Leaving!!!!!!!!!!!!

Never thought this would be my update 4 days post op......but we are going home! Chest tube, pacer wires, and surgical lines came out yesterday. Discharge Echo is done and looks good. I am so happy!!!!!!!! I'll give more of an update on everything when we are home. God is so good to our family!!

Been a long week......worth every minute!

As I last posted surgery was scheduled for December 1st. It didn't happen, nor on the second did it happen. December 3rd Olivia's 6th birthday ended up being the day! We stayed in the hospital on the 3oth with nothing to eat all night waited until 4pm on the 1st when they told us some big emergencies had come up and it wasn't gonna happen. They let him eat and then held his food at midnight to go to surgery on the second....it was awful they wake them so often for vitals in the hospital he would wake up then couldn't go back to sleep because he was so hungry. So when they told us the morning of the second he couldn't be worked in for surgery but was a 90% go for the 3rd we decided to stay in a hotel for the night so we could all rest. Best decision ever!

They took him to surgery about 845 that morning, it took about 2 hours to get his arterial lines in....only an hour and a half for surgery. By 3 we were able to see him and he looked so good... not much swelling at all, and only on chest tube with very minimal bleeding. By 8p.m. that night he was extibated and put on nasal cannula, by midnight he was breathing completely on his own. About 4 this morning he took 2 ounces of pedialyte.....no tube at all (hopefully never). They told us this morning we would get to move up to the floor this evening or tomorrow morning depending on bed avaliability. This afternoon he well get to try some formula, I pray that goes well so we can stay away from the tube!!!!

Thank you all so much for your prayers!! I could have never expected it would all be going so well so soon.....but that is how God works, unexpectedly in HIS own time!!

Here we go again...

Today was the Heart Cath. We got here at 11a.m. Raef couldn't have anything to eat after 5a.m. Of course when we got here after an hour waiting we find out that we were being pushed back. Unfortunately we have learned that things are never on time at Vanderbilt. Things always take longer than they are supposed to. I guess that is why they are the best. Once we finally got called back at 2p.m., it was underway. It took about three hours this time, much longer than last time. After it was over they called us to a conference room and said that everything looked exactly the way they had expected it to and we are on for surgery tomorrow afternoon. I am so nervous but very ready to get it over with!!

Well it has busy around here. Tomorrow is the 17th and we were supposed to have surgery. Last week we got a call that we had to reschedule they had nothing available until December 1st. So we will do the cath on November 30th (my birthday :( ) Raef is loving his baby food applesauce is his favorite. He smiles and laughs all the time now. I just love seeing him learn new things everyday. I am just ready to get this surgery over with and on with it!!

Nashville here we come......

Well we got an official date for the cath and surgery, November 16th for cath then the 17th for the glenn operation. I am getting so nervous, but in some weird way I am excited. I am just ready to go and let Raef get on with life. I am tired of setbacks. I am feeling pretty good about his recovery process, he hasn't had any heart issues since the shunt, only stomach issues. I won't count my chickens before they hatch though. He is doing so well lately he smiles all the time and has laughed out loud a few times, it just melts my heart! He is eating cereal a lot better now tonight was the first night he actually saw the spoon and opened his mouth for it. Sunday is the heart walk I can't wait! Laurie (Scott's Sister) is coming in from Florida tomorrow for the walk and to see Raef before surgery. And Olivia too. Its amazing we see Laurie about every 6 months at the least and when she is here everyone else is scum on the floor according to Olivia. She loves her aunt Laurie. I do too, couldn't ask for a better sister-in-law, now if only we could talk her in to moving back home! Olivia is still loving school, and is so excited for Halloween. She is going to be a Clemson cheerleader, and Raef is going to be a football :) That's all I have for now!

It's coming SOON!!!

We went to the cardiologist yesterday. While we were there they did an echo that they had planed to send to Vandy to look at and decided on a date. We originally thought the first or second week of November. Once they looked the doctor said the bottom of the shunt was starting to narrow...which is expected about this age. So it looks like surgery is going to be sometime this month. So in like three weeks we are gonna be in Nashville again!! This is just so bittersweet. On one hand I am so ready to go get this over with, but on the other I just want to keep him in my arms forever and never let him go! The surgery is inevitable so I guess let's just go get it over with and get back to 'normal' life!

Woman in the Mirror

I saw an unfamiliar face in the mirror today. She caught my eye as I rushed to start the day. I hardly recognized this woman. What had changed in her eyes? She was no longer young, naive, and seeing the world through rose colored glasses. What has caused the worry lines and thought brow? How could she look so fragile and weary, yet so determined and strong? Around some corner on the road of life.....she had been shaken to the core of her very being.

