Hanging out with Jake

Just wanted everyone to know that things are good. Nothing new to report. Still working on fattening Jacob up. Still hoping once he starts gaining weight his breathing will get better. His calories were increased to 27kcal formula which is added to my breast milk. He seems to get hungry early due to the increased breathing so we also upped the volume.

His g-tube leaked a little milk this morning so I am waiting on General Surgery to come look at it. Not a big deal though, if anything the balloon in the tube needs more water in it. Nothing surgical.

Other than that we are just hanging out and resting.

As always thank you for the continued support and prayers.

Need to fatten Jacob up!

Jacob had to be put back on his oxygen. Still not on much but he seems to still need a little help every once in a while. He is such a rapid breather that he wears himself out.

So not much new to report. He had a heart echo today and it all looked great. They did an x-ray on his lungs and they seemed the same. Basically we are still fighting the same battle we have been fighting for a while. Jacob needs to gain weight. He was staying around the same weight and even lost a little. He is eating but he breathes so fast that he is burning the calories so he is not able to gain weight. Today they lowered his volume of food but added more calories. He is still getting breast milk but they are adding concentrated formula to it for calories. He was getting 24kcal formula but now they raised it to 27.

The good news is that he is tolerating the food very well. They said for such a little belly he tolerates high volumes of food which is great. He is getting feed with gravity feeds now which is great to. He doesn't need a pump during the day which makes it very easy for us. We just hang a syringe and fill it with milk and hook it up to the g-tube. The food goes in within 20 min or so.

They decided to put him back on continuous feeds just at night to make it easier for us. It takes time to tape up the syringe and get it all hooked up so I would never sleep. This way I can set the pump and just refill it every 4 hours.

Jake is still breathing very fast. All of the doctors think that it is all do to his physiology and due to the restricted septum. His lungs may still be a little under developed so his body is compensating by breathing fast. He is not bothered by it but its making him not gain weight. All of the doctors think he will get better but its going to take time. We have to go at his pace. His body has been through so much and it needs time to heal. They think if we can get him to gain weight then his lungs will get better.

Still no idea when we will be home. The important thing is Jake's heart looks great and he is a very happy baby. He is doing really well. I am getting a great lesson in patience. Jake will let us know when he is ready and until then we just have to wait and try to help him gain weight.

He is so well tempered. He cries on cue when he is hungry. And cries immediately when he has a dirty diaper. Other than that he is happy and so sweet. Everyone tells us how well his is doing developmentally. He makes great eye contact, holds his head up great. I try to keep him out of the hospital bed when I am there. I act as if we would if we were at home. I think that will help a lot in keeping him on track developmentally since its hard spending so much time in the hospital.

I know I did not expect to be in the hospital this long but I am also so grateful that Jacob is doing so well. He has been through so much yet he is so happy. This makes me so happy. I am so grateful to have such wonderful doctors and such an amazing support system. Most of all I am so grateful for Jacob. He has and continues to teach me so much about life and what is important.

Please pray that Jacob starts putting on weight and that his breathing issues start to resolve. I hate seeing him struggle to breath. Its amazing the things we take for granted like breathing and eating.


Thank you as always for all of the support and prayers...

Looking at Mommy. He is such a tiny little peanut.
I am such a lucky mommy.

Great weekend with ALL of my boys!

Guess who came for a visit!

I am very sorry that I have not posted in a few days. My husband and his mother brought Aidan to come see me! My husband worked all day then drove the 9 hours to come visit and it was just what I needed. It was so great to see them again. I can't believe it had been almost 3 weeks since they had left. I have been told that some people have been worried so I just want everyone to know that no news is good news! Jacob is doing great. I took a break from technology to spend the weekend with my family!

The last time Andy had seen Jacob he still had his vent, 3 iv's and tons of wires. He was not even able to hold him except right before surgery. It was great seeing him hold Jacob and bond with him. He could not believe how different and how good Jacob looked. We both laughed as we dipped his binki in the breast milk and let him drink it. Jacob would suck his lips and make a fishy face. It was so adorable.

It was decided also that I had spent way to much time at the hospital and after 5 weeks I needed a break. So we took Aidan to the zoo on Saturday. The weather was perfect. It was so great to enjoy the day with my family and get out of the hospital for a while, although I did miss Jacob.

Aidan excited about the tiger!

Aidan and Daddy feeding birds.

Aidan and Mommy riding Sam the horse!

I realized that Jacob is mommies boy. When Andy would hold him, he would look around to find me and just stare at me like "Why aren't you holding me?". It is nice to know that he knows me now and I am not just another person to him. He will get like that with daddy too. I am so glad Andy was able to hold him so Jake could start to get to know him.

