|
Post by racincowboy on May 19, 2012 7:44:20 GMT -8
That is great news little Hattie is home where she belongs. I can say that for a fact not anyone would mind you guys dropping off the face of the earth for a while to enjoy your new addition that finally made it home.
Enjoy every second with her.
Lance
|
|
|
Post by petee on Jun 22, 2012 22:42:19 GMT -8
Little update ;D Anna, Hattie and I want to extend a thank you to everyone that has had Hattie and the two of us in their prayers and thoughts the last few months. I can say we never thought the birth of our first child would be such an adventure. We knew it would be an adjustment and that bringing a child into this world would be hard but honestly we never imagined our journey would be this unique. The support, emails, letters, cards, dinners, hugs, kind words, free lawn mowing and love made all the difference to Anna and me. We believe in the power of prayer and that your continued devotion towards Hattie’s recovery insured the outcome we have seen. Our little girl is without a doubt one of Gods miracles. Thank you. On to the star of our series…….Little Miss Hattie
Upon arriving home from OHSU Hattie took up residence in her bassinet next to our bed, within arms reach, and refuses to sleep anywhere else. This little love of mine has decided to be a very patient girl and wait to see the inside of her beautiful nursery (that we worked on for months) until high school. Because she prefers the company of her parents at night instead of her own room, toys, stuffed animals and specially purchased mobile that hangs unused above her unused crib. Or maybe we just don’t want her that far away, with interrupted sleep the lines of who is making the decisions around here are getting a little fuzzy. Currently her favorite things are her swing in the living room, complete with its own mirror to gaze at her beauty and a cloud, sheep, star and moon mobile. She likes the Beethoven recording but not the Bach so much, picky girl. We were given and have modified a golf club bag to hold her oxygen tank so we can wheel it from room to room. This is much better then dragging that heavy thing while trying to transport a sleeping baby. We have come to understand that with our girl the little things are the big things. Tummy time is going well and Hattie is exercising her muscles and getting stronger everyday. She knows her mothers voice and loves to watch us as we talk to her. She also loves her refection and we have found her turning her head to see herself in a mirror. Bath time is one of Hattie’s favorite activities and mom doesn’t mind to much either. Two and a half weeks ago after tracking her feeding and seeing a solid trend of good feeds Anna and I decided that we would remove her NG (nasal gastrula) tube. We are very happy that to date we have not had to replace it. Hattie is eating well out of a bottle and the pediatrician is satisfied with her weight gain. In fact she is in the 100 percentile for weight (11 lbs 12 oz), 87 percentile for height and 42 percentile in head size for babies with Downs her age. We have had a visit with the OHSU feeding clinic which is a resource for families with babies that have had a ruff start. The topic that continues to arise is the kind of bottle that she is using and will continue to use in the future. We have been encouraged and given several high zute, fancy, anti-gravity, no leak, no burp, carved from a uni-corn horn magical bottle that Hattie will NOT drink from and I think are silly. My daughter prefers the super simple, disposable, free, OHSU NICU bottles that they send dozens home with us. Funny how some things work. My father would say “the apple doesn’t fall far from the tree.” We are simply happy she is eating well.
Two weeks ago the three of us packed up and head to OHSU for a day of fun and doctor visits. Anna and I were approached while Hattie was still admitted in the NICU about a feeding study they were conducting in an attempt to develop a new tool to will help doctors understand why infants have feeding troubles and how to help them in the future. So that was our first stop. Then off to a follow up echo cardiogram before we meet with the Cardiologist. Hattie’s Pulmonary Hyper Tension is still present however they feel it is improving. Via the Echo they are able to see that the muscle tissue in the lower right side of her heart is now thinner and smaller which leads them to believe the pressure in her lungs is lower allowing that muscle to work less. Hattie does have an Atrial Septal Defect (ASD) which is a small hole in her heart between her upper left and right chambers that does not seem to be getting any worse. The Cardiologist described it as “not small and minuscule but not so large we need to deal with it right now.” If we do need to address this ASD it would not be until 2 to 3 years of age and Anna and I are happy to not think about it till then. All in all the appointment went well, we have come to the conclusion that if they tell us an hour for a visit we will plan for two and I think planning this way will make them less stressful.
We also had a normal two month old baby Pediatricians visit this week that went well. Except the part were she cried like Anna and I had never heard her cry before while they administer her first round of vaccines. After the visit it was across the hall for a blood draw to check her Thyroid. We got the call today and were told that her Thyroid looks good. There will be a follow up test in six months. We have met with one of Clark County’s Family Resource Coordinators (FRC) to begin the Early Intervention (EI) process to create an Individual Family Service Plan (IFSP) for Hattie. Next will meet with an EI team to have Hattie evaluated and determine which therapies that will work best for her. So now you know what I know, I will try and put something together again after a few more appointment to keep people up to date. Again thank you all for your love and all your support on this journey we are taking.
Love Hattie, Anna, Paul, Athena, Toby, Sil and the girls.
|
|
|
Post by bchutchens on Jun 23, 2012 1:43:15 GMT -8
Glad to hear the good news Paul and Anna. We will keep you guys in our thoughts and prayer!
|
|