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!

Some Normalcy in the midst of chaos

May 21st:

Yesterday was really crazy busy. I was up with the kids around 6 or so. Maxim pediatric nurses called to see if they could come out at 10. Right before they were due to arrive Jake had a fit of fussiness because he had been constipated. Aidan pooped his diaper (Still working on the whole potty training thing, got off track with all that has been going on), and the dog was barking.

So here come 3 nurses into our chaos lol. I felt like it was a sitcom. We got through that visit and I got a lot of really useful information about the possibility of having nurses come daily. I have to call my insurance company but for now they are at least coming twice a week for about a half hour to check on Jake and do vitals and such.

Not 5 minutes after they left someone from respiratory therapy called to see if they could come by to show me how to use the oxygen. So no sitting for me had to get ready for the next round. Finally got Jake to sleep and was about to do "School time" with Aidan. We set up for an art project and the phone rang, it was a dietitian called to see how it was going. I was not turned around for maybe 3 minutes and I look over and Aidan had colored all over himself and my wall with marker, luckily it was washable lol. Most parents would be furious but I had to laugh (without him seeing of course) because it was such a wonderfly "Normal" moment.


To finish off the day I got birth to 3 set up to come meet Jacob. They will come to the house and work with him developmentally so he won't fall behind from all of this.

Still managed to get lots of time with both kids and was exhausted by the end of the day. Luckily my amazing husband came home and let me sleep for an hour while he watched the kids.

May 22nd:
Today was another great day at home with my family. Woke up to my sweet Aidan breaking out into song. I felt like I was in a musical lol. Jake had a really good day and has started to smile so much. I can't tell you how good it makes me feel to see him smiling after everything he has been through. Aidan and I were making silly noises at him and he kept grinning ear to ear.

Gave him a bath which he hated and had lots of cuddle time. His belly was so much better today. No constipation, no retching... just happy Jake. Sats and heart rate have been really good. He weighs almost 9 and a half pounds now!

Have I mentioned how glad I am to be home!

Bath time!

Battle Wounds

Our little peanut... so proud!

Home Sweet Home

WE ARE FINALLY HOME!

It has been a long road getting here but so worth it. Like everything with Jacob it was not uneventful lol. Our day started early at CHOP where he had an echo and EKG and then we met with his cardiologist. She said he looked good to go home and we hit the road. By then it was after 1pm. About 4 hours into the trip I got a little worried about Jake. He was ok but his color was a little dusky and he had a bad retching episode. Not horrific by any means but I noticed some yellow in his tube when I vented him and got worried because of what happened to sweet baby Gweneth.

So I decided to call an ambulance to take him to WVU Children's hospital to get checked out just in case. Especially since we were in the middle of nowhere. It took about 45 minutes in the ambulence. I had my own pulse ox machine and told them that his Sats looked good for his anatomy, his heart rate was fine and his color looked good. We got to Ruby Memorial which is right next to WVU Childrens. It was a NIGHTMARE! The ER was so dirty and small and our nurse was horrible. I tried to explain to her that Jake's anatomy was unlike a normal baby so his vitals were a bit different. She ignored me and was training a guy on how to do the job. They refused to let me feed Jake so he was very upset and hungry. The docs said his SATS and heartrate looked good so there was no reason to do an echo or anything and I could feed him (after 2 hours) and we would see if he was ok and go home. So basically they did nothing but he did look good so I was ok with getting him out of there.

The lead for his heart rate had fallen off and the nurse never even came in to see why he showed no heartrate. I then asked her if she had adhesive remover to take the leads off so it would not hurt him. She said yes but then proceded to just rip them off without loosening them with anything. He screamed horribly and I wanted to deck her. I would have at least used warm water or something to make it easier. She walked out without telling us whether we could leave or not. Seriously, and this is the hospital that Dr. Eckerd wanted us to have his surgery at. Are you KIDDING me! I will NEVER go back there.

So I felt silly for doing all of that but with these kids its better safe than sorry so if I feel something is off I have to go with that.

We drove around looking for a hotel. They were all booked, we finally found one and after a long night of stress I set up his overnight feed, gave him his meds and passed out. I was up a lot but Jake continued to do well.

We finished our trip the next day. Boy is it good to be home. The best part was seeing how excited Aidan was about his new baby brother. He kept saying how cute he was. He is so good with him. Best big brother ever.

