Sunday, August 30, 2009
Sunday, August 23, 2009
We woke up to a winter storm this morning, and it is still coming down. It is so beautiful!! It is not often that we actually get snow in Alabama. But when we do, it is usually in March. It is so amazing to look out over the golf course and see endless sheets of white...
We took Jack out in the snow...he was not so sure what to think of it. He especially did not like the cold wind blowing in his face.
I can’t believe Jack is 8 months old. Wow, how time flies bye!! He is learning something new everyday it seems. He is has officially mastered sitting up...now if he could just get himself into sitting...He is rolling all over the place. He is trying to commando crawl and get into all 4’s. He will stand up while holding on to my hands. His new favorite game is playing ball (check out the new video it is so cute). At night, instead of just sleeping on his back, he is now rolling all over his bed (sometimes this is not a good thing because it wakes him up). He is sleeping on his side, stomach, or where ever he ends up. He is talking up a storm. He has mastered his b’s, d’s, and m’s...and he loves to squeal.
I love seeing and experiencing all the new changes!!
I can not believe we are half way through February!! It has been a great month. Jack had his first cold, and he was just pitiful. He continues to grow and thrive...he is such a little ham. He is sitting (but will fall over at times), trying to master all 4’s and talking up a storm. He is officially a big boy because not only is he eating baby food, but we have moved on to puffs...He loves them and I am trying to get him to start signing more and finished. We work on “mamma and dadda” too, but he just laughs at me. It is so cute...I will put his hands together to sign more and he just smiles and opens his mouth. Well, at least he knows what is happening next. He is very much into the game of dropping things off the exersaucer while playing and trying to find and get them...oh the joys and excitement of gravity!!
I had a great birthday, just hanging out with Jack and having a great dinner with Brian later!! How quickly a child changes what defines a “great” birthday. Jack and I played all day and went to the park to swing. He just loves being outside...He just watches all the other kids. I has yet to really smile while at the park. He always has such a serious face when we go out there.
A new shop opened up in our neighborhood, so we love strolling up there for some chicken salad and/or ice cream!! Yum!! but really bad for the waist line!!
So far, February is turning out to be a great month!! My love for Jack grows everyday, and I just enjoy every minute I get to spend with him.
Monday, February 2, 2009
I had a hard weekend, emotionally. I just don’t understand death of children. God brings children into the world...why take them out so early?
I reconnected to a high school friend at the end of last week through good ole facebook, and I found out that one of her twin boys died suddenly at Christmas with a brain tumor at 15 months. This sweet, innocent, and happy little boy had not shown any symptoms before his death and the family had no idea he had a tumor growing inside his little head. Just one morning he did not wake up...
Then, over the weekend a couple (friends of some friends) lost their 12 week old baby. The baby had been taking a nap and just did not wake up...apparently the baby aspirated in his sleep...
I found myself rocking Jack to sleep on Saturday and just crying. My heart goes out to these families...how can they go on? How do they explain these deaths to their other children, who are too young to even understand and remember their sibling/twin? I found myself wondering, How did I get so lucky that God has spared my son and taken these other ones? Jack has so much going on inside of him, and yet he continues to thrive each and everyday. These other children had their whole lives in front of them, yet it was cut way to short. I am so sorry to be a downer today, but I just had to share. This has really taken a lot out of me. My heart just aches for these families...
I know life is so precious...but it really hit home this weekend. So, enjoy everyday!!! Love your children everyday and be thankful for them everyday...because we just don’t know what tomorrow brings us...
Jack did great at the hospital today!! He was such a trooper. We woke him up at 5:20 am and made our way to UAB hospital. It took a little while to get admitted into our room for the day, but it was well worth the wait. When we finally got to our room it was well worth the wait...it was a deluxe suite...wonder how much that is going to cost us? It was amazing. It had basically two rooms...one was a bed room and the other a living room area with a huge sofa that folded out into a bed a table, and some chairs. There were two TVs, one for each room. I have never seen any hospital room like it.
Doctor McMahon came in to meet us and talk about the heart cath procedure. He went through the whole procedure from start to finish. He went over the risk factors again, and said that he rarely has them happen. He said the length of procedure would depend on how easy it is to navigate through Jack’ heart.
The whole family (Brian, my sister, Ashley, my dad and his wife, Nena, and myself) walked Jack to the double doors of the OR and handed him over to the nurse. It was so hard. Everyone was crying except Jack. He was so brave...much braver than me.
