To continue from my previous post, I don't want all those sweet babies that left earth way too soon to be forgotten. I want to honor their memories. I'm hoping I can share many, many more angel babies.
I met Phoebe's mom and later her dad at St. Louis Children's hospital when their son was Noah's next door neighbor. I consider them dear friends of mine, and I couldn't think of a better angel baby than Phoebe to start of my new project.
Phoebe's story is written beautifully by her mom. Get ready to wipe away some tears (because I did). What an amazing little girl.
Happy birthday sweet Phoebe. I hope heaven has lots of birthday cake for you.
Many, many hugs to Phoebe's mom and dad and the rest of her family who misses her terribly.
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My precious daughter Phoebe Johanna was born on March 21, 2010. She was born at home, which we had planned from nearly the moment we found out we were expecting. She was apparently in quite hurry to meet us, as she didn’t even wait for the midwife to arrive! I was blessed to have my husband and close friend with me to help me through the birth.
We had a beautiful first day with her, surrounded by family who fell in love with her on sight. She was nursing like a champ and doing all the things a brand new baby should do.
When she was just over 24 hours old, she started having some difficulty breathing and we rushed her to the local emergency room, and she was airlifted from there to the nearest high-level NICU, about 2 hours away. When she arrived at the new hospital, they had trouble stabilizing her and within a few hours she was put on ECMO (extra-corporeal membrane oxygenation), a heart-lung bypass used on infants with severe respiratory distress. We were told at that time that she had PPHN, persistent pulmonary hypertension of newborns. In other words, the blood pressure in the lungs was too high, and was making her heart work too hard to push the blood through the lungs.
She responded very well to ECMO and was able to come off the bypass in less than 3 days. Thus began the roller coaster of the most difficult month we could have imagined. Phoebe would seem to respond to treatment, and then would crash. They would try a new medication, a different combination of medications, adjusting doses and timing of the medications. She was paralyzed for several days, because she was so sensitive to noise, light, changes in the room, people talking near her bedside. We spent nearly the last two weeks sitting at her bedside, in a quiet, dark room, not wanting to disturb her in any way, hoping that the rest would give her body the time it needed to heal.
And then came the worst words any parent could ever hear: “There’s nothing more we can do.” They had used every therapy they knew of for PPHN, including some never before used at that hospital. Despite every effort of her incredible medical team, she simply would not get better. We had reached the point that any more intervention, we would be doing to her, not for her.
We called our family so they could be with us when we let her go. Shortly before she passed, they removed as many of the medications, IVs, tubes and wires that they could, and for the first time in a month I got to hold my baby girl. I held her, rocked her, talked to her and loved on her until we told the doctor he could remove the respirator tube. Without the respirator support, she passed quickly and peacefully.
After Phoebe passed, we found out she had a rare lung condition called alveolar capillary dysplasia (ACD). To find out more about ACD you can go to the ACD Association’s website at www.acd-association.com. Less than 200 infants worldwide have ever been diagnosed with ACD. While it did not change the outcome, a definitive diagnosis gave us some comfort. We knew without a doubt that there was nothing anyone could have done differently, nothing we or the doctors missed, no way she could have survived.
Soon we should be celebrating Phoebe’s second birthday. While time has brought some peace, it has not filled the emptiness of not having her with us.
Love you, baby girl. Always.
Two beautiful girls. Phoebe and her mom.
1 comment:
Missing her, but comforted by all the support for Kim and Chris and by people remembering. Thank you.
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