There was a time when only tears and fears were reflected in those eyes. A doctor's unexpected words, the future suddenly so uncertain....gray, shadowy images of the scary concept of her child coming into the world as "disabled". An incredible journey began that caught her by surprise and would take her places she never thought she would go. The journey had been long at times and she had shed tears of pain and tears of joy. She had hopes and dreams dashed in the blink of an eye. She had questioned WHY? She had friends fail her and not know what to say or how to help. She'd seen her child suffer. She'd cried silent tears into her pillow at night. Tears of exhaustion and fear. Tears of helplessness and longing. Tears of thankfulness and relief. Tears that are choked back during the day, but are unleashed like flood waters into the safety of the night to wash away any walls being built up to protect her heart. Nights of worry into endless days of responsibility. Then slowly but surely her broken heart begins to heal.

The same pity she had once felt as she watched a mother hold her "special child" close was now looking back at her in the eyes of strangers. But a smile tugs at her lips as she realizes she now knew the secret. The hard fought, carefully guarded secret, that was slowly reviled in the depths of her heart....but only after the tears and anguish of the first few days and weeks of this new life. The illusive truth that mothers of special children discover as they take their first faltering steps down this new path....it was ok. She and her child could survive... even thrive. It was not a grueling and unforgiving road as she had imagined. The fog, confusion, despair, and fear were being slowly replaced by peace, acceptance, continent, joy, and gratitude. A mother's unique unconditional love changes the equation that may look hopeless and tough from those outside. looking in. She will fight for, live for, and die for her child. These special children transform those around them into different people. Stronger people dare I say it.. deeper people. Long gone are the days where they had to worry about where to vacation and what color mini-van to buy. They now struggle with life and death medical issues. They must answers their child's question about life's unfairness and pain. What remaining strength and energy they have is spent making their "family life" as normal and happy as possible.

A twinkle returns to the woman in the mirrors eyes and she takes a deep breath and remembers what she has been fighting for. How worthwhile this journey has been. This child is an incredible gift and what a privilege it is to be given this task of raising him. Her child is beautiful and perfect in her eyes. She longs for her child to be seen by the world with this filter of love, acceptance, and potential. Could others take the time to see past this little boys slower steps to see the life and love reflected in his eyes? Would her child be able to see himself through the filter of contentment that the woman has journeyed so long to discover?


Hope was rekindled as the woman's eyes grew brighter. The future remained uncertain, but the incredible protective love she felt for her child threw a warm blanket over the cold dark storm clouds that used to threaten her very soul. As she threw open the doors of her heart, she felt the warm sun on her face and she beheld a beautiful rainbow of intense beauty and unmistakable peace. Hope still comforts this woman in the middle of the night. Love gets her through each day. Faith takes her hand and leads her around each corner and through each deep dark valley. Peace soothes her heart as she relinquishes control of their own destiny to One wiser and all knowing. joy brings laughter and control to those once tired eyes once again. Each day is recognized for the gift it is.

I gave that woman a smile as I left her at the mirror today. I'll see her again soon and I am curious to see how she will change and grow. She's not the same young, carefree woman she used to be, but that's ok. I like who she is becoming and I feel comfortable in her life. The sun is shining, the day is brand new, my child is humming and God is so good!


I found this on someone else's blog and felt like this sums up everything I don't have words for.

Time is moving on!

I know I said I would try harder to update, but I guess I haven't tried hard enough!! A lot has happened over the past couple weeks. All good for the most part! Olivia had a special visitor at our house two weeks ago....the TOOTH FAIRY!! She was so excited, she even let me pull the tooth without a flinch. Apparently the Tooth Fairy is very wealthy she gives 10 dollars for the first the tooth now a days (according to Scott anyway). She is loving kindergarten! I am so blessed to have such an outgoing child that can make new friends anywhere she goes. She started riding the bus home on Monday, she really thinks she is hot stuff! She is only on the thing for maybe 2 minutes :). She thinks it is so cool.....for now anyway!

Raef is doing really well. We went today for his 4 month vaccinations, which is not fun at all. He doesn't do that bad, he actually hates the car seat more than the shots. He had a horrible week last week, he cried all the time was spitting everything up and was very gassy. We took him to a gastrologist on Monday and she raised his dose of Nexium and said keep using Mylicon drops (which I think they should be worth more than gold). It has seemed to help. He is smiling a lot more and yesterday found his arm! Although he is still pretty irritable, I can see the light and the end of the tunnel. We go next week to the cardiologist to have an echo, Dr. Madhok is going to send that one over to Vandy and get there take on it. It is looking like surgery will be the first week of November...NERVOUS!!!