The doctor called us exactly 1 hour and 50 minutes from the time we handed him over to tell us he was in recovery, which was very quick because he told us to count on at least 2.5 hours. He said that Jack did great. There were no signs of any heart distress or heart blocks...praise the Lord!!! The doctor had said that a normal pulmonary artery pressure reading should be between 12-20 with 20 being a high normal and questionable. Jack’s pressure reading was 12-13. YEA!!!! The doctor was so impressed by all of Jack’s pressure readings. This means that his little imperfect heart is basically functioning as close to perfect as you can get. So, Jack does not need surgery right now...and we are going to just keep watching him as he grows and develops to see if he will have to have surgery around 2 years of age. We will have regular cardiology appointments with Dr. Pearce about every 2-3 months unless some signs start to show up. Every doctor and nurse that saw Jack the whole time we were at UAB kept commenting on how “big and pink” he is. I guess working on the cardiac floor, you don’t get many babies that look like Jack.
The 6 hour recovery was long, but Jack was great. He just played and talked to everyone. He was the champion of the day!!!
Thank you to everyone for all your thoughts and prayers!!! Brian and I felt lifted up the whole day. Please continue to pray that Jack will just keep growing and developing like he is and his heart will remain balanced!!
Here is a pic of Jack in his little gown...he is so cute even before the procedure..
We had a great weekend...I love long weekends, and especially having Brian home an extra day to play. Jack went to his first birthday party for Anna, who turned 3. He had a blast watching and laughing at all the kiddos running around. Anna was too cute!! Her favorite gift was a red cowgirl hat.
One Monday, Brian, Jack and I went around to every Hobby Lobby in Birmingham trying to find some more frames. Brian and I spent the weekend finally hanging pictures on our walls. For those of you that know us well, know that we have not had pictures hung on walls since we first got married and where living in an apartment 4.5 years ago...We have just not stayed in a place long enough for me to bother. Our home here finally feels long term to me and I love looking around and seeing Jack everywhere. I know feel sorry for our second child!!
Friday, January 16, 2009
After talking with every cardiologist we know...from Boston to UAB to Emory...Brian and I have decided to go ahead and do the hearth cath. It is scheduled for 6:00 am on Friday, January 23. I am glad to have the decision made, but I am very nervous about Jack having the procedure done. The risk factors terrify me...
The nurse called the other day to tell me about what to expect...I did a lot of “Ok”, “Uh, huh” and “that sounds good”. I was just trying to fight back all the tears while I was talking with her. When I got off the phone, I started crying. Of course I was in the car, and I turned right around and drove home..crying the whole way. I got home grabbed up Jack and held him and told him just how sorry I am. I am sorry for the pain he is not going to understand. I am sorry for the possible limitation all of this is going to cause him. I am sorry for how common all the doctors are going to be.
I am so scared for Jack. I think the worse part is knowing that this procedure is so minor compared to the ones he is going to have to face later. I am so nervous about the outcomes too. What if the pressure reading is not what they think it will be and he has to have surgery next month? I am not ready for the “clock” to start against his heart. I am not ready to know that he will need to have a heart transplant to live into adulthood. I look at him and he is so perfect and healthy...most days I forget about the mess on the inside. I am so blessed for the good health he does have now. I read about other children with similar issues and I know just how blessed we are, but it does not make it any easier.
So, start praying!!! Pray for Jack’s safety during and after the procedure. Pray for the surgeon’s hands...that he will not hit any conductive part of his heart to cause a pacemaker to be required. Pray that we do not have to stay overnight in the hospital. Pray that Jack is able to stay still for 6 hours after the procedure. Pray that Brian and I make it through without falling apart. Just PRAY!!!
Last year was a very exciting year for Brian and me...the birth of Jack was brought more joy to our lives then we could have imagined. As I look forward to 2009 I am filled with both excitement and hesitation. I am excited about all the things Jack is going to grow and do...crawling for the first time, walking, and turning one. I am scared, though, that he will have to have some kind of surgery and I am just not ready for that!!! I know I can not focus on the “what’s to come,” and I plan of living 2009 day by day!!!
Brian, Jack and I went over to our friends at Kizzire’s house to ring in the new year...well, Jack decided he did not want to miss out on the fun and woke up at 11:50...He saw the ball drop for the first time and got kisses from both Brian and me.
