Another heart stent today

Yesterday night, after a wonderful tubeless day, our nurse came in to inform us that after Jacob's echo our surgeons met and decided it would be best for Jacob to have the stent procedure done soon. So they scheduled us for this morning.

It came as a shock to us since we were told originally we would have more time before it needed to be done. But after lots of questions and worrying it came down to the fact that the surgeon knows best and we need to trust that it is all for the good of Jacob's future.

The hardest thing in the world is to walk your baby down to surgery and have to hand him over to some stranger. This time it was as if Jacob knew what was happening, as the nurse took him into the operating room he was looking back at me and mom with such sad eyes. It broke my heart...again. As a mom you just want to protect your children from pain and its such a terrible feeling not to be able to shield them from it and to sit there and watch or let it happen. So many times I just want to scoop him up and RUN out of the hospital, but of course we don't because we also know it is for his own good and ultimately means his life. But still... it's hard, so hard.

Anyways, the heart cath went well, but we are still in ICU as I type. And we will have to stay here overnight. :( He is pale and his blood count is down (not low, but lower than they would like), so they just want to monitor him closely. He didn't eat much since he has been out of surgery, but the doctors are not concerned since he is still drugged up a bit and his throat is sore from the breathing tube they had in.

Hopefully this will be his last procedure before the big surgery at 6 months. The surgeon put a different kind of stent that has more metal in it, in hopes of it lasting longer in Jacob's heart. But still it will need close monitoring because there is no way of telling when the arch will narrow again and if it happens before 4 months, we will need an additional surgery. We just need to hope and pray for the best.

I want to say thank you to Brother Steve Hearst for coming today and supporting us as we waited for Jacob's stent to be complete. Your kindness is appreciated more than you know. :) We are so thankful to have such a loving brother and friend by our side.

SOMEDAY we will be home. I miss you all terribly. We called in for the special talk Sunday because we couldn't make it to the kingdom hall and it was so nice to hear all the voices of our friends back home. I love you all!

my beautiful tubeless baby for a day 4-28

Just when you think things are going good....

something bad happens.

But first off, Jacob had his heart cath done today. It was just like a major surgery, despite the doctors saying this was "minor". I was scared. He was put under, with a breathing tube down his throat again and we were back in the ICU for awhile. But he came out fine, just really crabby and hungry. (As a good side note, since yesterdays full feeding orally, he has been doing it constantly! So he finally got the eating thing down! No G- tube!!) So as you can see I was feeling pretty good, the cath went good, Jacob is eating.. I am thinking I will be home by Monday.

But than came the bad news. During the catherazation they were able to look more closely at Jacob's heart and they found a new, serious problem. His aortic valve is very narrow. This is the valve that sends the blood out to the brain and back to the heart. The doctors are very concerned about this. They scheduled a meeting with all the surgeons and doctors we have been working with for this Wednesday to talk about Jacob to see if it is safe for him to go home in this condition. So he may need an addition surgery before we leave and if that is the case, we will need to come back again in 6 weeks for another surgery and than continue with the surgery at 6 months and 2 years. :( So I am scared out of my mind!

The doctors may decide we can go home and just be CLOSELY monitored, but that scares me also. We will be needing to see his cardiologist in Milwaukee once a week and have echos done. Which remember, Milwaukee doesn't know anything about the hybrid surgery we had done. And the symptoms to tell if something is going wrong, and the valve is closing are very minor... just not eating quite as much, being paler, sweating more... there is no hard core way to tell if the valve is narrowing more.

So now I am officially scared... I can't say that enough. It's just a lot to take in at the moment, considering I was just thinking a few short hours ago that I would be home by Monday. But I know Jehovah will help me and Jacob be strong.... Jacob is the strongest little boy I've ever known.

Getting sick of all these tubes...

So jacob had a busy morining pulling out his ng tube from his nose. He was so happy with no tape on his face and nothing down his nose.... but of course they had to put it back in again. :( Jacob was not too happy about that! All his hard work for nothing.

