Monday, September 27, 2010
6 months ago I was not sure if I would ever know your smile. If I would ever be able to know your personality. 6 months ago I was embarking on a roller coaster ride that many could never imagine. A scary journey, exhausting journey... amazing journey. Your eyes are filled with such life, joy.. hope. I have said this many times but I can't say it enough. Thank you, Thank you so much for being my son. The love your daddy, Aidan and I have for you is everlasting. You have taught us all so much. You have taught us all to cherish every moment. You have touched the lives of people who don't even know you. Do you know how special you are? How beautiful you are? I am so proud of you.
You have overcome so much. You have beaten the odds. You are in the 50th percentile for your weight and 25th for your height. Do you understand how amazing that is? Most hypoplasts are not even on the chart! You are thriving! You were near death and now look at you. You knew you were meant to be here and you fought. Look at you know. A miracle from God. Thank you for fighting. Thank you for staying with me.
I used to tell people that I thought the worst thing that could ever happen to someone is the loss of a child. I was faced with that possibility, I still am. I used to fear life. You taught me that I can't go through life waiting for the end. I can't fear the unknown. Your smile makes me see that now is what matters. Every laugh, every smile, every cry. We can't control our future but we can control how we face life. Thank you, thank you for making me see this. You don't know what a wonderful gift that is.
I won't say the past 6 months were not stressful... you know me better than that. I will say that the past 6 months have meant the world to me. I would not trade them for anything. I pray we have years to come. I pray you outlive me. I pray you go on to spread your love and teach everyone you meet what it truly means to LIVE.
Whatever time we have know that it will be spent loving life. I know I am way to uptight, I worry way to much. I am the first to admit this... your father must be laughing as he reads this. Everyone I know must be laughing. So yes I do have some work to do on this new and improved Kathy. If you can do what you have done, I can start really living as well! Lets do this baby boy. I am right here with you, holding your hand... Always.
Jacob is now 6 months old! I can't tell you how good that feels to say that. He weighs 16 pounds. His last x-ray looked great and his cardiologist was very pleased with how well he is doing. His oxygen SATs continue to improve. I have noticed the last few nights he has stayed in the 80s, last night he was 88 all night. That is great for him.
Today we went to the ear, nose and throat doctor. He thought Jake looked good. He is going to follow his tracheomalacia. We will still follow-up in Cincinnati but it will be good to have a local doctor in case we have questions. I also mentioned that CHOP said all of the hearing screen was not complete. He told me the major one was done so he is not concerned but he will do the other one when Jake is 18 months old.
GOOD NEWS! Aidan does not need his tonsils out. THANK YOU GOD! He said they were moderately large but he was not concerned that they will cause a problem. He said that with everything we have been through this year he saw no need to go that route unless it becomes an issue. Aidan's ear tubes are also out and his ears look great so no more need for ear plugs when he goes in water. Overall it was a great visit.
Jacob is still on 6 medications. His diuretics were lowered to once a day instead of twice. In a month he will be off of them completely. Then we will be down to 4!
Jake will be on his blood pressure medicine and aspirin for the rest of his life. He will be on Bethanichol until the tracheomalacia goes away and the prevacid as long as he needs it.
Jake is doing better and better with his bottle feeding. At times he takes 100mls by bottle. Amazing considering 2 months ago he would not even take 10mls. We have been working on increasing his day feeds and lowering his night feeds. He is up to 130ml 5x a day. His night feed is lowered to 15mls an hour. He used to get 40ml an hour. In about 3 weeks he should be off of his night feed all together. Then we will work on condensing his day feeds into 3 times a day instead of 5. This will give us more opportunity for baby food and get him on a normal schedule.
He has not skipped a beat. He is taking it like a champ and progressing so quickly. He continues to impress everyone with his progress. He is also loving baby food. So far he has had carrots, squash, apple sauce and prunes. He eats it quicker than I can scoop it up with the spoon.
Jake continues to reach his milestones. He is still working on rolling over. He has overcome that arm being in the way. I barely push on his back leg and he rolls right over. When he is on his belly he looks like he is trying to crawl. He moves his arms and legs like a sea turtle. He loves grabbing his feet. Puts just about everything in his mouth. He loves Aidan's old sing along stage. He pushes (pounds) on the buttons. Jake is starting to laugh so much more now. A funny thing we found out is that his incision is ticklish. He gives you deep belly laughs when you tickle it. He is starting to be able to support himself while sitting up more. It won't be long before he doesn't need that support.
