Thomas Allen Behm

Thomas Allen Behm, infant son of Thomas and Melissa Behm, was born November 14^th, 2011, and died November 28^th, 2011.  Thomas was born with hypoplastic left heart syndrome.  He fought for two weeks, and is now perfectly healed in heaven.  The story of his life can be found at www.weheartthomas.blogspot.com. 

He is survived by his maternal grandparents, Monty and Cecilia Allen of Savannah,  paternal grandparents, Linda Behm of North Augusta, SC, and Mike and Eileen Behm of Geneva, OH, and paternal great-grandmother Betty Behm of Madison, OH.   He is also survived by many aunts, uncles, and cousins.

A graveside service celebrating Thomas’s life will be held Saturday, December 3rd, 2011, at 11am at Bonaventure Cemetery in Savannah.  Friends and family are invited to the Allen residence, 337 E. 45^th Street, following the service for visitation.

Remembrances in Thomas’s memory can be made to Savannah Christian Church, 55 Al Henderson Blvd, Savannah, GA 31419, or Young Life of Savannah, PO Box 14456, Savannah, GA 31416.  

What joy for those whose strength comes from the Lord.....when they walk through the Valley of Weeping, it will become a place of refreshing springs, where pools of blessing collect after the rains. (Psalm 84:5-6 NLT)

Thomas is Healed

We started this blog to share our journey to heal Thomas's heart.
His heart is now whole, and we must begin the process of healing our own broken hearts.


Dear Thomas,
You are now perfectly healed and safe in the arms of Jesus. 

You are so precious, and so loved.  We wanted you so badly, and were so excited for you.  We are so thankful for the fourteen days we had with you.  They were such a blessing....such a gift. You were such a little fighter.  You taught us to take nothing for granted.  You brought us to our knees in prayer and closer to God.  Those fourteen days were so hard, but so wonderful because they were with you.   We wouldn't trade them for anything.

You will never know pain or fear, and what you are experiencing now is more wonderful than we can imagine.   We are thankful for the promise that we will see you and hold you again in heaven.  

While our arms are empty, we know you are being held by someone who loves you more than we do.   Your daddy and I are being comforted by a God who knows what it is like to lose a son....only He gave His Son freely for us, and for you my sweet baby.

You were fearfully and wonderfully made, and God knew each of the days of your life before one of them came to be (Psalm 139:14, 16 NIV).  We are so thankful that God made you for us, and trusted you with us.  You touched more people in your two weeks than most people do in their whole lives.  We are so proud of you, and so proud to be your parents. We know that our suffering was not in vain.  Your precious life will live on in our hearts, and in the hearts of so many others. You are leaving quite a legacy.

Our lives will never be the same because of the time we spent with you, sweet Thomas. We miss you so much already.

We'll love you forever, we'll like you for always....as long as we're living, our baby you'll be!

I have fought the good fight, I have finished the race, I have kept the faith.
(2 Timothy 4:7 NIV)

Urgent! Chest closure update

Thomas's chest was closed this afternoon. Initially he tolerated it well, but around 4pm his blood pressure dropped. He was given volume and all inotropic meds were increased, but ultimately they decided he wasn't tolerating it and he is now having his chest reopened as I type this. We knew ths was a risk, as the first 12-24h after closure can be touchy. I'm so disappointed.

Please pray that he will tolerate this well and his blood pressure and other values will normalize quickly.
Pray that he is stable enough to try closing again in a few days.

This is such a roller coaster! Please pray that things will settle down and he will be strong so we can make some forward progress.

"how can you say the LORD does not see your troubles?
....Have you never heard?
Have you never understood?
The LORD is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure the depths of his understanding. (Isaiah 40:27, 28 NLT)

Monday morning

Thomas was stable overnight, and we are grateful for that! He is still a little acidotic, but the surgeon is hopeful for chest closure this afternoon. He will see how Thomas does today and make the final decision then. If they do close his chest, the OR team will come to the ICU and the procedure will be done at his bedside.

The intensivist on rounds thinks that they should push for chest closure even if it does compromise things from a ventilatory standpoint. He said it is not unusual for kids to end up on the oscillator (different type of ventilator) for a few days. This made me freak out, of course, but I appreciate the heads up that it may be necessary. Apparently it is used more routinely in this environment than I am used to.

The bloody urine is still present, but improved. Kidney function is not good, but improved slightly.

Here are today's prayer requests:
- that they will close Thomas's chest when he is ready
- pray for wisdom and steady hands for the surgeons doing the procedure
- pray that he will tolerate the procedure well, won't have any complications, and won't need the oscillator
- pray for kidney function to improve
- pray that he won't develop a chylothorax and that he will remain free from infection

Thank you!!

"I, the LORD, made you,
and I will not forget you. (Isaiah 44:21 NLT)

In case anyone was worried....

I made it home with the MILK! :)

Sunday after rounds....

Even the doctors caring for Thomas aren't sure what caused him to fall apart overnight!