Over Christmas a family friend of Brian’s stepfather came into town and requested Brian give him a call when we get back into town from Chile. His friend is a cardiologist at Emory who trained Dr. Pierce (our cardiologist at UAB) and still has a pediatric clinic but focuses on adults now. His name is Dr. McConnell. Brian talked to him on tuesday. He wants to see Jack, but based on what he has heard about how well he is doing he said he would not have any procedures done...not even a heart cath. His focus in heart defects is to do as little intervention as possible. He thinks that as long as Jack’s oxygen level is stable then there is no reason to have anything done.
The heart cath is scheduled for Jan. 23, but we really want to go over and see this doctor...so I might have to reschedule it for later or cancel altogether. We are interested in what this doctor has to say. He, so far, is the only doctor that looks at how procedures effect the lifespan of an individual.
I do like getting more opinions, but it is so hard to know who to trust and who to listen to. I went from not doing the cath, to doing the cath, to now not knowing what to do.
Pray that Brian and I can make the right decision for Jack.
Brian and I went to Chile with my family for Christmas and Jack stayed with my dad and Nena. Before we left, we took Jack to see Santa on the 19th at the Mall of Georgia. He did great. He just sat there and stared at everyone trying to make him smile. Jack was great for Dad and Nena. He slept through the night and loved playing with all the other grandkids!!! He was there from Dec. 19 until early on the 29th. Brian and I missed him so much!!!
Before we left I bought him a Christmas outfit...
And we made time to get Jack's picture with Santa before we left for Chile.
Yesterday was the first time we have been to church since Jack was born. It was so great to be able to go and “feel” like a normal family. We have not gone before now because the doctors told us to stay clear of the nursery and I didn’t like the idea of just Brian or me going. One of my great friends was singing a solo and I just could not miss it!! Since Jack can not go to child care, I sat in the back and held him. Jack did great. He listened, ate, and slept. He did better then I thought he was going to do. He is already teaching me not to doubt him. I got more emotional about being at church then I thought I would... In some way it reminded me how Jack is not like other babies. It is funny, but I wish I could put him in the nursery, get a pager and enjoy church... It is just one more thing to remind me that my son is not 100% healthy and it makes me sad and scared for the unknown...
My friend was amazing. She sang a Faith Hill song, A baby changes everything. It touch my soul...and I know it touched everyone in the sanctuary. God has truly blessed her with a gift...and she shared it with all in attendance yesterday.
Monday, December 8, 2008
Have I mentioned how bad I am at making decisions? I mean meaning little decisions like, what to eat, where to eat, what to wear...stuff like that. So, with that said, making a major decision about my son is becoming impossible!! Just when I thought I had everything with Jack under control and I was confident in my decision not to have the heart cath...I get this...
(this is the response from Dr. Breitbart to Brian about our questions/concerns with having the heart cath procedure)
...I am very glad to know that Jack is doing well. Let me clarify one point before I respond to your question about the risk:benefit ratio of catheterization. Hearts with so-called L-looped ventricles—ventricular inversion, i.e. left ventricle on the right side and right ventricle (or remnant thereof) on the left side—are at risk for developing permanent heart block spontaneously, as well as during catheterization or, indeed, surgery. This is because the heart’s conduction system (biological “wiring”) connecting the atria to the ventricles is abnormally formed and tenuous in these hearts, such that it fails in some cases (approximately 20% of such hearts). It is true that the conduction system may be temporarily or permanently disabled by minor if unavoidable catheter impact, but this is likely because of its intrinsic vulnerability in ventricular inversion rather than because of the particular catheter course.
Regarding your good question about the reasons to incur even the small risks of catheterization, the answer is that they are far outweighed by the risks of NOT doing so in children such as Jack with single-ventricle hearts. The ultimate success of the Glenn and/or Fontan surgery hinges on several key elements of cardiovascular physiology—particularly pulmonary vascular resistance and ventricular diastolic function (let me know if you want me to explain these)—which cannot be measured either by physical examination, echocardiography, or other non-invasive testing. Although these are probably OK in Jack, we cannot be certain of this without catheterization. If they are not OK, it is essential to know that sooner rather than later, because our ability to reverse such problems declines the longer they are left untreated. We would certainly prefer to have a completely risk-free method to determine this but, again, we believe the risk of not detecting and managing such problems is greater than the procedural risks of catheterization, including heart block...