Good news though is that after this little incident, he eat ALL 70 mil. orally!!! Happy Day for Jakey! We just need to keep it going.... He wants out out of here ASAP also!

3 weeks old today

After his bath with his fluffly hair! Super cute.

Here is our surgeon! I love him! Thank you Dr. Galantowicz.... you are the best!

I tend not to be posting as much because not much is going on. The only good news is that the Doctor thinks that maybe after Jacob gets his last procedure done (a catheterization that is the last stage of his hybrid surgery) that he might eat better. He sees potential in him because he starts off his feeding so good. He can suck and swallow, he just tires out and can't finish all he needs. So hopefully his catheterization will help his breathing and therefore help his eating. They are putting off the G tube until early next week. So that is good. But than it means that we will also be here in Columbus even longer.

feeling down

So yesterday was a tough day for me personally. First off I had a fever of 102.8 and had to go to urgent care for some antibiotics. Like I don't have enough things to stress about. Than the rest of the day was spent with me trying to rest in the hotel room. So I didn't see Jakey at all yesterday. :( And my in laws were here with Stefan and Adrian and I barely got to spend any time with them either because I was completely out of it.

I'm very worried that Jacob is going to need to come home on a feeding tube. I don't want him to have to have another surgery just to put in a g tube in his poor tummy. :( That would be so sad. He is still only eating 20-30 mil each feed.

Jacob is starting to be more alert now which is nice to see. But yesterday he was getting irritated and ended up pulling his whole feeding tube out of his nose! I am hoping that is a sign that he has had enough of all those tubes and has decided to start eating.

My other boys are going back home today. :( I am going to miss them terribly.

sitting and waiting

We received a YUMMY bouquet of cookies.... Thanks Uncle John and Aunt Sophia and boys!

Trying to eat....

Getting mad at the bottle..

There is no news going on around here lately. We are just waiting on Jacob to get eating.... The doctors are talking about having to maybe leave with the feeding tube still in him, which I really don't want to do. We need to pray for Jacob to eat on his own... please...

So Sleepy all the time..

Sorry I haven't posted the past few days, I have been in the hospital non stop and didn't have the computer with me.

So feeding issues are where we are still at.....
The Doctor decided to lower the amount of milk Jacob needs to eat, now it is 70 mil instead of 90. And they are just fortifying my breast milk with extra calories. Monday night, one time, he ate all 70 by mouth!! So at least we know he CAN do it, but the question remains will he?

Usually he only takes 20-40 mil by mouth and the rest needs to still be tubed. And just that is a constant struggle. All heart babies want to do is sleep... if they had a choice between eating and sleeping they would just sleep, because eating is such a hard task for them. A heart baby alone uses at least twice as much energy than a "healthy" baby just to live... to breathe and for his heart to pump and for him to stay alive. Than we add eating to that, and they are just pooped out all the time. That is why he needs to eat more than a "healthy" baby to gain weight.

Every time I need to wake him to eat (every 3 hours) he looks at me like Why Mom??? And he is so irritated at me. I have to almost force him to do the swallowing motions. You hold his chin up and push his cheek.... than you turn the bottle around and tap it... its a continuous cycle. Than you can't cuddle at all when feeding or else he WILL sleep. You need to hold him way out from your body and just support his head. Its way hard on me, I can only imagine how he must
be feeling??? poor baby.

But everything else looks good, besides his feedings. So once he can take his 70 mil consistently we are so out of here!

I have been having training from the nurses of how I am going to need to take care of him at home. I have this big Rubbermaid container full of a scale, a machine to measure his oxygen stats, a book to record his progress everyday. So if you ever invite us over, everyday before his 6 o'clock feed, we will be bringing out all our big box of stuff for Jacob. :) So be ready for it! Also I have started giving him his meds myself at times. So they are really preparing us to go home.

Still though, it could be weeks. I really, really hope not. But it is very possible. I just hope he doesn't have to go home on any tubing. That is my biggest scare right now. I want him to be able to have a fun, normal summer with his brothers. No tubes of any sort attached for the next few months.

Hopefully today will be a good day and he will surprise us all!

