April 16, 2018
Dearest Family and Friends,
We have been home just over four weeks now. Our time together has been sweet, and often stressful. Learning to be parents of a medically needy child means as we learn to be parents for the first time we are trying to discern "normal" baby cries and needs from medically related cries and needs that may or may not be more serious. As each day passes we become more proficient in our care of Dottie and the underlying fear that lines my heart lessons just a pinch.
These days have been filled with many adventures; cousin birthday parties, going to the park, lots of visits to the pediatrician, getting to know our home health care nurse Mary, time with grandparents, the Evergreen Space Museum (this was a BIG adventure, check out Seth's video Evergreen Museum). However, most days are spent leisurely at home establishing some routines. We have "cares" every four hours. We clean her G-tube site and change her milk at 1, 5, and 9, morning and night. She receives a small amount of milk to drink by mouth four times during the day. Right now, unfortunately, she has thrush and receives oral medication four times a day as well to fight this yeast. At 1:00pm each day we take Dottie "off-line." This gives her four hours to have more mobility and less restrictions. She does get a little grumpy towards the end of time time but normally she is a happy baby and if you are blessed with a Dottie smile your soul will be lifted and your day made better. We have gone to church a few times and hope to be there more regularly as the weeks go on.
Dottie needs to be reconnected to her TPN at 5:00 pm. It takes one person about 30 minutes to prepare the TPN and reconnect our Dot. If she is with Grandma or Grandpa and we can double team this process it's a bit faster. We have been out of the house a couple of times for the disconnect time, it's much more simple and only takes a few supplies. We have yet to be elsewhere for reconnection because of the supplies needed, the concentration on the steps to be sure everything is done correctly, and having a relatively clean space clear of people. Maybe one day this will happen, but as for now we always need to be back home before 4:30 pm.
We have had several visitors and everyone has been very respectful of staying away if they are sick and washing hands and limiting contact when they do come. We know Dot will get sick eventually, it's unavoidable, but we hope to keep that day away as long as possible. Dottie continues to receive clothes and toys as gifts and we are most grateful for these things. Everyone has chosen just the cutest things for her and I have no doubt she likes them all.
For now both Seth and I are able to be home to take care of Dottie and support each other. This is only possible because of our amazing financial supporters to ELIC and gifts given to us. Our insurance currently covers Dottie's care. We are on home assignment with ELIC which is who we receive our insurance through.
Dottie is 15 weeks old (as of yesterday) and our hearts are filled with thankfulness that she is still with us. Near the end of our time in the NICU we talked with one of the nurses on duty the first few days Dottie was there, she shared that she, and many others, did not think Dottie would survive. We know hundreds of people around the world have been praying for Dottie and because of those prayers Jesus has healed her in so many ways. We are grateful to each and every one of you.
Love and Blessings, The Halligans