The top two theories are that he is over dry now (intravascularly depleted), and also that wasn't ventilating adequately.
He has had an air leak around his ET tube the past few days as he has been diuresing, and they changed him to a bigger tube this morning. His blood gases have improved, and hopefully that will continue.
They have increased his dopamine from 5 to 7, have stopped diuril, and have started a calcium drip. He also got albumin overnight and this morning. I'm wondering if he needs a little blood....he looks a lot paler to me than he has. His NIRS isn't really improving, and his o2 requirement has gone from 30-40% in the past few days. His hgb/hct are stable, but he has to be concentrated because of how dry he is.

He needs to be dry as can be for chest closure to be successful, but it's hard because you end up chasing a lot of other values that go awry. It's definitely a sensitive balancing act.

His fentanyl was increased and he looks more comfortable. I'm thankful for that.

TJ left a little while ago with three coolers of dry ice and frozen breast milk. I have to admit I was proud. He has been threatened with his life if it thaws!

Here are our prayer requests...sorry its more than usual! Thank you so much for interceding on our behalf!

-pray for wisdom and discernment for the doctors and nurses caring for Thomas, so they can figure out what is causing these changes and how to address them
-pray that Thomas will stabilize quickly
- pray that he will remain free from infection
-pray for his kidney function to improve. He has had blood in his urine the past few days as well
-pray that he will be ready for chest closure soon, and will handle it well
-pray that he won't develop a chylothorax
-pray that all of these little issues will settle down so we can move forward
-please pray that we will somehow be home together by christmas
-pray for safe travel for TJ and my mom

“Be still, and know that I am God!” (Psalm 46:10 NLT)

Rough night

Thomas had a rough night, and we are not sure yet if chest closure will happen today or not. He seemed fussy and uncomfortable, his NIRS values were lower than usual, and he seemed like he was working harder to breathe over the ventilator. They made the decision to increase his sedation and give him medication to paralyze him. I'm still waiting on rounds so will know more after that.

This weekend has been an emotional one for me, and my hormones aren't helping! The busyness of the past two weeks has slowed down....thank goodness. Everything has kind of caught up with me....the magnitude of everything we have been through, how exhausted I am, etc. I am just so worried about Thomas and hate to leave his side. This is quite a roller coaster, and things can change so quickly. It's also hard to not know when the next steps forward will occur. This is definitely teaching me patience. Im also sad that TJ is heading back to savannah to go back to work. I'm going to miss him, but real life must go on outside the CICU.

Thank you to everyone who has been leaving sweet messages,comments, and texts. I'm still not up for phone calls or visitors, but I cherish every message! I just want to sit with Thomas, look at him, and pray for him. After all, this is my maternity leave. By the time we get home it will probably be time for me to return to work. I am just craving time alone with my precious baby.

Please keep praying for healing for Thomas!
I'll update more specific prayer requests after rounds so I can hear their take on what happened overnight.

“My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. (2 Corinthians 12:9 NLT)

One more day...

The surgeons decided not to close Thomas's chest today, and are planning to do it tomorrow. That is fine with me, as it's another day for the swelling to improve.
Part of me is anxious for it to be closed since it is the next hurdle on the long list of baby steps ahead of us, and it is also a risk for infection. Another part of me is going to miss that little window into his chest. There is something reassuring about being able to watch that little heart pumping away. It is only the size of a strawberry! It reminds me what a miracle our bodies are, and how Thomas was "fearfully and wonderfully made."

Everything else at rounds was pretty stable. Kidney function hasn't really improved, but urine output is good. his abdominal X-ray was clear this morning, but he will finish the course of antibiotics to be safe.

Please continue to pray for:
- improvement Of his kidney function
- lots of urine output so swelling will improve
- for successful chest closure tomorrow, that he will tolerate it well and won't need to be reopened
- That he will remain free from infection
- that he won't develop a chylothorax

My health may fail, and my spirit may grow weak,
but God remains the strength of my heart;
he is mine forever. (Psalm 73:26 NLT)

Thanks for thinking of us today,and most of all thanks for praying for Thomas!

Friday night

Today was a good, quiet day....just what we needed!
Thomas was resting and comfortable. He is continuing to make steady progress, and we are thankful!
It looks like they may close his chest in the morning, so I wanted to make sure and ask for prayers for that tonight! We have been warned that sometimes babies have a "slump" after chest closure, so hopefully we can ward that off :)

Here are our prayer requests.....as always, we can't thank you enough for praying for Thomas!!
-pray that chest closure will go smoothly, and that he will tolerate it well
-pray that his wound will stay free from infection
-please continue to pray for his kidney function and urine output so that swelling will continue to improve
-please continue to pray for his colon- that xrays will remain clear
-pray that he will not develop a chylothorax (thanks to our awesome nurse Amanda for giving me possible upcoming complications to start praying about!)
-pray for Jada- Thomas's neighbor in the ICU....she is a beautiful baby girl who had surgery on Monday as well (different diagnosis). She has the sweetest parents! Pray for healing for her, and that she will continue to make progress!

He comforts us in all our troubles so that we can comfort others.  When they are troubled, we will be able to give them the same comfort God has given us. (2 Cor 1:4 NLT)

Thank you to all of our "comforters" who have been praying for us and encouraging us!!!

Grace

Dear Thomas, Melissa and TJ,

Please know that as I guest author this post, we are with you. We are near and we are far, although behind you; constantly praying for peace, comfort and healing. We are awed by your faith and blessed to be present on your journey.