Moving up in the world... floor C5!

Last night we finally got out of the ICU to floor 5! So that was a big step.... The night nurses were not too knowledgeable in knowing how to feed Baby Jakey. So it was a little frustrating to me, because he ate less orally than he did in the ICU.

Its quite different on this floor. We went from the nurses not wanting you to move baby by yourself or change his diapers in the ICU and than we moved and nurses are no where to be seen. And we are in charge of everything! Which is nice in a way, but also kinda scary because it went from all help all the time, to absolutely nothing.

Hopefully our day nurse will be a smart one.

Jacob's last big challenge is to be able to eat those 3 oz of milk. It is said to be a very difficult one, but than we can go home. And I can not wait to get back into a routine at home with my 3 boys!

Robles boy who doesn't like to eat????

Yesterday Jacob started feeding through the bottle! It has been a big day for him. He is having some trouble with it though, as was expected. He only will intake between 5-15 mil. at a time, but according to his weight they want him to consume 60 mil. every 3 hours. That's 3 oz!! Seems like a lot to me for such a little guy.... But the nurses insist that is what he needs. So whatever is not taken orally is put in his NG tube (through his nose to his stomach).

So he is having some problems with gagging, and obviously is having trouble eating orally as much as he should. I can't believe one of my babies doesn't like to eat......yet, that is. I know soon he will be just as chunky as the others when they were small. :) For now they think his problems sucking has a lot to do with his fast breathing. No one can swallow and breathe at the exact same time. Plus his first time ever having something orally is at 10 days old, so it will take a while for him to get used to it.

My mom wants me to tell you the story of how she saved a little boy's life last night. Across the hall in room 3 there is a little 18 month old boy who has been in the hospital since birth. :( In the middle of the night, alarms started beeping and the nurses were ignoring it as if it was nothing. mom looks outside our rainbow curtain to notice the poor little boy laying sideways across his bed, kicking his feet. "Excuse me," she says to our nurse. "I think that little boy is in trouble!" As our nurse rolls her eyes, she heads over there just to take a look. To her surprise, the little boy had pulled off his oxygen mask and tubes!! He couldn't breathe!! Nurses than went running to save that little boy's life. The nurse eventually came back and thanked my mom. Thanks mom for saving a life today!

more progress

Today again went well. I am trying not to get my hopes up, but the doctor said we should be out of the ICU tomorrow!!! Happy Day! Now on to the next big step of getting Jacob to eat.... they say this part is what usually takes the longest with heart babies. I am hoping he'll have his brother's love for food and we won't have a problem.

We left Jacob alone for the first time ever today for about 2 hours when we all attended the memorial together. I so wished to be back home to my congregation with Jacob by this time. I miss home. But the congregation here is so very loving. And we have lots of new friends. It just would have been nice to have had my whole family home by now.... hopefully soon.

more pictures....

These pictures are not in order, but on top is our first family picture ever!!! Below is Isaac and Nico with their brother... being able to touch him and talk to him for the first time. The kids are technically not allowed in the ICU, but the nurse made an exception for today! The boys were so excited. And Jacob loved them being there also. Normally, Jacob breathes way too fast and deep, but when his brothers were their talking to him and sticking toys in his face, he was very content. And his breathing was consistently at the rate the doctors want it to be at. See, as I have been saying, Jacob just wants to get into normal life with his family!

Below is right after the nurses took off his lights for jaundice earlier today and I got to hold my baby!

This is what Jacob looked like under the jaundice lights and with his breathing mask on. Alex called it "the elephant mask." Jacob hated it! Of course! This is what he looked like yesterday.

And this is what he looked like this morning still under the jaundice lights, but no "elephant mask".

dark night to a brighter morning

 So last night was a tough one.  Baby Jacob was crying and crying and crying, so they took him off of feeding (they started him on breast milk through a tube).  Since they figured that was all that was done differently from the day before.  They thought that he was having stomach problems with digesting that was causing him so much pain and discomfort.  :(   So they were going take an x-ray in the morning to see what was going on in there.  