We unpacked the countless medical supplies and 3 months worth of luggage and enjoyed a great evening as a family.

Jake had a pediatric and a cariologist appt. today. He now weighs 9lbs 4oz! This is great, he was 9lbs 1oz a few days ago. Go Jake Go! I was a little concerned because his testicles were a little swollen which is on the list for heart failure signs and symptoms but the pediatrician and cardiologist both looked at him and said it was not that. They think it may be from being in the carseat so long and traveling. We are keeping a very close eye on it and hopefully it will go away soon. We are going to go to both the ped and the card. weekly for a while. He will be weighed frequently because it is SO important for him to get big for his next surgery. It is essential! Pray for Jake that he continues to do well and that the swelling goes away.

Jake's Sats are perfect for his heart and his heart rate has been great. His color looks good and he has been smiling so much more lately. I love it. I think he really likes being here. It is such an amazing feeling to have my family together again.

Our schedule is pretty hectic. You realize how easy it is to get up with a "normal" baby and give them a bottle and burp them. It is very time consuming to set up feeds, tear them down, vent, give meds, meds and more meds then rinse and repeat! So to all of those moms who are complaining about being tired because their baby wanted a bottle at night, please realize how lucky you are lol. But you know what, I wouldn't change it for anything. Jake is so perfect. I am getting used to my new norm and seriously should have a nursing degree by now. Its crazy how fast you learn this stuff when your child needs it. We have our new "norm" full of monitors, pumps, tubing, and meds but its all going well. Aidan doesn't know any different and loves his brother the same. I would do anything for Jake, with all he has been through... how can I complain?

Although I hate that Jake had to endure all of this, I also feel so blessed that I have met so many amazing kids and families throughout this journey. My eyes have been opened to a whole new world. A world where you stand still and the calendar days fly by as the world goes on around you. A world where there is so much comfort love and support. A world full of people who would do anything for total strangers because they know what it is like to live this life. It makes you focus on the little things on taking in every moment because you don't know how many moments you will get. It makes you feel so blessed for what you do have and cherish it ALL. I truely feel like a better person because of all of this.

Thank you to my heart moms, family, friends and perfect strangers who have been such an uplifting support for our family. Many would look at our situation and feel sad or sorry for us but please do not. We are blessed and we are happy and we are the lucky ones. We have Jake, our miracle who has taught us what it truely means to "Live".

Thank you!

Happy to have both of my boys together!

Follow Up Appt Tomorrow

Jake's followup cardiology appointment is tomorrow. If they give us the all clear then we get to head home. Please pray everything goes well.

Switched completely to formula yesterday and Jake was constipated today. I hope he can poop tomorrow. I know funny the things you hope for when you have kids lol. I hate seeing him in pain even if its just gas. I remember Aidan had trouble with gas at this age.

He cries when his feeds first go in so I think the g-tube is still hurting him. Other than that he has done great. I am going to talk to his doctor tomorrow about the belly issues and hopefully we can head home. It will be a very long trip. We have to stop every two hours to get him out of the carseat.

Please pray all goes well tomorrow and we have a safe trip. I hope to be in my own bed tomorrow! I have not been home since February 26th, Jake is worth every moment!

It will be a long day so please don't worry if I can't update tomorrow night. I will post as soon as I can. Thank you all for the continued support and prayers.

Jake Update

Jacob is doing well. I have been a nervous wreck without nurses lol but hanging in there. I have the meds and feeding down. It is a hectic schedule but getting used to it now.

Jake has been having a lot of gas pain. When he eats he ends up crying by the end of the feed. I am going to talk to them about it on Monday but for now I vent him often. His g-tube spot looks red but they said that the antibiotic he is on is what they would give for it anyway. Again I will show them on Monday at our followup.

I remember Aidan had a hard time with gas also. I just hate seeing him in pain, especially because it can effect his SATS and heartrate when he gets upset.

The first night I did not sleep AT ALL. I was to nervous. Last night I got a full night sleep except when Jake woke up with Gas pain around 2am. He has been awake a lot today so hoping he sleeps well tonight. We had a good day today. Even took him outside for some fresh air. It was nice and felt more like a "normal" life for a while.