A fund has been set up to honor Thomas as you focus on him, your greatest gift and leave the details of ordinary life in our hands.

To the "WeheartThomas" readership-

Please go to any Wells Fargo and ask to donate to the "Thomas Behm Donation Fund" [Melissa and TJ are the sole beneficiaries] to ease the distance between the cardiac ICU and home.

This was set up by a dear friend who happens to care for critically ill children while being a mother to two little girls. This is our gift to you.

Love,

All of us

Happy Feet

Oh, how we love these little bitty legs and feet!

And, for the record, I know these slippers are ridiculous.
But I dare you to look at them and not smile :)

Thomas is modest like his mama....we're keeping his upper half off of the internet until his chest is closed....but I couldn't stand to not post any pictures!!!

Friday update

After waiting in the hospital cafeteria for rounds for three and a half hours......nothing has changed! Thomas is stable. His abdominal X-ray looks good, and we are so thankful. His WBC went down to 18, and his crp is down slightly to 5.6. Kidney function levels are still really elevated, but stable. The CT surgeon said they might close his chest tomorrow if swelling improves some more!

That is all for now...I'm anxious to go sit with Thomas!

Please continue to pray for his colon,his kidneys,urine output, and for swelling to decrease.

God has not promised sun without rain,
Joy without sorrow, peace without pain.
But God has promised strength for the day,
Rest for the labor, light for the way,
Grace for the trials, help from above,
Unfailing sympathy, undying love.
-Annie Johnson Flint

Thanksgiving

Thomas has been stable today, and that is good news!
We had a good day. We had Thanksgiving dinner in the hospital. It was provided by the Cunningham family for all patients, family, and staff. Their child had congenital heart disease and surgeries here 15 years ago, and they were so grateful that they have been providing Thanksgiving dinner for the children's hospital ever since! We were able to meet other families and patients, and it was really special. It made us start to think what we could do to help others in similar situations in Savannah next year. It was definitely a blessing to us.
My Dad came up from Savannah for the day and got to see Thomas for the first time :)

I have so much to be thankful for this year
-Thomas- the miracle that he is, and the progress he is making
-Egleston, and the excellent medical care he is receiving
-TJ- my wonderful husband, he has been so sweet and so strong through this whole ordeal. He has put up with all of the hormones, tears, and makes milk runs down the hall every three hours during the night ;)
-We are eternally grateful for all of our friends and family, and the people we don't even know who are praying for Thomas
-We are thankful for God's provision during the past few weeks. He is the only reason the three of us have made it through all of this!
-We are thankful to know that even if the unthinkable happened to Thomas, we have the promise of all being together in heaven someday.

We hope everyone had a happy Thanksgiving, and were able to spend time with family.
Our little family was content just to be together!

I'm worried...

Thomas continued to have heme (blood) positive stools overnight, and there was thickening of the bowel wall on X-ray. No free air though, which is good. They are calling it NEC today for sure. Hopefully it remains medical NEC and not surgical. It is frustrating because we have an entirely new team of doctors because of the holiday. Yesterday the ICU doc and peds surgeon thought the X-ray looked good, but today's ICU doc said he saw pneumatosis on the film from yesterday. WBC is improved, and crp is basically the same. Still a lot of room for improvement with renal function and urine output.
Yesterday they were talking about closing the chest in the next few days, but today's crew said we weren't close to chest closure. I don't want to rush anything, but I wish we had some consistency with plans, etc.
Today Thomas's condition was described as tenuous....a big change from terrific! Yikes!

Here are today's prayer requests:
NEC- please pray for quick resolution, no progression, and that no surgical intervention is not necessary
- pray that kidney function will improve significantly
- pray that urine output would increase so swelling can improve
- pray he is stable enough for chest closure soon because open chest is portal for infection
- pray for TJ...he feels he is getting a cold. It would be devastating if thomas got any kind of cold or infection..and so TJ needs to get better quickly and keep his cooties to himself!

Happy thanksgiving to everyone! We are so thankful for everyone's support and prayers. We are so thankful for our precious Thomas and how God has kept him safe so far!

Give thanks to him who alone does mighty miracles.
His faithful love endures forever. (Psalm 136:4 NLT)

Wednesday evening

Today was a good day except for one thing.....Thomas had a bloody stool.

Best case scenario is that it was caused from all of the bleeding from surgery, or from the heparin he is currently receiving.
Worst case scenario is NEC- necrotizing enterocolitis. His xray looked good, his belly is soft, and his lactic acid level is still decreasing, so hopefully this is not the case! It is concerning though since his white cell count and CRP were elevated this morning. To be safe, Flagyl was added in addition to his Vancomycin and Gentamicin (antibiotics), and he will remain NPO (nothing by mouth- but he's never been fed by mouth!) Pediatric surgery came by for a consult and they think he looks good too. They will be following his xrays and labwork and keeping a close eye on things. We would really appreciate prayers in regards to this!

We did get some good news today....Thomas will probably get his chest closed in the next few days if he continues to do well! Yay!!

Another great thing is that we have basically weaned off of Epi! Now just on Dopamine and Milrinone. They keep Epi going at a minimal rate just so its ready to go if they need it before the close the chest :)

We have been so blessed by the excellent care Thomas is receiving here at Egleston. Our nurses and doctors are all wonderful!

