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Playing with the Elmo balloon that the Tierney cousins sent him

Hi guys! Well, James did as well as we thought he would...DeAnn was ready to send us home on FRIDAY! Yup, two days after having a large part of his tongue cut off, James proved that he is a great eater and that he has a high tolerance for pain. Tommy and I were not quite as comfortable about leaving so we stayed Friday night and DeAnn arranged for Dr. Marsh to give the discharge orders early on Saturday. We left early Saturday morning and arrived back home at around 1:30. James was so excited to see Emily and Matthew and they were eager to see his tongue. I think that they were both a little taken aback by the stitches and "wet scabs" at first, but then they warmed up to it all.

James has been doing very well since we arrived home. He has been drinking from his sippy cup (a little, but it is getting easier) and drinks very easily from the bottle. He has been doing well with his baby food and even successfully ate some pasta and cheese tonight. Tommy and I think that the most difficult thing for him is the frustration that comes from having to relearn how to eat. He still has a bit of swelling, so it is a bit hard for him to swallow. We are constantly amazed by his persistence. He is so happy to be at home with his toys, free to roam around. He is also so so very close to WALKING! Today, he took about 6-7 steps and is gaining more and more balance. I'm not sure who is more excited about this: me and Tommy or Em and Matt! They are so great to James.

Please enjoy the video that we posted below. Tommy took this video of James in his crib. It shows a lot of his silly personality as well as a great shot of his tongue (towards the end of the video). What you are looking at in his mouth are stitches as well as wet scabs (the white stuff). It can take up to 6 weeks for all of the stitches to fall out. We will take pictures every now and then so you can see the amazing job that Dr. Marsh did with James' tongue. We were so very impressed with his entire staff (including DeAnn and Kristin) as well as the staff at St. John's Mercy in St. Louis. What a great hospital! Thanks for all of your prayers. We pray that you all have a wonderful week and God bless!

Some Pre- and Post-Op Pics

In the waiting room before surgery with Daddy

Look at this cutie! What a smile!

Dressed in his gown, ready for his Versed.


Post-Op in the PICU

Look at me, I can FLY!

Going for a ride to the cafeteria with Mommy and Daddy

Didn't Tommy do an amazing job of writing on the blog last night? Today has been a busy day, to say the least. Right now we are working on eating. James doesn't seem to be hurting all that much (he is only on Tylenol), but he is scared to eat. If you all could say some prayers that he starts eating better, that would be great. His IV began to leak earlier (which is what happens when a little boy tries to cruise around the crib when he has an IV in his foot), so they took it out. They will remove the feeding tube tonight, so he MUST eat. Dr. Marsh's nurse, DeeAnn, has been amazing and she is really doing a lot to help our little man eat. The nurses and doctors here have been great, too. And I must say that the FREE ICEES are the bomb diggity (did I really just say that?). Be sure to look at the post below for a funny pre-op video. And this is for Emily and Matthew--we love you very much and we can't wait to see you soon. We hope you love the pics of your baby brother...he misses you, too. And no Matthew, they didn't cut off James' whole tongue! God bless you all and thank you so much for checking up on us!

After Versed

We thought this was pretty cute. James after his versed (AKA St. John's Margarita), right before surgery. Isn't he so cute?!?!

Surgery Day

Well, you all are in for a treat. I (Tommy) get to take a turn at the blog tonight. Hey, don't all of you jump up in excitement at the same time!

The day went as well as can be expected. James' surgery was the 7th surgery for one of our kiddos. Of course, they have varied greatly in severity, but anytime your child goes in for surgery there is a tremendous amount of anxiety that accompanies the day. The nurses and doctors have been fantastic. The facility is also excellent. I have to admit, I did not know what to expect. The only other time we've been to the hospital was for the initial consultation in February. The doctors offices are very dated as the hospital was built in the 1950's. We were pleasantly surprised that the surgery center, PICU, and pediatric wing are all brand new.

James is still heavily sedated, but he is being weened. Whenever he wakes up he cries, fusses, and squirms quite a bit. The best way I know to describe his tongue right now is that it looks like a wad of bubble gum with stitches in it. His bleeding has been relatively light compared to other tongue reduction patients, so that is great news. However, it's tough to watch him as you know he has got to be very uncomfortable.
His arms are in splints to keep him from pulling out the feeding tube. They started feeding him through the tube tonight and that will continue until he is able to eat/drink on his own. We are praying he can do that as early as tomorrow or Friday. One of the really cool things about the hospital is they have self-serve ICEE machines on certain floors. Granted, they are there to encourage kids to drink following tonsil or tongue surgery, but it is also a really nice perk for the parents (get them free also). I can attest that Bernie is quite excited about these machines. We found them late this afternoon and the joy was undeniable. I foresee many trips to the ICEE machine over the next couple of days!!

