Our baby boy had a pretty good day today. He did have issues at night with sats that dropped to the 50's but than that was stabilized. During the day he had a respiratory therapist try to get some flem or stuff from his lungs, but as most cardiac babies he did not like to be disturbed. They did this a few times and than he was ok and stable again.
Since this is the weekend, we did not get an update from the cardiology team, but the NICU nurse told me that if everything continues as it is going, he will have the Norwood surgery, first of three surgeries to rewire his circulation on Tuesday. Jasiu will be FOUR days old. This is one of the hardest surgeries because one he's a newborn and he has to be placed on bypass. We will learn more about the details from the surgeons probably on Monday.
Jasiu finally met his Aunties Aga, Kasia and Teresa, grandma Krol and Auntie Skupien. I was with him the whole time they were visiting and he got way too excited hearing my voice the nurse said. I saw his breathing change a bit, so I left the NICU to give him a little break. I can't believe how much he can recognize my voice. It breaks my heart to see him look so good yet be so fragile.
I am doing well as well, moving around more. The plan for me is to be discharged Monday night or Tuesday morning, which on "hospital time" is probably around 3 pm on Tuesday. I am so thankful that we live so close to such a good hospital that I can split my time and see my daughter every day and still be here at the hospital with my son. We keep asking everyone to pray for him so that he has the strength to get through this.
Photos on blog will have to come later when I have more time and energy to work on it. :( Some are uploaded to FB as it's easier than the blog.
Kathy
Saturday, February 26, 2011
Friday, February 25, 2011
JOHN JOZEF
Our precious baby boy John Jozef (Jasiu , in Polish) or JJ as my sisters like to call him made his debut today February 25, 2011 at 12:34 (notice the sequential numbers :) He weighs 8 pounds even and 20 inches long. Jasiu scored a 9 and again 9 on his APGAR so that's awesome and you would never think there is anything wrong with this precious baby if he wasn't diagnosed in utero. Once they cleaned him up a bit they let us see him, the chaplain baptized him with water and Joe and I both got to hold him for a few seconds each. It was the most wonderful moment of the entire day. Just as special as when I got to hold Emily for the first time. Than they whisked him away to start stabilizing putting in all the lines medicines, etc. I went to recovery and since Joe couldn't be with the baby he stayed with me sporting his blue scrubs outfit. (Second time in his life...pictures to come tomorrow) Jasiu wasn't ready after I was let go from recovery to my room so I haven't seen him since the OR. Joe got to see him between stabilizing and the time the cardiology team began their work.
Once cardiology was quite far along with the echocardiogram and x rays and putting in more lines a Fellow came to give us an update. The HLHS was confirmed and surgery will be necessary to save his life. We will be fighting right along with him and we are in one of the best hospitals in the area to handle this type of complex CHD. That makes me feel a little better. Joe put a little green angel in his NICU bed I got from a fellow heart mom and it was also blessed when we had a priest visit after christmas. There was a small problem with one of the lines that were going to go to a vein from the heart, it went to the liver and they worked hard to reroute it but we had to sign a consent form for a line through the groin. He is also intubated so that the doctors can closely monitor his breathing so he is as stable as possible. Joe took my mom in the NICU for a little and than my sister. Tomorrow he will meet ciocia Aga ciocia Kasia and grandma Krol. They keep it pretty calm in the NICU so not too many people will be visiting the little guy besides Joe an me when I can walk or sit up.
I am feeling ok considering the c section. Not much different from my first. The only thing missing in my room is my baby. Its pretty hard to hear all the babies cry in others rooms since mine is quite quiet (when the Klimek side of the family is not visiting) I miss my boy and its hard without him... Unless a mom had a baby in the NICU you have no idea... One of the only things keeping you sane is knowing he is in good hands.
Joe went home to be with Emily, I told him to go since he is pretty tired as well and Emily sometimes has a hard time falling asleep without one of us. So I made him go home. I could see that it was hard on him to leave and even split time between me and the baby. When he drops off emily at my moms house tomorrow he will bring me my laptop and I can get pictures up. So far FB only has pictures of pictures from our digital camera. Also this entire post was typed on a blackberry so I'm now pretty tired as well. This keyboard is quite small but I wanted to update everyone and I wanted to kill an hour before they wake me for my vitals every three hours...no point in falling asleep just to be woken up a few minutes later. So I literally spent an hour starring at this thing.