Now for news that breaks my heart to write. Please pray for the Carpenter family. They were at CHOP the same time as us. They had their sweet baby girl Gweneth the week before we had Jacob. We grew close to this family and I am so saddened to hear that baby Gweneth passed away today. She lived a short 2 months but touched so many lives. Myers also lost his sister today, two day's after Gwen passed away. Myers and Laura were so sweet to us while we went through this journey together and I will always hold them dear to my heart. Please pray for peace for this family. I am completely heartbroken.

Hearing this news makes me realized how fragile our babies are and how every moment with our children is a blessing from God. These babies fight harder than anyone should have to. They are miracles! I fear for Jake every moment I am awake. I love my sweet baby boy. Please continue to pray for him as he continues on this Journey.

Thank you for your prayers.

Jacob was discharged!

Jacob was discharged today and boy has it been a busy day!

I will post pictures tomorrow but Jacob is doing great and I am so happy! I have been so busy organizing medical equipment, supplies, getting feeds put up and meds organized. There is so much to do but boy is it worth it.

DAILY ROUTINE

MEDICATIONS:
Jacob gets meds at 8am, 4pm and 12am
Aspirin- Mon.,Wed.,Fri. at 8am
Vitamin D- Mon., Wed., Fri. at 8am
Lasix (Diuretic)- Everyday at 8am, 4pm and 12am
Captopril (Blood Pressure)- Everyday at 8am, 4pm and 12am
Diuril (Diuretic)- Everyday at 8am

These meds are only until Saturday:
Clindamycin (antibiotic)- Everyday until Sat. at 8am, 4pm and 12am
Mupirocin ointment (antibiotic ointment)- as needed for skin

FEEDING-
Jake is on gravity feeds at 9am, 12pm, 3pm, and 6pm
at 8pm I put up his night time continuous feed which is done by his pump.

Gravity feeds are done by hanging a suringe up higher than Jake. By gravity it goes down a tube into his g-tube. When done I flush it and that is that. It takes about 20 minutes for it to go in. I have to vent him before and after or he gets fussy and gassy.

For the pump I put a larger amount in the bag and its good until 12am. It goes in very slowly continuously. It runs over a 10 hour period but I have to change it once in the middle so its not sitting out that long. I put fresh milk in at midnight after his meds. The pump dispenses it slowly over that time. I took a class on using the equiptment. Its great because Jake sleeps through the night since he doesnt wake up hungry. I take it down at 6am.

FOOD TYPE
Right now I am transitioning Jake to formula. He is on a 27 calorie diet. Normal formula is 20 calories so I have to do 7 scoops per 10oz of water. I will mix his daily amount in the morning because its good in the fridge for 48 hours.

I am also fortifying the rest of my breastmilk until its used up. To do this I do 3oz of breastmilk and add 2 teaspoons of formula.

He is on Similac Lactose Free formula since Aidan and I are both lactose intolerant.

So for now I am using half breastmilk and half formula. When I run out then he will be just on 27 cal formula so it will be MUCH easier.

VENTING
Jake can't burp so I have to burp him by venting. It is easy, I just attach a empty suringe to his extension tube and any air will come out.

So Busy Busy but enjoying every moment. So nice having Jake wireless!

Please continue to pray for Jake and that everything will go well and he can go back to WV on Monday after his followup appt.

Thank you all and if I don't post for a while it is because I am so busy but I will try to update when I can.

Overwhelmed

I am sorry I have not updated. I am very overwhelmed right now with getting things ready for discharge and figuring out his feeding, meds and appointments. I promise I will update soon. I am hoping to get some more answers tomorrow.

Please don't worry if I don't post right away, a lot going on right now!

The Plan

Talked to the docs, here is the plan:

Jacob will be released on Thursday. We will go to the Ronald McDonald House and stay through the weekend. We will meet with Dr. Swazst on Monday for a follow-up appointment and then we can go home!

There is nothing on the cath that makes them think he is high risk or needs to stay here. Everything looked good. The pulmanary vasculature looked good so the bloodflow to the lungs is good. There was a lot of blood moving through the shunt and the heart is large because of that which is normal for these kids. After his second surgery they remove the shunt and it will shrink back down. So the amount of bloodflow could be the reason for the fast breathing. If so it will get better after the second surgery. The other contributing factors is the restricted septum he had.

Either way the cath was very positive and its good to know that everything is functioning the way it should.