Than his jaundice levels were increasing!  AND he got a high fever, so the doctors were taking lots of blood tests to figure out what was going on in his little body.  He was started on 3 antibiotics.  

So I spent my night crying and worrying and praying.  Sometimes I just feel like all the little things have been going wrong and how in the world will we ever be able to go home as a family?

Thankfully the morning came and with his first morning blood test, we were told his jaundice number went down drastically, so he is now off of the jaundice lights!!  Yeah!  Just taking off his lights and the shades that covered his eyes made him a much happier baby.  After that the x-ray of the stomach looked good.  So they are planning on very gradually starting him on food again, hopefully later today.  (The bad news is, I lost most of my colostrum, because they thawed it out yesterday thinking they were going to use it all, but now it is spoiled!) :(   The results of if he has a virus has not come back, but his fever is gone!  And they are planning on removing all his little IVs, and making just one central line where everything can go through.  

The best part of today was when they moved him to a big boy bed... and were transferring all his stuff, I GOT TO HOLD MY BABY!  It was the best feeling in the world.  I so want to take him home now more than ever.   It will still be some days in the ICU, but just being able to hold him gave me strength to continue on.  

I will post pictures, hopefully later when Alex comes, because I am having problems uploading the news ones.  

little update

Things are VERY slowly getting better and better. The doctors are gradually getting Jacob used to not having any additional oxygen. And once that is done, he can begin to eat my milk! :) So they say that will help him improve in all areas. Maybe tonight, if all goes well for the rest of the day. He is still under the jaundice light, but his numbers are getting lower.

We just pray for no more set backs, so we can be out of the ICU by the end of the week.

Please continue with all the prayers... thank you for your love and support again. :)

Baby is crying at last!

Sorry for not posting yesterday, it was a busy day and I was in a lot of pain last night with my incision.  We had lots of wonderful visitors yesterday.  Thank you to everyone for coming!  Today is the first night that I am spending at the hospital (with mom).  Lately Alex has been taking the night shifts.  

Things have been gradually getting better.  Jacob no longer has the breathing tube down his throat!  So now I can hear my baby cry.... crying never sounded so sweet!  Yet, he still has some oxygen strapped around his head and going in his nose.  Which he does not like at all.  They had to put a mitten on his hand because he keeps trying to pull it off.. along with other wires.  He wants to go home too!  Also his urine catheter is gone.  

This morning he had some mucus in his lungs and were afraid it was pneumonia, but the results came back ok.  They just had to clean out his lungs of the mucus, which can accumulate from having the breathing tube down your throat for so long.  

Bad news is that he has jaundice now.  He is sleeping under the lights, as I type.  Poor baby.  

Oh, the results of the brain scan came back good.. so they are thinking that maybe his holding of the breath was related to stress of the surgery or pain once again.  

Hopefully things will go good tonight and tomorrow and we can get out of the intensive care unit soon.  

Below is pictures of Jacob when he had in his breathing tube ~

Day 2 & 3 of Jacob's life

Here are some pictures from before Baby Jacob's surgery and the bottom two are from right when he came out of surgery.  The bottom picture was the first time I ever saw him with both his eyes open.  

The blog won't let me put up any more pictures on this page, so I will post a couple more and give you all an update on the next one.  

ups and downs....

I wish I could say things were going excellent, but it has been another crazy day.  

Jacob's holding of his breath is no longer thought of being because he is in pain... the doctors aren't sure why he is doing it.  They have been running tests all day.  They are doing brain scans, genetic testing and all sorts of stuff.  Results are not back as of yet.  Also, he is back with a breathing tube down his throat.  :(  That is a big step backwards.

He now has a catheter for his urine, an oxygen tube, is being feed through a IV...  He looked so much worse than yesterday because of all the machines and tubes.  Its a hard thing to see.  

