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