His heart squeeze was a little low, still normal but not as strong as they like. This will also get better after the second surgery but until then he is now on captopril which is a blood pressure medicine. They will watch it the next few days.

I will update more later but thank you for the continued prayers!

Recovering

Jacob is back in his room. Cath went well. Pulmonary vasculature looks good. Flow is good. Shunt and aortic arch look great. Pressures are all good. Squeeze of heart was a little on the lower side of normal so they put him on Captopril for that. They said this is common.

As for the breathing nothing is wrong with the blood flow to the lungs. Could be from the septum or from the size of the shunt. They remove that in the second surgery. Hopefully it will get better as he gets bigger but at least there is nothing wrong with the arteries!

Waiting on Dr. Swazst to decide if he can go home or not. If he does it will be Thursday so they can watch him on this med for a bit.

He is in some pain right now. It is so sad to hear him wimper. They also found that the sticker from one of his leads had burned into his skin. It is so red and sore. They change them daily not sure why this one did that. Maybe it did not get changed. Hydrocortisone for that. My poor little boy.

Thank you all for the prayers.

Update

They could not get the cath to go in through the groin so they had to go through his neck. So far everything looks good. Keep praying please!

Jacob is in the Cath

Jacob just went back for his cath. Please Pray!

Talked to Dr. Rome before he went in. This doctor is amazing at what he does but not the best bedside manor. He called Jake odd lol. I think I prefer the word "Unique" now. He said he should be breathing fine right now and not need oxygen. He said unfortunately these kids have such a complicated physiology that breathing fast can be a sign of many things. Hopefully this cath will give them a clearer picture of what is going on with him.

So please pray all goes well. I will update when I talk to the doctors later. This could take a few hours.

Thank you everyone.

Cath Tomorrow!

Happy Mother's Day!

I got out of the hospital for a short while today. Went to the King of Prussia mall with my mom and my sister and her family. It was nice to get out for a bit but I missed my boys! Today was extra hard on me being apart from Aidan on Mother's Day. It was very hard but I had a good day despite the sadness I felt from missing him.

Jacob's Cath is supposed to be tomorrow morning. No time yet. Praying they don't reschedule him again. Praying he does well. Praying for so much tonight. I am so afraid for him having to go back on the vent again and through yet another procedure.

Not sure which I fear more... Staying here or going home.

I was looking at Jake today watching him work so hard just to breath and a part of me got really scared. I do want to go home, I miss Andy and Aidan. I also want Jacob to be ok and I know he is so fragile. It is up to the doctors but I fear both. I don't want to be here another 3 months but I also am so afraid to go home. I have no problem taking care of him. I do everything for him while I am here. Completely comfortable with the g-tube. I just am afraid of all of the "What if's". It is nice having a full time nurse right there but I guess we will have to leave at somepoint. It will be nice for him to know life outside of the hospital. I can't wait until his second surgery has passed. They are so much stronger after that.

Today's update...

Feeding Issues:
He always gets tacky at that time of day. I promptly told him that he was not aloud to give me trouble on Mother's Day lol. This did not work, he was very worked up because he was hungry. He always gets hungry early but we can't feed him too much or he will get sick. So his sats were in the 90's (they like them to be 75 to 85 for their phisiology) and his heart rate was around 180. We took a walk then he calmed down.

Another issue we have had to deal with is everytime he eats lately he seems to bare down like he is constipated. This causes his heart to brady real quick (low heartrate). Its obvious its because he is bareing down and its really fast and comes right back up. Adults do that to but we don't realize because we are not on monitors. Along with that he is wretching some. Most babies can spit up but Jake has a nissen and can't throw up or burp so he can only wretch (like a dry heave) Horrible to see but its only one or two times and after a feed so we think its from gas. He has only done it this week since he has been on an antibiotic. Wondering if his stomach is more sensitive due to that. So the plan is to vent his g-tube more. It's how we burp him. We attach the extension tube and put a syringe without the plunger on the end. Open the extention and the air will come out. Wierd, just odd. But hoping it works, hate to see him uncomfortable.

Cath:
The heart cath is tomorrow and we should get data on his heart and lung function. It will be nice to know exactly what is going on in there. Heart echo's and xrays give an estimate. This will be actual pressures and information. If there is any narrowing they can fix it while in there. He will need anethesia and a vent so please pray for him. It will be hard to see him go through this but I know he is a fighter and will be ok.

