She had a quiet night and uneventful for a change!
This morning the EEG machine has been taken off so we will actually be able to hold her in a few minutes! We can't put into words how much this means to us.
We received an update from cardiology and after consulting with the surgeons (Walters & Delius), if her MRI looks good, and her NEC coninues to improve, Delaney is expected to have her operation next Thursday. Her blood pressure is still better, but does still show a discrepancy in upper and lower. This is still from the Coarc, which was relieved from the Cath but not cured.
Her blood count is low today, so she will be receiving a boost through transfusion to help her hemoglobin and platelets. Her O2 sats have remained in the high 90's which is even better than yesterday. However the boost in hemoglobin will only help.
Her urine oupit has been helped along with diuretics and her puffiness has diminished considerably. Related to that we learned that she has gained weight since being here at Children's which initially we were told that she would likely lose weight. Upon clarification this weight gain is due to increased fluids and her sedation makes it more difficult for her to eliminate. As a result, we will actually see her lose some weight in the near future which is a good thing.
Yesterday we had a wonderful conference with Dr. Sood. She wanted to touch base with is became she was aware of our anxiety regarding many of the procedures that they have been wanting to do. She gave us some very encouraging news that they as a staff collaborate and communicate regularly on each of these diagnostic measures. Further, they never allow one "test" to determine intervention. In addition to that, one of the conversations they have routinely is to determine whether a baby will benefit from intervention...she has felt that without reservation that Delaney will absolutely improve from everything that they have decided to do.
In addition to that, we learned that the head of neurology at CH is the most well regarded in the country (if not the world). He regularly speaks at Harvard and many universities around the world. Dr. Sood reassured us that this is the best hospital she could possibly be at for her conditions. We beleive that, and the pride that all of our doctors take in their work is evident and appreciated.
There are a lot of days between now and her surgery, but we are hopeful that the stability she has achieved over the last 24 hours will maintain and she will be that much stronger and prepared.
She's about to go for her MRI, please pray for a good result!
Love,
B & L & d
Showing posts with label Coarctation. Show all posts
Showing posts with label Coarctation. Show all posts
Friday, April 22, 2011
Monday, April 18, 2011
Delaney Update 4/18
Dear friends,
You may or may not know that we had to rush Delaney to the hospital via ambulance last night. She was not breathing well, and didn't look herself at all. Upon arrival at the hospital she was admitted immediately to the NICU. Our cardiologist was contacted and he arrived shortly thereafter. At the time he suspected that there was a defect that would require surgery. All of the symptoms were there and to be on the safe side they prepared her to transfer to Children's Hospital.
During the prep for transfer, her heartrate slowed severely and CPR was administered. We were present for most of the CPR which was incredibly scary, but heartrate returned successfully. After she was stabilized we called for a chaplan, and she baptized Delaney.
At approximately 2:00 in the morning we arrived at Children's where she has been stable ever since. The Cardiologists at Children's ran all their diagnostics and have the full picture of her heart issues.
She has three heart defects. We knew about the VSD (murmur), there are two others; Coarctation and a Patent Formen Ovale (PFO). All of these are to be repaired during surgery. In order for the surgery to go as well as possible they need her to continue to remain stable. They need for her electrolytes to continue to improve and she needs to heal from the initial trauma from the last 24 hours. The more days they can keep her stabilized and resting the better the chances the surgery will be a success.
She may be in the hospital for the next 5 days before surgery. The latest issue we are waiting on is that they would like a better IV for the prostiglandin, most of the veins that they typically use are already occupied, so they will pobably use a femoral location. This will ensure that they will be able to get a solid line for all of the meds and nutrition. Lindsay and I will probably be spending the next few days at Ronald McDonald House so we can be as close as possible.
Please continue to send your prayers. We'll keep you posted as we learn more.
All of our love, Brian, Lindsay, & Delaney
You may or may not know that we had to rush Delaney to the hospital via ambulance last night. She was not breathing well, and didn't look herself at all. Upon arrival at the hospital she was admitted immediately to the NICU. Our cardiologist was contacted and he arrived shortly thereafter. At the time he suspected that there was a defect that would require surgery. All of the symptoms were there and to be on the safe side they prepared her to transfer to Children's Hospital.
During the prep for transfer, her heartrate slowed severely and CPR was administered. We were present for most of the CPR which was incredibly scary, but heartrate returned successfully. After she was stabilized we called for a chaplan, and she baptized Delaney.
At approximately 2:00 in the morning we arrived at Children's where she has been stable ever since. The Cardiologists at Children's ran all their diagnostics and have the full picture of her heart issues.
She has three heart defects. We knew about the VSD (murmur), there are two others; Coarctation and a Patent Formen Ovale (PFO). All of these are to be repaired during surgery. In order for the surgery to go as well as possible they need her to continue to remain stable. They need for her electrolytes to continue to improve and she needs to heal from the initial trauma from the last 24 hours. The more days they can keep her stabilized and resting the better the chances the surgery will be a success.
She may be in the hospital for the next 5 days before surgery. The latest issue we are waiting on is that they would like a better IV for the prostiglandin, most of the veins that they typically use are already occupied, so they will pobably use a femoral location. This will ensure that they will be able to get a solid line for all of the meds and nutrition. Lindsay and I will probably be spending the next few days at Ronald McDonald House so we can be as close as possible.
Please continue to send your prayers. We'll keep you posted as we learn more.
All of our love, Brian, Lindsay, & Delaney
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