Wednesday, December 29, 2010

All I want for Christmas is my two front teeth!


So sorry I have not blogged in a while. We have been enjoying the holiday's with our families and I have actually not been on the computer much at all. It was actually nice living a (somewhat) computer free life for a few days.

I don't even know where to start so I am going to start with the happy stuff!

CHRISTMAS EVE
We always go to my mom and dad's house to open presents on Christmas eve. Before we left Aidan and Daddy made cookies. We went to Grandma and Grandpa's house and spent time with our family and opened presents. I had a Santa tracker on my Ipod and Aidan was watching it all day to see when Santa would arrive. We packed up the car and headed home. Aidan and I put out the cookies and milk for Santa and a bunch of carrots for the reindeer (They need some love too!). Then it was off to bed so Santa could come.

Grandma snuggling Jakey

Grandpa and his little buddy

What was left after Santa and the reindeer got done with the cookies and carrots.

CHRISTMAS DAY
Santa was VERY good to the boys this year. Of course he way they have both been beyond amazing. Aidan took everything that happened this year so well and never complained once about his mommy having to be away with Jake or having to share the attention. I am so blessed to have such great kids.

Aidan got his train table that he has been asking for. He loved the one at the Ronald McDonald House so it was a no-brainer for Santa. He also got a giant crane and dump trucks, lets just say he was in heaven. I couldn't get him away from the table at all the whole day. Of course Santa had to get some educational things like Leap Tag System and a Map of the USA that teaches him all about every state. He loves it all.


Jake's favorite toy was a penguin he got that he hits and balls bounce around and it plays music. He also got a little racers track and a few other toys.



ALL I WANT FOR CHRISTMAS IS MY TWO FRONT TEETH!

Jake got a very special gift this year. His first tooth! He has been teething so bad lately. I was starting to really worry because he started not eating well and was very fussy. Because he was not eating a lot by bottle we had to use his tube more which irritated the skin around his g-tube. So he was miserable because of his teething and the tube. I couldn't touch the tube without him screaming. I even changed it out to a bigger g-tube to see if that would help. I started putting antibiotic ointment on his skin around the tube and by the next day that looked much better. I could tell his two front teeth on the bottom were so close to popping through. Christmas day I noticed that one of them finally emerged! A few days later the other tooth came through. They are so cute. He is still chewing and slobbering on EVERYTHING but its so great to see that he is not hurting so bad.

My greatest gift was being there with my husband and my two beautiful children. Jake is such an amazing fighter. Last Christmas I did not know if he would be here with us this year. It was pretty emotional for me sitting there watching both of my boys playing with big smiles on their faces.

JAKE UPDATE

Jake has really been growing both physically and developmentally. He sits up really well now and sits up straight instead of in a tri-pod position. He is rolling around everywhere. If he wants something he will get it. He is trying to pull up on his own. He gets about half way then falls back down but he keeps on trying. I can't keep Jake off of his belly now. He has realized that he can get around better that way so he is always rolling onto his belly to grab and reach for things.

Jake has been trying to crawl. He wants it so bad. He gets so frustrated. He reaches and then teeters from side to side until he gets what he wants. Still trying to get him to really crawl. He is moving right along (Don't mind the pun). We are very proud of him and how far he has come. Aidan did not crawl until he was 9 months old either. I have a feeling that before we know it he will be all over the house.

Jake continues to do well with eating by bottle. He also eats baby food and has begun to try out finger foods. I started by crushing up Gerber Cheese Puffs for him and Nilla Waffers. He took a minute to realize that he could eat it but once he figured it out he could not shovel it in quick enough lol. He is getting so big.

EAR, NOSE AND THROAT
Today we went to Jake's ENT appointment. It was just a follow up to discuss the scopes he will be having in March. I talked to the doctor about Jake's breathing and how it has not improved at all. Jake's ENT doctor agrees with Cincinnati about the fact that his lungs sound great. He said it sounds like it is his vocal cords. He also said it sounds more like Laryngomalacia instead of Tracheamalacia. This is all speculation at this point. We won't know exactly what we are dealing with until we go to Cincinnati in March. Jake will be meeting with ENT in Cincinnati on March 7th and getting a scope by Pulmonary and ENT on March 8th. There are two seperate scopes which will tell them exactly what is causing his noisy and ticipnic breathing.