Prayers requested:
1. Pray for Jacob tomorrow and that everything looks good
2. Pray Andy and Aidan get better so if we can go home later this week, we can all be together.
3. Pray for our family that we can get through this time and be happy and at peace even if we have to remain seperated for another few month's
4. Pray that Jacob will be safe if he does come home and for me to have the knowledge to know if something is wrong and be able to keep him safe. I feel like I know him well and I will be ok but these kids are some complex. Pray for God to watch over us.

As always, Thank you for all of the prayers and support.

Heart Moms

I have met so many amazing moms and their kids during our stay here and online through facebook. Today a few of us got together to share stories. I can't express how much their support has helped me. It is a bond that I will cherish for the rest of my life. It was great meeting all of you and your beautiful children!

Had a great day with Jake. Jake is around 8 and a half pounds and I think the time and weight gain is helping with his breathing. I see him all of the time so its harder for me to notice the change but his main cardiologist mentioned his breathing seemed like it was improving. Then Lauren his speech therapist (they work with the kids on feeding) came and also commented that his respiratory rate was much better. Tonight when I called to check on him his night nurse also said he was breathing in the 60's. He has always had a baseline in the 70's. I am afraid to get my hopes up but I am praying this is a trend that will continue to improve.

In wired but good news Jake pooped today lol. He had been constipated and I felt so bad for him because he kept baring down and was not happy. We were going to give him a suppository and then as if he knew and did not want it he pooped.

Feeding:
As I said earlier Lauren came back today to work with Jake with bottle feeding. Although his respiratory rate was better he still works really hard when eating by bottle and wears himself out. Our goal right now is to just be able to feed him once a day for a short period of time. Just enough so he won't forget the taste and the reflex of feeding by mouth. Then once his breathing gets better we can do more.

We got a good pattern and I am not aloud to do it once a day even without them. We let him eat from the bottle for about 2 minutes with small breaks about every 5 swallows. Give him a break for a few minutes then do it again. Then we stop. I know that doesn't sound like much but for him it is. Its the equivelent of climbing a mountain while drinking as you gasp for air. If it were up to him he would chug the bottle but its so hard for him because of his breathing. He has been doing great though!

So another great day with my baby boy!

Cath pushed back to Monday

We were just informed that the cath will now be on Monday. I am frustrated but at the same time I am blessed that Jacob is stable and doesn't NEED to have his cath today.

This cath is to decide whether he is healthy enough to come home or needs to stay here until his Glenn. There is another baby who needs and emergent cath. It will take all day for what they need to do for that baby. Praying for that family.

So although I had hoped to have answers today, I am glad that Jacob is doing well enough to be pushed back as opposed to NEEDING it emergently.

We are getting all paperwork and such done today so if Monday goes well we could leave here within a day or two once he is healed from the cath and won't be stuck with as much paperwork.

Thank you as always for the prayers and support. Hope to have some answers Monday, until then... we wait.

Heart Cath Today

Jacob goes for his heart cath soon. He is second on the schedule so it will be whenever they are done with the first one. Please pray that everything goes well. They will check the pressures in his heart and look at the blood flow to the lungs as well.

Please pray. I will update when I know something!

Jacob and baby Mia update

Heart Friend Baby Mia:
I have been so lucky to have met so many amazing moms on this journey. The support has helped so much while coping with this. One mom that is very dear to me is Jennifer Marrone. We met through facebook while pregnant and in person later on here in Philly. She is from New Orleans and had a set of twins, Madden and Mia. Mia has HLHS like Jacob. For those of you who have been following her story she is doing very well. Her surgery was this morning and it went like textbook. Thank God it went so well. I am asking everyone to please also keep baby Mia and her family in your prayers as they are just beginning this journey.

The Today Show and NBC is doing a documentary about the twins and baby Mia's journey with HLHS. I will let everyone know as soon as I find out when it will air. They even scrubbed in and filmed the surgery. It will be very interesting to see and will be great for HLHS awareness.

Twins Madden (left) and Mia (Right) Marrone

Now on to Jacob! Jake had a pretty good day today.