WOW...so my child can just drop at any point with heart block...I love that I am just now finding out this information. After I read his email, I cried and then I got so frustrated. Just when I think I understand all there is to know about Jack’s heart, someone throws a curve ball at me and knocks me down. I don’t see how other families do it. I have a back ground in Human Anatomy and a huge understanding of how the body works, especially the heart...and I get so confused and mad at myself for not thinking of these things. I don’t like surprises...especially ones about Jack’s heart!! Brian and I just don’t know what to do. We have formulated so many questions to ask back to Dr. Breitbart and to Dr. Pearce. Not only do we have to re-decided whether to have the heart cath, now we have to decided to have it here at UAB or go ahead up to Boston in the off chance something happens.
Just when I think that nothing else can happen and I am finally moving forward, something like this happens. The worse part is I feel like it is only going to get harder as he gets older...
I can not believe it has been 5 months since Jack was born. So, much has happened...and I have to say that this month is my favorite to date!!! He is so much fun. He is trying to roll...all 18 pounds 9 ounces of him. He will roll from back to tummy...and has rolled from tummy to back once. He much prefers to sit with support or in the exersaucer to play. We have started some baby food. I am not as loyal about spoon feeding...I just hate messes so eating is not my favorite thing. Jack is not crazy about it, but what kiddo is at first? I think he is going to keep his blue eyes, which I am so excited about. And I think he is starting to look more like me...well, at least that is what some people say.
Health wise Jack is doing wonderful. He is still just as “stable” as he always has been. I don’t know what I am going to do when his little heart decides to start having problems. I am so use to every check up being so positive. We have not heard back from Dr. Brietbart, but as of right now we are not doing the heart cath in January. I am not willing to take the risk at this point.
For thanksgiving we drove down to Mobile to visit Brian’s dad and stepmom. We left after bath and nighttime bottle on tuesday and came back early morning on Thursday. Jack did great traveling...he slept almost the whole time each way. I was very proud of him. I have to admit I was not happy about making the drive with him, but he proved me wrong...yet again and did great. Way to go, son!!!
We are getting ready for our trip to Chile. Brian and I are so excited, but it is going to be very hard to leave Jack. He is off to stay with my dad and Nena. The worse part is we are going to miss out on Jack’s first Christmas. We leave on the 19th and don’t return until late on the 28th. Brian and I have decided that we are going to redo Christmas when we get back. The best part about Jack staying with Dad and Nena is he will be around tons of kids!! I am so thankful for Nena’s big family!!!
I was given a gift card to get Jack’s hand and foot print made in clay from Do it Yourself Crafts. Brian and I took Jack to get these done. It was so much fun!! Julia did a great job. Of course we ended up getting a lot more than just his prints made. We made some Christmas ornaments, too.
Thank you, Julia!!!
Friday, November 7, 2008
We had a check up at UAB cardiology. Jack weighted in at almost 18 pounds and his oxygen was holding strong at 92%. Dr. Pearce could not get over how great Jack looked and how “balanced” his little body continues to be. He reviewed with us the dictation from Dr. Breitbart in Boston and we discussed the heart catheterization procedure. Dr. Pearce believes we can wait until January to have the procedure done. He also informed Brian and I of the risk factors associated with doing the heart catheterization. There is a 5% chance that Jack could suffer temporary and/or permanent heart block due to the fact that his vessels are bent the wrong way and are in funny places. If heart block occurred and it did not correct itself then Jack would have to get a pacemaker. I was shocked at this. Now, I know that with any procedure there are risks, but I guess I had no idea that my 4.5 month old child, who is doing so great despite a messed up heart, could have to live with a pacemaker because of a simple procedure. Now, I don’t know if I want the procedure done at all. I have really been thinking and praying about it and I just don’t think I want to risk the odds of something happening. The reason for the heart catheterization is to measure the exact pressure of the pulmonary artery to say 100% that Jack can skip stage 2, the Glen procedure, of the heart surgeries. The grey area comes in because even without of the heart catheterization, Jack would be skipping the surgery because he is showing no signs of needing any intervention at this time. Rather we do the procedure or not...Jack will not have the stage 2 surgery done unless he begins to show signs of congestive heart failure. The stage 2 surgery is usually done around 6 months of age to enable a child’s heart to remain healthy until the finally surgery (Fontan procedure) can be done between 18-24 months. As long as Jack keeps progressing like he currently is...the stage 2 will be skipped. If at some point, before he is 18 months old, he begins to show signs of heart problems then the Glen procedure will be done to give him some more time before the final surgery is done. Given all of this I don’t see how doing something now that could cause Jack to have a pacemaker is going to change our plan of care. Brian is going to send Dr. Breitbart an email and ask if we have to have the procedure done. I want to know if there is a piece of the puzzle that I have missed. I just want to do the right think for Jack, and I do not know what that is right now. But I am leaning toward not having the procedure done.
