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#HopeForHopie Hope N.
Jun 14, 2017
Hi, and thanks for visiting Hope's site. We wanted to have a place for you to read up on all of the updates on Hope Elizabeth. We'd appreciate all the prayers you can give for Hope and our family...
Hope was born on March 19, 2007 at 11:16pm at Northwestern Memorial Hospital. After a long time of being "stuck" for over 2 hours, Hope finally came into this world. Immediately there was confusion as we noticed that there was something wrong with her hands. Her fingers had failed to separate and her toes were webbed. On top of it all, Hope's sutures on the sides of her skull prematurely closed well before she was born, which left her with a tall head and sunken brow.
Throughout our pregnancy, starting at the 20 week ultrasound, the doctors were suspicious of certain anomalies of her brain. They suspected that her corpus callosum might be missing, and her ventricles were enlarged (which might mean hydrocephalus- water of the brain) The corpus callosum is a wall between the right and left hemispheres of the brain. We were extremely worried because they say it is unknown what degree of mental functioning may be affected if there is a variation in the corpus callosum. Yet many medical professionals state that many patients come in to the hospital to have an MRI done of their brains due to head trauma, etc... and it is found that they do not have corpus callosums... and they are healthy, well-functioning people.
So from there, I had to go for an MRI of Hope while she was still in utero. And throughout the rest of the pregnancy, I was being followed closely with ultrasounds, as they monitored Hope's brain structure. In the end, they concluded that Hope's ventricles are indeed of normal size, and her corpus callosum is present, yet "thin".
Because of what they had prenatally suspected, the doctors wanted Matthew and I to agree to genetic testing. We declined as it was already decided that it didn't matter what might be wrong... we were going to keep our baby. So on the night of delivery, the pediatric neurologic staff at Northwestern was on standby and when Hope was born, they wisked her away.
It was a heartbreaking experience, as I was not able to hold her in my arms until 4 hours later. They brought Hope for a visit... she could only stay for 30 minutes, before they took her back to the NICU. And the next time I saw her was at 9:30 the next morning, when the Children's Memorial Hospital transport team brought her to my room to say goodbye. For the next 24 hours, Hope was admitted into Children's Memorial, and I had to stay at Northwestern. Hope stayed at Children's Memorial for 5 days.
I have to say that our experience, although devastating, was made easier by all the nurses and doctors at both Northwestern and Children's. They were so kind and compassionate to us and they never looked at Hope as anything other than a precious baby.
After all testing was done, it was discovered that Hope had a rare syndrome called Aperts. It affects 1:160,000 births. My doctor tells us that had we agreed to genetic testing, Aperts would have been missed unless they were specifically looking for it. So it was probably best that we declined the testing as it would've come back with a clean bill of health. Fortunately, the only complications Hope has are her fused fingers, webbed toes and misshapen skull... all which are fixable. Aperts kids can have so much more complicated issues, such as heart and kidney problems, cleft lips, respiratory issues...
Hope will be undergoing her first series of surgeries on August 17 at Children's during which they will open her fused skull and move her orbital rim forward to give her a brow (to protect her eyes). The plastic surgeon also wishes to release her pinkies, which was a nice surprise to us, as we were initially told they usually wait until 1 year to begin reconstructing her hands.
Hope is a fighter. She knows what she likes and doesn't like and has NO problems letting you know. She has brought such a different perspective to our family with our thoughts and prayers, our hopes and beliefs. We know she is going to change all of us for the better. God sent her to us for a reason... and after all has been said and done, we'd never send her back. She is adored by big brother Cohen and spoiled by big sis Adira. She's our little Hope, and we hope you 'll love her as much as we do.