Everyone keeps asking if we are going home for Thanksgiving....no, we are not. We are going to be very content to be sitting in the CICU with Thomas.....we have so much to be thankful for!!!

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

no internet!

We have been trying to post an update but the internet was knocked out at Ronald M's hizzy. (house)

Thomas is still looking good. There are a couple new concerns, we will address once we can post from a laptop, and not a phone!:)

But he is doibng good, please continue to pray for complete healing.

1 Corinthians 2:5

"Your faith should not stand in the wisdom of men, but in the power of God." 1Cor 2:5

Today was a good, quiet day.  Thomas is exceeding the expectations of the surgeons and the cardiologists, and for that we are so thankful!  TJ and I know the only explanation for this is all of the prayers for Thomas! 

The complications he is having are to be expected after the Norwood.....but as I have said before, we still have a long way to go! 
He only had one episode of SVT today, and was able to get out of it on his own (kind of....he's on two medications to prevent it!) His urine output is improving, and the bleeding is under control.  We still need to watch these things carefully though!

He is still on Dopamine, Epi, and Milrinone to help his blood pressure and heart.  


He hasn't really woken up yet, and that makes me a little nervous.  He will move his toes, twitch a little, and will move his mouth.  As I was leaving tonight he moved his head a little and you could see him squeeze his eyes shut.  I'm hoping he will wake up more tomorrow. There is nothing to do but wait and see at this point!

Thanks again for all of the prayers!  They are working!

Post-op Day 1

Thomas did well overnight (considering he just had extremely complicated surgery yesterday) and for that we are grateful!

Overnight he had several episodes of SVT (supraventricular tachycardia = very fast heart rate).  This can be dangerous because when the heart is beating this fast, it isn't able to pump well enough to provide blood where it needs to go.  This can cause decreases in blood pressure and other signs of decompensation.  Luckily, Thomas's blood pressure didn't drop during these episodes, and the SVT responded quickly to a medication called Adenosine.  He is also Digoxin and  Precedex to help keep this under control.  It is probably caused from irritability and stretching of the heart muscle from yesterday, and may be caused by some "tickling" from some of the wires in his heart.
He is on Milrinone, Dopamine, and Epi, and has weaned some on these meds. 

Thomas also has significant chest wall edema (swelling).  When you look at his chest xray from yesterday, you see about 1/2 inch of soft tissue (skin, fat, etc) on either side of his ribs.  This morning he had about 2inches of soft tissue (mostly swelling this time) on each side of his ribs.  Swelling is a known complication, which is why his chest was left open after surgery to allow room for this. We need his kidneys to get back into action so he can get rid of some of this fluid.  Sometimes the kidneys can be slow to wake back up after being on heart-lung bypass, so he is on Lasix and Diuril  (diuretics) to help with this.

Because he isn't urinating well, his body held on to the anesthesia longer.  It usually takes 6-12h for kids to wake up after surgery.  He isn't waking up much, but his toes and feet were responsive this morning, which was good.  Also, the Precedex that he is on for his heart is a sedative, so it is hard to tell. Once he really wakes up he will be on Fentanyl.

He is on the ventilator, of course, and his settings have come way down. Yay!
His lactic acid level is monitored to follow his perfusion, and has come down from 98 (after surgery) to 24. We are happy about that! 

 He is on Vancomycin and Gentamicin to prevent infection since his chest is open (its covered, but still a huge risk for infection). He is on Heparin to protect his new Sano shunt in his heart.
He still won't be able to eat for a while, and they are resuming his TPN (nutrition through his IV).

The next goals for Thomas are for the swelling to decrease enough that they can close his chest, and the step after that is to get off the ventilator.  Baby steps!!!

We are so thankful and grateful for everyone's prayers.  They have sustained us and brought Thomas through this first surgery!

Here are our prayer requests for now:
1) Kidney function- pray that urine output will increase
2) SVT/arrhythmia- pray it will stop and be easily controlled with medication
3)  Pray that his chest wall swelling will go down enough for his chest to be closed in the next few days
4) Pray that his overall fluid/swelling will go down so that he can be taken off the ventilator successfully after his chest is closed
5) Pray that he will wake up quickly to look at us :)
6) Pray that he won't have any issues with infection or bleeding
7) Please continue to pray for the nurses and doctors caring for Thomas.....they are amazing and we are so thankful!

Sorry for all of the medical jargon...but I have alot of nerdy buddies who like all the details.   I say that in love, because I'm a nerd too :)

The Norwood....aka What they did yesterday!

Here is a link that describes Hypoplastic Left Heart Syndrome well, for anyone who is interested:
http://www.cincinnatichildrens.org/health/h/hlhs

Thomas had the Norwood procedure yesterday with the Sano modification (Sano shunt instead of BT shunt).

He is stable this morning and did ok overnight. We ended up being too exhausted to stay at the hospital overnight and came back to the RMH to sleep! I called every 3h to check on Thomas while pumping. He had a few issues overnight that I will go into more detail on after we get back from rounds in a little while.

We can go to "family rounds" on Thomas. We sign in between 645-7am, then hang around the hospital until they are rounding on him. After that we are kicked out of the unit until 10 when rounds are over (or later if they are doing any procedures, etc).