Friday, August 21, 2009
I was given a gift card to get Jack’s hand and foot print made in clay from Do it Yourself Crafts. Brian and I took Jack to get these done. It was so much fun!! Julia did a great job. Of course we ended up getting a lot more than just his prints made. We made some Christmas ornaments, too.
Thank you, Julia!!!
Here is Jack getting ready...
Thursday, August 20, 2009
I was all excited for Halloween this year...It was going to be Jack’s first Halloween so it was very special. But instead of getting all dressed up to go trick or treating...Jack stayed in and threw up. YEA!! Our first stomach virus. Brian and I dressed him up anyway, but he was not feeling it too much.
So, thanks to Pam, Jack was a pumpkin this year. He seemed to like his outfit...but he kept eating the leaves.
then the body...
then the hat and leaves...
then comes eating the leaves...
Sunday, August 16, 2009
It is hard to believe that Jack is four months old. He is growing bigger everyday. He is talking up a storm and seems to find new sounds each and everyday. He is getting better at pushing up on his elbows while on his stomach, but (much to my disapproval) he is still not interested in rolling. Being a physical therapist that works with children, I am learning first hand want parents have told me all these years... “My child just doesn’t work for me...” Well, now I see it because Jack will not work for me at all. He just eats his hands for makes funny noises every time we have tummy time. He is loving sitting up in his chair, and likes to play with his toys while he is sitting.
I found these pants and thought they were perfect for Jack in so many ways...
Today is an emotional day for me. My mom would have been 61 today. It has been almost 5 years since my mom lost her long battle to breast and bone cancer. I spent the day telling Jack all about her and showing him pictures of her. It is hard to believe that he will never get to meet and know her. He will never get to share with her some of the amazing memories I have with her. She would have loved him so much!! She always wanted grandchildren...and I hate that she did not get a chance to experience being a grandmother. Jack has her joy for life!! I am lucky to be able to see that trait of her in him.
Through the last four months, I have had to learn to be a strong person despite what life throws your way. I like to think that I get my strength from my mom. She was the bravest and strongest person I know. Even through all the years that she battled cancer, she never let it rule or control her life. She lived life despite cancer. She lived life for me and my sister. One day Jack will get to really know who his grandmother was, but for now I just show him pictures. Being a mom is the most wonderful gift that anyone could receive. My mom always told me about the love a mother has for her children, and I finally understand what she was talking about.
Happy Birthday, Mom!!
Saturday, August 15, 2009
The visit to Boston went well. Jack did great on the airplane. He has decide that private jets are the only way to travel and he never wants to ride coach!! Uncle Ed even put one of the seats down so we could use it as our changing table.
Meeting Dr. Breitbart was awesome. He was as nice and thoughtful in person as he has been via email and phone. The day of our appointment started out rough. We had orders that Jack had to stop eating by 8:30 am (formula), 10:30 am (breast milk) and could not sleep past noon for our 2 pm appointment. You have all seen my son...he loves to eat!!! So, this was no walk in the park. He screamed a lot!!! This child has never been deprived of food a day in his life, so he was very confused as to why I was just watching and holding him instead of feeding him. I cried off and on the whole morning...it was very hard listening and watching your child cry, knowing how to fix it, but not being allowed to do anything about it. We found the hospital easily, thanks to Aunt Suzan, who had worked at the hospital many years ago. It was clinic day for the cardiology department, so it was a mad house inside the office. It was standing room only...with a lot of sick little kiddos. Once we got back to our room, Jack had to be weighted and measured so the nurse could know exactly how much medicine to give him to make him sleep. He weighted in at 16 pounds 5 ounces, so this meant a good amount of medicine. The nurse told us of the risk before, during and after the sedation. We had to sign a bunch of papers...and the process started. I had to have Brian hold his hands while the nurse administered the chloral hydrate into his mouth. I, of course, was crying and Aunt Suzan was hugging me during the whole procedure. The sweet nurse told us that it could take up to 20 minutes to take effect. Not for my son...the child who was food and sleep deprived fell off to la, la land in under 2 minutes!!! I just held him as he fell asleep in his little hospital gown. I then had to lay him down on the hospital bed so they could begin the sedated echocardiogram. Brian, Aunt Suzan, and I got to be in the room the whole time the echocardiogram was being performed. The tech worked for 1.5 hours getting picture after picture, measuring arteries and veins, and watching each chamber pump. It really is quite amazing how modern technology works!!! During the procedure, Jack oxygen level dropped to 79%...the nurse quietly turned on the supplemental oxygen and laid it in front of his nose and it immediately went up. Later she told us that this is completely normal because the tech has to push down on the stomach so hard to get different angles for the pictures that it affect the way babies breathe and their oxygen levels. So, after the long procedure...Dr. Breitbart came into the room to go over the findings.
