Hello Concerned Friends--
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| Octopus Doll from Nurse Amy to keep me from pulling out my tubes! |
Well--Addie grew in all the wrong places this week. She continues to swell up like a balloon. Her little skin is beginning to look red or purple depending on whether we're seeing arteries or veins through her stretched out and thinned skin. At this point, her treatment consists of symptom management. She's received IV TPN, blood transfusions (albumin & red blood cells), steroids, diuretics, pain meds, etc. She receives periodic x-rays to determine the amount of fluid in her lungs. It seems to be neither increasing nor decreasing.
So--how do we manage with the disappointing progress? Perspective!
1) We learned this week that babies suffering from hydrops have a crazy mortality rate: 75-90% of babies don't make it past a few hours, let alone days, from birth. Addie has already beat the odds. It will take time for her body to kick in and work properly, but at least she's still alive.
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| Cool squish around mattress to help with pressure points from edema. |
2) Addie is still at IMC. The most ill babies are transported to Primary Children's Hospital. She's still in the moderately ill stage where she can be managed closer to home but with all the same experienced nurses and doctors.
3) I received a 4 a.m. phone call this morning! Grr! I did learn from the nurse practitioner, despite my grogginess, that she works with a baby that is so swollen with hydrops that no one's seen his eyeballs for 6 weeks. Additionally, his nose is so crinkled by the swelling that it looks like a pig nose. We're not there! Addie managed to briefly open her swollen eyes on Wednesday. Saturday, she once again could pry open one eye to look at us quickly. And her nose is still cute as a button, despite the overhanging forehead.
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| Check out my ear and indents from Mom's fingers! |
4) Since August 9, I've been greeting the Valet man who sits in front of the hospital. It took 4 weeks of saying "Good morning" and "See you tomorrow" before he started to acknowledge me with a nod. By week 5, he smiled at my greeting. By week 6, he spoke to me with a "Have a Good Weekend." I learned his name this week (Week 7) & brought him a treat. One day as I stopped to speak to him, he asked how our baby was doing (we wear neon green NICU Parent badges). I told him "She's struggling." He empathized with us and said that he spent a lot of time in the NICU when his daughter was born at 27 weeks. She is now 34 with four children of her own. He said, "A week after she was born, my wife died of a rare form of blood cancer. We didn't know she had it. She just died, leaving me with 3 boys and this daughter to raise. I never remarried--too busy." I walked into the hospital very grateful for my own situation--for being alive to raise my beautiful family--for having this little daughter to minister to in her beginning days of life.
Perspective changes everything!
I feel so grateful to you all as you continue to pray and consider us in so many kind ways. Thank you for your thoughts, prayers, encouragement, emails, service, and love.
Think Eternal,
Desi
