It is so much more fun to share the good news.
It really is.
I have always promised transparency, so here it is.
Josh and I have one word for this week: empty.
We are both running on empty.
Being that Friday was the last day before school starts, I wanted to do something fun with Kayden and Bryce. The plan was to go bowling.
My mom was at the hospital, and called mid-afternoon to inform me Tessa was setting off alarm after alarm.
She normally alarms 6-8 times in a 24 hour stretch when off CPAP (zero times when on CPAP), and she had racked up 20 alarms in the stretch of two hours.
This usually is a first sign of illness, so the doctor ordered multiple tests to see what would show up.
Her 2pm blood work looked fantastic, but they wanted it re-run last night at 9 pm. If she was at the onset of an illness, it could take a while to show up in her bloodstream.
The 9 pm blood work did not show anything, either.
While we are praising God for that, something is definitely up. We just cannot figure out what. She acts like she is in pain, but we cannot figure out the source.
Josh and I again stayed overnight to rotate holding and pacifying her. It is well worth it for her comfort, but it makes for a long night. Long day following. Long week.
What we do know:
She is gaining weight at an alarming pace.
Her right nostril is plugged or clogged or semi-blocked. Still haven't figured out why or the cause.
Her hemoglobin is declining.
The only way to rectify that is a transfusion.
The transfusion last time possibly led to NEC.
Which led to no feeding, and an IV inserted for nutrition.
Which often goes bad two to three times a day, leading to more blood loss.
To check in on her levels to see if she is sick, more blood tests are needed.
Which makes her hemoglobin decline....so then they want to transfuse.
It is a vicious cycle, and it seems like we are constantly weighing what is worse. She can't live without intestines (NEC), but she also can't thrive without an appropriate hemoglobin level.
How do you decide?
I have a hard time believing that she could be home in 4-6 weeks. We are not even in the same ballpark.
I was prepared for the one step forward, two steps back.
Not one step forward, go back to the beginning.
With so much energy spent on having a sick child, the rest of our life is falling apart. Every last ounce of time, energy, and money has gone in to just surviving.
Must be time to go, my dog just threw up on the carpet.
Nice.
Anyone want two dogs?
3 comments:
Jamie, I am so sorry for what you are going through right now. I know you cannot possibly see the end. I remember being where you are right now. There is an end. God will get you through to it. You are all in our prayers constantly. I just wanted to let you know that even though you are feeling like you are at your worst you made me laugh out loud with your blog today. You just cannot get a break. I remember when times looked so bad for us that we just laughed because if we didn't laugh we would cry and I was afraid if I started I would not stop. So I hope that through all of this you can laugh too.
Praying for you!
Jamie... You know the heart from which I write this. But I want to encourage you. She can live if she has NEC. She can live without intestines. Its not an easy life. But it is WORTH every moment and every day. I believe that Tessa will come out of this just a normal healthy child but I also want to share from a Mama who does it every day that there is beauty EVEN if the "worst" happens. I will pray with all my heart that it won't. But you will be okay. I promise. Its totally okay to be afraid of the worst case scenario... but a funny thing happens when you get there. You make it through. And you realize it was worth the fight. Keep fightin' Mama. Strength only in the Lord in the long run. When you are empty of yourself that is when God can fill you 100% instead of having 50% you trying to handle it all and leaving the other 50% to God. Again... not platitudes from an outsider. But thoughts from the heart of one in the trenches with you. ;) (Sarah)
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