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!

MAD

I'M MAD!


There, I said it. I feel better. I am MAD.

I am mad that our baby boy isn't here to celebrate his second birthday with us. I am mad that I won't get to see him blow out his candles or smear frosting all over his face. I am mad that he won't be able to run around with the other children at his celebration. I am mad that instead of kissing his face on his birthday, I will be kissing the ground where his body lays.

I am mad that no one thought to cut a lock of his beautiful hair for us on the night that he died. I am mad that no one thought to make an impression of his little feet and hands. I am mad that I have nothing concrete that I can touch and feel aside from clothes that he wore.

I am mad that some have forgotten him, and never mention his name. I am mad that at times, I feel awkward when even I mention his name to those who have forgotten. He was here. He was ours. He was yours.

I am mad that all we have are memories. I am mad that Emily and Matthew lost him. I am mad that James never got to meet him. I am mad that I don't know what to say when people ask me how many children I have or how old they are. I gave birth to four children. I have four babies.

I spent part of the afternoon looking over Luke's home folder that Texas Children's sent home with us. We were told to record a daily weight, daily pulse/ox, and feedings. Surprisingly, I didn't cry. Instead, I searched. I searched for a pattern. I searched for a reason. I searched for an answer. I didn't find much, except the fact that Luke was vomiting quite a bit the week before we lost him. But as I looked at this folder and contemplated its contents, I felt thankful.

I am thankful that Luke didn't suffer the night he went to heaven. I am thankful that God gave Luke his miracle and took him to heaven to play with his angels. I am thankful that we didn't have to watch Luke suffer through and endure more surgeries. I am thankful that Emily and Matthew were in bed on the night Luke died. I am thankful that they were not faced with the chaos and trauma that faced the adults that night. Believe me, it is difficult for me to grasp and comprehend. I cannot imagine how a five and three year old would have processed that evening. I am thankful that, as a result of Luke's life, we welcomed a new, very special soul in James. I am thankful that God continues to send me his own little "messages" in the form of dreams, thoughts, feelings that tell me "it is all going to be alright and according to my plan". I may not have agreed with God's plan at the time, but as He has given me time I have begun to understand what He was doing and how all of His plans come together like a puzzle. I am thankful to have a God who made me human and who still accepts me and all of my human-ness.

Thanks for letting me vent a little...I have so many friends who blog, who are so eloquent and beautiful in their thoughts and feelings. I wish I had one ounce of their ability, but for now I will be thankful for the gift of gab that God has given me. Please remember Luke's birthday celebration if you will be in Houston on March 13th. It will be at Earthman Funeral Home at 11 am. We will have snacks, drinks, cupcakes, and a balloon release. There is an invitation in the post below. Please don't forget about our sweet angel. And please remember those children who are suffering from heart defects (including Asher, Nia, Carlie) and children who are suffering from cancer (Hans, Layla--in her last days, and Katelyn). There are so many other horrible things that affect children and please pray for their peace and healing. God bless!

An invitation to you all...

Please join us as we celebrate Luke and his life. The whole family will be in Houston to celebrate our sweet soul's amazing life. Luke would be two years old on March 12th and we look forward to celebrating with him at his site on March 13th at 11 am. We will have snacks, cupcakes, and a balloon release to heaven. We would love to have anyone and everyone attend. If you can make it, please leave a note in the comments section. That way, we will have enough goodies for everyone. I spoke with Sam at the funeral home today and he let me know that they will put up a tent as well as chairs and a table, so we will be set! Again, if you live in or near the Houston area, we would LOVE LOVE LOVE to have you attend our celebration. Luke didn't have a lot of time on this earth, but we want to make sure that he knows how incredibly loved he is and will always be. God bless you all and don't forget to hug your babies!!!!

We thought James needed another specialist so...

