it. She is resting right now and we are going to watch her to make sure that she doesn't have anymore within 24 hours, and since it didn't last longer than 4 minutes they doctor told us that she didn't need to go to the hospital unless there was something else we were concerned about.

Hospitalized with bronchitis.

Sick With Bronchitis

Pulse ox

Sleeping during a breathing treatment

In January of 2010 we took Brooklyn to the urgent care center due to her having a fever, cough congestion, and runny nose. The doctor checked her oxygen level and said that she was dipping down in the 70's, and that she felt we needed to take her to the hospital to be monitored!!! We took her to wise county, where she received IV antibiotics and oxygen. They diagnosed her as having bronchitis and were released a couple of hours later. The next day brook woke up around 8:00 AM then fell back asleep & slept from about 10:00 AM to about 5:00 PM She had rapid breathing, fever, and same symptoms as the day before. She wouldn't drink anythink and I feared that she was going to become dehydrated. We decided to call the doctor to see if we should bring her back in. She reccommended that we take her to Cooks children's where all of her specialists are. We were there in a packed waiting room but only waited about 5 min. to go back, and they decided that we were going to stay. We were monitored for 3 days, and her fever broke, she was doing much better and we were released!!!

A mother of a "special" child

A mother of a "special" child

When I was young I'd often say, I'd like to be a mom someday

While playing with my baby doll, I thought that jobs not hard at all

I'd have a baby,maybe two, a girl in pink........ a boy in blue

I grew up and sure enough,

The baby that was sent to me, was born with disabilities

At first I'm frightened thru & thru, there is so much to learn to care for you

This wasn't in my plans at all, whenever I was young and played with dolls

Your mind and body were so weak, you might not ever walk or speak

So much special care required, I'm often scared and often tired

As months and years go slowly by, I often smile but sometimes cry

To watch you grow and not complain, though you endure your share of pain

Oh how I'd hold you and I'd pray,that you'd be healed and whole someday

But I know that was not to be, not physically or mentally

And so I taught you best I could your progress slow but very good

But then one day I realized, as I gazed into your loving eyes

That I had learned so much from you, determination....courage too

A love so unconditional, it floods my soul and always will

I'm proud to say I gave you birth, for your an angel here on earth.

Author unknown

BIG Little sister!!!!

Me and the girls!!!

Bath time babies!!!

Brooklyn 16 months & Brandi 2 months!!

The girls are 14 months apart but are very close to being the same size!! Brandi is catching up with Brooklyn so fast!! Their last measurement on February 8, 2010 Brooklyn @ 19 months was 30 inches, and weighed 18 pounds 4 ounces. Brandi @ 5 months was 27 inches, and weighed the exact same at 18 pounds 4 ounces!!! I was so shocked that they weighed the same!!! Brookie is still in the lead by 3 inches but, baby sister is catching up very quickly!!! So we now refer to Brandi as "The BIG little Sister."

Becoming a big sister!!!!!

First picture of all three of my beautiful babies!!!

Brandi Nicole Strahan

Brandi Nicole 1 month & Brooklyn Aliyah 15 months

The new Big Sister!!!!

The approaching time of the baby's birth was a very anxious time for me. I was worried how Brookie would take to having a new baby in the house, and how we would manage having a new baby and having brook who is so very demanding, to say the least. Brandi Nicole was born September 7, 2008!! She weighed 7 pounds 11 ounces, and was 21 1/2 inches!!! It was very different than Brookie's birth. I had a second C-section due to risk that go along with having a natural delivery after having a previous C-section with Brook. Brandi was a beautiful, pink, healthy baby!!! She looked like a lil' butter ball compared to Brookie when she was born!! Brookie was at the hospital whenever she was born and stayed in the hospital with Ben and I during the hospital stay!! She has only ever been away from me for a couple hours whenever I had to go to the hospital early on in my pregnancy with Brandi, due to severe cramps and bleeding. We don't let her stay with any one else due to all of her medical problems, I would be a nervous wreck!!! She did very well at first when the baby was very small and didn't really do much. Now that the baby sits up and plays she will sometimes hit and pinch her, but I don't think that it is her way of being mean. She does this to Ben and I, and it seems like more of an impulsive behavior. She is my little mommy hen and tried to "help" with the baby!!! She will give the baby her bottle, or take it from her!! She tries to shove her pacifier in the babies mouth whenever she cries, even though the baby never took a pacifier!! And she will give her kisses!! Over all I would say that she is happy to be a big sister, and loves the new baby!! I do feel like it will be beneficial for brook to have a sibling so close in age, due to her developmental delays.

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.