Wednesday, December 25, 2013
1st Family Photos!!!!
Here's a quick post to share our family Christmas Photos!
The whole Family!
The Montgomery Side!
Nic with us!
Nic's solo shots!
Tuesday, December 10, 2013
Duke!
Nic and Dad shared their first flight together. Both did great! The flight attendant gave both of them Delta wings!
Nic checked into Duke upon landing and was cleared for her infusion. The day before the procedure, we took Nicolette to the Duke Cathedral. It was beautiful and everyone on the campus was so kind. Nic proved to be a true Jayhawk and actually threw up on dad and the floor once inside!
The procedure went as smooth as could be... once they got the IV in a vein. It turns out, multiple hospital visits lead to veins that are really hard to get into. After five attempts, the Doctor place one in her scalp. I guess the upside is the cells had less of a journey to get to where they need to be to repair brain damage. Nic used all her cells. Another procedure is not possible.
The next day, Nic discovered her hands! She has been feeling EVERYTHING nonstop ever since!!! Nic, Dad and I ask you to help us continue to cover the bill. Medical costs are really REALLY high. Her NICU bill alone was 131,000. She is totally worth it!!
The procedure went as smooth as could be... once they got the IV in a vein. It turns out, multiple hospital visits lead to veins that are really hard to get into. After five attempts, the Doctor place one in her scalp. I guess the upside is the cells had less of a journey to get to where they need to be to repair brain damage. Nic used all her cells. Another procedure is not possible.
The next day, Nic discovered her hands! She has been feeling EVERYTHING nonstop ever since!!! Nic, Dad and I ask you to help us continue to cover the bill. Medical costs are really REALLY high. Her NICU bill alone was 131,000. She is totally worth it!!
Tuesday, December 3, 2013
Happy to report Nicolette is meeting all but one...
Happy to report Nicolette is meeting all but one developmental milestone for a two month old baby! We are still working on vision!
Friday, November 29, 2013
Children's Mercy Round III.....
We are so blessed to have been able to spend Thanksgiving with our family. The next day, it was apparent that Nicolette's shunt wasn't working. We rushed back to the hospital, and Nicolette went in for three major and one minor procedures (e.i., ETV, CPC, Fenestration, and a shunt revision).
During surgery, the surgeon was shocked and excited to see her brain "relax" and shift into the "normal" positioning. MRIs showed her brain had tripled in size! Here are the updated MRI images; the left is post op and the right is at birth.
Nicolette is still recovering... but it looks like there just may be fewer shunt revisions in her future! AND THAT would truly be a blessing (Hugs)!
Wednesday, November 20, 2013
Children's Mercy Round II
Nicolette had her first post op check up on Tuesday. There were several concerns. A 5-hour appointment and multiple ultrasounds later, it was discovered that her valve on her shunt had stopped working and the pressure in her head was higher than it had been prior to surgery. There was also free floating fluid in her stomach that suggested she wasn't absorbing her CSF. After some discussion, it was decided that it was time to go back to surgery.
And she rocked KU colors all the way home a week later.
After waiting four hours for a room and comforting a very grumpy, very hungry baby, Nicolette went into surgery for three hours. Her valve was replaced, her shunt put back into her body (amazing news-we were scared they would have to externalize it), and her fluid sent to the lab (it was colored which was concerning). Her breathing before and during surgery was shallow and abnormal. Because of this, the team decided to send her to PICU to monitor her overnight. We are hoping to go home Friday.
We got to visit her after surgery. She was all smiles and high as a kite. Still cute as a button though! Her strength amazes us every day. What a fighter! What a trooper!!! Did I mention she is adorable?!
We got to visit her after surgery. She was all smiles and high as a kite. Still cute as a button though! Her strength amazes us every day. What a fighter! What a trooper!!! Did I mention she is adorable?!
And she rocked KU colors all the way home a week later.
Monday, October 21, 2013
Personal Note
I thought I would post a picture of Nicolette's dad and me prior to knowing Nicolette's condition. When we found out we were expecting, there was so much joy. Joy to make a little person that no two other people in the world could possibly make. Joy of knowing we could raise this little person to be anything she wanted to be. And there was also fear, fear of not knowing if we would be the best parents. Fear of knowing that she would fail at times, be hurt at times, maybe not have a date to prom at times, and maybe be lost a little at times. We had faith that our love for each other would transfer to this little person and that would have to be enough. Isn't that much much more than what some kids have?