Overall Jake is continuing to exceed our expectations and show the world that he is a fighter. He is stable... blissfully stable. We are starting to drift from patient life to normal baby life. Thankfully there is not much to report these day. So with that in mind I wanted to let everyone know that I won't be updating as often. I am busy enjoying life with my family. I will update at least once a month but it won't be weekly. I know how it is to check a blog daily to see what is going on and I don't want to leave anyone hanging. Thank you so much for the continued prayers. For all of the support. It means so much to use. Please come back and check on us periodically but don't worry if you don't see a post for a few weeks. We are living life ... a blissfully normal life... Baker style!
Andy, Kathy, Aidan and Jacob
Friday, September 24, 2010
Sunday, September 19, 2010
The American Heart Association Start! Heart walk was a huge success. Team Jacob collected $1765.00! We had beautiful weather and I was so touched by how many people came out in their Team Jacob shirts to support our sweet baby boy.
Thank you to everyone who donated and participated in the walk.
WCHSTV/FOX11 did a news report on the Heart Walk and focused on Team Jacob. I am trying to get a copy of the story so I can show it on the blog. They told the stories of both my Jake and also the story of Jacob Roth.
My Jacob is only half of Team Jacob. I met a wonderful mom when I was pregnant with Jake, her name is Michelle Roth. She reached out to me after reading the article that I did with the Daily Mail. We had become friends through emails but until the walk had not been able to meet in person. Her Jacob is 2 years old and he has Tricuspid atresia. The right side of his heart did not form in-utero.
We hope to have our boys grow up together and know that they have someone who is traveling a similar path. We also hope to team up to do even more awareness events. Thank you to the Roth family for their support and friendship during through this journey. I am so happy we finally got to meet and hope to see you soon!
Friday, September 17, 2010
The American Heart Association Start! Heart Walk will take place tomorrow in Charleston, WV. I hope to see everyone there as we celebrate those who continue to fight this battle and those who were taken too soon. Jacob will not be at the walk, we still feel it is to risky for him to be around that many people. Especially right now when everyone seems to be sick. He will be at home with daddy but his big brother Aidan will be representing him.
Thank you again to everyone who supported Team Jacob. Together we raised over $1600 for heart disease and stroke research. Thank you for making a difference!
Here are some pictures to enjoy!
This is huge. So many babies go undiagnosed and lose precious time that could have saved their lives. Many are sent home and die before they can get treatment. A simple pulse ox test could alert doctors that there is a problem and save lives. Thank you Annamarie for fighting this battle!
Read the whole story here...
I met with Bryn today, Jake's speech therapist. We spoke about him taking less by bottle and she saw first hand how when he was done... he was done and there was no getting him to try again. I am going to try to give him more breaks and see if that helps him. He seemed to have some tummy troubles today and was not great with any of his feeds. He grabs the bottle now and takes it out on his own for breaks and then puts it back in when he wants more. He usually takes about 40mls and then starts to lose interest. Bryn pointed out that it seems like he want's it but is tired and gets mad at himself because he want's to eat more.
Baby steps... he will get there. For now I am going to give it a few more days before we increase his feeds to 110ml during the day. I don't want to push his belly to much at once. He tolerated the increase to 100 really well.
I was putting baby food away tonight and started thinking about how it was not long ago that I was not sure if I would ever get to take Jake home let alone buy baby food for him. I remember going through his clothes when I was pregnant and wondering if he would ever wear them. I couldn't help but smile to myself as I was stacking the food because he has come so far!
I am so blessed to have Jake in my life. I can't imagine not ever knowing his smile or getting to have him be a part of my life. Thank you all for the continued prayers and support. I will continue to cherish every moment I have with my family. That is what life is about.
Thursday, September 16, 2010
I apologize that it has been so long since I have written in this blog. What they say is right, no news is good news! Jacob continues to grow and develop like any other baby. You would never know that he has been through so much.
During the day Jacob has been increased to 100ml/feed 5 times a day on the 24 calorie formula. We are slowly cutting out his overnight feeds. The plan is to increase his day feeds by 10ml every 4 days and subtract is overnight feeds by 5. In a bout 5 weeks he should be completely done with the overnight feeds, YAY! This would mean no more feeding pump and a more "Normal" feeding schedule.