On October 31 the American Heart Association is having a walk at ETSU mini dome. They got in contact with us through our cardiologist and asked if we would be the "spokes family" for children this year! I was so excited!! So many times everyone focuses on adults with heart disease, not children. It will be a great opportunity to spread some awareness.

We are going to have our family pictures on the 25th, I can't wait! I will at some point figure out how to put more pictures on here so I can let everyone see them!

Special Day

I have two exciting things happening today! First, I entered a contest for a free session with Erica Mowell Photography.....and won!!! I am so excited to have family portraits made. She posted on Facebook that she was doing a contest for a free session, just write an e-mail and tell why you think you deserve the session. So I wrote, but I don't really feel like we deserve anything. God put us where we are in our lives because he knew we could handle it, we might not think so at times but he knows so. Since Raef was born he is not very cooperative with the picture taking thing, he is not the happiest baby I have ever been around, but Olivia wasn't either so I know there is an end to it. Several months ago I wasn't sure we would ever have a family picture that included Raef, and I just can't wait to see the pictures of my complete little family!!! Go check out Erica's work she is amazing....ericamowellphotography.com!

Secondly, today is our two year anniversary! Its is so hard to believe it has been two years. I never thought we would be where we are now that's for sure!! With that said, I also could not begin to fathom going through this with any one other than Scott. He is the most awesome man I have ever met, he keeps me sane the majority of the time. He knows that I get a little high strung when I am stressed and is very aware that he is always the one I take it out on. He takes it, maybe not always with a smile on his face, but he never says much back, he just lets me get it out. :) I hate that he is the one that it gets let out on...he is just as stressed as I am. So going into out third year of marriage I am gonna try to change that !; ) (Scotty when you read this, don't always hold me to it!) From the moment Scott came to the video store and I suggested a JaRule movie for him, haha , I knew there was something special about him. We took a bittersweet 2 year detour along the way so that Miss Olivia could make her grand entrance to the world, but I wouldn't change it. That has made us the stronger couple and family that we are today. I would not change one thing about our family, we are so blessed and happy! Bring on 100 more years, I can't wait! I love you Scotty thank you so much for being the man that you are to me and our children!!

Poem from a Friend

I wanted to share this poem that my friend Suha has posted on her blog. I met Suha when I was pregnant with Raef, she was pregnant with her sweet little girl Nadia Miriam. Our social worker from Vandy was giving Scott and I a tour of the hospital and Suha and her husband Tommy were also taking the tour. We didn't talk much through the tour we cried a lot and had no idea we were both going through the exact same thing. Towards the end Suha asked me what was wrong with our baby so instead of saying the medical term for it I just went ahead and gave the explanation because everyone asks what is that? So as I was starting to explain she said Hypoplastic Right Heart?? I was like YES and she told me that her daughter has the exact same thing! I know I shouldn't be excited because of this, but it felt so good to have someone understand you completely. I asked for her phone number and email, I chickened out on calling I just didn't know what to say!! I knew that her baby was also due in May so once we were in the hospital I asked our Social worker if they were there and how they were doing. She told me that she couldn't tell me anything because of hippa, but that she would talk to them and see if it was ok to get us back in touch. Of course it was, and we visited each other a few times in the hospital. We now talk every couple days on the phone or through emails and I have been so blessed to have her to compare notes with! God works in such great ways!! She has become one of my very best friends even though she lives 5 hours away!! Her little girl is doing amazing! It is so awesome how these tiny babies are so tough!! So here is the poem she has on her site I warn you, you will cry!!

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

I will find the time!!

Well it has been forever since I have posted anything. I am awful at this stuff...ask my friends, I don't even text back half the time. All things are going well right now, we are still off the tube we thought we were gonna have to put it back in, but so far so good. Raef lost about 5ozs when we first took it out but he has gained all of that back now and doing really good with his feeds. I know it is still a possibility it would have to go back in but as long as he is gaining it is out! We went to the cardiologist on Thursday and his heart looks really good the pressure in his lungs is starting to drop so that is good news! Dr. Madhok says surgery will be in November. It's kind of weird I wish we could just go now and do it, but I really never want to go back there again!! I guess we will just wait three more months and let him grow and be a happy baby! He is starting to smile all the time now and loves to be tickled, he makes some cooing noises, but he is really hoarse sounding when he does. When we go back to the doctor I am gonna ask about it, he has had so many things put down his throat it worries me!

