First Surgery February 17, 2010

Bekah had her first Heart Cath. performed on February 8, 2010 at 3 weeks of age. She did amazing.

Rebekah's condition was talked about at the surgical meeting on the 12th and she was put on the schedule for Surgery on the 17th. There was just too much blood getting into her lungs at that point. It was such a relief to finally have a date but I was also terrified beyond belief that she would have to undergo SUCH a major operation and knowing that the bypass machine would be used.

On the morning of the 17th; one day before she turned 1 month old, My Sweet Precious Baby Girl went into the OR to have her little heart fixed. My parents drove early in the morning to make it just in time to see her right before she would be taken. It was about a 6 hour surgery but the time passed easier with my parents there. We got hourly updates; it went very routine with no complications.

I've asked "Why Her? Why Me? Why Us? " several times. And, my Faith has gotten me through these past few weeks and will continue to get me through. Along with all the prayers from Family, Friends and even people I have never met.

Miss Rebekah is such an amazing, strong, little fighter. I praise the Lord that he watched over her and all of her surgical team ( doctors and nurses).

NICU and DiGeorge Syndrome

Bekah's doctors kept going back and forth with deciding whether or not to send us home before surgery, when surgery would occur, etc. There was so much information thrown at us all at once. It was very confusing at the time.

She was not eating well at all. She was getting sick every bottle so they were needing to NG tube feed her but she would get sick even then. It was very hard to watch her struggle so hard and get so tired so easily. She did not like the NG tubes and kept pulling them out but since she wasn't taking enough by bottle; they needed to keep inserting new ones.

All the tests that they ran for her digestive system came back negative so nothing was wrong there. After many trials and errors; it was concluded that it may just be Reflux and hopefully she will outgrow it. She was also put on the Sensitive-Lactose Free Formula. After a few weeks, she was starting to eat very well and gaining weight.

At one of many ECHOs that she has had, they discovered that her Main Valve is leaking which made them want to do her first open heart surgery sooner than later. We would definitely NOT be going home before surgery. Now it was a waiting game to see when Surgery would be scheduled. And, once again they went back and forth. She was stable enough to wait on surgery BUT we also couldn't go home. It was a little frustrating to say the least.

If that wasn't enough... They had some genetic testing done because of the type of CHDs my husband A.J. and Bekah has co insides with DiGeorge Syndrome. They were both positive for DiGeorge Syndrome(depletion of Chromosome 22q); which also has many other symptoms along with CHDs. ( Tetrology of Fellot and Truncus Arteriosus).

Traveling to CMH

I'm sorry about the lapse in time between posts. It's been a hectic few weeks.

Because of very dense foggy weather, Bekah was transferred to Children's Mercy Hospital (CMH) by ground ambulance instead of being airlifted on Jan. 19th at around 1 p.m.

I was trying to get discharged as quickly as possible. I was thankful I was well enough to be able to travel so soon after giving birth. It was a 200 mile journey. It was less than 24 hours after delivery that I was allowed to walk out of the hospital (with pain medications of course).

A.J. and I drove in the dangerous fog in order to meet our baby girl at CMH. My parents would watch Amanda and Lucas while we went to K.C. I was thrilled that all 3 of us got to CMH at the same time. I hated that I was forced to be away from her that long and not knowing how she was doing. We were told later that she was a perfect traveler and better than most babies.

We weren't even thinking about lodging. Luckily we were told about Ronald McDonald House Charities(RMHC) and we were able to get to stay at one of the houses. It was a short walk;but up a hill. It was difficult with myself still recovering. They did provide a shuttle but didn't find out about it until later on. I was still feeling very sore, emotional, stressed and exhausted but RMHC provided a little relief and comfort.

Until the next blog post... God Bless You All!!