I walked in the lobby of NCH this morning and saw all of the Christmas decorations going up and then it really hit me. We will be spending Christmas here and I'm definitely more emotional about it than I've allowed myself to be. I knew Christmas was coming and I knew we weren't going home any time soon, but somehow seeing the decorations makes it so real and so discouraging. We have been here almost 3 months, but I'm living in a world where it is still early fall. Time does not pass the same way when you are living day to day going back and forth to the hospital. Everything in the outside world is all a blur just trying to get through each day. Usually I'm well on my way to being done with Christmas shopping by this time, but this year I just went to Target yesterday to buy a present for David's birthday on Friday. Everything is an afterthought this year. Hopefully Santa will remember to bring the gifts!
This week is the week of Thanksgiving and I'm finding it very hard to be thankful. I was really good on posting on my "Thankful" post until last week. I've hit a wall, it is so hard to find hope when there is no light at the end of the tunnel. These past couple weeks have been discouraging. We aren't making progress on feeds. Last week they fed Joshua 6mLs of milk then he gave them back 8. They refed 8mLs and he gave them back 15. It was very discouraging. Since then it has been half to all of the feed back as residual. He has to be able to eat, or at least digest, to come home - and he has to breathe. Breathing is making very S.L.O.W. progress, but at least we are on Si-pap again. It would pretty much take a miracle to be home one month from now at Christmas or even by New Years. So now we are hoping to be home by Valentine's Day, but Abby has come up with several other dates that we can adjust our goal to if need be...Daddy's b-day (March 7), Abby's b-day, Jeremiah's b-day...
I've been feeling sad thinking about the preparations & nesting I'd be doing and big belly I should have these last two and a half weeks of my pregnancy. And depending on the day, seeing people who are due around mid-December is very difficult. We drove past Riverside the other day and it made me cry just thinking about what I should be planning for in a healthy pregnancy or even what could have been if I didn't get that infection and was on bed rest just a little longer.
So, I was hoping today's tests (abdominal ultrasound, renal ultrasound, UGI) would give us some answers, but it looks like all the tests so far came back normal - or at least nothing that they didn't already know. Which should have me rejoicing, but I am not. I want an answer. I want to know why we are at a standstill. We have been waiting and growing and growing and waiting for coming up on 3 months and I'm weary. The growing part is good, but Joshua's organs are not maturing proportionately with the growth. We are at the same place with feeds that we were 2 months ago...we are at the same place respiratory wise that we were one month ago.
Meanwhile our bodies are getting very weary and worn. We've got three people in the house (including me) on antibiotics and my body also aches because it is so tired. So so tired. But you know what...Joshua has not given up yet...he is not fighting in such a way to amaze the doctors with progress, but fighting just enough to get to another day, so that is what I will try to do with the Lord's strength. One day at a time. To get to the day when I can hopefully breastfeed my son - to make this pain, the hours, and all the ounces worth it. To get to the day when I can pick up my son whenever I feel like it; whenever he is uncomfortable, or in pain, or tired and just wants a cuddle. To get to the day when he is home and our family is all together. Someday...Some.day....
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
Isaiah 40:29-31
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