We thank you for your prayers and ask for continued prayer that James' recovery stays on track with limited/no setbacks. Check back tomorrow as we will have another update and some pictures and maybe a video.

Tommy

Luke's Celebration

As promised, here are some of the pics from Luke's celebration. I have lots more that I want to share, but I will have to do that when things slow down. Be sure to check out the post below to learn more about James' surgery tomorrow. God bless!

Surgery tomorrow...

Right now, I am writing from Tommy's car on the way to St. Louis, so I am going to make this short and sweet. We are headed to the hotel and will arrive at Mercy Hospital tomorrow morning at 6:30 am for a 7:30 am surgery. Thankfully, James is the first case so we will get in first thing. Due to some insurance issues (i.e. they didn't truly understand what a tongue reduction entailed and that it is medically necessary), we just found out this morning that it was approved and had to pack, get emotionally ready, etc. in a matter of hours. We are having so many emotions: excitement, trepidation, nervousness, etc. Since everything happened so quickly today, we didn't have time to start to worry, so for that, I am truly thankful. Anyway, we would appreciate any prayers, words of wisdom, etc. Feel free to leave a message...when James is older I am sure he would love to read them. We will update Facebook and the blog as well as Twitter. Check out www.twitter.com/aggiebernie. You don't have to be a member in order to read it. Emily and Matthew are in VERY capable hands with Gramma and Grampa--thank you so much to them for traveling to Memphis to help us out. They are the BEST!

I will post pictures of Luke's celebration later this evening. I cannot express how truly beautiful the day was and how amazed we were by the turnout...all of my siblings were able to be there, so all five children were there to celebrate Luke's life. I will post more later...God bless you all!

Remembering on Luke's 2nd Birthday

WOW! I can't believe that it has been two years since we met Luke face-to-face. Two years since we first held him. Two years since that awful diagnosis. It all happened so quickly that day. It is all such a blur, but I wanted to share what I do remember about that day. Some of it is awesome, some of it is heartbreaking, but all of it is beautiful...just like Luke.

* I remember having contractions throughout the night. I wondered if they would need to induce me or if I would go into labor on my own.

* I remember my parents coming to watch Emily and Matthew, take them to school, and then to Build-A-Bear to create a special buddy for their baby brother.

* I remember making sure that I had pictures of them kissing my belly. Funny thing is that Luke is the only one who we did that for.

* I remember Tommy stopping to get a drink and breakfast at Chick Fil-A. I was so jealous because I couldn't eat or drink anything before the induction.

* I remember waiting in front of the maternity ward for it to open. Tommy and I took pictures of each other waiting--the last moments of innocence between husband and wife.

* It's funny, because I can't remember much more of the "Pre-Luke" stage. I remember the fact that I laughed through my contractions (I don't get epidurals--long story concerning my scoliosis). It actually surprised the nurses the way I behaved. You see, I laugh and talk when I am nervous--it's my coping mechanism. When it was time for him to be born, the laughing ceased and the screaming commenced.

* Once Luke was born, I remember hearing him, looking at him, and taking a deep breath that he was here. Then I noticed his sweet nose--really, it was the first thing I noticed.

* I remember everyone coming to visit. I remember Emily, Matthew, Gramma, Grampa, and Nana coming to hold our Wittle Bubba.

* I remember eating and I remember the nurse: "I hear a heart murmur. They are very common. I am bringing him to the NICU to get checked out and will bring him back." I remember everyone saying that I shouldn't worry and that he would be fine.

* I remember everyone leaving to get a bite to eat in the cafeteria. I remember trying to fall asleep, but I couldn't because I knew. I knew in my gut that he wouldn't be alright.

* I remember Tommy coming back into the room and our baby still wasn't there. We waited and waited. Finally, a nurse practitioner entered, but not with Luke. He told us, simply and without any compassion, that our baby had a structural defect in his heart and that he would need to be transferred to the med center that night. He said that the cardiologists at the med center were looking at Luke's echo and that they would let them know the diagnosis. I remember asking this man if Luke would make it. Surely he would make it. He looked at me and Tommy and said, "I can't tell you that."

* I remember the neonatologist coming into our room and explaining Luke's defect: Hypoplastic Left Heart Syndrome. I remember that I knew that defect, but how did I know of it? She was much more gentle with us. She explained that Luke would need three surgeries and that it would be possible for him to survive. Our pediatrician, Dr. Irani had come into the room with her and it was so comforting to have her hug me and tell me that it would all be ok. It really meant a lot to me.