...we decided to get him one! Notice the sarcasm?!?! Anyway, we have "adopted" a new specialist: a pediatric plastic surgeon named Dr. Jeffrey Marsh. We were given Dr. Marsh's name by Dr. Beckwith (yes, THE Dr. Beckwith) as he is the go-to guy for tongue reductions in Beckwith Wiedemann Syndrome Children. Dr. Marsh is in St. Louis, so Tommy and I decided to take James on Valentine's Day for an appointment yesterday. We left Emily and Matthew with my parents (are they great or what?) and traveled through the snow (it snowed a lot in St. Louis) on Sunday afternoon. James did pretty well until the end, when he was tired of sitting in the darn car seat. When we arrived in St. Louis, we decided to find a place to eat on The Hill. For those of you who aren't familiar with St. Louis, The Hill is the place to eat if you want quality, authentic Italian food. We found a parking spot at Rigazzi's. Um, can you say "YUMMY"? Wow, I had an amazing chicken dish and Tommy ate a delicious mozzarella-chicken concoction. James had a fun time eating his chicken baby food, crackers, and bread. There are some cute pics of our Valentine's dinner together. Gramma and Grampa took Emily and Matt to a fancy dinner at a local restaurant and they had so much fun--yay for a super great Valentine's Day.

Yesterday, we had our appointment with Dr. Marsh. It was also my birthday. Yes, I am 21 (again) and I had a wonderful day. My sweet husband also bought me a really cool (and very much needed) gift: a new laptop. Yay for Tommy! Thank you, baby. But I digress...so we met with Dr. Marsh and he had a lot to tell us before he looked at James. Then he looked at James' tongue and told us what we needed to hear: James needs a tongue reduction and without it, his lower jaw will continue to move forward which will cause severe jaw and tooth issues. This was a big deal to us as we had prayed for a concrete answer from Dr. Marsh. That is exactly what we got. Then Dr. Marsh introduced us to DeAnn, who will be the nurse who is in charge of James post-op. We really appreciate the fact that James will be taken care of by a nurse who knows how to deal with BWS kids and tongue reductions post surgery. DeAnn showed us before and after pictures of BWS children who have undergone surgery--needless to say, there were some tummy-churning photos, but we have seen worse. Today, I scheduled the surgery for March 24th. My parents will come up to watch Emily and Matthew again and we will head to St. Louis. Please pray for us as we anticipate this surgery. We are expecting James to be in the hospital for about 5 days. It is a major surgery, complete with an overnight stay in the Pediatric ICU. We are having a number of feelings: hope, anxiety, fear, excitement, and acceptance. We know that this is the best decision for our Sweet Baby James and we are confident in Dr. Marsh's abilities. And it doesn't hurt that people have come from as far as Guam, New Zealand, China, and Italy to have a tongue reduction surgery performed by him.

This is all for tonight...please remember all of the babies and children who are battling for their lives. There are way too many of them and they need prayers. God bless you all and thank you for checking in on us and for all of the birthday wishes for James!!!! Don't forget to scroll down for lots of pictures...

Birthday Fun!

We celebrated James' birthday on Saturday and had a blast! Instead of gifts, we asked everyone to bring items for the NICU at Le Bonheur. I had contacted Becky up at Le Bonheur a few weeks ago and she let me know that they needed onesies, preemie outfits, and toiletries for the parents who stay over with their babies. We brought an amazing collection of items to Le Bonheur today and we had a great time. It was so neat to see all of James' old Le Bonheur buddies who took such amazing care of him. He was presented with a special t-shirt and a certificate thanking him for being a young philanthropist. Thank you so much to everyone who donated items for the NICU--they were very much appreciated!!!! Below are some pictures of our hospital visit today, Valentine's Day in St. Louis, and James' birthday party.

The basket we brought to Le Bonheur...FULL of items for the NICU!

Becky, Me, Matthew (happy as ever), James, and Jane

Gramma and Grampa posing with us (unfortunately, Tommy was out of town and couldn't make it today--he was bummed!)

Jane with James. Look at that BIG belly and that designer belly button!

Valentine's dinner in St. Louis with Tommy and James. I LOVE LOVE LOVE the look on his face!