When we found out she had an abnormality in her brain development, we were crushed. After reading everything I could get my hands on, we realized that she would always have special needs. This wasn't a condition that would ever "go away". Maybe she would be lucky enough to have mild delays, maybe the world-for whatever reason-would rest her on the profound end of the spectrum. As a SPED teacher, I finally realized what each parent in my room had to realize at some point.... the death of a dream. Nicolette may never go to prom, may never understand what prom is, may always medically hurt and worse may never have a concept of failure let alone experience it for herself. The death of a dream is profound and should be mourned. That right was also taken from us. Almost every doctor told us she would die at birth and to be thankful because if she was to live "her quality of life would be so altered, so grim, that death would be a blessing". We were urged to end our pregnancy. We searched for months and surround ourselves with a helpful but knowledgable specialist, a compassionate OB to manage care in Wichita, a very skilled OB to deliver her in KC (who managed to give me a regular c section!), a compassionate neonatologist, and a very skilled, very sharp, top ranked neosurgeon. We never asked why we were selected to have this special child, just how we could prepare and be the BEST parents for this child. We have never looked back.
I attached pictures of us holding her. I wish everyone that visits this page could feel the joy she brings to our lives. The thought of not having her in our family brings tears to my eyes. She is perfect. I personally still have fears. There will be failure and hard times. There may be a day when she realizes she is different, when she is treated cruelly for being different, or perhaps will be mad because she is different, but I know we will love, shelter (when possible), care for and support her every step of the way. Everyone who has visited this page, shared this site, or donated has helped us do just that, and words could never express the sincerely of gratitude that we feel for that help. From the bottom of our hearts, we thank you.
-The Montgomerys
When we found out she had an abnormality in her brain development, we were crushed. After reading everything I could get my hands on, we realized that she would always have special needs. This wasn't a condition that would ever "go away". Maybe she would be lucky enough to have mild delays, maybe the world-for whatever reason-would rest her on the profound end of the spectrum. As a SPED teacher, I finally realized what each parent in my room had to realize at some point.... the death of a dream. Nicolette may never go to prom, may never understand what prom is, may always medically hurt and worse may never have a concept of failure let alone experience it for herself. The death of a dream is profound and should be mourned. That right was also taken from us. Almost every doctor told us she would die at birth and to be thankful because if she was to live "her quality of life would be so altered, so grim, that death would be a blessing". We were urged to end our pregnancy. We searched for months and surround ourselves with a helpful but knowledgable specialist, a compassionate OB to manage care in Wichita, a very skilled OB to deliver her in KC (who managed to give me a regular c section!), a compassionate neonatologist, and a very skilled, very sharp, top ranked neosurgeon. We never asked why we were selected to have this special child, just how we could prepare and be the BEST parents for this child. We have never looked back.
I attached pictures of us holding her. I wish everyone that visits this page could feel the joy she brings to our lives. The thought of not having her in our family brings tears to my eyes. She is perfect. I personally still have fears. There will be failure and hard times. There may be a day when she realizes she is different, when she is treated cruelly for being different, or perhaps will be mad because she is different, but I know we will love, shelter (when possible), care for and support her every step of the way. Everyone who has visited this page, shared this site, or donated has helped us do just that, and words could never express the sincerely of gratitude that we feel for that help. From the bottom of our hearts, we thank you.
-The Montgomerys
Monday, September 23, 2013
Pregnancy is a BEAST, A Hydro pregnancy is the gift from hell that keeps on giving (Part 1)
The only thing I remember about pregnancy weeks 1-20 was how sick I was. I literally had days I would lay in my bed and turn to throw up in the trashcan. In hindsight, that may have been indicative to the rough road that lay ahead for me and my husband. The only thing that got me to week 18 was the excitement of finding out our baby's gender. The 18-week ultrasound was life-changing. At first we got the typical, "Here are the arms. Here are the legs." Suddenly, the tech sat for 30 minutes looking at the head; she said nothing. Finally, we got a quick, "It's a girl" and were rushed out of the office. Hmmmmm, what?
For two weeks, we convinced ourselves that everything was fine and shared the gender with our family. We even picked a name, Nicolette Danielle. Nicolette for me and Danielle after my sister and best friend. Even more interesting was the combined meaning of her name, Victory of the people and God is my Judge; Two very strong names for a baby that was fated to be stubborn and headstrong if she inherited any ounce of her parents. Finally, the doctor's office called to report an abnormality in the scan. I pushed for clarification. "There's something wrong with her brain." Our whole world changed. Nicolette was diagnosed with severe unilateral Hydrocephalus, a condition in which the brain cannot properly drain the Cerebral Spinal Fluid and thus, creates enlarge ventricles and increased inter cranial pressure. The condition is best described in Michelle Higgins blog (http://www.fetalhydrocephalus.com/hydro/Default.aspx). We were referred to Dr. Margaret O'Hara at Maternal Fetal Associates of Kansas. She turned out to be a compassionate, strong, knowledgeable and practical doctor who's knowledge and tactful delivery of Nicolette's condition paired with known statistics ending up giving us the strength to proceed with the pregnancy and meet Nicolette in October.