After we accomplish that goal then we will work on increasing the day feeds so he gets more volume but less frequently. He is currently doing 5 feeds during the day but only getting a little over 3oz per feed. We hope to increase that to 5 to 8oz per feed but only 3 times per day. This will allow us more room to play with baby food.
Right now Jacob has mastered all of the rice cereals available. The next step is to add veggies. The problem is that Jacob eats every 3 hours. Most babies only get formula 3 times a day not 5. His formula is his main source of calories. The baby food is just for practice at this point. The calorie intake is lower than formula. I can't feed him close to a bottle time because he will be full and will miss out on his main source of weight gain. So for now we are introducing food for fun. To allow him to practice eating by spoon and to let him experience different tastes. Once we condense his day feeds we can start letting him eat more baby food and it will become a larger source of calories for him.
Jacob is still favoring his left side so we are currently working on putting him on his right side more often. The big thing now is that Jake is rolling A LOT! He loves to hold his feet and toddle back and forth. When he does this he can rotate himself into a complete circle. It is so cute! He is also rolling on his sides all of the time. He can't seem to get his one arm out from under his body but he can roll the rest of the body completely over. We work on this a few times a day using toys to entice him to roll over. He cries when he is fully on his belly but he is doing a great job at lifting his body up.
I also notice when I hold him that he supports himself much better now. It makes carrying him around much easier. Jake is also getting his hand coordination down much better. He passes toys from one hand to another. He focuses in on objects and grabs them easily. He is really learning control and its so fun to watch. Jacob is also enjoying Aidan's old sing along stage. He loves to pound on the buttons. Big brother Aidan loves to show him how to do it. I love watching them interact with each other.. such an amazing sight.
Jacob is still working on taking food by bottle. At one point he was taking 90ml by bottle like it was nothing. Lately he has backed down to 40 to 60mls by bottle. I believe it is from teething. He is drooling, chewing, fussing so much lately and I am just waiting for those teeth to pop through. He is putting everything in his mouth. I have to watch him because he will try to yank his g-tube out now and also loves to take off the gauze which is underneath it. Jacob loves the bottle but he seems to get tired or board of it. Whatever he does not take by mouth goes through the tube. Hopefully one day we can get him on all bottle feeds. One day at a time right? I do like having the tube for medications. I never have to worry about him spitting it out because the meds all go through his g-tube.
Jacob is still completely off of his oxygen. He does desat when I first put him to sleep but it always comes back up on his own. I am still going to mention it to the cardiologist just in case. I keep him hooked up to the pulse ox overnight to alert me of any change.
Jacob weighed 15 and a half pounds last Friday. I am going to bring him to the pediatrician this Friday and will update then. He is still in the 50th percentile for his weight and 25th percentile for his heigth. This is huge for a hypoplast as they are usually not even on the growth chart.
COLDS AND SUCH
So many people around here are sick. Many have coughs and serious colds. I am afraid to leave the house with Jake. His doctors in Philly said his heart is much more stable now however I am still afraid to risk it. If he gets sick it will be much worse on him than it would be on a healthy child. I need to protect him. I don't want to be the overbearing, overprotective mom. I don't want HLHS to define Jake. I plan on giving him as much "Normal" as possible but I also have to do what I feel in my heart is the best thing for him. Right now he is still so small and fragile. I don't feel the need to bring him into stores and heavily populated places. We can go to the park or for a walk in the neighborhood. Family can see him bit I am still going to be very cautious.
I need to talk to his pediatrician and see if I can get a nursing company to come out and give him monthly RSV shots. He will need them and the pediatrician does not stock them in his office. There is NO WAY I am bringing Jacob into a health clinic so I am praying we can work something out. He will need the flu shot as well as monthly RSV shots. I plan on mentioning this to his cardiologist as well.
BIG BROTHER AIDAN
I am so happy to announce that Aidan is now completely potty trained. All it took was promising the kid 30min on the PC playing games for every time he goes on the potty. Wow a three year old wanting the computer that bad... seriously its a different world we live in now lol. Anyway whatever works right. I had been concerned that it would be difficult to "NIGHT TRAIN" him but he never needed it. From the get go he has woken up dry. He wakes up and goes right to the potty. SO PROUD OF MY BIG BOY! I can't believe how fast he has grown up.