Laryngomalacia does usually take months to years to go away. I asked what they would do for Jake if he did have paralyzed vocal cords and Laryngomalacia. The doctor explained that they would most likely do a tracheotomy. This scares me so much. Mainly because it would be so debilitating. Now I should explain that this is all speculation because we don't have the scopes yet. Plus ever doctor that has ever seen Jake worries about his breathing but then realizes its just Jake. However this doctor specializes in disorders like this. He is also a local doctor. I would not consider a tracheotomy unless both Cincinnati and CHOP evaluated Jake.

Jacob has not had any evaluations/scopes since he was 4 weeks old. He needs to have another one and we should get many more answers now that he is older. Obviously something is wrong. He is not getting any better. If this is something that everyone agrees Jake needs then we will accept it and we will learn our "New Norm" once again but I pray, pray, pray that he doesn't need it.

The biggest thing that worried me today was talking about what will happen if Jake gets a cold. The doctor explained that a cold can be deadly for Jacob. He already is breathing so fast and working so hard on a daily basis. If Jacob gets even a little cold it can turn ugly very fast. He told me that at the first sign of a cold I need to take him to the ER. I am so angry for Jake, and so scared. I have always been very careful with Jake. I don't take him in public and I have told everyone if they are sick to stay away. I always knew that if he got sick he will be hospitalized but hearing this doctor talked today made it seem so much scarier.

It just makes me so angry. This kid already has half of a heart but his breathing makes him even more at risk. Again no one knows what will happen and I will continue to be vigilant in protecting him anyway that I can. I know he will get sick one day but I want him to be as strong as possible before that happens. So many people have told me "You should not keep him in, live normally he will get sick eventually". I get so angry because its not that simple. He is not "Normal". Its not like he wants to go out in public so why push it, it is my job to protect him and I will. People don't understand that Jake will always have half of a heart. A simple cold can kill him. Just because he survived surgery does not mean he is "All better". He will never be "All better". There is no cure for HLHS. There is also not a lot out there about kids with intact septums. These surgeries have not been around long. HLHS affects 4 out of 10,000 babies. Only about 10% of them have Intact septums. Jake is a pioneer. I don't know of any older children with HLHS who also had an intact septum. Then throw in his breathing. Like CHOP always said, he is "Unique". There may not be any "Guide book" or anything to help me find answers for Jake but there is something much more important, there is HOPE! Jake is a fighter and as long as he is fighting I can find strength and courage to face anything right along with him.

I know many people think I am a germ-a-phobe and probably go over board. So be it. If you want to see Jake you and anyone you live or come in contact with frequently needs to be healthy. Please if you feel sick at all even if you think its only allergies don't come by. I know you may think its not a big deal but it is. For him it could be life and death. If you come down with something and have been in contact with Jake I need to know. I know everyone loves Jake so please help me protect him at least until we get some more answers.

I intend on keeping Jake inside through Cold and Flu season. We won't be going anywhere except his doctors appointments. He is getting monthly RSV shots and has had his flu shot. I am doing everything I possibly can. So although I am scared I will push that aside for Jake. I have said so many times that I won't live his life fearing his death. I am going to celebrate every second I get with my beautiful miracle. We will find out more in March. Until then I am going to pray for the best!

Merry Christmas everyone and a HEALTHY new year to all!
Love,
The Bakers

"Where hope grows... Miracles Blossom"



Mom its way to early for pictures

Saturday, December 18, 2010

Jacob's Cardiology Appointment

Merry Christmas! Sorry again for the delay in Jake's update. I am currently working on a very special project which I will reveal soon!

Jacob's cardiologist visit went very well. Jake surprised everyone by coming to his appointment dressed like Santa's little helper. He even hand delivered Dr. Heydarian's Christmas card.

Of course Jake wanted to eat the card.

