Muriel

Hello all, long time no type. We promise to be more diligent about posting while Muriel is in the hospital.

Let’s see, what else has been going on in the past few months…

PT Darlene

Sitting with Daddy

Muriel and I have been seeing the speech and physical therapists at Hope in the past few months to work on her feeding and development. We will continue with them and after her recovery from this surgery expect to call early intervention to have her evaluated. As expected, she is behind. Although we have tried to give her tummy time, it has only been allowed since mid June due to her sternum and incision needing to heal. She does hold her head up when being held upright and sitting, but not quite where an average 4 month old would be. She does not prop herself up when on her tummy, but is beginning to push her head up. An exciting moment yesterday---she did roll over (75% of the way) on the echo table. This was mostly out of pure frustration, but hey, I’ll take it! 

We met with Dr. Ilbawi last Friday, July 20 at 6:00pm to go over the surgery. He is a truly wonderful person, a gifted surgeon and a patient teacher. Not only does he meet with families himself, but on a Friday evening to accommodate Jeff’s work schedule! This meeting was only 20 minutes because Jeff and I did not have too many questions and are much more comfortable with the surgery, but last time he did sit with us for an hour and a half. Dr. Ilbawi explained the surgery again and drew his upside down picture of the heart. She will be having a bidirectional Glenn (always the plan) and a Damas Kaye Stansel. The DKS is new because her VSD is getting smaller. I asked if he was foreseeing any complications and he said he was very optimistic of the outcome of her surgery. I replied that was all I needed to hear!!!

Dr. Cuneo

This Monday Muriel and I went to the hospital to see Dr. Cuneo, her cardiologist. She had an echo done and an EKG. Dr. Cuneo came into the room after reviewing her echo and was concerned about the size of her VSD. The oxygen saturation test the nurse did showed her to be at 85%. Dr. Cuneo thought she appeared a little blue and ordered a re-do. Again, 85% was shown. It seems most babies about to undergo a Glenn are sating at 75% and can expect 75-85% AFTER a successful surgery. (More proof that Muriel is in fact a super baby!)

 

We spent the day in the hospital yesterday. Muriel's first appointment was for her second echo cardiogram of the week. She was not in the mood for ultrasound gel unfortunately and threw quite a temper tantrum. Who can blame her? The reason for the second of the week was to check to see if she has a second SVC (superior vena cava). In the [7,000] previous echos -not to mention the open heart surgery she has had- readings were inconclusive. Final unofficial results---they don't think there is a second SVC. I do understand why the team wants to check as it does matter for planning purposes for the surgeons. Next, we went to meet with one of Dr. Ilbawi’s nurse practitioners, Jane. She went over the surgery with us again. 

Muriel's hand after cath. lab :(

We signed consent for the surgery and then it was time for a blood draw. I have to say I did better with this than Jeff. Two nurses came, apparently the only two that poke the pediatric heart patients in Hope. One to poke, one to hold her arm, I held her chest and legs, and Jeff held her hands. She screamed like I have never heard her scream, but the AMAZING nurse got blood in one prick. I have to say that is an accomplishment because after she came home from the cath. lab she was riddled with unsuccessful puncture wounds and bruises.  

x-ray

Next we went to radiology and got a few x-rays of her chest. She was much more compliant for those. 

Well for anyone who has actually gotten through this ramble, thanks for listening, praying, and supporting us. I am sorry I haven’t written more but I think it may be therapeutic and will continue to do so!  

Jeff and I are hoping to check in to Ronald McDonald with Muriel on Sunday. Her surgery is Monday morning. We are optimistic and looking forward to this surgery being behind us.