Sunday, June 27, 2010

A Roller-Coaster

I'm not going to pretend otherwise - the emotions are on overdrive! We welcomed a beautiful, perfect, healthy Baby into our family just over 3 weeks ago. We brought him home, subjecting him to the chaos and love that makes up normalcy in our home. His home. I was surprised by the amount he slept! I was happy that he only seemed to want to nurse once overnight. He was gaining weight and watching his sisters. I snuggled him on the swing and went grocery shopping with just him. Normal life looked promising.

I watched him start to struggle to breathe. "Wow," I thought, "I know babies breathe fast but look at him. Look at his toes, so purple. My girls had little blue toes but his look so dark. Was that nasal flaring?" My usual easy-going demeanor was being replaced by a paranoia every time I looked at him. I was so thankful his follow-up was close and we could hurry and clear up my unfounded concerns. The doctor went with his gut reaction, saying that if we waited until Monday he wouldn't sleep all weekend. God Bless him. My concerns were not unfounded. My suspicions were correct - we had a beautiful, perfect little boy, but he was not healthy.

Although the calendar says he's been in the hospital for 2 weeks I'm sure it's been 4 months. From scared to hopeful to relieved to scared to concerned to hopeful - lather, rinse, repeat. And that's multiple times a day, most days. He has had 2 surgeries, 12 medications, 2 life-supporting machines, heart monitoring, central venous access, drainage tube, oxygen level monitoring, countless echocardiograms, 1 CT scan, 1 MRI, blood draws. His little body has been through more than most people will experience in 50 years of life.

Sometimes I look at him in pure awe - that God's precious gift to us would teach us so much so quickly. That it is thanks to the wonders of modern medicine that he is alive and the prognosis is so good. That someone who was so sick and so tiny could be such a fighter. That God loves us so much to allow us this challenge. Sometimes I picture his face and my arms ache to hold him. I know much more capable Arms are cradling him when I can't. My only consolation is the reassurance that the ONE in charge Loves Joey even more than I do. It doesn't help the emotional roller-coaster, but it's true.

For on-going updates about Joseph's condition, please check out the blog we started just for updates in his condition.

Wednesday, June 16, 2010

Baby Joey Update

First, thank you all SO much for your prayers and support!!! To say it brings peace and hope in such a time would be an understatement. It is how I breathe. I did not truly grasp the power of prayer until I found myself unable to remember any words but still knew I was surrounded by spiritual help.

I wanted to update and clarify what is going on with Joseph, as a LOT has happened!!! Joey underwent surgery yesterday (was it really just yesterday???) Tues to correct his aortic artery. The surgery went very well and Joey tolerated it all quite nicely. We were there as he started to come out of anesthesia and he opened his eyes nice and big at the sound of Daddy's voice!

Last night, several hours post-op, his tiny little body was so tired of fighting. His blood pressure and oxygen levels dropped. Although they were able to stabalize him with medications, his lactic acid and creatinine levels were climbing, indicating that his heart was still not strong enough to provide adequate circulation. They monitored closely all night and this morning made the decision to place him on a heart/lung bypass machine (EcHMO, for my medical friends.) Although he is not breathing on his own and is totally sedated and medically paralyzed, his own little heart is still beating, doing its best. This machine "simply" provides support by circulating and oxygenating some of his blood also. THe good news is that his kidneys are already waking up, a sign that the machine is doing its job.

Tomorrow (Thurs) he will undergo a procedure to correct his aortic valve, which is much smaller than it should be. This is what they suspect caused the problem last night. He will remain on the ECHMO throughout it, and until he stabalizes afterward. Their goal is to wean him from the machine gradually over the weekend. There is about a 60% success rate for kids coming off the bypass.

We have a VERY long road ahead of us, taking one day at a time. Sometimes one minute at a time. I am SO grateful for the prayers and practical support, an outpouring of LOVE and generosity. Joseph was baptized and confirmed Saturday by a brand-newly Ordained Fr. Mick Kelly, who has been back to visit us and offer his blessings and Holy Communion. This is a constant source of strength for us! Please continue to lift Joey up in prayer!


Baby Joseph did very well with the Sx, but took a turn for the worse last night and is now on a heart/lung ASSIST machine that supports his body's function. He is not breathing on his own, but his little heart is tickin' away doing its best. The bypass machine helps support his circulation, but has not needed to completely take over. This will allow his body to receive the circulation they need without taxing his ticker too badly. Tomorrow sometime he will undergo a procedure to correct his aortic valve, which is what they suspect caused the complication from being too small. Although stable right now, he is still deep in the woods and we definitely need the continued prayers! St. Joseph, PRAY FOR HIM!!!

I will continue to attempt to update as much as possible, although I don't expect this to be often. My dear friend Alexis has been posting to her blog, and there is a group going on facebook. We are humbled and amazed at the outpouring of love and support!

Monday, June 14, 2010

Storming Heaven!

Well, that precious little boy Joseph barely had time to acclimate to the overload of his sisters' hugs and kisses before his, and our, world turned upside-down.

He began to have trouble breathing by the end of his first week, and an x-ray revealed an enlarged heart, and an echocardiogram confirmed 3 major heart defects. Joseph is now down at Children's Hospital in Washington, DC, and will have surgery tomorrow - Tuesday June 15th, at 7:30am.

This surgery will be to correct the first and most serious of the defects, which is a long stretch of the aorta that is too skinny. This means that there is not enough blood flow to the rest of his tiny little body, AND that his little heart is working overtime and wearing itself out. By removing that constricted portion his heart will begin to relax and beat the way it should. He will have at least one more surgery and several more procedures in the future when he is older, bigger, and stronger.

I realize this is a very cut-and-dry, simplified explanation. It is 11 pm and my Baby is having surgery tomorrow morning. PLEASE PLEASE PRAY!!! I hope to write more about what's going on in the upcoming days/weeks, as there has been so much going on. In the meantime, just keep Joey in your thoughts and prayers.

Saint Joseph, pray for us!!!
Saint Thomas, pray for us!!!

Friday, June 11, 2010

Introducing the Tramma Boy!

Joseph Thomas, born June 4th

Weighed in at 7lbs, 3.5 ozs and 20 inches long

Already a hit with the Ladies

What is a Little Man to do with all this Love and Affection?

He arrived safely after a natural 8 hour labor, with Mama (obviously), Daddy, and the nurse midwife all excited to greet him! We think he's pretty cute, and given the fact he's been sleeping like a newborn should he's welcome to stay. :)