Dr. Heydarian was very please with Jacob's progress. He is consistently gaining good weight and continues to drink more by bottle and need less by his g-tube. His chest x-ray and EKG were both good. His SATs and blood pressure were also good. The best news of the day was about his heart echo that we did while in Cincinnati. Dr. Heydarian said we could not ask for it to look any better (other than him not having HLHS that is). His tricuspid valve had minimal leakage which is very very good. Kids with leaky tricuspid valves tend to have more complications with their heart. Jacob's has consistently looked good. His aortic arch and pulmonary vasculature also was wide open and showed no signs of narrowing. His heart function had improved. Basically his heart looked great. As any heart mom can tell you we dread heart echo's. Although we want to know how their hearts look we also fear it. It is such a relief to know that his is functioning great for a hypoplast.

Dr. Heydarian always tells me that Jake is the healthiest hypoplast he has ever seen. This makes me feel so great. The only thing we wish would improve is Jake's tracheomalacia. Jake continues to exhibit classic signs of this, mainly his noisy breathing. Usually it should disappear by 6 months old however Jacob's has not gotten any better. We hope to find more answers on this when he gets his scopes in Cincinnati. I still have not heard when his appointments will be for all of that but Dr. Heydarian agreed that we should put it off until the weather warms up some. It is not an emergent procedure and I don't want to risk taking Jake out in flu season especially to a large hospital.

Jacob weighed in at 19lbs 10oz and was 27" long. He is getting so strong. He loves to hold my hands and stand and even take steps (Holding onto mommy of course). He is also starting to roll all over the place.

We are so blessed to have our family together this Christmas. It has been a very long year with many bumps in the road but I thank God everyday for my blessings. I have many close heart friends who have lost their precious angels this year and I think of them daily. May God grant them peace this holiday season. Their babies may be gone from this earth but they are forever in our hearts. Forever teaching us that each moment we get with our children is a miracle and a blessing that should be cherished not wasted.

Merry Christmas to everyone. Thank you so much for the support and love you have shown us this year. You are all so dear to our hearts.

Love,
The Bakers


Some pictures from our visit...

Cutest elf ever!

Dr. Heydarian playing with Jake

Jake's new pediatrician, Dr. Shields

Dr. Heydarian.. Love this man!

Jake loving the attention!



Monday, December 13, 2010

Gotta Love His Laugh...



Jacob continues to amaze everyone with how well he is doing. He now weighs 19lbs 9oz and is all rolls. He is eating over 7oz at a time and takes at least 5 of it by bottle. A few times he has taken the whole feed by bottle which is amazing progress. Jake also loves eating his baby food. Can't get enough of the carrots.

He has had his second round of Synagis shots although we are still keeping him out of public places. I know he will eventually get sick at some point but I don't think its necessary to accelerate that. Jake doesn't NEED to go to crowded places during flu season and I can get things done on the weekends and in the evenings once my husband is home. So for now we will continue to lock ourselves in our house. By the time cold and flu season is over Jake will be a year old and I will feel better about taking him out in public. He will also have his scopes by then and we will have a better idea about his breathing issues.

For now we are just enjoying all of the blessings that we have been given and looking forward to an amazing Christmas. Aidan is more excited then I have ever seen him and this will be Jake's first Christmas which is extra special because a year ago we did not know if he would be here with us.

Milestones:
Jake is trying oh so hard to pull himself up into a sitting position all on his own and he gets about half way there before getting frustrated. He is also rolling all over the place now. Baby Gate is locked at all times because Jakie is mobile... somewhat.

Still no Mama's or Dada's but Jake continues to interact and make other baby sounds. He will do everything in his own time. Everyone continues to be impressed by his progress so far. If you did not see his scars or hear his breathing you would never know he was a cardiac baby. He has broken the mold with his weight and his desire for food. He continues to follow a normal growth curve and hit the 50% for his weight.

We go to the Cardiologist tomorrow and I will update later this week. For now enjoy these beautiful pictures taken by Deanna Pinkerman. We are able to go to her home for pictures so that we don't have to go out in public for family photo's. She always does an amazing job and we are so blessed to have her.

I have also included a video that I took this morning... sure to make you smile!

Love,
The Bakers





video

Wednesday, December 8, 2010

A season of giving..

I wanted to mention a few people that I left out of my post on giving thanks.

I mentioned the mom's who gave up their lives in order to move to Philly and move in with us for months in order to help us out while our family was living 9 hours apart. I forgot to mention the dads. My dad and Andy's dad lived for weeks upon weeks without their wives and that is a huge sacrifice that we are eternally grateful for. It is not easy to be apart from your partner and they did not hesitate to help us when we needed it. While my mom was with me in Philadelphia my dad was in a bad car accident. He could barely get around but he insisted she stay there with me and Jake. They were apart for 8 weeks straight. Andy's dad's house flooded while his step-mom was at our home taking care of Aidan. Again he did not complain or tell her she needed to come right home.