Anyway, I want to see if there were any other issues besides the ones I'm aware of before I post an update.

He is pretty stable though, considering all he went through, and we are so thankful!!!

Great is his faithfulness;
his mercies begin afresh each morning. (Lamentations 3:23 NLT)

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 update #4

Thomas is still in the OR, and is off of heart-lung bypass.
His blood is thinned out to go on bypass. He has a lot of suture lines and is still "oozy"...so they are waiting for him to "dry up." They are slowly giving him blood products, etc to accomplish this.

This is definitely a milestone in this procedure, but we are nowhere near being out of the woods. Please keep praying for Thomas. He will be just as fragile over the next 48 hours as he has been in the OR. He will prob be in the OR a few more hours...we aren't sure.

We are waiting in the surgery waiting room, and it is finally quiet in here. It seemed like most families were tailgating instead of going through the scariest day of their lives. Oh well...I am happy for them. I wouldn't wish this on anyone.

We love our sweet Thomas and hope he is out of there soon. Everytime someone in scrubs walks in this waiting room my heart drops! Thanks for all of your prayers....they are what has carried us through this so far!!! We are passing the long hours by praying and reading everyones sweet comments on the blog and facebook, emails, and texts. We are so blessed!

“But I said to you, ‘Don’t be shocked or afraid! The LORD your God is going ahead of you. He will fight for you! (Deuteronomy 1:29, 30 NLT)

third update

Thomas is still in the OR. Both surgeons are still working on the repair, and it is going as expected. He is still on bypass and is stable.

Please keep praying!

But I will call on God,
and the LORD will rescue me. Morning, noon, and night
I cry out in my distress,
and the LORD hears my voice. (Psalm 55:16, 17 NLT)

surgery update #2

Surgery is progressing, and Thomas is now on the heart-lung bypass machine

Please keep praying!

This is what the LORD says: Do not be afraid! Don’t be discouraged, for the battle is not yours, but God’s. (2 Chronicles 20:15 NLT)

First update

The first incision was made at 12:27pm.
The OR nurse will update us every 1-1.5 hours, and the whole procedure will take 6-8 hrs.

'The LORD himself will fight for you. Just stay calm.” (Exodus 14:14 NLT)

Pray without ceasing....

Thomas went back to the OR at 11:30am. It will take about an hour to get him ready, and they will call us when the procedure starts, and hourly after that. I will keep you all posted!
I got to hold Thomas again this morning and he opened his eyes to look a us. It was wonderful!

Pray that he will be strong and brave today, and that he will be dreaming of our snuggle time in the chair while he is asleep. We are holding those blue booties and praying over them.

So be strong and courageous! Do not be afraid and do not panic before them. For the LORD your God will personally go ahead of you. He will neither fail you nor abandon you.” (Deuteronomy 31:6 NLT)

The morning of surgery...

We are nervous, as you can imagine, and my stomach is in knots. We are trying to spend as much time with Thomas this morning as we are allowed.

Don’t be afraid, for I am with you.
Don’t be discouraged, for I am your God.
I will strengthen you and help you.
I will hold you up with my victorious right hand. (Isaiah 41:10 NLT)

Please pray for our precious Thomas today!
We will be getting hourly updates during the surgery and will try to post updates here as often as we can.

Dear Thomas

Dear Thomas,
"The LORD himself watches over you!
The LORD stands beside you as your protective shade.
The sun will not harm you by day, nor the moon at night.
The LORD keeps you from all harm and watches over your life.
The LORD keeps watch over you as you come and go,
both now and forever. (Psalm 121:5-8 NLT)

Your father and I love you more than you will ever know.
Tomorrow is your due date...but instead of being born, you are heading into surgery for the fight of your life. If we could take this from you we would in an instant. We will be praying desperately for you the entire time, and so are more people than you would believe!
We can't wait to see you when it is over, and are looking forward to taking you home in a few weeks.
I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be!

The Day Before

Thomas is going to the OR tomorrow for his Norwood procedure.....the first of the three heart surgeries needed to repair his hypoplastic left heart.  Originally we were told he would go around noon, but now they are saying it will probably be 8am or 9am.  We are nervous, but know there is no choice here.  We are thankful he will be in wonderfully skilled hands tomorrow, and know that he is constantly in God's hands. 
We had a wonderful evening with our sweet boy.  Our nurses let me hold him in a chair today.  It was so special, and I wouldn't trade that time for anything in the world.  I cried because I was so happy to finally have the chance to hold him!  After we put him back down he opened his eyes for us!   His eyes haven't really been open since the first night he was born, as they are usually matted shut.  I have been praying that he would open his eyes for us. He was looking around and looking at us.....it was priceless!

We know that whatever happens tomorrow, our lives will never be the same because of what we have been through so far, and what is yet to come with Thomas.

Please pray for Thomas when you think of him tomorrow!

Prayer requests:
Dr. Kogon and Dr. Kirshbom- for wisdom, clear heads, steady hands, and for endurance for the long procedure
For Thomas- pray that he won't have any pain and won't be scared
Pray that he will know how much we love him
Pray that he will be safe on heart-lung bypass- for no bleeds, air bubbles, or clots
Pray for protection for his brain and other organs
Pray that he can successfully come off of bypass at the end of the procedure
Pray that he will exceed everyone's expectations and that the procedure will go perfectly, without any complications
Pray that he will remain free from infection
The first 48 hours will be the scariest....please keep us all in your prayers during this time.
Pray for us to be brave as we send our baby into surgery.  Help us to be strong and have a sense of peace tomorrow.