Aidan was so cute with the baby. He kept talking about how cute and little he was. One time when Jacob was crying, Aidan said "Mommy I will make him stop crying"... He sang "You are my sunshing" to him. When Jacob continued to cry he said "Abracadabra... stop crying". As if on cue Jacob stopped crying. Aidan was so pleased with himself. He hugged him and told him he loved him. It was so nice to see him get to interact with Jake.

Jacob is doing great. He is off of his oxygen. He is still breathing to fast so they are watching that. He is not having many brady episodes. He may drop to 80 or 90 for a second but right back up and that is maybe once a day. It is not a concern at all. His SATs are great (oxygen level). He continues to slowly put on weight, He is still lower than his birth weight but we are getting there.

So again, sorry to everyone who was anxiously awaiting an update. Praying we can go home soon. Not sure when yet but I will let everyone know when we hear something. I know it will not be this week. His cardiologist is on vacation so I don't expect to hear anything until next Monday.

Until then I will try to be better at getting updates on here but please don't worry if I miss a day or two. Like I said, No news is GOOD news!

As always thank your for all of the prayers and support!

Love,
Kathy, Andy, Aidan and Jacob and my mom

More Pictures!

Holding Daddy's Hand

My favorite boys!

Our Family!

Aidan with fruit juice all over his face. Wonder if any got into the belly?

Back in the CCU

Jacob was moved back to the CCU today and we got our old room! It is a private room and really nice. Its so great to be in a quiet room to ourselves again. He has done so much better since off morphine. He was almost back to his "young" self today. He did need a blood transfusion because his numbers were a little low. Not bad just a little lower than they wanted. Hypoplasts need a little extra blood to compensate for the lower oxygen levels. Other than that we had a pretty good day.

They are going to keep him for at least another week or two to make sure his numbers stay good. They said his aorta looks good now and they are not worried about that. He does have some extra tissue around his pulmenary arteries so they are watching to make sure that doesnt become a problem. Right now it is fine but if it becomes an issue later on it would be another surgery so pray it doesnt.

I had my G-tube training today and was able to start learning to feed him and give medicines through his tube. He is eating again and they are weening his oxygen. I am going back tonight to sleep there.

My dad said he needs to see pictures because I haven't posted for a while so here are a few to look at! Give me a break dad it was a rough couple of days lol. I know why you guys come here, the pictures hehe!

Enjoy!

Bathtime! He still had his NG tube in this pic. So glad that is gone now.

Snuggle time with mommy!

Emotional Day

Today was emotionally draining to say the least. I slept at the hospital last night or tried to. I was so upset it was hard to sleep at all. I went to see Jacob when I woke up and was furious to see that his nurse was sick and had been trowing up. She left shortly after but was there for 3 hours. My baby just had a major surgery on his stomach and has fought the whole 4 weeks of his life and she came in sick. I wanted to scream. I know people get sick but when you work on sick babies you should not chance it at all.

Then Jacob started having episodes of going Brady again. This time they were very quick dips in his heart rate, nothing like he had the night before. No coding. One time he dipped into the 60's and they had to shake him out of it. That one was closer to what happened before but we think he was still breathing.

Everytime I heard the Brady alarm on the monitor my heart jumped into my throat and I would get choked up. I was so traumatised by the night before I could not even look at the monitor. I was just scared to death. I made a rule that I would not cry in front of Jacob. For 4 weeks I have held it together but watching him code yesterday just affected me so much. Today I couldn't seem to stop crying. I think I needed that though. I could not hold it in forever. I love Jacob so much and can't express how scary it was to see his heart rate plummet like it did. No parent should have to see that.

I spoke with the doctors and they thought it was all from sedation. I told them I did not want him having ANY more morphine. His last dose was 10am. Last Brady episode was at 1:30pm.

Around 5pm. Jacob finally started waking up and becoming alert. It was so great to see him start looking around. I finally got to hold him again and he was able to start his feeds again. It was so good to see him looking better and awake.

Thank you all for the prayers. I am amazed by the people who follow Jacob's progress and who are routing for him.

I made myself leave the hospital tonight. I had not left in days and since he was stable I decided it was time to get a good nights sleep and take the night off. So I will be back in the morning.

Praying Jacob has a peaceful night.

A SOUND I NEVER WANT TO HEAR AGAIN

Jacob was having trouble with pain. He was breathing even heavier than normal and we all thought it was from the pain so they decided to give him another dose of morphine. It was still well within a reasonable amount for him and it was an hour after the initial dose. A little while later Jacob's alarm started beaping and I realized his heart rate had dropped. This is called "brady". He has done this before but it has always gone back up so I didn't worry until it continued to drop. The nurse came in and tried to wake him but he was unresponsive. He was not breathing. Then the fellows came running. By then he had dropped to 52. A normal heartrate is around 130.

They sounded an alarm which I never ever want to hear again. Jacob was in respiratory and cardiac arrest. His body just stopped. The fellows bagged him and got him back within 30 seconds. By then the whole floor had come to his room. There must have been at least 30 people. By then I had turned to the window and was praying. I could not look because I was to afraid that this was the moment I have been dreading.