Thank you dad and thank you Tommy for being there for our family. Your sacrifice did not go unnoticed and we love you and are so blessed to have you in our lives.

I want to mention also our good friends Wade and Natalie. If Natalie had not called the other parenatal center for a second opinion for me who knows where we would be. Not only that but they have reached out to us financially and emotionally over the past year. They have set up a fund raising jar at their business and have been there for our family despite what may be going on in their own life. Their own son had to go to Cincinnati Children's Hospital recently for a condition called EE. Yet they continued to ask about Jacob and what they could do to help. I ask that you also remember their son Alex in your prayers. Thank God his EE is not severe and he can keep food down but he will need to adjust to a new complex diet and continue to have tests in the future.

I also would like to talk about a special group of women that mean the world to me. Heart Moms... These women are the strongest group of women I know. Despite the own battles they are facing they will put their problems aside and be there for you in a heartbeat. It is a bond that will last forever. Stacey, Jennifer, Laura, Amy, Lisa and I were all pregnant at the same time. We met online and still talk daily now. I met Laura, Jenn and Stacey in person at CHOP. Sadly two of them lost their babies. Yet they continue to keep in touch and follow Jacob. They continue to support CHD awareness and fight for our babies. They are so amazing, so strong and such an inspiration. I could not have made it through this year without them. I consider them family... sisters by heart. I have also come to know many other amazing children and families. Sadly I have also seen many babies I have grown to love lose this battle. Yet their lives were not in vein because they continue to teach others about strength and about life.

Finally I would like to mention two gifts we have received the past few weeks. We received two gift cards recently. One was signed Mrs. C and the other was anonymous. Since I am unable to send a thank you note I want to thank you here. Our family is going through a very difficult time financially. The gifts you gave us mean the world to us. We are able to give our children an amazing Christmas and for that we thank you.

The most important thing is that we have each other. My family is all here with me safe and sound and that makes me the riches women around.

God Bless
Kathy Baker

Thursday, December 2, 2010

Giving Thanks


I know I am a week late but better late than never.

This Thanksgiving was extra special for us this year. The word thankful doesn't even begin to cover how grateful we are.

Last year my husband and I spent Thanksgiving mourning our unborn son. We had just found out days earlier that he would be born with half of a heart, that he may not survive. We were just told that we had to decide if he lived or died. I was not feeling very thankful last year. I was lost in a fog of disbelief. Little did I know the blessings that were ahead of me.

This year has not been easy. Watching one child fight for his life and trying to explain to my other son why mommy can't come home was the hardest thing I have ever experienced. Do I wish I could heal Jacob's broken heart? Yes. Do I wish I could shield him from the hardships he will face in his life? Yes. Do I regret that he was given to our family? NO WAY! Jacob is the biggest blessing. I have said this so many times before but Jacob has taught so many people about what is important in life... including myself.

Jake is amazing. He has shown his mother that she is not in control but that our worst fears could be our greatest blessings. He has taught his father that miracles do happen. He has taught his brother a love and a friendship that no one could ever top. He has shown perfect strangers what true strength and inspiration looks like. He is amazing.

I am so thankful that Jake was given to me. He has shown me how many amazing people there are in the world who will reach their hand out to help a perfect stranger. I can't thank each and everyone of you enough. We are so humbled by the generosity and love that you have shown us. You have proven that there really are good people left in this world. Thank you, Thank you, Thank you.

I am eternally thankful to the doctors. To Denise Donahue our fetal care coordinator at CHOP who showed us such compassion during our darkest time. To Dr. Szwast who looked out for my son when he was at his worst. To Dr. Spray who held my babies heart in his hands at only 9 days old. Who saved my son's life. To Doctor Heydarian for dealing with my crazy worry and for taking my son under his wing. I know for a fact he made it to his second surgery because of the amazing care you gave him. To Doctor Harris and all of the nurses at his pediatrician's office who helped me anytime I asked.