PRAYERS FOR MY PAPA
My grandfather has been battling cancer for a very long time now. Recently they discovered that the cancer is in his bones and has now spread even further. There is nothing they can do at this point about the cancer however I am praying for comfort for my grandfather. He is in so much pain however the pain killers create a whole new set of problems and discomfort. My grandfather is the strongest, kindest man I have ever met. Please help me lift him up in prayer.
AMERICAN HEART ASSOCIATION
The American Heart Association offered to honor Aidan at the heart walk this Saturday and let him walk with the National Guard. Aidan was to afraid to walk with them but they offered to still make him a gift bag since he is such a great big brother. Thank you so much AHA! You are so amazing and we are honored to help you raise funds for this great cause.
It's Not To Late!
Please consider taking the time and donating to the American Heart Association. So many lives are affected by congenital heart defects and strokes yet there is not much funding. Help us make a difference. Team Jacob has collected $1300.00. We are #5 on the team ranks. Please help a great cause and donate to team Jacob by clicking on the banner on top of this page.
Wednesday, September 15, 2010
Click here for Mapquest Direction
2010 Greater Charleston Start! Heart Walk
WV State Capitol Grounds, Charleston
The Start! Heart walk will have three different 'Villages' full of activities, education and fun for the whole family! The Heart Walk has become an experience, rather than just an event. The Create Hope Village honors survivors. The Inspire Change Village encourages participants to make lifestyle changes for a healthier lifestyle. The Celebrate Success Village celebrates those who have made a commitment to living an active, healthy lifestyle.
The 2010 Greater Charleston Start! Heart Walk goal is to raise $102,080 for heart disease and stroke research and education! It is a non-competive family event consisting of a 1 or 3 mile walk, health screenings, etc. And yes, dogs are welcome.
I am not familiar with the capitol complex however I was thinking we could meet at the survivors tent. Look for the Team Jacob shirts. I want this day to be fun for everyone. There is a 1 mile walk and a 3 mile walk. The purpose is to celebrate those who battle strokes and heart attacks and those who have lost their lives due to these illnesses. By no means do we have to walk as a group. I am just so honored to have you walking to support Jacob and all of the other miracles out there. I look forward to seeing all of you at the AHA Start! Heart Walk.
It is not to late to donate to Team Jacob. You can click on the banner at the top of this page to donate. We have already raised $1300.o0. I am so proud of my team and so honored to be able to help out with such a good cause.
The Team Jacob shirts are in and they are amazing (Thank you Uncle Jeremy! If you have not received your shirt please message me to let me know, Thank you!
Sunday, September 5, 2010
Sorry I did not update sooner! The echo looked good. His aorta and septum were both wide open. His heart function is the same as Pre-Glenn... on the lower side of normal, so he will remain on the captopril. His tricuspid valve is still mildly leaky but nothing abnormal for a hypoplast. All in all he looks very stable and we don't have to go back to the cardiologist for another month!
Jake has been holding his SATs in the 80s so he has been completely off of the oxygen for days. He is tolerating his new feeding schedule very well and loving the baby food!
He is also doing great with the med changes. He has not been puffy at all and is still peeing well which is great considering we decreased his diuretics.
BLISSFULLY NORMAL BABY THINGS...
Jake is teething really bad. Have not seen any come through but he is constantly chewing on everything.. including mommy! He is also slobbering quite a bit.
He is grabbing at everything... including his g-tube.
He is tolerating tummy time very well and passing objects from one hand to another.
Jake is also getting more verbal. When he is mad he says "mmmum mum mum" Not so sure I like that he says mum when he is mad because it sounds so close to mom but on the other hand he has no excuse not to say "Mama" for his first word since he has the "M" sound down! Aidan said "dada" first so its only fair!
Jake continues to take the bottle well. Since we use the tube less he is not getting irritated at the g-tube site and that has eliminated many of his tummy troubles. The main issue with his tummy now is the gas he gets from drinking the bottle.
I am constantly amazed by our little miracle.
Pappy, Mimi and I took Aidan to Yeager airport today. They had planes, helicopters- and cars on display and he was able to go inside of the planes. Daddy stayed home with Jake since we are still not taking him out. It was a beautiful day and so nice to get some "Aidan" time!
We are truly blessed to have such great kids.