Other parents have told me how horrifying that sound was and I knew Jacob had done this the day he was born but nothing can prepare you for seeing your child's body just stop working.

Thank GOD the doctors reacted the way they did.

Basically, Jacob had tired himself out by breathing hard and when we gave him the extra dose of morphine his body just forgot how to breath. Unfortunatly it is a fine balance for these kids. One dose may not have been enough but two was just way too much. SO, Jacob is NOT aloud to have 2 doses anymore. Thank God he is ok. I am still somewhat in shock, that moment was so surreal. I really felt like I was watching a movie.

So now Jacob is back in the CICU where he can be monitored more closely. If he does well then we will move back to the CCU tomorrow and will be back on track for going home.

PLEASE pray that the rest of the night is much quieter. My little guy obviously needed some attention and I think he got enough to last a lifetime. 2 times coding in 4 weeks is just way to close for my comfort. I don't think I will be sleeping tonight. Thank goodness McDonalds gives Free coffee to parents staying here.

I will update tomorrow but for now I am going to go be with my baby boy.

Jacob is Recovering

Jacob is doing well. He did so well that he did not have to go to the Cardiac Intensive Care Unit. He was able to go back to the step down unit. He has been in some pain but it is being managed and he is sleeping right now.

They were able to give him the mini mickey button like we were hoping for instead of a long tube that would have to be changed out in a month. He woke up crying and one of the lyposcopic incisions bleed a little but it is ok now.

Jake can't eat for 24 hours. After that we will start his feeds slowly beginning with 1/3rd of his normal amount. He will get it continuously at first and then each day he will get more until he is built up to his goal amount. He will eventually go to bollis feeds which means that he will get larger amounts in a shorter time span and then a few hours off. Like a normal baby feeds.

They said that we should be able to go home in about a week however until they kick us out I am not getting my hopes up.

Please keep praying for Jacob, he is in a lot of pain. Praying for a quick recovery.

Thank you all from the bottom of our hearts!
Kathy, Andy, Aidan and Jacob

Jacob is in surgery

Please pray that surgery goes smoothly and Jacob recovers quickly. I will update when I can.

Surgery is tomorrow

G-tube placement and Nissen surgery will be tomorrow. Not sure what time but I will post when he goes. Please pray everything goes smoothly and Jacob has a quick recovery. Recovery will be at least 5 days. Hopefully we can be home after that.

I know Jacob will be ok and I know this is not as major as open heart surgery, however surgery is always risky especially for heart kids.

Please pray for our baby boy!

Blissful night with Jacob

I spent the night at the hospital again last night. The past few days in the CCU have been so great for Jacob and I to bond. I try to keep him out of that hospital bed so we try to act like we would if we were home. I walk him, put him in the bouncer, play with him. Last night we spent the evening cuddled up on the couch watching the country music awards.

He stared at me for over two hours as if he was studying my face. When he gets upset I hold him and he calms down almost immediately. It really warms my heart. Can't wait until we are wire free but for now this is our normal.

Looks like surgery will be tomorrow or Wednesday. I will update everyone when I know something. Until then I will be hanging out with my boy in the hospital. Oh and Jake is off of the oxygen again. His SATs have been good so far so keep your fingers crossed.

We miss Andy and Aidan terribly and can't wait until we are all home together. Please pray for Jacob to recover quickly from this surgery so that we can go home.

Thank you everyone for all of the amazing love and support you have shown us. It means more than I can ever express in words!

Surgery Again

Well it was not the result we were hoping for but Jacob has to have a g-tube put in.

G-Tube and Nissen Procedure:

Jake has so much reflux that it is causing his vocal cords to be red and inflamed but more than that they are afraid that it is going to cause him to aspirate and that could cause serious harm to his lungs. His lungs are already not normal. When he was born they were under developed and they were flooded with fluid after his atrial septal defect became intact. The doctors all feel that it would be way to dangerous to send him home on an ng tube. If he aspirates his food into his lungs it can cause pneumonia. With his lungs already in a weakened state that could be fatal.

He is already maxed out on reflux meds so the best thing for him is to have the nissen procedure and the g-tube.

The Nissen procedure is an operation to sew the top of the stomach (fundus) around the esophagus; used to stop stomach contents from flowing back into the esophagus.

This prevents the acid from going up the esophagus. It also makes it so Jake can not throw up. The hope is that it will stop the stomach acid and it will prevent him from any aspiration.

So although this was not our ideal situation we know that it is the best thing for Jacob. He can still take bottles a little bit so that he won't loose that instinct. Once he gets older he can still have baby food or any food by mouth. The tube will be removed in a few years once he no longer needs it.

The main goal right now is to get Jake to gain weight so he is ready for his second surgery. This will help us get him there.

