Life as a heart mom

Sorry it has been so long since my last post. A lot has happened so I appologize for how long this will be. So here it goes...

Monday
Jake had a pediatrician appointment. He weighed 10lbs! Jacob had been acting very fussy. I assumed he was hungry because he would go crazy on his binki. So I discussed it with his doctor and we decided to up his volume because he was not getting as many calories as he should be. He is gaining about an ounce a day which is perfect. But he seemed to want more.

Jacob had his 2 month immunizations at this appointment as well. The nurses couldn't stand to have to give him the shots. I told them he had been through much worse and Michelle said "Not by our hands". Dr. Harris and his staff are so great. I am so blessed to have so many people love our son. Even though they hated it they did give him his shots and he only cried for a second before I remembered I had sugar water. If you don't know, it is amazing what a little sugar does for a baby. They forget all of their troubles lol. He did great. No fever or anything!

Later that day Jake had to go for a chest x-ray. That night I noticed he was even more fussy and he was up a lot of the night screaming. He would scream when I fed him during the day also so it seemed he was not tolerating the extra food. He was on a 27 calorie diet so it is a lot on the belly.

Tuesday
Jake had an appointment with his cardiologist Dr. Heydarian. I can not tell you how much I love this cardiologist. He is such a sweet man and he truly cares about Jake which means so much to me. He will be retiring within a year and I hate to loose him but am so glad he is with Jake during this crutial time.

Jake's chest x-ray looked great and his sats and ekg continued to be good. I brought up the fact that I tried to increase his volume but he did not seem to tolerate it well. Dr. Heydarian said his weight gain is good so we should not push it. He said that we have to go very slow with Jacob because of his breathing and his heart. We don't want to make it work any harder than it has to. He said that even though he seems hungry at times its a fine balance and the most important thing is that he is gaining well. It is hard with him because he is fed through a tube so he cant just stop drinking when he is full. It is going to be a lot of trial and error. After talking to Dr. Heydarian we decided to still do the extra 5ml's per feed during the day but to only do an extra 20ml's over the continuous 10 hour feed at night since that was where he was the most fussy. We can build up slowly from there but over a few weeks.

Jake continued to be very fussy and I have never seen him scream so much. He would throw his whole body. I could tell he was in a lot of pain. His sats started dropping that night off and on to the low 70s and even 60s. I watched the monitor most of the night.

Wednesday
The next morning he spit up. Jacob has a nissen so he is not supposed to be able to throw up. I also was getting a lot of yellow out of the tube when I vented him. I called doctor Heydarian's office and they saw me right away. After talking to Dr. Heydarian he told me it is normal for his sats to drop when he is upset and the crying won't hurt his heart. He did say however that if a baby is that fussy there is normally a reason and he wanted him admitted for testing to be safe. These kids can go downhill fast so you can't take anything for granted. So we were admitted to the PICU at Cabell Huntington. I was pleased to find out that the attending there used to work at Duke and saw a lot of hypoplasts.

They did another chest x-ray, a heart echo, bloodwork and monitored him. They put an IV in just in case but did not put him on any iv fluids because they wanted to monitor him as if he were home. As always his breathing worried them and every new person would ask if it was his baseline. I assured them it was and they were ok after that. Most people are admitted and doctors take over, however it is different with a hypoplast. They don't see it often so they look to you for a lot of what to do. You know your child and what their "Norm" is. The cardiologist has other hypoplasts so he of course told them what he should be. However every hypoplast is different so you still are crucial in their care. All of his tests looked great. Heart function was good. Aorta and Shunt were wide open. Lungs looked great. They also did a stomach xray to make sure he had no obstructions and it also looked good.

I think Jake just missed the hospital. I need to break him of that fast. He made a total liar out of me. He was smiling and cooing more then he ever had before. My mom took Aidan for the night since Andy had to work and I spent the night at the hospital with Jake. That night he had diarhea which was very watery. The nurse sent it out to be tested just in case. The next morning his sats hung out in the lower 70s for a bit but by that afternoon he was back to his normal 80 to 85 range.

Thursday
We talked to Dr. Heydarian who was very pleased with how Jake looked. At this point we thought it was a combination of acid reflux (even with a nissen you can have some), and not tolerating his feeds. Dr. Heydarian suggested trying 24 calorie formula with a higher volume. We are now giving him 65mls during his day feeds and 34ml/hr overnight for 10 hours. This brings him from 550cals to 600 but the combination may be easier on his belly. So far so good! We also met Jacob's GI doctor who looked at his gtube and said that the reason it hurts him is it is too tight. He put a new bigger one on. This tube came with an extension that was twice as big as his other one and I would need to flush meds with way to much water. I didn't see that this would be good for his belly issues so I had him change it back to the old one (I had a new kit). I ordered a larger size of the brand that will work with my extensions and he will change it out again next Thursday. The GI doctor also said the yellow when I vent him is completely normal. It is belly acid.

