Hello Good Friends & Dear Family--
What a week! Addie passed through the window from the operating room directly into the Newborn Intensive Care Unit on August 21, 2017--purple and lifeless looking at 5:08 pm. Chris visited her just before 10 pm that night to find her stabilized but in critical condition. She's remained critical but stable throughout the week--the baby in need of the acutest care currently in the NICU. We'd like to graduate from that status, but in order to do so, Addie needs to have her chest tubes removed & to wean off the oscillator (ventilator) which is her "breath of life" currently.
Addie has a nurse and a respiratory therapist monitoring her continually. A Licensed Practitioner Nurse heads up her care under the direction of the Neonatologist & meets with us daily to update us on her status. Other members assisting her include a pharmacist, a registered dietitian, and some students in residency programs, etc.
We are blessed to visit Addie daily and give her hand hugs. Each of the children has been able to visit her, and of course that just makes us all attached and in a longing state. Elise was able to powder her creases to prevent fungal growth with an inviting, friendly nurse. I was invited to change her teeny diaper one day too by another inviting nurse.
As of today, here are some of the the wonderful steps of progress Addie has made this week:
1) Her swelling has decreased--which means her body is starting to reabsorb some of the water. She weighed 5 pounds 7 oz at birth (water weight). They believe her actual weight if more like 4 pounds. She's beginning to look tiny instead of large and bloated. It is great to see her get to her true form.
2) After a few days of little to no urination, she started "peeing" both in and out of the catheter--so today they removed her catheter & she will now have diaper changes more often! :-) We're super happy about that because her body is beginning to function the way it should. The fluid in her tissues now has an outlet--the right outlet. In connection with this, they tested her kidneys to ensure proper function. All is fine there. If she continues to need diaper changes, they'll wean her off the diuretic and see if she can function without it.
3) The chest tubes continue to drain fluid but it lessens each day. We had a scare one night with an 11 pm phone call from NICU. The nurse used the wrong protocol to "unclog" the chest tubes & flooded 10 ml of this stroke medicine (also used to clear clots in tubes) back into Addie's lung space. The medicine went to work and dissolved all the healing clots that kept her from bleeding into the drainage tube. The staff suctioned off 12 ml of bloody fluid at that point to try to get the medicine out. They gave her another round of plasma (blood transfusion) to assist in regaining the clots they'd lost. The next day, the blood drainage ceased, and things returned to "normal". Phew! The doctor assured me they are reviewing their protocols and procedures to ensure something like this never happens again. Pray for the nursing staff! They are human angels, so they can still make errors, and thus, they need heaven's help to guide them in the care of these precious children.
4) They put a feeding tube into Addie's tummy last night & primed her with some of my milk. Today, she "pooped" out some meconium--6 days late, but we'll take it! :-) This is a great sign that she tolerated the itty bitty milk they gave her & that the stomach and intestines are prepared to function normally. They will be increasing incrementally the milk they give her until she can be weaned off the IV feedings and go to straight milk. No chocolate for me! :-)
5) Throughout the week, they've run tests for viruses, bacteria, liver function, blood clotting, kidney function, heart & lung function, brain function, etc. Every test has come back within normal range. The cause behind the pleural effusion continues to mystify the medical staff.
6) Currently, they are using light therapy to decrease bilirubin levels (jaundice). Now that she is beginning to poop, Addie will be better able to rid her body of the bilirubin on her own.
We love to see every little change in our cute munchkin. We're anxious to see her eyes--they've been hidden for days under her "sunglasses." I am never good at saying "goodbye". I'm in a position where I have to say "goodbye" everyday! I will tell you what faith is--faith is putting mascara on every morning in hopes that maybe just that day, it won't be washed off later that afternoon. Chris gave me a good perspective: "Desi--just think, most mothers don't get to see what their baby looks like at 31 weeks or hold the baby's hand or touch her nose." I am grateful for these little things I can do!
I am so grateful for the angels, seen and unseen, that watch over Addie when I cannot be there. I am grateful for your fast last week & continued prayers this week in Addie's & my behalf. I have been carried on the wings of your faith,which helped open the windows of revelation to us in knowing that Addie needed to enter this world immediately in order to heal. We are seeing the blessings unfold as she makes progress to wholeness every day.
I am grateful for all the willing hands that have helped get kids to & from school, brought meals, watched Cicely, and made many offers to assist in any way (which will still be taken advantage of! :-) I'm especially grateful to the two friends who woke up extra early to milk our two cows this week and still make it to work on time. Few know how difficult it is to milk an ornery, kicking cow, who just gave birth last week and is recovering from a swollen udder, blistered teats, & calf separation! (Wait--am I describing myself? Ha Ha!) Thank you for taking that high-stepping mad cow on, for dealing with kicked over buckets of milk, and long, sleepy days at work! Our family will never forget!!
I love you all. May you feel the power of God in the details of your lives. He is there, very aware, very much desirous to help. Ask, Seek, Knock! I've felt His sustaining power this week in more than I can detail here. We are calm; we are at peace; we take each day as it comes and as a gift. May you feel that power of Christ in your life too in whatever situation comes your way.
With love--Desi & family