It is surgery so he will have to go back on the vent for the surgery and back to the cicu afterwards. We should find out when they will do the surgery on Monday. Please pray for Jacob. Pray he tolerates this operation and is able to get off of the vent quickly.

Because he needs this operation we will be here at least another 2 weeks.

Oxygen:
Jacob is also back on oxygen for now. He was deSATing which means his oxygen was dropping. They checked his heart and everything is fine, the shunt is clear and also in good news his aorta looked good. So the heart looks great, yay! They said the deSATing could be from the acid as well. The oxygen was dipping into the 60's which none of us were comfortable with so for now he is back on oxygen and his oxygen has been hanging out in the 80s which is much much better.

So today we took a bit of a step backwards but as all heart mom's know it is a rollercoaster. Jacob will direct this movie and we are going at the pace he needs us to.

Hopefully we will all be home together soon. Andy is taking care of Aidan back home but I miss them terribly. Hopefully we will all be together soon.

Thank you all for the continued support.
Please pray for Jacob and his upcoming surgery.

Long day of testing

Today was a very very long day full of testing. Let's break it down...

Hearing test: Passed!

Heart Echo:
They checked his aorta again and their was no coarctation of the arch. That means that there was no more narrowing and he had good flow so they want our cardiologist to keep an eye on it but for now it looks good!

Diaphragm Study: To see if his diaphragm was damaged and causing the breathing issues.
How it is done:
Jacob had to lay on a table and they brought an xray machine over him and took pictures of his diaphragm moving. Jacob hated this. They needed him to cry and boy did he. I was squirming because I wanted to pick him up so bad but they needed to make sure that his diaphragm was not damaged during surgery.
Results:
Still waiting on the results but the cardiologist had told me the xray he had seen looked fine and they think the breathing is from the fact that he had a restricted atrial septum not due to the diaphragm. They did say that they saw his vocal cords were swollen and irritated and they were not closing all the way. They are not paralyzed but the acid could be the cause of the irritation.

Swallow Study: Purpose was to check for aspiration into the lungs
How it is done:
For this Jacob had to drink barium from a bottle and they watched via x-ray as the milk went down so they could see if he was aspirating into his lungs. It was really cool to watch. I could see his skeleton and watch him suck the milk and it go into his belly. He loved it and chugged the bottle. He was starving since they had not fed him for hours so he would probably have drank anything at that point.
Results:
No aspiration! But he has some acid reflux.

Milk Study: Purpose is to check for acid reflux
How it is done:
They mixed something in his breast milk that let them get an image of the milk in his belly. Gave him 60 ml's in 10 minutes. That is about 2 oz. Jake usually gets that much over an hour so I was afraid he would hurl but he did great. Actually it gave him a "full" feeling and he sleept the whole time... like a baby! His nurse said babies usually cry the whole time and she has never seen a baby do so good.
Results:
He does have mid to high level reflux. This could be the cause of the vocal cord irritation.

They have now scheduled a saliva study which also can check the relux.

The Next Step:
A team of doctors will get together and discuss all of the test results. They will see if they recommend sending us home with the ng feeding tube or having him go through surgery and get the g-tube.

It really depends on whether they think the reflux is bad enough. When they do the g-tube they also tie a band around the stomach and esophagus (don't quote me on that). The surgery makes it so that they can not reflux. If his acid reflux is causing the damage to the vocal cords we need to consider the g-tube to prevent perm. damage. If they don't think its causing the damage then he may be able to go home on the ng tube.

Either way he needs one of the tubes. He LOVES the bottle and takes it very well. The problem is that after about 15mls he is just too exhausted. He breathes so fast so when he is breathing he is working to hard and burning to many calories. The goal right now is to get him to gain weight for the second surgery. So we can give him some of a bottle but the rest has to go in by tube. I really don't want Jake to have to endure another surgery and am fighting for the ng tube. That being said, if it is safer for him to have a g-tube then we need to do that. The doctors will give us their opinion and we will go from there. I just want to make sure we try everything first. He is maxed out on reflux medicine so it all depends on these results.

Good news of the day:
We got a private room! Its a nice big room just for Jake. I can sleep there if I want too. Much better digs, although I still hope to be home soon.

Going home:
If he goes home on the ng tube we may be home early next week. If he needs a g-tube then he will have at least 5 more days recovery after the surgery.

So yet another exhausting day but Jacob took it like a champ. I swear I am more and more amazed by this little guy. I can't wait until we are home and away from all of the tests, needles, and wires. He deserves some peace after all of this. I am grateful for the fact that he won't remember all of this. Although its hard for me to watch him endure so much, I know that it is all to give him the best possible life.

I am so proud of you Jacob. I love you so much and will always be by your side.

Love you,
Mommy

Please continue to pray for Jacob and all of his heart friends who continue to amaze us daily by their never ending strength.