Here are the highlights:

Feeding:
We tried feeding him by bottle yesterday and again today. Both days he did very well. We have to go very slow because of his fast breathing. He tires very quickly. His feeding therapist says for him its like climbing a mountain while trying to gulp water. It is very hard for him. He gets so excited though and drinks from it so well. I hope we can make it work without putting him at risk because he loves it. Eventually his breathing will slow down and it will be easier. We want him to be able to do it at least a little bit so he doesnt loose that instinct. Even once a day would be good for him so he won't loose that.

Infection:
His incision looks so good today. The redness has faded and its already scabbing over. They did labs again today and his while blood cells are back down which means the infection is gong away. Thank God the antibiotics are working! The infection never went to his blood it was just a superficial skin infection, again thank GOD!

Heart Cath:
Jake is still set to have his heart cath on Friday. They may have to push him back to Monday depending on what else is on the schedule. This is just to explore his heart and get data so its not emergent. If something else comes in which needs to be done first then he may get bumped. Hoping he gets to go Friday because if it looks good then we would be able to start talking about discharge plans on Monday. If its not done until Monday than the earliest would be later that week. As I have said before we will get excited about going home the day they kick us out. Until then things are up to Jake and we have to take it day by day.

Even though this is not a HIGH risk procedure there are still risks. He has to go back on the vent AGAIN, and have anethesia. He also has risk of clotting and they go into the heart so there is always risk of bleeding or rhythem problems. Please, Please keep Jacob in your prayers. I am so nervous but I know we have to do it to make sure we know exactly what is going on. Echo's only give estimates, this will give them actual data to go by. They will be able to make sure there is no narrowing of the shunt, aorta or any of the arteries. They will also get a better look at how his lungs are working. So again we are asking for prayers.


As always thank you so much to everyone who has been fighting along with us and praying for Jacob. And thank you to everyone who has donated toward helping him get well. Our family never imagined we would face something like this and I can't tell you how much we appreciate everything.

Love and Heart Hugs
Kathy, Andy, Aidan and Jacob

The Plan

Talked to Jacob's doctors today. Here is what we found out...

Infection:
Jacob is now on IV antibiotics. They are stronger so the hope is that it will clear up the infection sooner. He can switch to oral antibiotics after a few days if it helps. They think the infection was caused by an abscess in a stitch. He will be on some form of antibiotics for at least 7 to 10 days.

Weight/diet:
Jacob is doing so well that eventually we may have to back off the extra calories he is getting. He is 8 pounds now! For now we will keep his diet the same since he has catching up to do. The g-tube and fortifying worked so well!

They are going to start trying to feed him by bottle again. We can give him a little bit through the bottle before each feed and the rest by the g-tube. We will see if his breathing can tolorate it. Praying it does, he loves the taste!

Going Home:
The doctors are all still concerned about his lung condition and the rapid breathing. They said that they want to do a heart cath before we go home. They are not opposed to us going home but since he has been through so much and since he still is having breathing issues, they want to know that his heart function is good enough to go. With the cath they can measure all of the pressures in his heart and lungs and get a much clearer picture of his situation. It will be sometime next week.

Jacob is a unique case and he has had many setbacks so we want to make sure that once we go home, we wont have to turn right back around. They should also have a better idea of when to do his second surgery after seeing the results from the cath. It should be sometime between 4 and 6 months old.

So we will just have to wait and see... again. I won't be home for mother's day after all.

Please pray that Jacob's infection goes away. And please pray his cath goes well. Even though it is not an OR surgery it is still a difficult procedure that takes 3 to 4 hours. He will need anethesia again which scares me because of what he went through after his last surgery with the medication.

Thank you again for all of the support and prayers. This journey has been more difficult than we ever imagined but we are so blessed to have Jacob and to have so many people praying for us.

Love,
Kathy, Andy, Aidan and Jacob!

Just as I thought...

Infection:
Jacob's incision is most likely infected. I knew 3 days ago it was looking green where the scab was at the top. They were not concerned but kept an eye on it. Yesterday the scab came off and it started draining. Today it looked a little red so they did bloodwork. His blood work came back and showed that his white blood cells were elevated which means it most likely is infected.

Jake was put on oral antibiotics today. Praying they caught it in time. If an infection gets really bad they have to open their chest back up to scrape it out. PRAYING THAT DOESN"T HAPPEN. The good news is that if the doctors decide he can come home, he can go home on these antibiotics.

GETTING ANSWERS...

