Wednesday, February 11, 2009

Day 9

Abraham is doing well on this new ventilator. Blood gases were a little off today however the blood was obtained from a heel stick rather than directly from an artery (umbilical arterial line is out) so probably not very accurate. He is off the light therapy because his bilirubin levels are good. Glenn said to him “I love you Abraham” before we left and he opened his eyes” he did not want us to leave his bedside tonight.

The pediatric cardiologist saw on the echocardiogram PDA (patent ductus arteriosus) is open. More information I found this website: http://www.healthsystem.virginia.edu/uvahealth/peds_cardiac/pda.cfm. I briefly read it so hopefully it’s accurate. This means that 50% of his blood is going to his lungs (causes congestive heart failure and pulmonary edema) and 50% to the aorta (normal). His heart has developed with normal structures. All babies have a PDA while inside the mother because the placenta does all the work of breathing. In full term infants the PDA usually self corrects in about 7 days. In preemies however the body is not ready to make this change. Therefore it is managed with medications or surgical invention. Abraham has fluid in his lungs and his heart is increasing in size. In Abraham’s case he is not a candidate for the medications because he received steroids last week and the risk of bleeding and bowel issues (NEC or a perforated bowel which would require colostomy or ileostomy). Madigan does not perform this kind of surgery. My choices for transfer for surgery were Seattle Children’s or Mary Bridge. I chose Seattle Children’s because I know they specialist in children and I have heard bad things about the other hospital from nurses and parents. He might transfer around noon tomorrow. The neonatologist consulted with other doctors including the pediatric cardiologist and they all agree that surgical intervention is the best option.

We are not sure about the sleeping accommodations over there. The social worker will check in the morning about the Seattle VA Fisher House or the Ronald McDonald House near Children’s. We are not sure if we qualify or not because we live an hour by ferry boat. I did hear that there is a sleep room for one parent near the NICU. I worked there before so it probably is not as comfortable or private as where we are currently. Once he is able to transfer he will come back to Madigan

Prayer request:
Abraham remains stable enough for transfer.
Abraham and his parents are calm during transfer. He will be going by ambulance with a NICU team: respiratory therapist, nurse and maybe a nurse practitioner from Children’s. The trip is 1 hour from Madigan. We are not sure if a parent can ride in the ambulance

Our coping with so many life changes. He is having a very hard time with this because he expected to stay in Bremerton until Friday to have the contractor take picture of our house (we had planned to have some renovations before the baby)

Comfortable sleeping and breast milk pumping area at Children’s. Access to electrical breast pumps.

Madigan Fisher House will have a room for us when Abraham transfers back, not sure how long he will be at Children’s

Expertise of cardiac surgeon, there are many risks involved in this surgery however the risk outweigh the benefit.

1 comment:

  1. I heard a song tonight that I've heard before, but it spoke to me of you. It's called Tunnel by Third Day. Some of the lyrics are...

    "I won't pretend to know what you're thinking
    I can't begin to know what you're going through
    I won't deny the pain that you're feeling
    But I'm gonna try and give a little hope to you

    Just remember what I've told you
    There's so much you're living for

    There's a light at the end of this tunnel
    There's a light at the end of this tunnel
    For you, for you
    There's a light at the end of this tunnel
    Shinin' bright at the end of this tunnel
    For you, for you
    So keep holdin' on"

    Love you and praying for you all,
    Lynn :)

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