Life is a Rollercoaster

The life of a heart mom is such a roller coaster. I was warned of this but did not realize how true it is. So much has happened in the past two days so be warned this is LONG!

Let's start with the good!

Yesterday was amazing! Jacob was moved to the step down unit at 7a.m. The Cardiac Care Unit (CCU) is one step closer to home. The day was full of doctors and specialists coming in and out so it went by fast but it was very exciting. Let me break down the day.

Oxygen:
Jacob ripped off his oxygen in the morning and has been fine without it. My boy knew it was time for that to go.

Feeding:
Jacob loved the bottle. He sucked and swallowed like a champ. Unfortunately they made him stop after 15cc's because he was working to hard. Jake is a heavy breather, unfortunatly when he is feeding he has to work harder because of the breathing. It is like trying to climb a mountain while drinking out of a cup.

What this means for Jake: If he is working to hard to eat then he is burning calories and wearing himself out. This is dangerous because he won't gain weight, he is burning it all off.

The next step: They are going to do a swallow study to make sure he is not asperating. Asperating means the milk is going into his lungs. This is dangerous so the first step is to make sure that is not happening. If it is then we can try thickening his food. If that doesn't work then he may have to come home on the ng tube or have a g-tube. The g-tube has to be put in surgically so I really don't want him to have that unless absolutely necessary. It is basically a little button in his belly that we would feed him through. He loves the bottle so I really hope he can learn to feed without working to hard so he won't need an additonal surgery.

Vocal Cords:
ENT came to see Jacob yesterday and we had great news! His vocal cords are not paralyzed!!!!! This is great because that was the main risk factor for apsirating. Plus it means there is no permenant damage and his voice will come back. He is just hoarse from the vent.

The best part of yesterday was when the doctor said he thought we should be able to go home by early next week! My mom and I also went through Infant CPR training. I hope to never have to use it but its good to know.



Now for today...

Jacob is still doing well however today was very frustrating and overwhelming.

Feeding:
Jacob took the bottle like a champ today. I was so proud at how he loved it. But again he was breathing too fast so there is still a concern of safety. His swallow study is scheduled for 11am tomorrow morning.

Breathing:
They will also do an xray of Jake's diaphram tomorrow to make sure that it was not damaged in the surgery. If it was then during his second heart operation they would also repair that. This is frustrating because every doctor/nurse that comes in talks about how he breathes to fast and wants to find out why. Every cardiologist that comes in says oh that is because he had a restricted atrial septum and although not great, is normal and will eventually get better. So they are doing the test but most likely it will come back normal and they will say "It is just how he breathes". Again, can we say rollercoaster... getting dizzy yet?

Genetics:
Genetics came and they are going to run more tests to make sure there are no other chromosomal issues. They don't think there are but since he has an ear tag (small piece of skin on his ear that they will remove during next surgery) and the heart condition, they want to make sure. We had an amnio and it was ok so I am not as concerned. They are very thourough here and I pray that everything turns out fine. The doctor said not to worry but of course its me we are talking about. I will worry until I know for sure. Please Pray.

The Big Worry of the Day:
Jake's cardiologist came to see me today and said that they saw some scar tissue build up in his aorta. This is a risk of the surgery since they construct this new aorta. Anyway the scar tissue causes narrowing of the aorta and this can be extremely dangerous. Jacob is showing signs that this may be happenig. The problem is that they can't go in to fix it until 6 weeks after surgery. Basically they would go in by cath and use a balloon to dialate and open it back up.

What this means:
She said we could still go home next week but she wants to make sure the cardiologist monitors this very closely because it is easily missed. If they don't catch it, Jake could get very sick very fast and it could be a life or death situation. I was nervous enough taking him home but this puts him at an even higher risk. There is nothing we can do but monitor it right now. He may have to come back in a month for the cath lab procedure. The good news is we are aware of it so they can watch it and if it gets worse we can get him help. Signs I have to look for at home are eating changes, vomiting, extra irritable. Basically anything out of the ordinary and I need to have him checked out. I hope the doc's are ready for one annoying mom who brings their baby in all of the time lol.

SUMMARY
I am emotionally drained. It is so difficult to watch your baby go through so much and not be able to protect them from it. Excited to come home. Nervous about all of the what if's. Praying Jacob continues to do well and God continues to look out for him.

Prayer Requests:
1. Please pray Jacob's aorta does not get worse and he doesn't need yet another procedure.
2. Pray the swallow study/diaphram study goes well
3. Pray he doesn't have any other genetic issues
4. Pray he learns to take the bottle without wearing himself out

I can not thank everyone enough for all of the love and support we have recieved and for all of the prayers you have sent up. Our baby boy is so sweet and such an amazing fighter. I pray he can be home soon and live a more "Normal" life without monitors and needles. Thank you again from the bottom of our hearts.

Moving to the CCU!

STEP DOWN HERE WE COME!

