The First Full Day at Home!

Well...I'm finally starting to get the hang of this feeding tube stuff; the challenge is that it just drags on all day long. He is fed every 3 hours, but it takes the pump over an hour to feed him...and then by the time I clean our the tubing, burp his line and administer any meds...we are down to an hour before next feeding....so I have to get the next bottle of breastmilk warmed and ready and prime the pump.......you can see what takes up my whole entire day. "God, please touch Asher's swallow nerves and heal them so that he can take food orally....and even breastfeed!!" But, even with having to deal with all of that......I am still so greatfull that he is home and we can hold him for as long as we wish. I dropped him into my baby sling today and carried him around. He loved it so....and promptly fell asleep for a good long time! I even fed him in there....and just pulled his rolling feeding pump behind me wherever we went.

A closeup of Asher in the baby sling...all snuggled in and cozy ;)

After I laid him in my bed to sleep....sling, blanket and all ;)

He is doing so well at home...and looks so much better than he did in the hospital. He is still skin and bones, but they have me supplimenting my breastmilk with some powdered formula to help him gain weight faster. Not crazy about that.....but the weight will do him good so I go along with it. Personally, I think Formula leads to too many allergies later on in life...but, God is great and He ultimately is in charge of my son's future so I'm not going to worry too much.

Please continue to keep my family in your prayers. I am getting Asher's schedule down pretty well, but I'm having a difficult time making room for Joel in it. Matt and my Mom have been big helps taking care of him and I truly appreciate them ;).

Joel has a very touchy trigger lately and I think our stress is wearing off on him, so please just pray for a downpouring of God's peace to overtake my family and alleviate any nerves.

Also, keep Asher's chromosome syndrome lifted up in prayer. I believe that God can touch him and he will not have to manifest any of the traditional symptoms of this deletion syndrome. Let it be a sign and a wonder!

Alright...I HAVE to make myself go to sleep. I'm exhausted, but when there is so much to be done around the house, etc, I hesitate to sleep, even when I'm tired. Weird....but true.

Blessings!
~Erika~