First he started by saying that Jack is perfectly “balanced” right now. He is very pleased at where he is right now and could say that he has never seen a kiddo with his condition doing this well. He confirmed that Jack has double inlet single ventricle with pulmonary stenosis along with L-TGA (self corrected transposition of the great arteries). This means that his right ventricle on the left side is not large enough to be considered a working ventricle, so his heart is working as one (or single) ventricle. This diagnosis rules out any possibility of a double switch procedure. So, the surgery that will be performed on Jack will be the modified Fontan procedure. The next step, Dr. Breitbart wants to take is to have a cardiac catheterization done next month to measure the pressure in his pulmonary artery. From the echocardiogram, the pulmonary artery seems to be in perfect balance with the stenosis. Dr. Breitbart said any more narrowed or wider and he would not be “balanced”. He wants to measure the pressure of the artery because this will determine if Jack has to have the Glenn procedure (stage 2 out of 3). If the pressure reads too high or too low then Jack will have the Glenn procedure around 6 months of age. The Glenn procedure is done to give a child’s body more time to grow and develop while they wait to have the Fontan procedure. In the Glenn procedure, they will connect the superior vena cava to the pulmonary artery. By doing this, pressure is taken off of the single ventricle to pump enough oxygen poor blood to the lungs. As I have mentioned before, the problem with Jack’s condition is the fact that the single ventricle gives out over time. Well, the doctors do not want any damage to his single ventricle before Jack is 2 years old and can have the Fontan procedure so the Glenn procedure is done as a preventative to protect the single ventricle. So, we will know after the cardiac catheterization if he will need his first surgery, the Glenn procedure, or not. Dr. Breitbart feels like the cardiac catheterization is going to reveal that his pulmonary artery is in perfect balance, but he wants to be for sure.
One great thing we learned from the visit is that Dr. Breitbart and Dr. Meyer (the surgeon) perform the modified Fontan operation in a different way then Dr. Pearce had told us. There are two ways to perform the modified Fontan operation...the lateral atrial tunnel Fontan and the extracardiac conduit Fontan. In both methods a total cavopulmonary connection is created, but by different means. With the lateral tunnel a baffle is placed in the right atrium to partition systemic from pulmonary venous blood. Because this partition comprises less than half the circumference of the pathway from inferior vena cava to pulmonary artery, the remaining native atrial tissue can grow to accommodate increased systemic venous return over time. The growth potential makes this type of Fontan operation suitable for smaller children without the need for future enlargement of the pathway. In the extracardiac conduit type of Fontan, one end of a synthetic tube graft is connected to the inferior vena cava and the other end to the pulmonary artery confluence. This pathway has obvious size limitations since the graft cannot grow. Brian and I were told that UAB would only do the conduit type and I was unaware of any other way to perform the Fontan. So, I am very excited about the lateral atrial tunnel approach!!!
Brian and I are so thankful that we got a second opinion and that we are going to Boston!! All and all the trip was very informative and I am so glad we went and had Aunt Suzan with us. We could not have made it through the day without her love and support every minute of the long procedure!!! It was very emotionally hard on me...it was so hard seeing my little, precious boy lying lifeless on the hospital bed with his little hospital gown on. I cried a lot. I think I cried more because of what is to come for him...I wish this one test was all he had to endure, but this is just the beginning...and that is hard to take as a mother. My heart breaks at the thought of all the future tests and surgeries his little, perfect body is going to have to go through. I do gain peace of mind knowing that he will be in good hands and that he is doing so well right now. I still pray every night that Jack will glorify God and He will use him for His glory!! But I am very selfish, though, and I want a miracle so he does not have to endure the pain of any surgery, the medication that will follow, and the lifetime of doctor appointments...and the scars that will remind him everyday that his perfect body has an imperfect heart.