Jacob is 3 weeks old today. We are celebrating big by moving to the CCU. They said he is doing great and no longer needs to be in the intensive care unit so tomorrow is the big day! Once he is there I will be staying at the hospital with him and sleeping there. The CCU or Cardiac Care Unit is where you have your own room and you basically take care of the baby. The nurse checks vitals and is there if you need her but its mainly all you... No pressure!

They took Jacob off of Digoxin (a heart med to regulate pumping) and the heart rhythem issues stopped. His breathing is a little fast but not abnormal for a hypoplast and they are not worried. He is on barely any oxygen but they are not taking him off until they get the feeding more advanced.

Feeding:
Speech came today and tried a bottle. Jacob did not do well with that. Kids who were not fed prior to surgery tend to have a harder time. But he has only tried once so I am not counting him out yet. They told me to start dipping his binki in breast milk and giving it to him to get him used to the taste. He seemed to like that a lot. The longer a baby goes without a bottle the more they loose that instinct so its really hard for these kids to learn to swallow.

Please pray that he learns otherwise he would need a g-tube. The main goal is for him to gain weight so he is big enough for the next surgery so we need to make sure he gets the milk even if its through a tube in his belly (gtube). However it is another surgery so I don't want him to go through that if he does not need it. The doctors say we are not near that point yet so pray he catches on.

Physical Therapy:
Physical Therapy came by and he is right where he should be developmentally. He did great! They also showed me all kinds of exercises to do with him and ways of holding him which was great for me to be able to bond with him.

We had a great day!
As always thank you for all of the prayers!

Jacob we are so proud of you and your amazing progress.
Love,
Mommy, Daddy and Aidan

Meds and Feeding

Jacob has been breathing very fast at times. The doctors don't seem to be to concerned. He has done this off and on since coming off of the vent so it seems to be just the way he breathes, not attributed to the feeds. They decided to try putting him on another diuretic to see if that helps.

They are still keeping his oxygen the same so we can get the feeding down. He is barely on any at all so its not a big deal but we don't want to push him to hard.

Medications Jacob is on and may go home on:
• 2 diuretics (these make him pee more to help relieve fluid from the lungs)
• aspirin (This is to keep his blood thin so it won't clot in the shunt)
• one heart med (This helps regulate the pumping of the heart)
• reflux medicine. (This is for acid reflux, almost all hypoplasts are on one)

Sounds like a lot for a baby but its common with Hypoplast babies to be on all of this at first.

Pushing ahead:
They are still pushing ahead with Jacob's feeding plan since he seems to still be tolerating it well. Right now he gets the breast milk over a period of 2 hours with 1 hour off. Tomorrow they should move to giving it all in one hour with two hours off. They are trying to get him on a more "normal" schedule. After he gets all of that down then we can try a bottle.
Fortifying the milk:
They are fortifying his formula right now with some added calories. He is still getting mostly breast milk. There is just a little condensed formula being added to help fatten him up. I told them to use lactose free to be safe because Aidan has always had to be on soy or lactose free. Thought better safe than sorry. He already has enough to worry about.

Possible Vocal Cord Paralysis:
CHOP has mentioned that a group called "Speech" will be coming down to experiment with a bottle soon but we have not seen them yet. Thinking it may be tomorrow. There is some concern because Jacob still has a weak cry. I notice him getting a little louder each day but its still weak. This may be a sign that he has vocal cord paralysis. They will eventually heal however for now it could mean feeding problems. If they are paralyzed then when he tries to take a bottle he could asperate the milk into his lungs. This would be bad. If it is only mild we could work on just feeding him in certain positions. If its more severe he would need a g-tube. A g-tube is a little button they would surgically put in his belly and we would have to feed him through that. That would be an additional surgery though.

Asking for prayers:
1. Please pray Jacob's vocal cords heal or are not damaged to badly
2. Please pray his breathing evens out.
3. Pray Jacob continues to do well so that our family can all be home together soon.

Look who is dressed!

Jacob finally got to wear clothes today!

It is the little things in life that make us so happy. I got to bath Jacob tonight, dress him, change diapers. It was almost like life was somewhat normal. Although bathing and changing him with the monitor wires was a bit tricky.

The Scary Stuff:
Jacob still does not have much sound when he cries. He has a whine but when he cries really hard its just a raspy sound. His vocal cords may have been damaged by the vent or during surgery. They said that this usually heals on its own it just takes time. It is scary though because when he cries really hard he turns blue (This is completely normal for hypoplasts). Its not a problem here when he is attached to monitors but at home I need to know when he cries so I can calm him down. Babies will cry but you don't want them to cry for a long period of time due to the low oxygen levels. So although it sounds funny to say, I hope he can cry LOUD before we go home.