We are praying without ceasing for our precious Thomas.  I am reminding myself that God gave us this sweet baby, and that "all of the days ordained for him were written in your book before one of them came to be."  (Ps 139:16)

This song "Let Go" by Matt Hammitt seems very appropriate for tomorrow.  Although we don't want to let go of Thomas, we have to let go of the whole situation, and know that God loves us and is in control.
http://www.youtube.com/watch?v=aKkHi5lJ4yc

Thanks so much for all of your love, support, and prayers.
I don't think we could get through all of this without it!
Love,
Melissa, TJ, & Thomas

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

Saturday, Nov 19th

Today was a quiet day, and we were able to spend a good amount of time with Thomas.  My favorite place to be is right at his bedside, holding his hand with one of my hands, and resting my other hand on his little chest.  I like to feel his heartbeat with my finger.  His chest is so smooth and soft....and I know it will only look like that for a few more days so I'm trying to memorize it.
Thomas is still on the ventilator, and we expect him to be until he has surgery.  He has been struggling today and yesterday with a metabolic acidosis.
Hopefully we will get to spend alot of time with him tomorrow.  We know we need to rest, sleep, and eat.....but we don't want to be anywhere except with him.

Here are some specific prayer requests that we have for Thomas:
Please pray that he would increase in strength leading up to surgery
Pray that the doctors can correct his metabolic acidosis
Pray for protection for his brain, kidneys, intestines, and liver- some of the acidosis is caused by decreased perfusion to these organs (because his heart needs to be fixed!)
Pray for wisdom for the doctors caring for Thomas
Pray that our little guy will be ready to fight as he is prepared for surgery

I have a confession.  I "showed out" (as TJ put it) in the CICU yesterday, and am probably being whispered about as the hysterical Mom in 2107.  Don't worry, I didn't stomp my feet or snap my fingers......but I am ready to fight for my boy, and everybody knows it :)

Isaiah 43:1-4
"Don't be afraid, I've redeemed you.
I've called you by name. You're mine.
When you are in over your head; I'll be there with you.
When you're in rough waters; you will not go down.
When you are between a rock and a hard place,
It won't be a dead end-
Because I am God; your personal God,
The Holy of Israel, your Savior.
I paid a huge price for you...!
That's how much you mean to me!
That's how much I love you!"

Thanks for all of your prayers!!!!!
Love,
Melissa & TJ (& Thomas!)

Comment Confusion

It sounds like people are still having trouble leaving comments! We wanted to clarify how to do this, because we really love the sweet words from everyone :)
Under each blog post you will see "O comments" or "7 comments" or something like that.  Click on the word "comments."
It will allow you to write whatever you want.  Please put your name in the comment (if you want- so we will know who it is from) and then select "post as" anonymous. That is easier than setting up one of the other ID things it asks for.
That should work, but please let me know if it doesn't!
Love
Melissa, TJ, & Thomas

Holding You by Matt Hammitt

This is another song off of the Every Falling Tear CD by Matt Hammitt.  It is a good reminder for us now as we approach surgery.

http://www.youtube.com/watch?v=oycQAghbFLw

Love,
Melissa

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

Friday Update

Thursday was a very busy day!
We got packed up to leave the hospital, and Thomas got transferred to Egleston just before lunch time.  We went over there to meet him, but didn't get to see him much because he was busy getting admitted- all of the doctors were seeing him, he was getting labwork, lines put in, ekg's, echocardiograms, etc.
His nurse yesterday was Amanda, and she was great! She will have Thomas throughout the weekend and we are thankful. 

Thomas is on some oxygen now and seems a little more comfortable.  His work of breathing really picked up yesterday, so I'm happy to see him resting. He is also on a medication called milrinone to help prevent pulmonary overcirculation (which will happen until his surgery)
He is jaundiced and on bili lights as well.

We are  both physically and emotionally exhausted after this entire week, so sorry for the lack of updates yesterday.  It was very overwhelming.  We are looking forward to a quiet weekend and spending as much time as we can with our boy.  He was so busy yesterday with all of the admission process that we had to leave him alone too so he could rest from all of the action.

Please continue to pray for Thomas:
That he will continue to grow and be strong for surgery
For wisdom for the doctors caring for Thomas
That they will see him as our precious baby, not as a complicated heart defect who barely weighs enough for surgery (minimum is 2kg, he is 2.2kg)
Please pray that Thomas will know how much we love him even though we can't hold him or be with him all the time.
Please pray for quick healing for me from the c-section
Please pray for TJ and me to be strong, and please pray for us to have sense of peace through all of this

"Come to me, all you who are weary and burdened, and I will give you rest."
Matt 11:28

Love,
Melissa

Transfer Day

Today was action packed! We transferred from Northside Hospital to Egleston. Here are a couple pictures of Thomas and his team leaving Northside.

Getting ready to go!

Thomas's massive ride! This thing is basically a NICU on wheels.