Nicolette's condition progressively worsened over time. Her measurements followed a bittersweet progression, bitter because they grew studiedly and sweet because the growth was predictable.
I have attached a table of venatical measurements. I'm including them because I figure, if you found this blog and you're not a family or friend, your unborn child received the same diagnosis. I want to caution you, ventricle measurement and head circumference do not predict outcome. Furthermore, Nic's Hydro is secondary to her Cyst, but hopefully, these measurements give you something to compare your child's measurements to and can give you some kind of peace.
At 24 weeks, we opted for a maternal-fetal MRI completed at Wesley Medical Hospital in Wichita, Kansas. Cevin and I went and ate at Cracker Barrel, a personal favorite. We promised each other we would do something fun and normal with each major doctor's visit. This helped over the course of the next 13 weeks, especially because the news regarding Nic's dx continued to get worse and worse. Back to the MRI, the process was grueling; my vomiting never went away. I had the reincarnation of nurse Rachet! I threw up repeatedly in the machine, and sat in it hoping the results would somehow help my daughter. After an hour, I needed the imagining. The results we did collect terrified the staff. We were told her brain was "incompatible with life" and "I'm so sorry; it would be best to get genetic counseling and try again later". To make matters worse, the tech told my husband I still had two hours, so while he went to get us sodas, I was told to abort my unborn child. My husband found me bailing uncontrollably and wondering around the hospital parking lot like a mad woman. This was the worse day.... But we carried on, and upon reviewing the results with Dr. O'Hara, I asked the best question we asked the entire pregnancy, "What would you do if this was YOUR child?" Her reply I honestly believed saved Nic's life again, and again, and again. She grabbed my hand, looked me straight in the eye, and said, "I'd go to Children's Mercy, and I wouldn't look back."
End of Pregnancy, Part I... (Nic is over her baby gym time)!
For two weeks, we convinced ourselves that everything was fine and shared the gender with our family. We even picked a name, Nicolette Danielle. Nicolette for me and Danielle after my sister and best friend. Even more interesting was the combined meaning of her name, Victory of the people and God is my Judge; Two very strong names for a baby that was fated to be stubborn and headstrong if she inherited any ounce of her parents. Finally, the doctor's office called to report an abnormality in the scan. I pushed for clarification. "There's something wrong with her brain." Our whole world changed. Nicolette was diagnosed with severe unilateral Hydrocephalus, a condition in which the brain cannot properly drain the Cerebral Spinal Fluid and thus, creates enlarge ventricles and increased inter cranial pressure. The condition is best described in Michelle Higgins blog (http://www.fetalhydrocephalus.com/hydro/Default.aspx). We were referred to Dr. Margaret O'Hara at Maternal Fetal Associates of Kansas. She turned out to be a compassionate, strong, knowledgeable and practical doctor who's knowledge and tactful delivery of Nicolette's condition paired with known statistics ending up giving us the strength to proceed with the pregnancy and meet Nicolette in October.
Nicolette's condition progressively worsened over time. Her measurements followed a bittersweet progression, bitter because they grew studiedly and sweet because the growth was predictable.
I have attached a table of venatical measurements. I'm including them because I figure, if you found this blog and you're not a family or friend, your unborn child received the same diagnosis. I want to caution you, ventricle measurement and head circumference do not predict outcome. Furthermore, Nic's Hydro is secondary to her Cyst, but hopefully, these measurements give you something to compare your child's measurements to and can give you some kind of peace.
At 24 weeks, we opted for a maternal-fetal MRI completed at Wesley Medical Hospital in Wichita, Kansas. Cevin and I went and ate at Cracker Barrel, a personal favorite. We promised each other we would do something fun and normal with each major doctor's visit. This helped over the course of the next 13 weeks, especially because the news regarding Nic's dx continued to get worse and worse. Back to the MRI, the process was grueling; my vomiting never went away. I had the reincarnation of nurse Rachet! I threw up repeatedly in the machine, and sat in it hoping the results would somehow help my daughter. After an hour, I needed the imagining. The results we did collect terrified the staff. We were told her brain was "incompatible with life" and "I'm so sorry; it would be best to get genetic counseling and try again later". To make matters worse, the tech told my husband I still had two hours, so while he went to get us sodas, I was told to abort my unborn child. My husband found me bailing uncontrollably and wondering around the hospital parking lot like a mad woman. This was the worse day.... But we carried on, and upon reviewing the results with Dr. O'Hara, I asked the best question we asked the entire pregnancy, "What would you do if this was YOUR child?" Her reply I honestly believed saved Nic's life again, and again, and again. She grabbed my hand, looked me straight in the eye, and said, "I'd go to Children's Mercy, and I wouldn't look back."
End of Pregnancy, Part I... (Nic is over her baby gym time)!
Subscribe to:
Posts (Atom)