Funny line of the day:
On the way home Aidan asked Pappy if he knew what "Humble" meant. Then he said "Humble means I am perfect." LOL. I think I better nip that in the bud quickly, although I could not help but to laugh. Gotta love kids!
Wednesday, September 1, 2010
Jake saw Dr. Heydarian today and had another great report. His heart sounded great and the chest x-ray looked good. A little haziness on the right lung but that is common for Jacob. He is still very pleased with Jacob's weight and overall progression.
Jacob now weighs 14lbs 11oz!
After the cardiologist appointment we went to have Jacob's echo done. I should find out the results of this tomorrow. Jacob does not like echo's, I mean HATES them. He screamed and screamed, I tried everything. Feeding him, holding him, singing, movies, binki dips with apple jelly (That usually always works)... nothing. After at least an hour he finally calmed down (Wore himself out). He fell asleep and I was laying on the bed next to him holding his hand. The lights were off and I fell asleep lol. How embarrasing. The echo tech woke me up when she was done. I could not believe I had fallen asleep. So Mommy got a cat nap and Jake remained still and the tech got all of the pictures she needed. Win for all! Praying it all looks ok.
On a different note... I still have not called the ENT doctor about Aidan's tonsils. I know I need to call for his sake. I know it is silly but I am so frightened by the thought of Aidan having to have his tonsils out. I don't know if I am strong enough to watch another one of my children go through surgery this year. It is too much. I know that sounds silly since we have gone through way more severe surgeries with Jacob but mentally its just so hard to take.
Jacob's medications are down to 6meds a day instead of 8! This is a great step in the right direction. He is no longer on Diuril or the sodium suppliments and only has to take his lasix twice a day instead of 3x a day. He will be on aspirin and captopril or enapril for the rest of his life. Hopefully we can ween him off of the rest at some point. Dr. Heydarian did increase his aldactone to twice a day since he is dropping the diuril and on of the doses of lasix.
Jake does not have to go back to the cardiologist for a whole month! That is huge after 4 months of going weekly and biweekly. Go Jake Go!
Big changes in Jakes feeding schedule as well. I met with Jakes nutritionist and we talked about slowly transitioning him away from the continuous night feed. Most babies do not eat at night when they are Jake's age and it definitly is not normal for a baby to eat for 10hrs straight. It is important to me for him to have the most "Normal" life as he possibly can. So she helped me come up with a new schedule. Jake will now get 5 daytime feeds instead of 4. They will be 85ml each instead of the 80ml feeds he was getting. These feeds will be at 8am,11am,2pm, 5pm and 7:30pm. This will also give us one more feed to work on bottle feeding. His overnight feed will still be 40ml/hour however it will only be for 8 hours instead of 10hours. This plan will give Jake an extra 25mls over the course of the day. I am going to increase him by 5ml per feed each week as long as he tolerates it.
I have also changed him from the premie nipple to the stage 1 nipple and he seems to be taking to it really well so far. At first he did not want to use it after about 40ml but he is getting better. Jake guzzles his milk now. he drinks a whole bottle sometimes in less than 10 minutes and I don't have to use the tube. Can't tell you how happy that makes me. He is also not haveing the pain he once was because the tube site is not being used as much so it is not getting irritated.
Jacob has been doing so well. He has not needed oxygen during the day for about a week or maybe more. He was still needing it at night for a while but the last few nights he has not had to have it and he is holding strong with SATs in the 80's. He even reaches the high 80s at times.
I spoke with Dr. Heydarian about Jake coming to the heart walk. He did not think it was a good idea and I agree with him. There will be a lot of people there and there is sure to be some people who are sick. It is to big of a risk and not necessary. Jake is still small and needs to get stronger. My husband is going to stay home with him so that I can go and represent him at the walk. I am sorry to anyone who was hoping to get a glance but its just to soon. I can't risk that after all we have been through.
There is still time! If you would like to donate to Team Jacob you can do so by clicking on the banner at the top of the page. The walk is on September 18th in Charleston, WV. Come out and walk with us!
♥ Did you know that every 13 minutes 1 baby will be born with a congenital heart defect? Did you know, everyday, that 11 of them will lose their battle? Did you know that the funding for CHD research is way underfunded and most of the money for research is from donations? How would you feel if you were told "There's something wrong with your baby's heart"? ♥