To the countless doctors, residents and nurses who cared for my son. To Dr. Norwood and all of the other amazing doctors who did not give up until they found a way for our children to have a chance at living. To all of the parents who came before us who allowed these doctors to test out their theories on their newborn children with hopes of a cure.

There is no cure. Jake's heart will never be whole. But he has a life. He has a life because of the amazing care he has been given. He is laughing and playing and I owe this to so many amazing people.

Most of all Thank you God for hearing our prayers and watching over my son.

Thank you to my family and friends. To my mom who gave up 8 weeks of her life to live in Philadelphia with me after Jake was born. To Mimi and Nana for giving up their lives to stay with Aidan when I couldn't be there and for helping us in more ways I can count. We are so blessed to have such amazing families. Without your support we could not have made it. Jake is alive thanks to you as well. You made this year possible. We will repay it someway somehow.

Thank you to my husband for holding my hand and holding me up during the hardest times of our lives. Thank you to Aidan for being the most amazing big brother. I could not be more proud of you. You are such a blessing to me and you are such a strong little boy. You are the smartest child I know and the way you have gone through this year without skipping a beat amazes me. You love Jake with all of your heart and he loves you. I am so blessed to be your mom. You are my hero.

I know I am leaving out so many people. Thank you so much to everyone that has been there for our family this year. It has not gone unnoticed. We love you all.

Happy Holidays!
Love, The Bakers


The boys are growing up so fast. Jake is sitting up really well now and not tipping over much. He is changing daily. I can't get over how big Aidan has gotten over this past year. Hard to believe a few short years ago he was Jake's age. Here are some pictures of my greatest gifts!

Friday, November 19, 2010

Medication... Wow what a difference.

So sorry for the blog overload. I forgot to mention earlier that the pulmonologist in Cincinnati took Jake off of Bethanechol. It has not helped his breathing and he did not feel it was necessary for him. So that means that Jacob is down to ONLY 3 medications!

Look how far he has come just since August when he came home from his Glenn...

AUGUST 2010
8am: Lasix (0.6ml), Captopril (3 ml), Prevacid (2 ml), 1/2 Baby Aspirin, Bethanichol (0.6ml), Diuril (1.2 ml)
4pm: Lasix (0.6ml), Captopril (3 ml), Bethanichol (0.6ml)
8pm:Prevacid (2 ml), Diuril (1.2 ml), Sodium Suppliment (2.5 ml), Aldactone (1.2 ml)
Midnight: Lasix (0.6ml), Captopril (3 ml), Bethanichol (0.6ml)


He was also still on his overnight feeds.



NOVEMBER 2010

8am: Captopril (3 ml), Prevacid (3 ml),
4pm: Captopril (3 ml), 1/2 Baby Aspirin
8pm: Prevacid (3 ml)
Midnight: Captopril (3 ml)

No more overnight feeds.
Started baby food and day feeds increased to 190mls per feed


Have I mentioned how proud I am of Jacob. Wow! He has come so far in just a few months. Thank you Jacob for being so strong. I am so blessed to have you as my son. I love you more than you will ever know.

Thursday, November 18, 2010

Who said cardiac kids don't eat?

I didn't think I gave you enough to read on the last one so here is one more lol.

Back Story:
When Jake was born he could not eat by mouth. With every tube feed I would dip his binki in breast milk so he would have something to taste and associate with eating. Some g-tube kids refuse anything by mouth and I wanted to prevent that. When he was hospitalized at our local hospital for c-diff they used apple jelly instead of sugar water to calm him. There was no going back after that he was hooked. He LOVES apple jelly. I know when I first saw it my initial reaction was "Where is the biscuit, seriously this can't be good for him" but I ran it by all of his docs and they all said it was harmless. Mind you I just coat the binki with it, its not clumped on there or anything. Just gives him some flavor since he did not eat by mouth at the time. Even his cardiologist uses it to calm them during EKGs.

Every night before bed we would put a small amount on a paper plate and put it at the end of his crib so if he got fussy we could give him a little dip and he would calm down and drift off to blissful sleep.

Last week
I woke up at 8am and realized Jake had not woken up at 5:30 for a diaper change like he usually did. I went into his room and he was all smiles with his binki in hand. Then I noticed that the paper plate was laying in the crib on the opposite side by his head. My guess is that he stuck his feet in it and it stuck. He then grabbed it and went to town. The plate looked like it had been chewed by a dog.