We are leaving for Boston this weekend. I have been really thinking about it all week. It really makes Jack’s heart problem very real. I had a scare last week...I thought he was sleeping to much so I took his O2 and it was way low. I freaked out, call Brian at work, and began to cry. Every thing is ok. The O2 monitor just was not on tight enough, but I was a mess for several hours!! I think everything just hit home. That something is going to happen to my baby. I forget about his heart when I am with him. He just looks and acts so healthy. I just want him to be “normal!!” It is hard enough figuring out the life of a baby...is he eating too much or too little...is he sleeping too much or too little...that when I add his heart into it sometimes it is just too much. I think the worse part is, I can’t just “fix” his heart. I know as he gets older, I will think about it less and less, but it will always be there. It is not something that will be “fixed” with one surgery and we get to move on.
I am looking forward to meeting Dr. Breitbart and talking to him about our surgical options. I am a little nervous about having Jack put to sleep while they run all the test. He is just so young!!! Please pray that the doctors get some really good pictures of his heart and they get a clear idea which surgical procedure will best fit Jack. Please pray that Brian and I handle everything with courage. We leave on Saturday and return late on Tuesday. I am so thankful that we do not have to get on a commercial airline and that my aunt can come to the doctor’s appointment with us. I will keep everyone posted.
Jack just loves our nanny. She is wonderful. I just love that she loves him and plays with him while I am at work. She even takes great pictures of him when he does something really cute. Here are some...
Brian, Jack and I went over to the Kizzire’s house to have a wedding shower for a friend and to watch football. I packed a bag for Jack because we were going to do bath time and put him down over there since he goes to bed so early. This way we could stay and hang out. Well, when we started his bath, I realized that I remembered the bath tub but I forgot his overnight bag with all his bath soaps, lotions, and his pjs on our sofa. So, we had to borrow everything from Karen and Jeremy’s 2.5 year old little girl, Anna. They were so kind to go up in the attic and find us a footy outfit for Jack to wear to bed. I decided I had to get a picture of him in Anna’s footy pjs. I think real men can wear pink...so we are starting Jack on that early. He does make a pretty handsome little girl!!! Thank you Anna for letting us borrow your pjs. I will be sure to tell this story at their wedding...
I started back to work today. I have been very excited about starting back. I have missed all the kiddos and families that I use to work with. I am so very lucky to have found a wonderful care taker for Jack while I am away. She is just awesome and loves him already. She was so sweet today to come early so we could talk before I left. She put up with me retelling her all the things that we had already gone over. She even sent me a picture of Jack sleeping (and snoring) while I was at work. What a great sitter, huh!!!! I am so excited to have found her and Jack really likes her, too. We talked about it last night...
The work day just flew by. It was great to hear how much I was missed and to see how much all the kiddos had grown and how much their gross motor skills have improved. I am so lucky to have the opportunity to work 2 days. I have the best teammates ever!!! They are having to sacrifice a lot to only have me 2 days and they deserve a lot of credit for being great and amazing professionals and friends!!
I have to admit that I did cry when I had to leave the house this morning, but a very special friend talked me through it and my day was amazing. So, over all the first day back, although crazy, was very good. The best part is the sitter said she had a blast and can’t wait to do it tomorrow. Today was a good day!!!
Thursday, August 13, 2009
Friday, September 19, 2008
I had the chance to meet an amazing young lady today. Not only is she a terrific nanny and possible babysitter for Jack during the days and weekends, but she was born with transposition of the great arteries. It was so wonderful to be able to talk with her. To be able to ask her questions about all of my concerns for Jack. She is an active, healthy 26 year old who has her whole life ahead of her. She had open heart surgery at 4 months of age and a pacemaker implanted 5 years ago. The surgical procedure she had is no longer preformed but the outcome of her procedure left her heart working with just one ventricle, just like what Jack is probably going to have done. It was so reassuring to see the 2o year longevity that our doctors have told Brian and I being thrown out the window. She goes to her cardiologist every 6 months to check her heart, and the doctors at UAB have told her that her heart only shows very minimal deterioration, so small that there is no concern about it. And this is even with her right ventricle, which is the smaller wall ventricle, doing all the work. How encouraging!!! She is going in October to have the battery in her pacemaker replaced, which she will continue to have to do about every 5 years or so. She told me how her life as a young child into adolescents was very active. She did say that at times she had to take breaks, but enjoyed participating in every activity she wanted to with her friends. She was even a dancer. She said she just learned how to self regulate herself. I asked her if she gets scared about the uncertain future. About the to possibly of having to have a heart transplant. She said she only really thinks about it every 6 months when she is at her cardiologist check-ups. We talked about the advancement of medical technology and how there will probably be more options for her and Jack instead of only a heart transplant down the road.
