It has been so beautiful watching Ellie GROW (in all areas) these past few months. Since finally reaching a perfectly portioned menu, Ellie has gone from 26" to 28" and now weighs over 16lbs, THIS IS HUGE!!! It has been such a struggle getting to this point (angry ranting blog post soon to follow) that this growth gives us so much hope. She seems so much more alert and present in the moment. She watches us move about the room and giggles at her siblings. It is so exciting to see.
However, there has been a dark cloud hanging over our summer sunshine and it has been talking with Drs about Ellie's heart. As I mentioned before, Ellie has a congenital heart defect known as a PDA (Patent Ductus Arterious). Here is a quick breakdown on what this means:
According to the NIH, "In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary artery. Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation. Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns. In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries."
We have known about this now for about 2 years since our geneticist first heard the murmur and we have monitored her heart very closely. It was recommended to us that we close the PDA for several reasons. First, Ellie's left side of her heart is becoming enlarged. We wanted to make sure it was trending this way and not just "beefy" to begin with before having this procedure and it is infact increasing in size. Second, calories....we don't want Ellie losing calories that could go to growth and development instead of pulling double duty in her heart. She is also losing a lot of water in terms of sweating. Everynight I check on her in bed and it looks as if someone dumped a bucket of water on her.
We have chosen to close this now while it is still summer time and not flu season. It scares me to think of going into the time of year where pneumonia is prevalent with a heart condition that effects the lungs.
Here is a link of how the procedure will go. We will be staying overnight and as long as everything goes well, we will be discharged the next day.
The tentative date for this to happen is August 8th. Here is why it is tentative....the hospital says that I am to give Ellie to the nurses where she will go to a room where I am not allowed to go while they administer gas to put her to sleep before they try and get an IV going. I am not ok with this. My daughter is going to be on high alert already from just being in hospital . How can I put her into someone elses arms, scared, with people she doesn't know, not understanding what is happening as they hold her down helpless? I don't care if this is their "policy" because it is a bad one. I want to be able to hold my baby while she drifts off to sleep. Knowing that mommy loves her and will always be there through the best and worst of times.
Two other hospitals have allowed me to go back and hold my baby right before a procedure. If this hospital can not accommodate our wishes, then we will reschedule at a different hospital. After all, the hospital is a business and it has to earn ours by way of respecting the wishes of our family. So we will wait and see how this plays out. Either way, we have decided to go through with the procedure. We feel that this is the best choice for Ellie and her well being.
We welcome lots of prayers, well wishes and happy thoughts for Ellie! It is suppose to be a "simple" procedure and I pray that it goes that way.
You guys are always in my thoughts and prayers. And good for you for sticking up for what you want!
ReplyDeleteThanks Lydia! Hope all is going well for you and your family! :)
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