I grabbed Jake and ran him to the living room where I reached into his mouth to make sure there were no pieces that he could choke on. He seemed quite amused. He was perfectly fine. No paper cut, no paper pieces. Then I lifted all of the pieces of the plate and lined them up. There were no chunks missing. At most he would have gotten a few fibers. Good for constipation right?

After making sure Jake was completely ok I could finally laugh at the situation. How can you not when you see this plate? Cardiac kids and especially g-tube kids don't usually like to eat. Mine ate a paper plate lol. Can we say teething?

Needless to say we no longer put ANYTHING in Jacob's crib. He is getting too mobile.

Enjoy the pictures!


The Full Update


Jake and I had a long day yesterday so sorry I was unable to post this until now but I needed to regroup. Here is a breakdown of our day.

7am: Woke Jake up to have his bottle. He was not allowed to have any formula after 7:30am because he was being sedated at 1:30 for his heart echo. He could have pedialyte up until 11:30 but nothing after that.

My mom took Aidan to the Aquarium and I took Jake to the hospital. I decided I did not want Aidan stuck in a hospital all day. This way he had a good experience when we had to travel with Jake for appointments. This is important after the year he has had. Aidan made me promise to tell every doctor that he loved his little brother.... I kept my promise!

PULMONOLOGY
9am:
Arrival at Pulmonary Registration

SATS: 80
WEIGHT: 18lbs 9oz

Warning: This may be confusing and really I can't give details until we go back in January and get some more answers.


First some Definitions...

Aspiration:
The entry of secretions or foreign material into the trachea and lungs.

Tracheomalacia:
A condition characterized by flaccidity of the tracheal support cartilage which leads tracheal collapse especially when increased airflow is demanded.

The trachea normally dilates slightly during inspiration and narrows slightly during expiration. These processes are exaggerated in tracheomalacia, leading to airway collapse on expiration. The usual symptom of tracheomalacia is expiratory stridor or laryngeal crow.

If the condition extends further to the bronchi (if there is also bronchomalacia), it is termed tracheobronchomalacia. The same condition can also affect the larynx, which is called laryngomalacia.

IN ENGLISH: HE HAS A FLOPPY TRACHEA AND VERY NOISY BREATHING

Vocal Cord Paralysis
Inability of one or both vocal folds (vocal cords) to move. The paralysis is usually due to damage to the nerves going to the vocal cords or due to damage to the brain itself.

Some causes of paresis include viral infection, cancer or tumor compressing the recurrent laryngeal nerve, intramuscular tumor limiting vocal fold movement, trauma, compression of the vocal cord nerve from intubation, or laryngopharyngeal reflux. Cardiac surgery represents a risk to normal voice function as the nerves serving the larynx are routed near the heart. Damage to this nerve during open heart surgery is not uncommon.


The vocal cords are open when we breath and closed when we speak. So when you eat it is supposed to close after you swallow and if it stays open like Jake's there is risk he can aspirate it into his lungs.


Now about our visit:
We met with the pulmonologist and talked about Jacob's history and his tracheobronchomalacia. After listening to Jake and talking with me he told me that he suspects that Jacob has partial paralysis of his vocal cords due to the high pitch in his breathing. The good news is that he said his lungs sound great. All of his noisy breathing is in his vocal cords.

I told him that this was a gray area when we were at CHOP and they said that his vocal cords were moving but not touching. CHOP did a swallow study, reflux study and ENT scoped him. ENT said they were not paralyzed but other people said they thought they were so we really never knew. He passed the swallow study with no aspiration. Due to severe reflux they did the g-tube/nissen surgery. If you remember from earlier blogs his vocal cords were so swollen and red that he had no sound for the first month of his life. He regained that sound after the nissen so it was though that they were not paralyzed only swollen from reflux. Warned you this was complicated.

