A nurse practioner told Trish on Sunday that we should be home by Easter. When she passed that along, I almost lost it.
But enough of the downer...
...lets hear all of the positive updates!
First, we were able to get our own room last week! Apparently there was an outbreak of Rhinovirus where 17 / 23 bedspots had been exposed or had the common cold. We were fortunate enough to escape the virus so far, but we are getting in full gown, gloves, and mask until Thursday. As micro-preemies, our babies are at a significant risk of severe lower respiratory track infections, bronchitis, and even pneumonia. If they were to catch it while at home, we would need to be readmitted. Our friend who went home on Monday had the virus and was back Wednesday night/Thursday morning and her son is now getting Albuterol treatments every 2 hours.
A new doctor came on the service today. From what we've heard, she is pro-home. She is new to our kids but I am hoping that both will come home before she moves off the service in 3 weeks. She decided to lower Scarlett's oxygen flow to 0.2 from 0.3/liters per minute.
Grayson's next move is to have his Lasix taken away again. That should be on Thursday after they redo his Esophogeal impedance-PH monitoring on Wednesday. Last time, he scored a double 0 but he is clearly showing symptoms of acid reflux. I pray that he acts "normal" this time and they see the same things that we have seen over the past couple weeks.
Scarlett is having the study done tomorrow for the first time. She has showed symptoms to a lesser extend. Right after they eat, we see them arching their backs, acting extremely fussy while laying down, and even having bradycardia (drops in heart rate).
If all goes well, Scarlett could be "going to the zoo" next week! We'll start to use this terminology because if we throw around the H word, they may regress. The NICU nurses have seen a ton of kids overcome huge hurdles, then start having bradys right before they get discharged. Typically you need to go 7 days without an alarm.
We were a day late on our 16 week pictures so the twins were rooting for Aunt Becca to win a couple Oscars. They were delighted to hear that Feast won Best Short and Big Hero 6 won best animated feature film!
Tim
ReplyDeleteMy heart is sending you and Trish lots of love and prayers. You are so close! You are rounding the corners. I hope you can feel the wave of support - think of us rooting for all 5 of you as you are rounding the corners of a long run, a marathon to say the least. You are exhausted, tired- but we are all praying with our whole hearts you and Trish! You both have done so exceptionally well during this time. I can't even begin to know how you must feel- but know this- We love you, we support you and we are praying for God to send those babies home!!!!! Thank you for keeping us updated and allowing us to know your story- I am pray- The "they lived happily ever" at Home ending is very soon! Keep loving those babies- they are such fighters. We love you all!!!!!!!!!!
Praying for early trips to the "zoo"...probably an apt term when they finally make the trip. LOL! Everyone can understand your frustration levels...this is four months! I know you don't need to be reminded, but thank God you have the opportunity to experience these frustrations. Four months ago, you weren't sure you would be at this point!
ReplyDeleteSo today I will pray that God give you strength because the journey has been very long and you are all tired. I pray that Jesus lovingly carries you over these hurdles and that, when you look back, you will see only one set of footprints in the sand. And of course, we continue to ask for wisdom for the medical staff and help over these last bumps in the road for Scarlett and Grayson. Mary our Mother, help Trisha and Tim see that the road out of the NICU is far shorter than the road they have traveled thus far.
Sending tons of TLC to mommy and daddy, tons of love and tons of prayers for renewed grace, strength and vision. One day you will tell the twins their story and the frustration and heartaches of the past months will be far behind you.
ReplyDeleteRely on one another, rely on God, your Father and your strength, rely on all of us who are supporting you and praying for all of your needs.
Focus on those beautiful little faces and let your hearts be filled with love for them. They are truly gifts from God.
As always, the pictures are wonderful; I love the Mickey hoodies. Judging from the expressions on the twins' faces, they love their outfits too !
Please know that whether you write an update or not, whether we hear from you every day or once a week, you are in our daily prayers and thoughts. Not forgotten, always remembered in prayers. We continue to ask Jesus and His precious Mother to meet your needs and give you your heart's desire. I think we all know that your heart's desire is 'going to the zoo' ! Tell Grayson to put a smile on his sweet face and tell Scarlett that she is just adorable!
These photos are just precious. Wow they have changed so much since the beginning. I saw Trish at the shower and she looks absolutely wonderful. We talked about the prayer shawl that Newsong did for you all. Many, many prayers will cover you all when you use it. I told Trish that happen to find the Candy Apple Red in place of Scarlet but still Buckeye made! You all take care and many hugs for you all!
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