Seeing Jacob turn blue is scary but I am learning what his base color is and what he looks like when he is upset and when to worry. Luckily he is pretty easy to calm down. I am also learning tricks like you can puff a breath of air on their face and that triggers them to take a deep breath. I am sure this will all become second nature to me one day but for now it's all pretty scary. I am trying not to listen to the monitors but to look at him because at home I won't have the monitors. Mainly I need to just know that if his sleep, eating or any other behavior changes then I need to have him checked out.

I think I won't sleep until after his Glenn (second surgery) lol.

Medical update:
Jacob is on room air and should be off oxygen completely by morning. The only thing left to tackle is learning to drink from a bottle.

Feeding:
He was getting continuous feeds. This is where they would give him a certain amount of breast milk over a 4 hour period. Today they switched to bollis feeds. This is where they give him more volume and do it over a 2 hour period, then an hour off. Next they will give it to him all in an hour with two hours off. This gets them more on a normal feeding schedule. When he switches to bottles he has to take it all in 20 minutes. Anymore than that would be too much of a workout for his heart and he would burn to many calories trying to eat. They still have not tried a bottle but should by tomorrow. Learning to suck, swallow and breath all at once may be difficult so pray that Jacob does well with this last hurdle we face before we can go home.

Now for what you came here for... PICTURES!

Wide awake after a bath from mommy!

Doesn't he look so cute in clothes!

Hanging out with Mommy!

Grandma holding Jacob for the first time.

As always, thank you all for the continued prayers. We are so blessed to have so many people love our son and praying for him. God continues to hear the prayers and for that we are so blessed. Thank you all!

Happy Birthday Aidan

Aidan turned 3 years old today, I can't believe he is 3 already! I am not able to be there with him but we will celebrate again once I get home. He is with his Daddy, Nana, Aunt Crystal and cousins. Happy Birthday my sweet baby boy. Mommy loves you so much!

It has also been a week since Jacob's surgery. He is still doing very well. They are weening him off of the oxygen. It keeps falling out of his nose and he doesnt seem to mind at all. His Oxygen levels remain good. This is a very good thing. He is off all IV meds now and gets everything orally. He is just about ready to move to the step down unit. They are also going to start giving him bottles tomorrow so we can work on getting the feeding tube out.

I can hold him whenever I want now which I love! Here are some pictures of me holding him yesterday. It was second time I have ever held him and boy did it feel good.

We also got to meet Kenny yesterday. He is a 21 year old HLHS Survivor. It was so great getting to meet him and his family. He was one of the first to ever have these surgeries and his mother was told there was only a 10% chance of survival. Now it is 93%, we have come a long way. I know how scary it is for me so I can't imagine what she must of felt. I have so much respect for her and what she went through. If it were not for mother's like her, Jacob wouldn't have had this chance. Thank you Kenny for coming to meet Jacob.

As always thank you for all of the prayers and support.

Enjoy the pictures!

Mommy and Jacob

Rockin out

Wide Awake

Checking Mommy Out

Sleepy Jacob

Kenny (21 Year old HLHS Survivor)
Jacob (2 week old HLHS Survivor)

Off of CPAP!

Jacob is off of the CPAP already! CPAP is continuous pressure, the oxygen is pressurized. He now is only on a small nasal canula. This is oxygen but he is doing it all on his own!!!! So far so good. He also has started back on the breast milk and he may be taken off of Heperin today which is the last continuous med that he has been on.

Everyday is like Christmas for me. I am constantly amazed by our little guy.

Words can't express how happy I am right now. I know that we still have a long road ahead but he is such an amazing fighter. It is amazing how far we have come in 2 weeks.

and...

my other little guy turns 3 years old tomorrow! I can't believe how fast time goes by. I won't be able to be there on his birthday but we will be together soon, I can feel it.

I love my family so much!

Off the vent and doing great!

First of all, thank you everyone for all of the support. I am constantly amazed by the amount of people praying for baby Jacob.

After talking with my OB here we concluded my problems are probably from all of the stress. My stomach has just been in knots. A normal birth is hard enough with hormones and all. I had a c-section, tubal, no time too recover and a baby in critical condition and I am pumping milk every few hours. I think my body just had enough. She said it doesn't sound viral at all and that I NEED to see my baby. I couldn't agree more.

So... I spent all day with my baby boy. Andy and Aidan had to leave today. It was so hard to see them go but I am just focused on getting Jacob well so we can all be together again under one roof. After seeing them off I went to the hospital and Jacob looked so great!

Big News... He was off the vent! He has CPAP which is just oxygen that is just at the tip of his nose. This will help him until he is fully ready to do it on his own. He also had his RA lines (Central lines that go to the heart) taken out because he is of ALL HEART MEDS! He is now just on Heperin (Aspirin), and occasionaly on Lasix for fluid. He is still getting some nutritional fluid through IV. His feeds were up to 13cc's an hour but they stopped them for now until they are sure he won't need the vent put back in.

Here is my cutie pie off the vent!