Here is getting into the ambulance.

Moving on Up

We spoke with the cardiologist today, and they are planning to transfer Thomas to Egleston tomorrow morning! Once there they will continue to evaluate him, and he will probably have surgery early next week.
We don't know exactly when the transfer will take place because we are at the mercy of the Transport Team.  Adults are transferred in regular ambulances.....Thomas will be transferred in the enormous NICU-on-wheels type ambulance that they use for babies :)
I am excited because I will be discharged tomorrow too! We have already told our nurse the plan so that the OB can get us out of here first thing in the morning. We will be moving into the Ronald McDonald house at Egleston and will stay there while Thomas is in the hospital.  Several people have asked for our address here in Atlanta, so I will be able to let you know after tomorrow!

Thanks for your continued prayers and support.  Please continue to pray for Thomas, his doctors and nurses,  and for us as we head into this next step of the journey.   We are excited to be moving forward but very nervous as well.

Deut 31:8
"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."

Love,
Melissa & TJ (& Thomas!)

Just resting!

Single most asked question......revealed!

What color is Thomas's hair?

It is a sandy blonde.....with a receding hairline like his father :)

Thomas wanted to do a major reveal, but his "style team" was unavailable (and he's not allowed to wear outfits yet!)

This is TJ. The  biggest thing I am learning to do here is live in 3 hour increments.  Thomas is less than 48 hours old but it seems like he has been with us much longer!  We have no concept of what day it is! Melissa is pumping every 3 hours and then I have to run it down to the freezer in the NICU. The elevators here are slower than rush hour traffic. I get back to the room and get her situated and then try and rest or eat, and then it's time to restart the process. 

Melissa can attest to the fact that I can fall asleep anytime or anywhere. I fell asleep standing up in the elevator at 3:30 am this morning, missed my floor and only realized it because some people got on talking loudly!

No news so far on our little guy......still just hanging out in the NICU.

Thanks for checking on us, and for all of the prayers!!!

Love,

TJ (& Mel & Thomas)

Family Photo

Melissa got to change Thomas's diaper and the NICU nurse allowed her to hold him! We were so happy for this unexpected treat :)

More Pics

Pictures.....Finally!

I finally got to go see Thomas around 10:30 this morning!   It all feels very surreal.....especially since I can't hold him and didn't get to see him initially except for few seconds.  Its also strange that I am in the NICU looking at our baby, not a patient!

He is continuing to be stable on room air, etc.  He isn't allowed to eat at this point and is getting nutrition through his IV.

We are so excited he is finally here! 
Here are a few pictures!
How can such a little peanut already have two chins? 

He's Here!

We welcomed Thomas Allen Behm at 7:51pm!
He weighed 4lbs 13oz and was 18.5in long.
He is in the NICU, is breathing on his own, and is getting the prostaglandin medication that will keep him stable until surgery.
Labor was not progressing, so they ended up taking me to c-section.
We are so excited that he is here! I got to see him briefly in the OR, and hopefully will get to go to the NICU sometime during the night to see him.
I don't know how to get pictures from the camera to the iPad, so will post some as soon as I can :)
Keep praying! Our sweet boy has a long road ahead of him!

Psalm 107:1
Give thanks to the Lord, for He is good! His love endures forever!

Moving slooooowly :)

Apparently Thomas is very comfy and in no hurry to make his grand entrance! This would have been nice to know considering how much stress the last eight weeks of contractions caused us! He is tricky already :) I just got an epidural (AWESOME- don't judge) and the doctor broke my water. Hopefully things will pick up from here on out. She said it could still be another twelve hours, so who knows!
We are humbled and overwhelmed by all of the sweet messages and prayers on behalf of Thomas!! Thanks to everyone for your support!
Love, Melissa

Here We Go!

We got to the hospital around 3:30 this afternoon and got settled into our room.  They gave me some medicine to get things going, and will start pitocin in the morning to help augment contractions. 
They are monitoring my contractions and Thomas's heart rate, and everything looks good so far. 
We got to meet the Neonatologist on call, and  it was good to review the plan with her. 


We are so excited to meet Thomas, but it is hard not to get anxious with all of this waiting.  I know I would be nervous to be having a baby for the first time even if things weren't so "dramatic" (thank you Angie)! 


I know that God is in control, and that he made Thomas for us and loves him more than we do.  I know He knows the number of hairs on his head and how all of this is going to unfold.   I'm trying to remind myself of these truths and of this promise:


^{Isaiah 46:4
4} I will be your God throughout your lifetime—
      until your hair is white with age.
   I made you, and I will care for you.
      I will carry you along and save you.


Thanks to our friends and family for all of your words of encouragement and prayers. 
We will keep you posted! Hopefully Thomas will arrive tomorrow!!!


Love, 
Melissa (&TJ.....he is asleep on the fold out bed!)

War Eagle!

This game is appalling (so far)....but War Eagle anyway!

TJ made it to Atlanta, and I'm glad we're all together again :)
We are nervous and excited for tomorrow and Monday.....excited to meet our little boy, but terrified for all he will have to endure in the first few days and weeks of his life.

