6 Weeks Old!!!

A good friend who is also a doctor said to me yesterday "You made it through the first week of having Koby home. Way to go! Doesn't that feel like an achievement?" I looked at him and thought I'm so sleep deprived I can't even think straight. Sure, I guess we did make it through the first week but barely. I feel like we're treading water and barely keeping afloat. We've still been blessed with plenty of help at just the right times whether it is someone wanting to bring a meal or a friend picking up the kids or even a message that someone is still praying for us. All these things are blessings as we adjust to our new normal family life with Koby.

Other things that are keeping me super busy are calling insurance and health care providers to make sure we are getting help that is covered by our insurance. Today we had home health occupational and speech therapy come and what a relief to finally have someone come to us instead of me figuring out how to go there. The therapists were so positive and uplifting about Koby's case. I am too but it makes me feel better to see others hopeful for him as well.

He's come so far in six weeks. The doctors reminded me as we left the NICU that Koby is small and has some catching up to do. He had to spend much of his first month of life healing from the trauma of his birth, so many of his other functions like eating and gaining weight were kept to a minimum. He's in the 3rd percentile for his weight and height for his age. All his jitters and shaking (which are getting better and less frequent since we've had him home) cause him to burn more calories than the average newborn which create another obstacle for him to gain weight. At this point he needs to gain weight to help improve his stamina and energy. This will help him to last longer and be more effective in his therapies. I am also hoping and praying he'll sleep better once he's gained some significant weight.

As he gets more proficient at sucking through practice we get from speech therapy, we can get a swallow study done which will then let us know how safe it is to give him a bottle as a meal. Safe meaning he won't aspirate while he's sucking and swallowing. Eventually we'll start replacing one tube feed a day with a bottle feed. Once he's shown he's proficient with that we'll add in 2 bottle feeds a day until we've slowly replaced all tube feedings with bottles. I can try nursing at any time once he's shown he's safely sucking and swallowing but nursing takes more coordination than a bottle and he may never get to that. I am still pumping in hopes that in a couple months he may be able and want to nurse. I don't know how reasonable it is for me to keep pumping but as long as I feel I sanely can, I will. All the extra milk from all the pumping I've been doing has filled our freezer. If I were to stop pumping we'd have at least month's worth of breast milk for him.

His G-Tube won't look so huge once he starts to grow. That G-Tube can last him quite a while, as long as we can keep him from pulling it out. It won't need to be replaced for size, we'll just start to add more volume through it per the doctors orders as he begins to grow and gain weight.

I can't wait to see what the next 6 weeks bring.






One of our amazing nurses Erica made the darling tie and was patient enough to wait for the perfect moment to catch those darling pics. That was right on the one month mark. I forgot in all the busyness of the last few weeks to post these.