I didn't think I would blog as much since Cohen is at home, but I find myself needing a link to the outside world!!!! We are so used to being on the go that being home is a little strange. I love it, but its a transition.
Cohen is really starting to adjust to being at home and in a different environment. He doesn't look quite as scared as he did the first day or so! People are still poking and prodding at him quite a bit, but at least it's done by Justin and I now.
He is really a sweet natured little boy. He is very calm and generally pretty happy. We were not 100% sure what to expect when he got home. I think Justin and I both are surprised at how easy he is to handle, and how much more "normal" he seems here. I guess in the hospital still attached to all the monitors and machines made him seem so fragile. We are learning not to be so nervous about him. Justin looked at me yesterday and said "Hey, do you know we have 3 kids?" We laughed. Us. With 3 kids. Whowoulda thought?
God has blessed us beyond measure with 3 amazing children. A few years ago I would have never believed it------=)
The only real challenges we have faced since we got home are the "G" tube leaking and trying to get his schedule down correctly. The original plan from the hospital was bolus feedings at 8-12-4-8 during the day and use the continuous feed pump at night from 10-6. This is so he could get the amount of formula needed to meet his daily "goal" the nutritionist and doctor has set for him, and so he (and us) could sleep without being disturbed by bolus feeding at night.
We thought this plan would work for us.....but the first 3 nights were terrible. We changed his clothes and G tube dressing at least 3-4 times a night due to being milk soaked from the leaky G tube and pump. He was not sleeping at all, and I think it was mostly due to all the commotion, not because he wasn't tired.
My mom is in town this weekend (thank goodness) and she suggested we just try and bolus feed during the night and see what happens. I also called Mary Farris' mom Kim to get her take on it, since she has been dealing with a G tube for close to 2 years. She said she doesn't use the pump at all----I was surprised since I thought this is what I was "supposed" to do. The only reason I was hesitant is because he gets almost 7 ounces through the pump during the night, and there is no way he will get that much with bolus feeds.
We gave it a run last night and are happy to say we had dry clothes, no G tube leaking, and a much, much happier baby. He slept from 10-1:30, and then from about 3-6. Major improvement from the previous nights! We adjusted the feed schedule to 6-10-2-6 a.m. and p.m. We will be losing 1 total feeding compared to the pump, but I think as long as he seems satisfied that it will work out fine. I plan on talking to the nutritionist on our next visit. With preemies it's important they continue to gain weight and I want to make sure he gets the proper nutrition he needs to be big and strong!
I have been hesitant to mention this BIG news I heard a few days ago, because I know how things change in the NICU, but it looks like Cohen's buddy Emma Claire will get to GO HOME tomorrow. Can you imagine? Emma Claire and Cohen getting to go home in the same week? It is beyond a blessing. Emma Claire is such a warrior, which isn't surprising considering who her parents are! Emma Claire is their first baby, and they have waited patiently to bring her home for a long time. Justin and I are so happy for Matt and Emily. We love you EC and can't wait to see you grow up!