Jacob's stool sample came back while we were waiting for discharge. It showed he was possitive for C-diff. This is a bacterial infection in the bowels/intestines. It is caused by being on antibiotics for a long period of time, epecially Clendamiacin. Jake was on that for his incision infection. It also kills the good bacteria so they get this new infection. Now the tricky thing is all infants have C-diff in them. It is colonized so its hard to tell if it was a true infection however because of his belly pain they put him on Flagyl. It is an antibiotic used for this type of infection. It won't hurt him to be on it and with the way he has been acting it seemed like this may explain all of his pain.

So now Jake is on 7 different medications. Aspirin for clotting, Vitamin D, Lasix and Diurill for fluid retention, Captopril for blood pressure, Previcid for reflux and Flagyl for the infection. Instead of 3 times a day, I am now giving meds 6 times (midnight, 6am, 8am, 12pm, 4pm and 6pm). I was very overwhelmed by this yesterday and that combined with a fussy baby and not sleeping for 3 days made for a very cranky mommy. However I was able to make a new med schedule for me to hang on the fridge and felt much better. Amazing how good organization makes you feel.

Friday
This morning he cried horribly when he had a bowel movement. I thought we were in for a very long day however the rest of the day was much better. I think the flagyl helped him a lot. He was a happy baby the rest of the day. It was the first day in a while he did not scream when being fed. I kept him on the heart monitor all day and his sats remained perfect as did his heartrate.

I have got to keep this baby out of hospitals. The poor kid has had 4 bacterial infections and he is only 9 weeks old. That is the downside to having to go to hospitals all of the time. Overall I am glad we went because we caught the infection which if it is left untreated can cause severe problems. Also because I know his heart is doing really well which was a relief.

Aidan
I think all of this is starting to finally get to Aidan. Yesterday when he came to see me at the hospital he cried horribly when he had to leave. Also today my mom came to help with housework and with the baby. She was going to bring my dad food for lunch and Aidan wanted to go but he was so afraid to leave me. When I mention bringing Jake to the docs (Which we do a few times a week), he cries and says "Why do you have to go back to the hospital". He took all of this so well while we were at CHOP but I think now he is afraid of me leaving again. I am trying to make this as easy on him as possible. I try to give him attention whenever I can but I can't hide the fact that Jacob needs a lot of care. Nurses are in and out and we are constantly at the doctor. This is our life now and it breaks my heart to see Aidan affected. He is a good kid and loves his brother. I know he will be ok.

Here is a pic from his birthday celebration last weekend. I was at CHOP and missed his 3rd birthday, which he reminded me of lol. So we had another celebration since we were home now. He asked for a puppy cake. I figured why not, I am super mom right? Haha, well I tried.

He loved it and that is all that matters!

A Mother's Wish
I just wish I could shield them both from all of this. I know all of this is to give Jacob life and I know that one day it will just be a memory and I will be watching my boys playing in the backyard together. I know that they will both be grateful for all of this one day. I don't mind not sleeping, eating or the crazy schedule. I just wish I could protect my boys and take it all away for them. I will spend my life fighting for my kids and doing everything I can to make their life amazing. Still, I know how hard it will be for both of them. Aidan doesn't want his mommy to go away but if Jake has to go to the hospital I have no choice. Jake has to spend his early years in hospitals getting poked, operated on and dealing with pain he should never know. He is such an amazing gift from God and I am sick that he has to fight so hard.

True Meaning of Life
Please know how lucky you are to have healthy children and hug them closer tonight. There are families out there like ours who are fighting just to give their child life. And worse they are watching their children fight. I have met so many amazing families through this journey. So many amazing parents who have to watch their children fight. Families who know that they could loose the battle but keep fighting anyway. No one knows how long they will have their children but for us heart mom's it is even more uncertain. It makes you appreciate even the smallest things. When you are a parent of a critically ill child its like time stands still and the world goes on around you. Your heart aches for your child yet you have more hope than you thought was possible. You find courage from depths you did not know you had, and just as you feel you can't do anymore you realize just how strong you are.

Realize that the little things that you take for granted like your kids eating, breathing and their health... these are not a given and don't come so easily for some. Realize that life is too short to not take in every second. Jacob has taught me the true meaning of life. Although I hate that he has had to endure this, I am so blessed to have my eyes opened. I now appreciate life more than most ever will.

Thank you Jacob. My sweet miracle, thank you for giving me such an amazing gift. Thank you Aidan for making me smile every day and for being such an amazing big brother. I am so proud of you both. Thank you to my husband who is there for me even when I am at my lowest. We will make it through and be stronger for it. Thank you to my amazing family who constantly supports me and is there to offer a helping hand when I need it most.

And thank you to all of you who love my son like their own. Your support and prayers mean more to us than you will ever know. We are so blessed!