Good news though is that he opened both his eyes today and was looking at us!  It was the first time I have seen him with both eyes open... so I could finally answer Nico's question about "What color eyes does baby Jakey have?"  He was happy to hear the answer blue...(dark blue)...Nico REALLY wanted Jacob to look like him.  Isaac and Nico are waiting to be able to see their brother again.  unfortunately it may be a while yet.  Isaac is asking lots of deep questions about all that is going on and I know he is still very scared.  He just wants mom and Jacob to come home so badly.  (don't we all!)  

Anyways, Jacob's WONDERFUL surgeon came in today also and asked us surprisingly, "Why all the long faces?"  He said that this is how it goes...  we take a few steps forward and some back.  But that Jacob is ok and he is going to be ok.  So for whatever reason, me hearing him say that, made me believe him.  We just need to focus on the positive and keep praying!  

Just Breathe Baby....

It has been one very busy day to say the least.  The surgery this morning went excellent.  The surgeons said that Jacob being big really did make it easier.  And they were done quicker than normal.  :)  So I was so happy!  I sadly was in my hospital bed getting updates, but thankfully everything went well.  

I made plans with my doctor and nurse to head over to Children's at 11am, and we were all set to go... I just pumped, took pain medication, and had my wheel chair, when the nurse comes to tell me that the doctor never signed the okay for me to leave for a couple hours. So there Alex and I waited....and waited...and waited until about 2 hours later we got the clear to go.  So finally I got to go see my precious baby.  

He was very puffy and swollen.  He still had his breathing tube in from the surgery and he looked so helpless.  Lots of wires and IVs. I just wanted to grab him up and take him away from all the pain of this world.  Eventually when I was there, they took out his breathing tube, which was a very good sign that things were looking up for him.  Yet now his cry was all scratchy and he sounded so miserable.  And he wasn't peeing, so the nurse was concerned about that and he was continuing to get more and more swollen.  

Than came the scare of my life....  seriously this was the most scared I have ever been.  All of a sudden Jacob's breathing rate went down to 40 (they want it to be at least 70), so all these beeping alarms started going off.  The first nurse to get there started screaming for everyone else saying all these technical scary sounding things that he needs, so like 10 nurses and doctors ran in and were surrounding him.  Off course my mind turned to the worst and I just started balling my eyes out.  Thankful the nurse who has been watching Jacob all day decided to make his way over.... and he told everyone he was fine and just needed more pain medication.  My poor baby, as it turns out, when he is in a lot of pain, he holds his breath.  

So I just kept telling him, no matter what baby you just have to keep breathing.  He scared me out of my mind.  I couldn't stop crying than for like the next hour, it shook me up very badly.  

So that has been my day.  The next 48 hours are critical for Baby Jake.  I will post more pictures, tomorrow hopefully.  

Also Auntie Vania came today, of course right in the middle of my breakdown.  But I know she is going to be a big help with all three boys...she already has been.  :)

Surgery

So today at 7ish am they are taking baby Jacob to get prepared for his surgery.  The doctors say he looks good, so he is ready. 

 

 I got a leave of absence from the hospital yesterday for 3 hours to go to Children's and hold Jacob.  So that made me happy.  :)  I feel so terrible being in my hospital room alone, when the only place I want to be is at Children's with my baby.  I don't even know if I will get to go later today or not.  Hopefully I will get a nice nurse, who lets me go for a while.  

I want to thank my Aunt Lisa for coming for the birth of Jacob and for staying by my side, over night at the hospital for as long as she could.  It meant so much to me, to have her here and she helped me to stay relaxed.  And I am so grateful to my dad who also came, he is a strong pillar of support for me.  I just feel better when he is around.  Also, of course my mom, and Hari.  I couldn't of made it till today without my mom, my best friend.  It gives me peace of mind knowing that my mom is at Children's, with Alex, staying up all night and giving Jacob just as much love and attention that I would be.  I have such an amazing mom who literally would sacrifice anything to be here with me for as long as I need her and want her to be.  And she knows I need her now!  And Hari for taking care of my other two loves, Isaac and Nico, and saying prayers with me.  

I feel such a strong support group from everyone.  I know so many more people wanted to be here, and that means just as much knowing that baby Jacob is going to be so loved throughout his life.  Alex and I have much to be thankful for.