Phil 4:6-7

⁶ Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Thanks again for your thoughts and prayers!
Love,
Mel & TJ

Every Falling Tear

One blog that has been a source of encouragement to us is

bowensheart.com

It tells the story of Bowen, who is the son of Matt and Sarah Hammitt.  We don't know them, but Matt is the lead singer of the band Sanctus Real.  Bowen was born in Fall 2010 with hypoplastic left heart.  He had a rough start, but is now over a year old and thriving!  Matt just released a new CD called "Every Falling Tear."  All of the songs were inspired by their experience with Bowen.....the feelings leading up to his birth and afterwards as he went through surgery, etc.

The first song on the CD is called "All of Me".....I wasn't able to find an official video for the song, but here is a link to the song with lyrics on youtube...
http://www.youtube.com/watch?v=50ygAc2qP5A&feature=related

Enjoy.... and grab a kleenex.
Again, thanks for all of your thoughts and prayers!!!
We are so grateful for all of our family and friends!!


Love,
TJ and Melissa

Atlanta!

Mom and I got to Atlanta yesterday, and TJ is coming this weekend.  We are staying with my cousin Sarah and are enjoying it!  The past few weeks have been so busy....it is really nice to be up here and relax a little.
Today I had an appointment with the perinatologist, and got to see one of the pediatric cardiologists too.  Thomas's heart still looks about the same, so that is good.  After that was my OB appointment.  We will be going in to the hospital Sunday afternoon/evening to start the induction process.
Thomas was sweet enough to hold out long enough for us to make a trip to Anthropologie.....being 38 wks pregnant is really the only way to get out of that store cheaply :)

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

My Apologies

If I were Pinocchio.....my nose would be two feet long!
We made the decision initially to only tell family and close friends about Thomas's diagnosis.
After we first got the news, I was unable to talk about it or think about it without bursting into tears!  TJ had the blessing of ignorance (from a medical perspective) initially, but this diagnosis meant many of my worst fears coming to life for my baby. 
 The main reason for keeping the news  quiet was so that I could continue to work! I have the best, most thoughtful patients, and I get asked about the pregnancy,etc, about 30 times each day.  I knew I didn't have the emotional strength (or the time!) to tell every single one what was going on!  And we know how Savannah is....once a few people know, the whole town knows!
As you can imagine, it is exhausting to talk about, especially at this point when we all have more questions than answers about all that is going to happen after Thomas is born.
Anyway, I sincerely apologize to all of patients, nurses, friends, and anyone else I told "everything is great, and yes ,we are delivering at Candler".....and I hope you can forgive me.
It was so much more beneficial for me to have everyone treat this as a normal pregnancy, be excited for us, and to be surrounded by positive energy.  It really helped me to enjoy this pregnancy as much as possible, and to stay excited (instead of terrified) about our sweet boy. I couldn't have handled 20 weeks of "Oh, Melissa....I'm so sorry," etc, etc.
I am sorry to anyone I have offended, and I appreciate your understanding!

The Plan

"The Plan" (in quotes because who knows if this baby has his own plan!!) is for us to travel to Atlanta in time for Thomas's delivery, which will be some time around 39 weeks.
He will be born at Northside Hospital, stabilized,  and then will be transferred to Egleston Children's Hospital.
He will be in the Cardiac ICU at Egleston, where they will study him from head to toe as they prepare him for surgery.
He will have three surgeries....
the Norwood, performed within the first week of life
the Glenn, performed at 3-6months,
and the Fontan, which is done between 2-4 years of age.
The Norwood is by far the scariest procedure, and the most dangerous.  He will be very fragile even after he recovers until he has the Glenn procedure.
We will be in Atlanta for several weeks with Thomas (average hospital stay is 3-4 weeks)
We will use this blog to keep everyone updated as frequently as we can, and we are so thankful for everyone's love and support!
We will do our best to respond to emails, texts, and calls, but we will be pretty preoccupied with our little boy! (and you can't use your phone in the ICU!)
In the CICU he will be very fragile, and is only allowed two visitors at a time. 
We will probably be exhausted, stressed, and learning a crash course in cardiothoracic surgery and cardiac physiology. Because of this, it is really not a good time for visitors.  We will let you know when things stabilize and that changes!
We can't tell you how much we appreciate all of the offers to come visit while we are in Atlanta!
We are so blessed to have such wonderful friends and family, and we are so thankful for your support and prayers!
Love, Mel & TJ

Dear Thomas,

Do you know how much we love you?
We are so excited to meet you!
You aren't even here yet....and you've already changed our lives forever!
On March 15th, 2011 we learned you would be joining our family in November. We were so happy!
On June 7th, we were thrilled to find out you were a boy!  Within a few days we had picked your name and started planning your nursery.
On July 5th, we went to our 20 week ultrasound and learned that you had a problem with your heart.  Within the next few weeks you were diagnosed with a serious and rare heart defect called Hypoplastic Left Heart Syndrome (HLHS). 
You have a long road ahead of you. We know that God made you for us, and we trust Him to carry through all that is to come. 

"For you created my inmost being; you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful, I know that full well.
My frame was not hidden from you when I was made in the secret place.
When I was woven together in the depths of the earth, your eyes saw my unformed body.
All the days ordained for me were written in your book before one of them came to be."
--Psalm 139: 13-16

We love you, and we know you are going to be our little miracle!