CUTE Daddy!

Matthew trying to break the boot pinata.

The family before we sang "Happy Birthday"

Grampa and James waiting for friends to come...notice his "sheriff" shirt?

Yummy smash cake...he ate so much that it all came back up a few minutes later!

Look at the amazing cowboy cake that my friend Kelly made for James. She is awesome! Check out her cakes at http://www.kellylowrycakes.com/.

Emily standing in front of the pickles that she helped pour in the bowl. Pickles are her favorite!

Thanks for checking in on us! God bless you all!

It seems like just yesterday...

...that we welcomed our fourth child.

...that we heard his cry.

...that we knew he would live.

...that we saw his sweet face.

...that we watched as they took him.

...that they wrapped his belly in plastic.

...that we couldn't feed him.

...that we couldn't hold him.

...that we were reminded of God's infinite love.

WOW! Can you believe it? James is ONE YEAR OLD! What a day! It seems like just yesterday that we shared the news of Cuatro with all of you. Now he is a great big boy. He is a toddler. When did that happen? We are so thankful that James has joined our family and we are eternally grateful for the joy that he has brought to our family. We had a small celebration at home today, but will have a bigger gathering this weekend. Instead of gifts, we asked that people send items for the NICU at Le Bonheur. I have spoken with the charge nurse there and she let me know what they need: basics like preemie clothes, onesies, and toiletries. We are very excited to deliver the items on Tuesday and show everyone how well James is doing. One day soon, I will update with all of his tricks--he's a funny kid.

I wanted to share bits and pieces from our Caring Bridge posts on February 11th, 2009. I thought it would be great to show just how far our baby boy has come. Keep in mind that both Tommy and my sister were writing that day:

James Benedict Haberman was born and was screaming like a good little boy! They've taken him to NICU, and are evaluating him right now. Someone will post more when we get the details (weight, length, etc.), but for now the doctors seemed pretty optimistic.

It looks like the little man was quite the partier in utero - he had tied two knots in his umbilical cord (from all that dancing), and that is probably why his amniotic fluid was down. It's good that they got him out, and now the process of handling the omphalocele begins.

Apparently, the 4 week early baby boy is well over 6 pounds. In fact, he's 6 pounds 15 ounces. Almost 7 pounds! Holy cow! I just talked with Tommy and he told me that James is rosy and pink, and absolutely adorable. Tommy is on his way to LeBonhueur as I type. Bernie is still at Methodist Germantown, and she's definitely happy to have Baby James here. She needs to get some rest and take care of herself so that she can get over to see Baby James soon.

I [Tommy] just returned from LeBonheur and a nice visit with James. However, you never get used to NICU's and all the monitors and the constant beeping, wondering if there is something wrong with your child.

James continues to do very well. They did some initial blood work and it came back with great results. Although the surgery itself will be stressful, tomorrow might be the most important day in terms of James' prognosis. The doctors will perform a series of tests on James' heart, kidneys, brain, and chromosomes to determine if there are any other anomalies. Please pray that these tests come back "negative" and that the only thing we will deal with is the surgery to fix James' omphalocele.

I was able to meet with a member of the surgical team. He was very happy with James right now. His guess was that surgery would be early next week or possibly over the weekend. He said the omphalocele looks very good and that it only contains small intestines. James also had a couple of diaper changes while I was there which the doctors were also happy about as it indicates that all his intestines/bowels are working as they should

Thank you for your prayers and support. It's amazing to open the guestbook and see all those people thinking about our family.

When I read these words, I still get teary eyed. I think about what a blessing all of our children are and how thankful Tommy and I are that we have them in our lives. We are thankful for our family friends and how supportive they have been over the past year(s). We are also thankful for all of you and your constant thoughts and prayers. We always enjoy seeing your comments and appreciate your taking the time to check in on us. Have a wonderful weekend and God bless!

PS...don't you just love the pics of James? Check out http://www.shannonpaynephotography.com/. She does a great job (thanks to my friend, Katie, for sending Shannon's info.).