Countdown Begins

We are heading into the final weeks before Lilly will arrive. Not a lot has changed with her heart, brain, or kidneys over the past month. As of last week she was measuring in at a big 4lbs 12ozs. I got a glimpse of her face on the 3D monitor and she has chubby cheeks which make it look like she is storing food like a Gerbil. They say she has a lot of hair. That explains the heart burn. Lilly continues to fight her way to the end.

Summer and Bryson went to the hospital last week for a sneak peak at the Cardiac ICU where Lilly will be. The play therapist took Summer on a tour of the unit. She showed her around the unit and answered any questions Summer had. The therapist told Summer to come and decorate Lilly’s room just like we would at home. Summer is allowed to draw on the white board and even paint the windows. Summer already has an idea in mind of what she wants to draw. The therapist showed the kids the playroom where they can play when they come to visit their sister. The playroom has every toy imaginable and every gaming machine too. The therapist gave Summer and Bryson each a “Lilly” doll. They got to decorate her and her hospital gown. Bryson scribbled and Summer added a face, hair, and clothes underneath her gown so she doesn’t get cold. The therapist talked to Summer about the heart surgery and explained the procedure. They also talked about how Lilly will be different from other children. The therapist did a beautiful job and we were so impressed with the way she made the children feel welcomed and comfortable in a sometimes scary environment.

We will continue to update as new information arrives before her delivery date. Once she is born and we are able to get a picture we will post and keep you informed as the information from the doctors is discussed with us. Please continue to pray for not only Lilly but for our family. And the countdown officially begins: 19 days till we get to see our Lilly!!!

P.S. Hope you enjoy the music Miss “SP”

DATE!!!

On Wednesday Lilly had an echocardiogram. The Dr said that her heart still has the same issues but there was no fluid around the heart which is a good sign she is doing ok. After the echo I went upstairs to have an ultrasound. I got to see Lilly’s face for the first time in 3D. She is beautiful with the cutest chubby cheeks. She weighed in at 3lbs 13ozs!!!!!! WOW!!! No wonder I am the size of a whale. I didn’t get to see the High risk DR so I was bummed. I was hoping to talk to him about setting a date for delivery. The next morning I had my final appointment with my current OB DR. He has to transfer my care because he does not have privileges at St. Joseph’s Hospital. I think he has done a great job helping us get through these past few months. He has been a great support to our family and has helped us find new doctors that are going to help our Lilly. Friday morning was spent back at St. Joseph’s hospital. I finally got to meet with the High Risk OB DR. He went over the ultrasound with me. Lilly appears to be doing fairly well. Her growth falls in the 35^th percentile. He would like to see her at the 50^th percentile. So we will watch her closely and make sure she does not drop down in the 10^th percentile for growth. If she does we will talk delivery. But overall she is doing great. I then met with the DR that will actually do the delivery. After talking to him he agreed to give me a potential date……..August 17^th!!!!! I was so excited. He said if everything goes according to plan this is the possible date we will do the c-section. We are so excited that in a few short weeks we will get to hold our sweet Lilly. We are nervous for the trials she will face but know that Heavenly Father will bless her and us with the strength to endure.

Team Meeting

On June 29^th we met with the neurologist who had reviewed the MRI scans of Lilly. She said that everything appeared to be normal except for her cerebellum. The cerebellum has three parts. The middle part is called the Varmus. It appears Lilly’s Varmus is either too small to appear on the MRI or is does not exist. The neurologist feels that Lilly will just struggle with her motor skills such as her movements will be choppier instead of flowing like you or me. Lilly may struggle to roll over, crawl, or walk on schedule. We said that’s fine. We are a clumsy family her sister has already knocked out her two front teeth so grace doesn’t run in the family. As for her learning we will have to wait and see but that portion of the brain appears to be normal. There also appears to be some extra fluid on her brain. At this point it doesn’t require surgery. When she arrives they will test everything again and decide on whether or not she will need a shunt in her brain to drain the extra fluid. The doctor was very informative and even showed us the MRI scans.

On July 2^nd we had a BIG team meeting. In this meeting we met with the Neurologist, Neonatal doctor, and Cardiologist, Cardiac Surgeon, and Case manager. In this meeting we discussed Lilly’s problems, what to expect over course of the next few months, and what we are facing for the future. All the doctors were very positive on Lilly’s prognosis. They say at this point she will make it and we need to get ready for her birth. It is the total opposite of what we were told 3 months ago. So here is the rundown of what is to happen in the next few months. Over the final 8 wks of pregnancy Lilly will be closely monitored. We will visit with a DR twice a week from now until delivery. We will deliver at St. Joseph’s hospital in Phoenix. When that exact date is we don’t know. We are hoping to get a date next week. It will be a schedule c-section. They feel this will be a safer route for Lilly and me. At c-section the room will be filled with doctors and nurses from the NICU to help stabilize her when she arrives. Once she is stable I will get to see her for a moment. Lilly will be moved down the hall to NICU where she will endure several hours of testing such as ultrasound, MRI, blood test, breathing test, blah blah. It will be several hours before she will be able to receive visitors. OF course Josh will be with her the entire time. Once I am out of recovery I will get to see her. After 24 to 48 hours in the NICU she will be moved to the CARDIAC ICU. She will remain in the cardiac unit for at least a month. Between day 5 and day 7 of life they will perform the surgery to repair her aorta valve that appears to be too small. At this time this is the only surgery she will need during infancy. She might need a “tune up” later in life. Her other issues will be address while she is in the cardiac unit. We have to wait and see what she show us when she gets here to determine what do about the brain, kidneys, and if there is any other heart issues.

After the meeting we toured the hospital. We went into the NICU so we have a mental picture of where she will be and what to expect. We also went through the Cardiac Unit. In this unit she will be in a private room so Summer and Bryson will be able to come and visit for longer than 15 minutes. The cardiac unit is beautiful and the staff is so nice and positive about what is to come.

So that’s the run down for now. Could change as always. Check back late next week for a delivery date. Thank you again for your prayers and support.