this is hard.
i’ve deleted and retyped that phrase about ten times now. i’m not sure what to say other than this is hard.
it’s constant mental and physical battle and my goodness it’s only 11am.
last night we went over his echo yesterday with one of the doctors who classified the leaky valve as “moderate plus” this is what they classified him as before going into surgery. which to say is disappointing is an understatement. we cried and prayed last night until we drifted off to sleep.
this morning i woke up with a bit more resolve. we are going to take care of this. we are going to be ok. i prayed for a positive attitude and peace of mind and maybe even a good day.
we walked into the room and baby otto was moving around like crazy, crying and uncomfortable. i keep saying to myself this is the worst feeling. wait no this is the worst feeling. but one of the worst feelings is watching your baby struggle against machines and pin pricks and needles and not being able to pick him up and tell him it’s going to be ok.
so instead i stroked his head through the mask and spoke into his ear that we were here for him. that we are in this place with him.
it was discovered that he had a fever of 104 so that brought in more labs, tests and our room is an ice box but it seems to be working and the fever has come down significantly since 6am. his eyes are opening now and we took the cpap mask off and he now has oxygen tube into his nose.
he got an NG tube in again for feeding so after two days little man is starting to get some nourishment.
at rounds this morning they changed up a bunch of his meds to keep blood pressure under control and to get rid of this fever. a little more meds to ease the pain a bit more.
they are hoping to take his chest tubes out today which will bring us one step closer to holding him.
we spoke with the surgeon and they are now just hoping this repair will work for a few years. (hoping for a minimum of 6 months). but there is still a chance that it could work forever. i keep reminding myself that he just had surgery wednesday. the rest of otto thank goodness is looking positive. good heart rate, breathing rate, oxygen level etc. all is not lost.
i keep reminding myself that we still have room for many miracles. and that we still have all of you praying for baby otto all over the world.
I can’t even imagine how hard, but there is joy in this picture. Otto is looking to Joe because he knows he can trust him. Just like you and Joe can trust the Father in heaven. It is amazing to see him just 2 days post surgery awake and responding.
Thank you so much kathy. You know me haha. I just want everything to be over. I want him to be well RIGHT NOW. Patience has never been my thing but my goodness am I sure getting a lesson in it right now.
The first three days after surgery is just so hard, like you said. You’ve got this Abby. That little man is such a fighter and you have many many of us sending you prayers every day!
Thank you so much. Ready to be over the hump and on to the good part.
I am praying for your sweet baby, Otto.
Thank you!
Keeping you in my prayers. I can only imagine how gut renching every moment feels right now.
It’s so hard but we are going to make it through this.
Tears are just flowing reading this and picturing your mama heart being squeezed so tightly. I will continue to pray for miracles to take place within his heart. Babies are amazingly resilient – their ability to heal leaves me in awe every time!! Also praying for healing of your mama heart and that you can fully take joy in each new milestone!
Our little guy had surgery @ 3months. It is just so hard to be forced to stand-back and watch. The physical ache in your arms (not to mention your heart) created by your desire to pick them up and run away from it all is so strong. I started praying with my hands open as I begged God for a better day…forcing myself to remember that our kids are a gift and as much as we wish we could clasp our hands over them and control what happens, we can’t. Remember that Otto is a masterpiece and God hasn’t left His work unfinished…even if he is using a dark colored thread right now. Praying that someday you will be able to stand-back and look at the tapestry God weaved of Otto’s life and see the beauty in the dark spots. Praying that you have strength for each day and hope for a brighter tomorrow.
Love that picture of Joe and Otto! ☺️
Praying.