Ok so that was all when Jake was only 4 weeks old. He has not had any scopes or studies since then. He continues to have noisy breathing. The pulmonologiist said he could be wrong about the paralysis but the squeak Jake has in his breathing and voice is an indicator. That being said if it is paralysis it is only partial. Jake makes noise and lots of it. He talks "Baby talk" and is saying all of his vowel sounds. He also has not had a problem with eating. The Pulmonologist said that it could be that Jake is so used to the feeling that he doesn't have that gag reflex and cough but he could still aspirate. However Jake does cough at times when he eats which means he does have sensitivity in the back of his throat so that is promising. He did not say we had to stop bottle feeding but they would like us to come back in January for further testing.

I will have to make one trip to meet with ENT and anesthesia. Then we will go back and Jake will get scoped by ENT and Pulmonology because they can look for different things. They talked about doing a GI scope to check the reflux but I WILL NOT put Jake through stomach surgery again to tighten the nissen so I told him I would rather not do that one. Then I will have to come back to meet with the pulmonologist to discuss the results. I am trying to arrange to do all of this bunched together so I don't have to make 3 trips but the pulmonologist is only there twice a month because he travels to satellite offices.

So I know this is full of contradictions. Welcome to my world. This is why I really am on board for the scopes. He is older now and we can get a better understanding about what is going on with his vocal cords and hopefully a definitive answer! I am not worried though. Jake has continued to do well with eating and yes he is noisy but he is making more and more sounds and "Talking" without a problem. I just want to know one way or another because if there is risk for aspiration or anything that could lead to speech problems I want to be able to work on that for his safety and development.

After our appointment they sent us down for a chest x-ray so they have a baseline on file for Jake.

Next on to...
CARDIOLOGY

By this time I had tried to give Jake his pedialyte so he had something in his belly but he was not having it at all. HATED the stuff. I even had the fruit flavor... no go. So it all went in his tube. We got the chest xray done which he hated as well and then made our way up to cardiology.

Jake was supposed to get a sedated heart echo but we still had 2 hours. I checked us in hoping he could go early because at this point he was irate that he had not had formula yet. He was hungry, tired and pissed off from being messed with. The heart echo lab was full so no chance on going early.

I decided to walk Jake around in hopes he would fall asleep. Everyone kept telling me how cute he was. One girl came up to us and asked if she could touch him. I quickly relied NO! I explained his condition and she understood and told me how special he was. At least she asked, I HATE when strangers come up and want to touch your kid. This is why I don't bring him in public!

Jake finally fell asleep but was not able to get the echo for 40 minutes so he woke up and still needed to be sedated for the echo.

I was able to meet Dr. Heydarian's wonderful daughter. She is a cardiologist at Cincinnati Children's. It was so nice seeing someone who knew us (by name anyway). I felt so lost there all day. She held him until he passed out from the sedation. She jokes with the echo tech that she would have to give him the echo in her arms because she was not letting him go. Love the Heydarian's! I am so glad she was able to meet Jake while we were there. She also gave me her information so that I can have her involved when they sedate Jake for the scopes since he is so high risk.

Echo went smoothly since Jake was knocked out. It was odd because we were in the room next to where I was a year ago finding out about Jake's condition. Today marks the anniversary of when I heard those words that changed my life forever..."There is something wrong with your babies heart". Wow we have come so far in the past year. It definitely has been a roller coaster but I am so blessed to be here a year later with a beautiful baby who has taught me so much.

Dr. Heydarian's daughter called me a few hours after we left with the results of his heart echo. His heart looked great. No significant tricuspid regurgitation which is very good news (For those not familiar with hearts this means that the tricuspid valve is not leaking). Leaking can occur because the right side of the heart is enlarged due to the extra strain on the heart. Therefore the valve does not meet up correctly. Too much leakage can be fatal. The arch and pulmonary veins were wide open. This is also great. The best news I have had in a long time was that his heart function looked very good! Jake used to be on the lower side of normal. Now it looks great so his function improved!

The rest of the night Jake was pretty out of it. He would wake up but you could see in his eyes he was all drugged up. He scared me once because his lips looked blue and I hooked up to the pulse ox and he got down to the high 60s. He had just eaten and acted like he was retching so I think the food was to much with the sedation. Throwing up is the most common side effect. Since Jake can't throw up he retches. I put oxygen on him for a second. He freaked out and ripped it off. His SATs went back to mid 80s and he remained there.