Hoping we get some answers tomorrow. Jacob's primary cardiologist Dr. Swazst will be back from vacation tomorrow. Everyone has been waiting for her to get back so we can come up with a long term plan tomorrow. Hopefully we will find out whether they think he is strong enough to go home or whether they think he will need to stay until after his second surgery. It seems pretty split. Some doctors act like they think he should go home, others think his breathing is too fast and he should stay.

I am prepared for either decision. I hope we can go home so our family can be together again in one place. However I also want to do what will be best for Jacob. This is all temporary and is to give him a good life. Right now our goal is to keep him alive and his heart in great shape, whatever it takes. Unfortunatly unlike other parents I do have to worry about the fact that my son is incredibly fragile and little things that are not a concern for most people are for us.

It will be nice to have a plan though, to know one way or another.

Regardless of that decision we won't be going anywhere until his cultures come back negative for infection and it starts looking better.

Feeding:
I plan to see if speech can come back tomorrow. It has been over 2 weeks since they have let Jake try a bottle. They are to worried because of his breathing but I also don't wan't him loose that instinct. He loves drinking from a bottle but he gets so excited and he breathes way to fast.

I also plan to ask the nutritionist if we can feed him more often. He did better today but still gets hungry early so I want to see if we could feed him more volume or more often.

Jake and I went on two long walks today around the 6th floor. It is nice not being cooped up in that room.

Aidan got a haircut today.. Thanks Pappy and Mimi! It looks really cute. They also planted flowers outside for Jacob and I. Hopefully we will get to see them soon. I miss everyone so much.

I will update more tomorrow.. until then please keep praying for our sweet baby boy!

Hungry Boy

When I got to the hospital this morning Jacob was looking Tacky... Literally! Jake got so upset that his heart rate was registering as tachycardia. It was in the 180's which is not horrible but not good either. He was so hungry he was eating his hand. He was due for a feed but not past due however for a few days now Jake has been getting hungry about 2 and a half hours after he eats.

Feeding:
The problem is they want to feed him every 3 hours. The dietitian does not want to push his stomach because of the nissen. I think we should spread out his feeds more. It can't be good for him to be getting so hungry that his heart goes crazy. Plus the goal is for him to gain weight. When he gets upset he breathes twice as fast and burns more calories. I think its worse for him to get that upset than it would be for him to spread out his feeds. He has a specialist that takes it all into account so I will talk to her again on Monday.

Good news is he is gaining weight stedily. He is just about back to his birthweight now. GO JAKE!

Other than then him being so upset when I first got there we had a good day. We took a walk around the CICU, and CCU and also went down to the special delivery unit to say hi to Jenn. She had her twins Mia and Madden two days ago. Mia has HLHS like Jacob. Please pray for Mia who will be having her surgery next week.

Praying for good health:
So they are once again talking like we may go home this week. I am afraid to get my hopes up though. It is all up to Dr. Swazst on Monday. She will see if she thinks he is ready.

And of course when they are talking about going home everyone seems to be getting sick. Aidan has a cold and has had a cough. He is at home in WV. He has not coughed today and his cold seems to be going away so I am praying it does. My mom has a sinus infection so she has not been to see the baby in days. I have had some sinus pressure not much but just in case I decided to start antibiotics to. I am so terrified of this baby getting a cold that I do not want to take ANY chances. I have even been wearing a mask around him and I wash my hands like crazy. I know I can't keep him in a bubble but he is so fragile and he has such a hard time breathing I don't want to chance anything.

So even if I am being silly and a neurotic worrier I think this situation grants it. Everyone better get used to it because I am sure it will be even worse once I am home lol. So please pray everyone gets or stays healthy so Jacob can safely go home. And pray, pray, pray that Jacob continues to be healthy and gets stronger so he can go home. Although I am so afraid of not having the nurses and being so far from the hospital I am also anxious for Jake to know life outside of the hospital. I wonder if the fear will ever fade. It seems so overwheming sometimes.

I told Jake today how grateful I am to have been blessed to be his mother. I can't believe they offer the option of termination or compationate care now. Jacob is such a miracle and such an amazing child. I know this life is not what I would have chosen for him and to say it is difficult and scary is an understatement. But I would not change it for the world. When I look at that sweet angelic face I thank God for him and can't imagine my life without him.

Thank you again for all of the continued prayers, we appreciate the support we have received more than you will ever know.

Love the Baker Family