So last week was a week I have dreaded for many years! My Olivia started kindergarten!!! It is so hard to believe that she is 5 1/2, She is so smart and so excited about school! She has made a new friend already, Julie. I apparently embarrassed her, I put a note in her lunch box that said 'I love you' and when she got home she asked me not to do it again!!:( I hate that she is so big she thinks she doesn't need me anymore, I wish I could go back to when she was Raef's age. I would have done things so differently, I took advantage of having a healthy baby and didn't soak it all up with her. But she is a fantastic little girl and is such a help to me she keeps me sane a lot of the time, I am so blessed to have her! The way she came to me was such a whirlwind and and I was very young, but in so many ways that princess has saved me. Made me realize how important life is jobs, money,and houses do not mean anything without your family! She is one of the luckiest girls I know. I have been so blessed to find a husband that loves her and takes care of her as his own.
For now that's all I have...hopefully more good news soon!

NO TUBE!!!

So as I told everyone before Raef is having some feeding issues. When we left the hospital he was on a feeding tube, and has been until this past Friday. He is on such a strict schedule with his eating during the day and has a continuous night feed that he never had the opportunity to be hungry, so putting the bottle in his mouth was nothing short of annoying to him. He can suck and swallow.... so why wasn't he taking more from the bottle??? I would give him the bottle before I start a bolus feed and he would only take 5 or 10ml when he is supposed to have 6oml every 4 hours. He loves his passy, but when the bottle would go in his mouth the milk would come out and just wasn't the same. So on Friday I took his tube out and let him get a little hungry he did okay the first couple days but not where he should be at all. I was so nervous he was gonna loose all kinds of weight and thought I am just gonna put it back in since he isn't getting it. So I called my cousin Krystyna who works in speech pathology and she told me it took him 2 months to not eat from a bottle, so he isn't gonna learn to eat in 2 days. So I have stuck with it feeding him from a bottle every 2 hours and now.... he is eating 25 to 30ml. Which equals out to about 60 every 4!! He still has quite a bit of work to go with this, but he most definitely knows what hungry is and knows that the bottle is what makes that feeling go away.I am so happy, so hopefully it will continue to go this way. Keep him in your prayers because if this doesn't work the cardiologist recommended we surgically put a tube in his belly...and I don't want that at all!!!

So here is the rundown!