* I remember crying. I remember weeping. I remember wondering how this could have happened and how unreal it was.

* I remember walking with Tommy and a nurse to the NICU to see our boy before they placed him in a helicopter. I remember thinking that we shouldn't be in that room. I remember seeing my baby hooked up to monitors with an iv that pumped meds into his body so that his heart wouldn't shut down before surgery. I remember holding him one more time before they took him downtown.

* When we got back to the room, I remember my OB coming in to talk to us, hug us. I told her that I needed to be with Luke and that I wouldn't stay. She graciously allowed me to leave so that Tommy and I could be with him. As we left, the nurses hugged us and told us that we were in their prayers.

* My dad picked us up (neither of us were in any shape to drive) and brought us home to my parents' house to get clothes before we headed to the med center. When we walked in the door, my mother was there to hug me, really to catch me. I couldn't stand. I could barely breathe.

* My dad, Tommy, and I drove downtown to be with our Luke. I remember when we arrived, we spoke to a cardiologist who explained HLHS in more detail. He gave us a realistic view of the defect and what to expect. When we were finally able to see Luke, he was vented and asleep. How could our baby be so sick?

* Through all of this, I remember Tommy being so strong. He was so strong that day. He had to be. I couldn't handle it. I am so thankful that he is my husband--I couldn't do any of this without him. I remember praying with him.

WOW! This is pretty long. I guess I do remember a lot about Luke's birthday. I remember the good and the bad. I guess that is how you move forward, by remembering. I choose to remember Luke for the soul that he still is: a strong, peaceful, breathtaking soul. I pray that his life and his story will help you remember to remember! Enjoy the above pictures of Luke taken on the day he was born...God bless you all!

PS...Please remember to come out to Luke's Birthday Celebration at Earthman Cemetery tomorrow (Saturday). We will be there at 11 am to celebrate our baby boy. Details a few posts below.

Birthday Week

This time two years ago, we were anxiously awaiting the birth of our third child, a son. Well, he was a girl from about 18 weeks until 37 weeks, but he was all boy. I remember going crazy trying to return all of those girl clothes after having three baby showers for Ava Caroline (aka Luke Thomas). A bit of advice: if you purchase a gift at Target, be sure to include the gift receipt as they will not refund or exchange items without a receipt. Fun times with Target!

Anyway, the three weeks before Luke's birthday are still a bit of a blur. Looking back, I wish I would have spent more time truly cherishing the gift of life that I was carrying: a child who was already fighting to live. I wish that I could remember the feeling of his kicks, of his twists and turns. Unlike my other children, Luke spent more time inside of my womb rather than outside. Luke and I have a special bond because he lived inside of me. I knew him for 9 whole months and others only had the privilege of knowing him for 5 1/2 weeks. How lucky am I? How blessed am I? I just wish that everyone else got to know him as well as I did...he was like no other.

As we enter the week of his birthday, I am asking everyone to remember those children with congenital heart defects and their families. There is a special little boy names Carter Oswalt. I have gotten to know mom Lindy and her husband Bo over the past few months in person, on the phone, and on their blog. Please visit www.caringbridge.org/visit/carteroswalt to learn more about this cute little boy. Carter was also born with HLHS, suffered a stroke when he was a baby, and is now waiting for a heart at Vanderbilt in Nashville. Carter has been inpatient since December 4th and his spirits are waning. Can you imagine being a five year old little boy and having to live in the hospital? Carter has a big brother Spencer and twin baby siblings Landon and Isabella. This family is amazing and their story is full of faith. Please take a moment to check out their site and leave a message. As a fellow heart mom, it means so very much to see that people care about your child. I know that they would love any words of encouragement you have.

Tommy, the kids, and I are so very excited about our trip to Houston. Emily can't wait to work on her Harumika fashion dolls with Nana and Matthew is looking forward to a haircut/Panda Express date with Grampa (no kidding, the kid loves that place). We have a huge list of places that we want to eat: Rico's, Shipleys, Eden Cafe, and Black Walnut are "must eats". We look forward to celebrating Luke's life on Saturday and to visiting with friends and family. I spoke with Sam at Earthman (the cemetery) and he told me that they will put out a tent as well as table and chairs for us. So, we will be there rain or shine...it looks like there will be gorgeous weather on Saturday. I wanted to let everyone know that children are welcome. Our kids (as well as other "little" family members and friends) will be there. We are excited about our turnout...if you haven't let me know that you will be there, please comment on this post so that we will have enough snacks for everyone. We can't wait to see everyone!

As always, I thank you for reading the blog. I hope that you all have a wonderful week and God bless!