If he can stay off of the vent I may even be able to start holding him again tomorrow! Jacob continues to constantly amaze me with his strength and resilience. I am such a proud mommy. And I can't leave Aidan out, I am so proud of him. He has been such a great big brother. Yesterday he sang "You are my sunshine" to Jacob about 10 times before he said good-bye. He loves his little brother already. He doesn't even notice or ask about the wires/machines. I am in awe of my children.

Praying Jacob can stay off of the vent.

We love you Jacob and are so so proud of you!
Love,
Mommy, Daddy, and your big brother Aidan

Missing my baby boy

I have not been to see Jacob since Saturday. His daddy and grandma have been there but I miss him more than anything. I have been having stomach issues and have been staying away just to be safe. He has more than enough to deal with right now.

However, I really am beginning to think its not viral. I have not felt right since the c-section. I had a tubal as well and wonder if that has anything to do with it. The pumping milk is draining me as well but I really want him to have the breast milk. I just feel like my body hates me right now. I am going to call the midwives again and see what they think. I don't want to stay away from my baby boy if I don't have to. I have been crying everyday. I just miss him so much.

Aidan and Andy are also leaving tomorrow. I can't wait until the day when our family can all be under one roof.

On a positive note...

Jacob is continuing to do so well. He is off all heart meds. His is doing well with weening off of the vent. He is still tolerating the breastmilk. So proud.

Post-Op Pictures

One of the things that helped me to prepare for Jacob's surgery was seeing other photo's of other kids who went through the same thing. I wanted to be able to do the same for other mother's who are preparing for this journey. Jacob actually looked much better than I had imagined he would post surgery, however these photo's may still be hard for some to see.

WARNING: These images are graphic so please do not click on this link if you do not want to see them. Also, this is very personal to our family. These images are for the purpose of educating and helping other parents ONLY!

Click here to view Jacob's Post-Op photo's

Lovin the milk

Jacob is doing really well with tolerating breast milk. He started with 2cc's an hour yesterday to see how his belly would do since it had not had it yet. Today he is up to 6cc's and still doing great. I know it will be a challenge to teach him to drink from a bottle but I am so happy that he is getting the milk now.

They are still tweaking the vent. It will take a little while to get him off of it. They have to take it slow because of his lung issues he has had. They need to make sure they are ready.

He is doing so well. I am so proud of him.

Happy Easter

Jacob is doing so well, we are so proud of our little boy.

We had a big day yesterday. They took out the belly lines, his chest tube and his pacing wires. They never had to use the pacing wires luckily but they are there in case. So all of that is gone. They also stopped his dopamine, one of his heart medications.

They finally started him on breast milk and he is tolerating it very well. He is only getting 2cc's an hour and they are increasing it each day. Once he gets to 30cc's then I can start trying to give him a bottle. He wasn't able to get any milk for almost 2 weeks so I am very glad he is tolerating it so well. They are still doing IV nutrition as well until we get the feeds up.

They are slowly weening him off the vent. Because of his pre-op lung issues this will take longer than normal. They don't want to push his lungs. It may take at least a week. Pray he doesn't have any long term lung issues. They said his lungs still had a little fluid but not that bad. They said we will just have to see how he does coming off of the vent.

Overall he is doing very very well recovering from the Norwood operation. His stats are all very good and they are very happy with how he is progressing.

Happy Easter!

A Good Night

Jacob made it through the night and did very well. He now is past 2 major hurdles, the surgery itself and the first 12 hours. The first 24 to 48 hours are critical though so please continue the prayers.

They will be closing his chest at 11am today.

I am so proud of my little guy. He looks great!

We saw Jacob

We just saw Jacob and he looks great. They were very happy about how everything went. They said he is peeing a lot already and they said that was a very good sign. They left his chest open because of the lung issues he has had but said there was no swelling or bleeding so they will close it tomorrow. He will be on the paralytic until they close the chest. He was not swollen at all, I was very surprised at how well he looked.

Thank you all for the prayers and support. The next 24 to 48 hours are critical.

We love you Jacob!

Surgery is over

They are closing up right now. Everything went smoothly. We are waiting to talk to Dr. Spray to get more details. I will post after we talk to him.

Thank you for all of the prayers!

Update... and pictures of us holding Jacob!

Jacob is on bypass and doing well. I thought I would share some pictures of us getting to hold our baby boy for the first time. Aidan met his baby brother this morning too. He was not phased by the machines, he told him he loved him and then wanted to go back to play his computer game lol. Thank you for all of the support and please continue to keep our baby boy in your prayers!

Enjoy the pictures!

Mommy holding Jacob for the first time...





Daddy holding Jacob for the first time...




Mommy, Daddy and Jacob...





Our Family...

Jacob is in surgery

Please pray for Jacob. He is in surgery right now. We got to hold him this morning, it was so perfect. We will update everyone as we get updates.

Please Pray!