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).

Bekah's Story--Finding Out I AM a Heart Mom

At 2:38 p.m.on Jan.18, 2010, my little girl joined our family. She was so sweet and I was so happy to finally have her with us. Just a few hours later after meeting Big Sister, Big Brother, and grandparents; her pediatrician came to do her first exam and she informed us of a Loud Heart Murmur and wanted us to have her see a Cardiologist and have an Echo cardiogram done. I was a little stunned but I knew heart murmurs in newborns were common. I didn't realize until later that they did take a little longer than usual to let me hold my baby for the first time. No one had ever mentioned a heart murmur before then.

We thought we were going to have to wait until the next day to have the Echo performed so we just planned to have a nice quiet evening getting to know this sweet baby. My parents came to see Bekah along with my 2 sisters. My husband, A.J. and other 2 children had already left for the evening. Before too long they came and got my baby for her Echo. I was surprised that they were doing it this evening but at least it would get done sooner. My younger sister stayed with me for the Echo. Thank God she was there. I was extremely nervous and scared.
It wasn't very long before my baby was brought back to me and was informed the Dr. would be in shortly to talk with me. Thank God my sister was still there with me. He said that She had a pretty significant Heart Defect and she would need surgery within the next 10 days but they couldn't do the surgery in my hometown of Wichita, Ks. and that she would have to be airlifted to Kansas City, Mo. which is 200 miles away immediately. And he said IF she Survived IF...IF... What? My Heart Just Sank completely and there was no stopping the tears obliviously as any Mother could imagine. I was asked where my husband was and was told to get him back up to the hospital to see his new daughter before she was transferred to Children's Mercy Hospital. We weren't able to go with her during transport to K.C., Mo. So, my Dad stayed with my other children while A.J. came back to the hospital.

She has CHD(Congenital Heart Defect) called Truncus Arteriosus, VSD(Ventricular Septal Defect, and PFO(Patent Foramen Ovale).

I had no idea what was going to happen and what should I do with my other 2 children while I went with my baby girl? I was still a patient in the hospital. I would figure that out later.