Well this may be a very long post but I have about 7 months of catching up to fill everyone in. In September of 2009 we found out we were going to be blessed with a baby. Pregnancy was going very well, a little morning sickness but nothing unusual. In December I was talking with my friend Erin who does ultrasounds, she said come by work one day and we will see if we can tell what the baby is. So I did it was December 3rd (Olivia's birthday) and I was 15 weeks, we did the ultrasound Erin could see the sex but we were gonna wait until Christmas to look! Yeah right that didn't happen the next night we looked, it's a boy!! We were so excited, I was extra nervous I had never been around baby boys. Then on December 6th my OB called and said that Erin had called him and thought she had seen some fluid around his heart and was a little concerned, that we should go see the high risk OB (which is where Erin worked). I was scared to death, but the doctor said sometimes this happens I wouldn't worry to much. So we were able to go the next day to have a more in depth ultrasound. Erin did her thing then she had Dr. Loderio come in and look. He then explained that for some reason the Right Ventricle was not developing normally. I was only 15 weeks so his heart was very tiny and he couldn't tell what was causing the problem. I have never been more devastated in my life, I felt so helpless that 1. I didn't know what was wrong with my child, and 2. that I couldn't fix it. We were told nothing could really be determined until I was 26 weeks. So we waited 11 agonizing weeks to see the pediatric cardiologist, Dr. Madhok. We went and had a fetal echo. After he looked and talked it over with the other doctor, Dr, Mehta he came and told us the news. Our sweet baby boy has Hypoplastic Right Heart Syndrome. Of course Scott and were so confused we had researched what little we knew on the Internet (bad idea) and knew that the outcome isn't always the best with this. Hypoplastic right heart syndrome (HRHS) is the underdevelopment of the right sided structures of the heart. These defects cause inadequate blood flow to the lungs. The major problem is pulmonary valve atresia (absence). This valve normally opens and closes to let blood flow to the pulmonary artery. Secondary problems are a very small (hypoplastic) right ventricle (lower chamber which normally pumps blood to the lungs); a small tricuspid valve (this valve allows blood to flow into the right ventricle) and a small (hypoplastic) pulmonary artery. Also, the blood flow into the coronary arteries may be abnormal causing damage to the heart muscle. So of course we want to know what we can do??? What is going to happen to our baby??? How do we fix this?? So Dr. Madhok tells us the only way for him to live is Open Heart Surgery, three to be exact. We would have to deliver at Vanderbilt University Medical Center and have the surgeries there. Surgery number one is called a B.T. Shunt. Babies are born with two connections that help blood flow. These are a foramen ovale (hole between the atria) and patent ductus arteriosus (or PDA, a blood vessel between the aorta and pulmonary artery). As these connections begin to close, the infant becomes critically ill. Because the blue blood cannot pass through the right side of the heart to get to the lungs, it crosses into the left atrium and mixes with red blood returning from the lungs. This mixed blood is pumped out of the aorta. The only way in which blood gets to the lungs is through the PDA. The PDA must be maintained open with medicine. Surgery is usually performed shortly after starting the medication to create an artificial connection (shunt) between the aorta and the pulmonary artery to deliver blood to the lungs. The second surgery is called a bidirectional Glenn (BDG) shunt. It is similar to - and is called a type of "Partial Fontan" operation. The bidirectional shunt is performed by connecting the superior vena cava (SVC) to the right branch of the pulmonary artery using fine sutures, and dividing or tying up the pulmonary artery. Now, venous blood from the head and upper limbs will pass directly to the lungs, bypassing the right ventricle. The venous blood from the lower half of the body however will continue to enter the heart. The last surgery is called the Fontan, it redirects the blood from the inferior vena cava (IVC) to the lungs. At this point, the oxygen-poor blood from upper and lower body flows through the lungs without being pumped (driven only by the pressure that builds up in the veins). This corrects the hypoxia, and leaves the single ventricle responsible only for supplying blood to the body.
I know, a lot to take in right? Well it was for us to, but we were slowly educated. So the pregnancy went on as normal, however there were several different scares with the baby they told us many times he wasn't even gonna make it. I am not going to go in to all of that, because he is here now and none of the awful things the doctors told us matter now!
In the meantime we had to name this sweet baby, and it was proving to be almost impossible. Until our good friend David was looking through the baby naming book with us and said "I like the name Raef, that's gonna be his name." Scott and I were not real sure on the name but both kind of liked it. Well it ended up being the only one we both could agree on. I told Scott I am gonna look again and see what it means, if it's nothing crazy that's his name. So I got on the computer , and started crying when I read the meaning. In Hebrew it means 'God Healed'. So I knew that had to be his name. God had really became a much bigger part of our lives through all this and I am so happy He has we could not have made it through the past 7 months without our Faith! So I felt as if God was telling me this was all going to be ok!
Thursday May 13, 2010 Raef Garret Hammerbacher arrives!! It was such a bittersweet day, we had been told so many times he would not make it to this day and yet we were there!! But still so unsure of what was gonna happen when he got here. He was born at 4:21p.m. he weighed 9lbs 1oz. 19.5in long! He was a big boy, thankfully! The NICU team was right there when he was born, they started him on the medication immediately and we were able to hold him for a few minutes, then they took him to the Monroe Carell Children's Hospital. Scott was able to follow him there but couldn't stay long. It was about 7 hours later we were allowed to go see him. He was doing pretty well, but it was horrible seeing him like that. He stayed there stabilized until Monday the 17th and he was taken for a heart cath everything went well with that but when they extibated him his throat swelled, so he had to be reintabated. On May 2oth the surgeon, Dr. Bichell told us they were going to take him about 7:00 that night for his Shunt. We were so ready to get this over with, but some emergencies came up so it got pushed until the 21st at 1:00. It took about three hours, then 2 more hours before we could see him. I thought it would be awful seeing him like that, but it was worse in the NICU. I could just see now how much more comfortable he was! Recovery in the PCICU was a little slow, his breathing is very fast. But eventually we were able to move up to a regular room. Feeding was an issue there and still is. Three weeks to the day we took him home! I was so excited we had been away from Olivia all that time and missed her so much!
So we have been home 6 weeks and it is going great! As I mentioned before we are still having feeding issues. We finally got a formula he can tolerate. But......there is still the feeding tube. We are working to get that out but so far no luck. He has developed acid reflux, so we are starting a new medicine tomorrow hopefully to control that. For the first three weeks we were home he didn't gain much weight only 5 ounces, but since we started the new formula he has gained 12 ounces in 3 weeks! Every ounce counts with these little heart babies. Today he had his two month vaccinations so he isn't a happy camper!
We have been so blessed by God that our sweet boy made it this far! We will go in the fall to have the Glenn. The Fontan will be when he is around two years old. So for now we just try to get rid of the tube and gain weight! I will keep everyone updated, thank you so much for reading my book, and keeping us in your thoughts and prayers!