I got to PCMC at 10:30 on thursday to them doing an echo on Teagan, not knowing what that would mean later that day. Aunt Pammy was his nurse again so we (Grandma Dee, Pam, & Brytten) sat around his bed making small talk, when Grandma Dee noticed someing white dripping on Teagans belly. Pam checked it out and realized his RA line was leaking, her fast actions lead to a rush of work. An IV team that we did not enjoy finally got a line in his big toe and by big I mean huge for such a little guy. Then they took us down stairs to have A PICC put in the back of his knee that would make up for the leaking line. The doctor warned that it might take awhile and they only had a small window to do it in or they would try again tom. They told us to come back in an hour. When I went back in the hour pam said it went great, it took us 20 mins. to get him down there and only 5 mins to do it. We thought our hurdle was over for the day and just when our hearts started to beat again, we looked up to see all the floor docs and a cardiologist headed in our direction. They told us that on Teagans echo from this morning they found two blood clots, one in his right atrium and the other in his inferior vena cava. They were also quite concerned about all the fluid still draining from his middle line. Then they said they would give us time to process all that and they were going to do a ultrasound to get a better look at the clots. The ultrasound revealed that only one blood clot exsisted, the one in the heart. She also said lets stop scratching our heads and have the fluid tested from the drain. It told us that it was high in glucose, meaning fat from my breast milk. So the solution was to take him off my milk and put him on fat free formula. So thats what we are trying and hopfully the drainage will stop in the next couple of days. We left a peaceful baby in the care of Chad as we went home to be with Mason or Spiderman (depending on the moment).
Today me and Ryan arrived at 10 to oue beautiful Baby boy resting peacefully. The night went good and they are trying to wean him off his vent in the next couple of days. He has done ok at trying to breath on his own, they call it exercising. Other wise he is just resting and recovering. They did another echo today and the clot is not any bigger and in one day we can not expect it to be any smaller. He still has drainage, but it is not as clotty.
At this time in our life we live by the moment, as a look in my sons open eyes I see a spirit that is bigger than you and me. I see a full heart, even though they tell me he only has half. A heart so big and full of love that he would voulenteer for a life like this, I can not believe my Heavenly Father loves me enough to send me such a special spirit. Teagan has taught me more in this short while than I could ever learn from a healthy baby. I never thought I would be up here for something like this, but this place is something else. A nurse that has never had an children of her own,but hopes and prays that some day we can take our baby home, she lets me lift him while she changes his bed because she knows that the only time i can hold him. I'm surrounded by people full of hope, selfless hope, hope for the baby next to them as well as their own. I hope for a miracle that some day our baby will be home in our arms with his loving big brother who told me today," I worry about him, mom." And to a loving sister dog, Roxy who is so concerned and doesn't quite understand where her baby went. I hope for a day when he won't be full of IVs and tubes and a vent. I hope for the day when I can dress him and wrap him in all of his new blankets, and hold him forever and ever. Teagan, "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be." Thanks for all the love, prayers, calls, gifts, and support. We really appreciate it.
Biopsy and Fun
3 days ago