I decided since he was so out of it we should just head home that night. I kept Jake's pulse ox on him so I could monitor him the whole way. I also had the oxygen in the back just in case. He did great. He got fussy towards the end when he was hungry but slept most of the way and his SATs stayed in the mid 80s. Aidan slept the WHOLE time. We got home around 9pm. It was a LONG day!

Jake has been fine with the rest of his feeds and has been chugging down bottles like a champ! Overall I think it was all good news. His heart and lungs look great which is the main thing. The vocal cords... we will figure out but I am confident that Jake will overcome this obstacle just as he has in the past.

Love,
The Bakers

BTW... Where can I mail off for my nursing degree? I really think I should have one by now!

Wednesday, November 17, 2010

Home Sweet Home

We decided to come home tonight so I am exhausted and will post a full update tomorrow. The short update is that Jake most likely has vocal cord paralysis but we won't know for sure until they do more testing in January. His heart looked great. Function had improved, no tricuspid regurgitation, arch wide open. It looked really good.

Ok I know that was a horrible update but I was at the hospital from 8:30 to 3:30 and then drove home tonight and just got home at 9pm so I need to sleep!

Thank you all for the support and prayers.

Tuesday, November 16, 2010

We Made It To Cincinnati

We are in Cincinnati and Jake has been a happy kid. He and Aidan were so good during the 3 hour trip (So much better than the 9 hour drive we usually take to Philly). Jake fussed for about 5 minutes when we were almost there but other than that they were both happy campers the whole time!

Our morning starts early tomorrow. I have to feed Jake at 6:45 because he can't have any food after 7:30 and I want to give him time to eat. He can have pedialyte at 11pm but nothing after that because of the sedation for the echo. That means he should be getting hungry around the time for his pulmonary visit.. hope he likes pedialyte.

We meet with pulmonology at 10am. They are not doing any testing because its his first visit with them but we may have to come back next month for that. I want to discuss his breathing because the bethanechol has not helped at all and he has been on it for 4 months. Jake will then have a sedated heart echo at 1:30pm. It is not cardiac anethesia just a twilight kind of drug to make him sleepy. Otherwise he would fight them so bad they wouldn't be able to see anything.

I am really praying everything looks well on the echo. It has been a while since he has had one so I always get nervous. They will check his tricuspid regurgitation and hopefully it has not gotten any worse. This is leakage around the tricuspid valve. It happens because the right ventricle is enlarged so the valve doesn't quite match up. I am also hoping his heart function has improved. He is on Captopril because he has always been on the lower side of normal.

It will be a long day at the hospital so we decided that my mom and Aidan would not go and I would take Jake alone. My mom is taking Aidan to the aquarium.

The last time I was here I got the worst news of my life. I found out my baby had the most severe heart defect there was and that we needed to decide if we would have him or not. We couldn't terminate (If Jake was not going to make it I wanted to tell him I loved him and know I did everything possible for him) but we had to prepare that our baby may not survive. Thank GOD he did and we have much to be thankful for now a year later. I am hopeful we will get only GOOD news this trip. Please say a little prayer.

I will update tomorrow.

Love,
The Bakers

Saturday, November 13, 2010

Tis the season!


Ok so I know that many of you are going to want to yell at me but we decorated for Christmas. We usually wait until Thanksgiving but its been a long year and I thought we should start the celebration early!

Every year we get a real tree. We hike up the hill, cut it down and bring it home. It's really a fun tradition but we changed it up a bit this year. Honestly the thought of cleaning up pine needles and having yet another thing to take care of was not appealing to me this year. So I went out and got an artificial tree. I was not sure if I would like it but I am happy to say I love it!

The best part was that Aidan got to help me put it together. He was so excited, I have never seen him more excited. He organized the pieces into piles and handed them to me quicker than I could put them up. He could not wait to show daddy all of his hard work when he got home from working. We waited until daddy got home to do the lights and ornaments. We had such a good time.

Jake was asleep while Aidan and I "built" the tree but he woke up after the lights were on. His face was priceless. He looked at the lights and started laughing and kicking. His mouth opened up and he grinned from ear to ear. Both boys were so happy.

So I know it was early but you know what after the year we have had we deserved some Christmas joy and the smiles on the boys faces were priceless!

Merry Christmas!


I love how these look like boxing gloves with hearts.
Perfect for my little fighter.


Here are some more cute pictures I took of the boys rocking out!