2 months old

Well, I never dreamed we would celebrate Ty being 2 months old in the hospital, but here we are.  This past week has been full of tests and putting pieces of the puzzle together.  Ty has endured countless sticks, draws, scans, and probes!  He's had xrays, ct scans, scopes, and even a ph probe down his throat for 24 hours!  His NG tube (feeding tube to his tummy) was advanced to NJ (to his intestines) and they stopped all tials by bottle, then his NJ tube was pulled back to NG and we upped his trials by mouth.  It has been a roller coaster.

(starting to coo and "talk" a little)

He, of course, has taken it all in stride.

 (Peek-a-Boo... I LOVE YOU!)

(first real tummy time)

We have added 3 new medications, oxygen, and a new diagnosis to the mix.  It's official.  Ty has pulmonary hypertension.  This can be some scary stuff.  It can have no cause and severely limit your life span and physical abilities or it can cause you to simply take some meds or change your diet and lifestyle.  It can be cause by something else going on - like a heart defect, and may go away when you treat the other cause, or may stay for life.  This has been a really tough one for Chis and I to accept and we are still struggling with the unknown of Ty's situation.

What we do know is that there is a possibility that if we treat some of what we think might be contributing, there is a chance (very very small, but still a chance) that this ugly thing called Pulmonary Hypertension will go away or be "reveresed."  We hare praying like crazy that this is the case because otherwise PH has no cure.

For now, the plan is to possibly send us home some time next week if he is doing well on all of his new medication.  We'll be under close monitoring from his cardiologist as well as his pulmonologist that we have added to the mix.  The goal is still to get to August or September so we can have his second open heart surgery and then see what things look like after that.

(LOVE this little swirl... been there since birth)

In the meantime we have been trying our best to take life one day at a time and enjoy it as much as possible.  We are trying so hard not to worry about the future.  Taking Ty home again is going to be a very scary thing for Chris and I.  Plus, Ava Grace has laser surgery in Cincinatti next week (see tab on sidebar for explanation of this under Ava Grace or PWS birthmark).  Her surgeries are rather routine for us at this point, but it means one of us will be home alone with Ty and the other in Cincinnati with both girls flying solo.  So, it should come as no surprise that we ask again for prayers and lots of them.

 (life in the hospital...)

 (Zoo visits and forts!)

There is nothing we can do but to rely and trust in God.  He has carried us this far and will continue to be our rock.  We have days when the fear creeps in or the "It's not fair" or "why us" drifts across our minds, but for the most part we have been able to give each day to our Heavenly Father and know that no matter what, we are in his hands and he has gone before us.  If it were not for his peace within us, neither of us would be able to function at this point.  Thank you Lord - we praise you for all that you have done, all that you are doing, and everything you have planned for us.

 (We have come to enjoy Pizza Perfect across the street)

(....and the baker around the corner)

(...and ice cream down stairs)

I have to also ask for prayers for my mom.  She begins chemo on Thursday and will do so every other week for 4-6 months before she can have surgery.  My heart aches for her and Daddy and my whole family, but I know that God will bring us peace, comfort, and joy in the morning.

Sing praises to the Lord, O you his saints,
and give thanks to his holy name.
For his anger is but for a moment,
and his favor is for a lifetime.
Weeping may tarry for the night,
but joy comes with the morning.
Psalm 30:4-5