Rileys Road to Cranio Recovery

On February 20th 2016, my husband Mike and I welcomed the most precious little 8 pound 2oz girl into our family of three, joining her 2 year old brother Michael. From the moment she was born my husband noticed her left forehead was indented and eye slightly closed. We brought this to the attention of multiple doctors and nurses while in the hospital who all told us she would grow into it. At that point we were thrilled our new-born baby would be okay! We saw her pediatrician 3 days after she was born and brought it to his attention also, since the indent had not improved. But once again were told “she was just born and it will grow with time”. Everything was good for the first 2 months. Then, on April 21st for her 2 month checkup, the Doctor noticed her head had not improved as they originally thought. He examined her for a while and it was then he brought me into his office with Riley to give me the news that our little baby girl has craniosynostosis, and the only cure to fix this would be with surgery. At that moment, time just stood still. I broke down. How could our precious 2 month old baby girl need to have surgery? What is going to happen to her? What do I need to do for my child? The pediatrician took the time to not only console me after delivering this shocking news, but also was very, very thorough in explaining exactly what she has, what the procedure will be like, the recovery process, even drawing up diagrams to understand better. (Craniosynostosis is when one or more sutures in the skull prematurely closes up). I was given 3 names of neurosurgeons in the city and I immediately called to get Riley seen.

We scheduled an appointment with the doctors, upon our visit with the first doctor he immediately noticed Riley's head. As we sat there and listened to him explain her diagnosis and explain our options, it was hard to imagine that our 2 month old daughter is going to need surgery. The doctor told us our 2 options. One minor and one major surgery. After finding out what our options were we had a very hard decision to make. Have our precious daughter go threw with the minor surgery and wear a helmet with chances that she still would have to have a second surgery, or have her go through the MAJOR surgery with a longer hospital stay, but then getting the desired results with slim chances of having to do it again. We still weren't sure what to do so we decided to see a third surgeon. After speaking with him and hearing what he would do, it made our choice easier.

Riley is scheduled for a Cranio Vault Reconstruction on September 7th. This is when the head is cut in a zig-zag pattern from ear-to-ear (which allows for the scar to be more easily covered with hair in the future). The skull bone is then cut to release the fused suture. After the suture is released, the skull is then stabilized with dissolvable plates and screws. Subsequent surgeries are sometimes needed. She is going to be followed for years to ensure there is no increased pressure on the brain and to ensure the skull is growing normally. Riley also does not have a brow bone, which will also need to be reconstructed during this surgery. The only downfall with this option is there is a 50% chance she would need a blood transfusion. Luckily I am a blood match and can donate to her. After the surgery her head will swell up, causing her eyes to shut, and it will take a few days for the swelling to go down. She will spend the first day or 2 in the NICU under close supervision and another 1 to 3 days on the pediatric floor. With this option the results are immediate with a very low percentage of having to have another surgery.

On top of her head issue, she also has been having a hard time gaining weight, and established a milk allergy. In her 5 months, we have been to the pediatrician every other week tracking her weight gain. She only gained 1 pound in 2 months. She's been on 3 different formulas and 4 different medications. We were sent to a G.I. specialist in hopes to determine the reason for her lack of weight, and get our princess warrior stronger for her big surgery day. We finally found a hypoallergenic formula that has been working for her and at her weight check on July 13th, she gained a whole pound!! However, the formula only comes in small , 12.1oz powder containers that costs about $25 each which adds up to be very expensive when she's eating 24-30 oz a day.

Despite all the news we knew as her parents we would be able to get through this process with the help and love of our family and friends.

A few weeks ago, when the idea of a GoFundMe page was suggested from a friend, my husband and I were a little unsure about it.  We are both independent, hard working people and like to get by on our own. Thinking we can get through this with just the support from our family and friends. But then we realized in a situation like this, we can never have too much love and support on our side. So we decided to create this page to ensure our little girl is well taken care of not only during her surgery, but on her rough road to recovery post surgery. All generously donated funds will be used for Riley's present and future medical expenses, her formula and to help with our daily family funds while Mike is working and I am taking an extended leave from work to be with her while she is in her state of recovery.

Thank you all for your love and support during this difficult time for us.

Love Always,

Christine, Mike, Michael and Riley the Princess Warrior