This week has been good. Today I held you in my arms for 2 hours straight and it warmed my heart so much. I think the fact that we have been able to spend more time together has helped you heal. You have been doing well and not requiring quite as much oxygen, although every time you get upset you need just a little more. I always visit with you twice a day and wish I could spend all day watching you. I do struggle with feeling guilty when I leave the hospital but I know that you are being well cared for and spoiled up there in the NICU which you absolutely deserve. Every night you get a bath and weighed and tonight you had the most handsome outfit on that I got for you with turtles and ducks on it. You are getting so big and now wear 3-6 month old clothes.
I always worry about you even when I should just celebrate how far we have come. Your dad has been so supportive and mommy's friends keep tabs on me to make sure I stay sane during your stay in the hospital. I find that it is somehow harder to cope with the small bumps in the road now that you have been off the ventilator for almost 1 month. You of course are brave and strong and continue to amaze us all!
Your recent amazing accomplishments:
1. You smile at us and make a quiet giggling sound when you are happy
2. You have been able to lift your head and move it well from one side to the other and have very good head control considering all the time you spent on your back and sedated.
3. You have excellent range of motion of your arms and legs and have shown us that you can army crawl around your crib
4. We found a new way to calm your down when you are in need of a position change by sitting you upright, which you love and tolerate so well.
5. Last week when you had some trouble you stopped wanting to take your pacifier, but this week you have been much better and more frequently find it soothing to have it in your mouth. This is a skill you have to now learn because for so long you only had painful things going in your mouth. You will also put your hand in your mouth and munch on it to soothe yourself.
6. You are not as swollen as you were last week thanks to adding a couple of medicines that help you get rid of that bad extra fluid.
7. You like to sit in the bouncer we got for you which automatically bounces you and plays music and nature sounds to entertain you.
8. Since we started the fat free breastmilk to treat the chylothorax you have not reaccumulated fluid in your chest and we double checked last week with an ultrasound.
This week we are going to see if we can try to wean the nitric medicine which helps with your pulmonary hypertension. The things we need to hope for are weaning the nitric oxide and after that the CPAP. These of course will take a while. Then we will try to see if you will tolerate my breast milk without reaccumulating the fluid in your chest. We will likely try that in 3 weeks if you are doing well from a breathing standpoint. Until then I am still donating my milk that you can't use right now to the tiny premature babies. Last week I donated 4 gallons .... can you believe that?
Upcoming events for our family--- First your dad started his first real doctor job here in Columbia moonlighting and did very well! He will do this until he starts his new ER job in Portland which will be on August 28. This means that he will have to move up there on August 21 with Toby and Henry and all of our stuff. But don't worry sweetheart, I will stay here with you and will be staying with friends. Our next goal will be to see if we might be able to get you to Portland by transferring you up there or if that isn't possible I will just wait here with you until you are good and ready to come home.
We just hope and ask for prayers and thoughts to get us to a point to where our family can be reunited with all 3 of us together at home in Portland. It will happen baby bear and we are patient. I love you and as always miss you even though I just left your side 1 hour ago. I promise you will be spoiled with attention and love when you come home to make up for the less than ideal set up we have now. Just remember that we will be together and we deserve each other and feel so lucky to have you.
Love,
-Mom
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