Monday, June 22, 2009

Brooke's first fathers day

Yesterday was Mike's first father's day with his little girl. Mike began the day going jogging with Evan and Zac. Unfortunately Zac tired out, leaving Mike and Evan to finish their race. Then the three "men" went to the driving range. The six Z's met up to have lunch at my parent's house. All the cousins were there, keeping each other busy.

Tuesday, June 16, 2009

Our return visit to CHOP

Mike, my mom, myself, and of course Brooke made our way back to Phili yesterday. It was strange to be back in a place I spent three of the longest days of my life. The cyst has remained the same size and must be removed. They still think the mass is benign, but can not be sure until it is removed and analysed. Surgery is scheduled for July 10 at CHOP. She will stay for a few days depending on how the surgery goes, and how quickly she recovers.

I think this brings everyone up to date. Mike and I feel very blessed to have four happy and overall healthy children. Brooke is doing well otherwise.

I am reminded every time I set foot in CHOP how blessed I am. Many of the children I see when I am there are far more ill than Brooke, and face a lifetime of challenges ahead of them. I have faith that God placed Brooke on this earth for a reason, and her future has not yet been revealed to me. I also, mostly, maintain my positive attitude that, "everything will be OK."
Brooke's first month of life has been a gift to us all. Her brother's absolutely adore her. They hold, hug, and kiss her about twenty times a day! As for me, the words, "my daughter" still make me smile- although now that I think about so do the words "my son" and "my husband." Mike is hoping she will have blue eyes- like his, which are crystal blue. I'm not so sure... She is happy (most of the time), eating very well and getting big! When she was born she weighed 7 lbs. 10 ozs., a week and a half later she was 8 lbs 10ozs. I'm not sure her current weight, but she must be over 9. At night she wakes up every three hours to eat, but usually goes right back to sleep. Her health remained the same, not much updating to do, until yesterday June 15. This was the day we returned to CHOP to have her ultrasound repeated and to meet with the surgeon. I'll update yesterdays info on the next post... duty calls.

Moving on

Once we arrived at CHOP, my sister and I stayed with Brooke as she settled in to the NICU. By this point she was looking very yellow in tone, and was becoming jaundice. This occurs when high levels of a pigment in the blood called bilirubin cause the skin to look yellow. When old red blood cells break down, one of the byproducts they create is bilirubin. Everyone's blood contains bilirubin, which is normally removed from the blood by the liver and then eliminated in the stool. The doctors think that my blood type being B and all of my children being AB, has caused my body to build up 'A' antibodies which caused Brooke's condition— so the pigment built up in her blood and her skin looked yellowish.

To help bring her bilirubin count down the dr's use phototherapy. Brooke was placed under blue "bililights" lights — naked in a bassinet, with her eyes covered. Due to this course of treatment we were not allowed to hold her, with the exception of when she was breastfeeding. Brooke needed to spend as much time under the lights as possible.

CHOP was very accommodating and found my sister and I room for the night. The next day the Dr.'s performed another ultrasound which was reviewed by the surgical team. They were still unsure of the origin of her cyst and ordered an MRI for the next day.

My sister finally was relieved by my parents (who were taking care of Logan), who were then relieved my Mike- who had been caring for the big kids and also working. I spent that night @ CHOP on my own, struggling to stay with Brooke, yet be there for my other children. The next day Brooke's bilirubin finally dropped low enough for the Dr's to order the lights taken down. Finally she could be held. The MRI was this day as well. Brooke was sedated for the procedure- as she would need to be perfectly still. That night I left Brooke at CHOP and returned home for the first time since giving birth. It was nice to see the boys and give them all a hug! The next morning I could not wait to get back to CHOP, this day my dad was on duty again. We got there around 9 am. The surgeons reviewed the test and decided the cyst continued to present as benign. They released Brooke and requested she return in 4 weeks for a repeat ultrasound and to meet with the surgeon. She needed to remain there for the day in hopes her jaundice would continue to improve befor the NICU dr.'s would release her. Her final bilirubin count was down, and the NICU Dr.'s decided at 6:00pm that they would allow her to go home. My Dad happily drove us home. I was amazed that I finally was able to dress this little one. She actually looked like a girl in pink!

Monday, June 15, 2009

Playing catch up...

I decided to create this blog to keep our family and friends up to date on Brooke and some of the problems we have been faced with.

Just to catch you all up... when I was about 7 months pregnant I had an ultrasound which revealed that Brooke had, what appeared to be a cyst. The Dr. told us not to worry too much, that these things usually were caused by the mother's hormones during pregnancy and once she was born- it would most likely go away on its own. I didn't pay much attention and assumed things would work themselves out. About a month later I had another ultrasound which showed the cyst had grown. It still appeared benign. The Dr. still assured me that things would be fine and she would have an ultrasound of her own after birth. Her pediatrician assured me as well that it would most likely go away and even if it did not, surgery would be more likely after she was six months old and better able to handle the procedure.

I was induced at 38 weeks due to her cyst and what we thought was her large size. Brooke was born on May 15, 2009 at 3:28pm, weighing in at 7 lbs. 10 ozs. She appeared perfectly healthy. The neonatoligist evaluated her and was unable to feel the cyst. She also assured us that she had never seen a baby in her case require surgery and it would...again...most likely clear up on its own. Brooke's ultrasound was scheduled for May 17, the day we would have been going home. My discharge was complete. I was packed, dressed, car seat ready, and waiting for Brooke's pediatrician, Dr. Q, to complete her discharge papers. Mike and the boys left the room to get some lunch. While they were out, her Dr. came in and sat down... I knew things could not be good. Dr. Q stated that the cyst was very large and she just could not discharge Brooke without follow up to learn more about it. She offered to send Brooke to either Jersey Shore Medical or Children's Hospital of Philadelphia (CHOP). I asked Dr. Q where she recommended and she stated that CHOP was the best, so the decision was made. We waited all day to learn when and how Brooke would be transported (there was a chance they would take her by helicopter, simply due to the fact that this is a method of transport they often use). At 6 pm we found out that an ambulance would be leaving CHOP shortly to take Brooke to the NICU. She was hooked up to an IV and monitors, for the journey. I stayed with her until she was ready to go. My sister drove me to CHOP...about and hour and fifteen minutes. We got there about 11pm.