Wait...WHAT did you just say?

I never thought I would hear words like "terrific, fantastic, and great" so soon in regards to Thomas's progress....but that is what the CT surgeon said this morning! I almost cried I was so happy!

Thomas had a good night. Several prayers have been answered and we are so grateful!
-He has not had any episodes of SVT in over 24hours!
-He is waking up more, opening his eyes, chewing on his tube, and moving his arms and legs :)
-He is weaning off of the Epi and maintaining his blood pressure
-His ventilator settings have come down
-He is on Fentanyl now and the Precedex has been stopped
-He is exceeding everyone's expectations so far.....that was one of our specific prayers....not that he would just do "ok"

There are still a few issues that need prayers:
1) His kidney function- urine output is good, but has room for improvement. Also, the lab values used to measure kidney function are too high....hopefully they will improve!
2) His white blood cell count and CRP were very elevated this morning compared to yesterday. This could be just inflammation from steroids and major surgery, but it could be a sign of a brewing infection...which could be devastating. Please pray that he will remain free from any infections!
3) Pray that he will continue to diurese so the swelling will go down enough for his chest to be closed in the next few days

This whole pregnancy and experience with Thomas has changed our perspective forever! We are learning to see everything with new eyes, and are so grateful for the little things and baby steps along the way. We are so humbled by the many prayers and blessings we have received so far....God is so good.

This is a really pretty version of the doxology.....and the video is thought provoking....enjoy

Surgery is over!

We just met with Thomas's surgeon, Dr. Kogon.....the surgery is over and he said the repair went beautifully! The main issue was bleeding...they finished the actual repair about three hours ago but it took all of this time for the bleeding to stop. He was oozing from hundreds of needle holes in his heart and vessels, and they had to slowly give him blood, clotting factors, and platelets. He only needed two sutures to help with bleeding, which is remarkable!

The surgeon has several concerns which are our new prayer requests:
1) bleeding....pray that it will stop and they wont have to go back into his chest to stop bleeding
2) his kidney function....he is third spacing a lot of fluid (getting puffy instead of keeping inside his vessels) and not making much urine. Hopefully this will improve with medication and time.
3) His atria are "twitchy"....pray that he won't have any abnormal rhythms
4) He is on alot of inotropic support (medicines that support his heart function)...pray that they can wean his meds and he can hold his own

This is the first hurdle of the next 48h....which will be critical. Please pray for Thomas whenever you think of him. Pray that he will be stable, and that any complications that arise will be easily managed.

His chest will remain open for the next few days, so his heart will be visible through a goretex mesh patch. It is pretty remarkable.
Hopefully we will be able to see him soon!!!!
We are so grateful for the surgeons and their skilled hands, and we can never thank everyone enough for all of the prayers going up on behalf of our son. I know that is what has carried us this far!

“O Sovereign LORD! You made the heavens and earth by your strong hand and powerful arm. Nothing is too hard for you! You have all wisdom and do great and mighty miracles. (Jeremiah 32:17, 19 NLT)
We are so thankful!!!

Surgery Tomorrow

We are planning for Thomas to have surgery tomorrow, probably around noon. It will last 6-8 hours.
We are very anxious, but trying to trust that the Lord will carry Thomas through his surgery. The surgeons here are excellent, and we are confident in them.


Please pray for strength for Thomas.
Pray for wisdom, strength, steady hands, and clear minds for the doctors and surgeons caring for him.
Pray that Thomas won't feel pain.
Pray for protection for his brain and other organs as he is placed on heart-lung bypass.
Pray that the time of the operation is minimal (ie closer to 6 hrs)
Pray for no complications, no excessive bleeding
Pray that he is able to tolerate coming off of bypass as they thicken his blood, etc (it has to be thinned for him to go on bypass so that it won't clot.....and he is so small that they can't just give him a bunch of blood or clotting factors to thicken it back up like they would to an adult)
Pray for a sense of peace for us....peace that transcends all understanding (Phil 4:7) for today, tonight, and tomorrow......as these will likely be the longest days of our lives.
Pray for a miracle of healing for Thomas.  Pray that the surgery will be easy and successful, and that he will exceed all of their expectations in the recovery period. Pray that he is feisty (like his Mama) and like he was during all of his prenatal ultrasounds :)

Eph 3:20- "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"- we ask (BEG) these things in Jesus's name.

Here is another song by Matt Hammitt
"This is Grace"
http://www.youtube.com/watch?v=pcCQv_mzG5I&feature=related

Love,
Melissa, TJ, & Thomas

Friday

Friday was a mix of highs and lows for us.
Thomas is now on the ventilator, which is something we knew might happen as his work of breathing increased. He does seem very comfortable, and we are thankful for that.
We got to snuggle some with him which was wonderful. We can't hold him, but we could put our hands under his head and back and pretend a little :)
We had a pretty intense talk with one of the doctors.  We know Thomas has a long road ahead of him, and that his surgery won't be easy.  His diagnosis of HLHS is bad enough on its own, but Thomas's small size is definitely another challenge in the way.
We are gearing up for the fight of our lives, as he will hopefully go to surgery in the next few days.
 
Please pray for Thomas to rest, grow, and be strong for surgery.
Please pray for the doctors caring for him.  Please pray that they will see his potential despite his small size and complicated diagnosis.  
Please pray for protection for his brain during surgery.
Pray that he is strong enough to come off of the ventilator after surgery.
Pray for him to remain free of infections and other complications.
Please pray for peace for us, and pray that our faith will remain strong. 

I don't know how we would get through this without all of your support, prayers, and words of encouragement.  Thank you so much.

1 Tim 4
That is why we labor and strive, because we have put our hope in the living God, who is the Savior of all people, and especially of those who believe.

Love,
Melissa, TJ & Thomas :)

PS.
Here is our address for those of you who have been asking
Ronald Mcdonald House
Room 318
795 Gatewood Rd NE, Atlanta, GA 30329

Want to Help?

If you really want to help....please PRAY FOR THOMAS!

Please pray for him to continue to grow for the last week or so of pregnancy.
Please pray for a smooth, uneventful, and unstressful (for Thomas anyway!) delivery.
Please pray for strength for his little body to undergo surgery.
Please pray for the surgeons and other specialists taking care of Thomas, for wisdom for them as they make decisions regarding his care.
Pray for protection for his brain as he is put on heart-lung bypass.
Pray for strength for his muscles, and that he will be able to eat by mouth (many babies have feeding tubes after these types of surgeries).
Pray that he will be free from infections and any other complications.
Please pray for peace for us as we trust our baby to the care of these doctors.
Please pray for a miracle of healing for Thomas, that he will exceed everyone's expectations, and come through everything with flying colors.

Psalm 130:5 "I wait for the Lord, my soul waits, and in his word I put my hope."

Love,
Melissa & TJ