I felt like I got to look into the future by talking with this young lady. I finally got the answers to questions that only someone in the same position could answer. She gave me so much hope for Jack. But more importantly she gave me so much peace!!! I am so thankful to have her in our lives.
My great friend Amber and her son, Drake, drove over from Georgia for the afternoon. We had such an awesome time. The boys did not get as much out of it as we did. Drake is 6 days younger than Jack. Yes, Jack is huge compared to him. Drake has the prettiest blue eyes and the perfect little head. I tried to get Drake to show Jack how to push up on his arms to roll over, but Jack did not pay him any attention. Maybe one day my son will lift his head while lying on his tummy, instead of licking his arms. Jack tried to show Drake how to bat at objects hanging from the play gym, but I think Drake was too overwhelmed by Mr. Star...
We had a great time just hanging out and talking. We went to SOHO for lunch and met some of our college friends. It was a great afternoon!! Thank you Amber and Drake for coming over to see us!!!
I have been trying to get a picture of Jack poking his bottom lip out. I finally got some. I was making raspberries at him and I don’t know if he was trying to copy me or it was making him upset. But I finally got the picture I have been trying to get for a quite some time.
Wednesday, August 12, 2009
We had our check-up with Dr. Pearce, the cardiologist at UAB. They checked Jack’s oxygen levels, which was 94%. They performed another 2-D echo/Doppler study (looked at his heart) and noticed no signs of congestive heart failure. All his valve measurements were good and where they should be. As Dr. Pearce said, we are in a holding pattern. He did say that he was very pleased at how stable Jack is. As the doctors like to say, Jack has a “relatively balanced circulation” at this time. I just love their wording... Dr. Pearce seems to think if Jack continues to progress like he has been, then he should be able to wait until spring/summer before having to have surgery. He did say deterioration can happen at any point.
As Brian and I where sitting in the waiting room of the cardiologist office waiting on our results from the genetic testing, I watched all these families come and go with there little ones (and some big ones). I find myself sitting and wondering what each child has...are they going to make it...is it worse than Jack’s...is it at all like Jack’s. It is a strange feeling being on this side of things. Working as a pediatric physical therapist I see child with special needs and I want to fix them. I want to do whatever I can to make the child and their family better. But these kiddos in the waiting room, including my son, I can not fix... It is quite a hard concept for me!! Because, like Jack, these kids do not look or act “sick” but inside their small little chest lies a serious problem.
The genetic results showed that Jack does not have any chromosomal abnormalities. This was a true answer to prayer!! We are so thankful that everything else seems to be in order.
We have scheduled our trip to Boston to meet Dr. Breitbart and Dr. Mayer for October 13th. Jack will have a sedated ECG and other test. Brian and I feel so lucky because my uncle has a meeting in Boston and the three of us are going with him and my aunt on his company jet. We will not have to bother with germs from commercial airlines. This also means my aunt will be able to go to the meeting with us, which I am very excited about. It will be nice to have someone else there to hear the information and to have an option. I told my aunt that I can not believe that Jack will ride his first private jet at 3 months...I did not do this until I was 29. It has started...my child gets to do things way before I ever even dreamed of doing things.
The pediatrician's visit went great!! It was very “normal” since we had just seen the cardiologist, Jack did not need his oxygen taken or anything heart related done. He weighted in at 14 pounds 8 ounces and is 25 inches long, both of which puts him into the 95%. His head circumference is 16, which puts him into the 75%. Dr. Denton is very pleased at his growth. We where told that this is great “considering his condition.” I just love those words =(. Jack got his first shots. He was not happy about them at all. I think he turned 4 different shades of red. I debated long and hard about the shots. I talked with several friends, one who has a couple of sons with special needs. I don’t think there is a right or wrong way to do the shots. I do think they are important, but does a little baby need so many at once? It is so tough!! Thank you so much to my friends who put up with me asking them tons of questions. I must say, at least they used cute band-aids!!