I will update tomorrow and whenever I can
I want to thank everyone for the prayers and keep them coming Jasiu needs it and we need help in praying for him. That's the best thing anyone besides the doctors can do
Once cardiology was quite far along with the echocardiogram and x rays and putting in more lines a Fellow came to give us an update. The HLHS was confirmed and surgery will be necessary to save his life. We will be fighting right along with him and we are in one of the best hospitals in the area to handle this type of complex CHD. That makes me feel a little better. Joe put a little green angel in his NICU bed I got from a fellow heart mom and it was also blessed when we had a priest visit after christmas. There was a small problem with one of the lines that were going to go to a vein from the heart, it went to the liver and they worked hard to reroute it but we had to sign a consent form for a line through the groin. He is also intubated so that the doctors can closely monitor his breathing so he is as stable as possible. Joe took my mom in the NICU for a little and than my sister. Tomorrow he will meet ciocia Aga ciocia Kasia and grandma Krol. They keep it pretty calm in the NICU so not too many people will be visiting the little guy besides Joe an me when I can walk or sit up.
I am feeling ok considering the c section. Not much different from my first. The only thing missing in my room is my baby. Its pretty hard to hear all the babies cry in others rooms since mine is quite quiet (when the Klimek side of the family is not visiting) I miss my boy and its hard without him... Unless a mom had a baby in the NICU you have no idea... One of the only things keeping you sane is knowing he is in good hands.
Joe went home to be with Emily, I told him to go since he is pretty tired as well and Emily sometimes has a hard time falling asleep without one of us. So I made him go home. I could see that it was hard on him to leave and even split time between me and the baby. When he drops off emily at my moms house tomorrow he will bring me my laptop and I can get pictures up. So far FB only has pictures of pictures from our digital camera. Also this entire post was typed on a blackberry so I'm now pretty tired as well. This keyboard is quite small but I wanted to update everyone and I wanted to kill an hour before they wake me for my vitals every three hours...no point in falling asleep just to be woken up a few minutes later. So I literally spent an hour starring at this thing.
I will update tomorrow and whenever I can
I want to thank everyone for the prayers and keep them coming Jasiu needs it and we need help in praying for him. That's the best thing anyone besides the doctors can do
Thursday, February 24, 2011
Less than 24 hours...
In less than 24 hours we will have met our little boy. Even if it is for just a moment that they will show him to me, I will have seen him FINALLY.
Throughout the last half of this pregnancy I was preparing myself for this moment. I still don’t think that I am fully prepared, but how can you be. I don’t think any mom ever will be or ever was, even if she knew she was expecting a child with CHD.
I am terrified of what will happen to my child. The last few months I have seen so many babies earn their angel wings and leave their parents in despair because of HLHS. It’s a terrible disease, all CHD’s are! No one is promised tomorrow, but it’s not fair for those kids that have to endure things that most adults will never even have to.
I am still hoping that there is a slim chance that the doctors were wrong, that there will be nothing wrong with him and all this was just a bad dream. But if it isn’t I’m hoping that this is the only ailment we will have to endure. All echos were pretty good, all NST’s and biophysicals were great yet there is still so much uncertainty. I hate that. In the last 10 weeks I have had 40 doctor’s appointments. I also know that this is not the end, that tomorrow will not end the doctor’s appointments but then I won’t be the patient. I wish I could take it all upon myself and not allow this baby boy be poked even once. Not him, not Emily.
The last 10 days I was out of work and spent the time thinking and rethinking of what will be happening to us. I also spent it with Emily, since I was feeling up to it. I wanted to give her the last few normal days that I can. We went to play dates, play yards, Children’s museum and all sorts of fun. She had a blast, though it tired me out.
The plan for tomorrow is to go to church in the morning since I will be missing Sunday mass and pray for our little miracle, drop off Emily at grandmas and go in for the C-section which is scheduled for noon on Friday, February 25, 2011. After that I don’t know… I’m assuming they will show me the baby for a few minutes and take him away to analyze, stabilize and do all sorts of tests to assess his condition. I will go into recovery, he will go to the NICU and my husband will split his time between me and our son. In the evening if everything is good, Joe will go home to our daughter and come by again to the hospital on Saturday. I should be discharged by Monday if all goes well again.
I will try to update the blog as soon as I can and hopefully with some pictures of Jasiu if Joe can get any in, which I hope he can. Till then…
Throughout the last half of this pregnancy I was preparing myself for this moment. I still don’t think that I am fully prepared, but how can you be. I don’t think any mom ever will be or ever was, even if she knew she was expecting a child with CHD.
I am terrified of what will happen to my child. The last few months I have seen so many babies earn their angel wings and leave their parents in despair because of HLHS. It’s a terrible disease, all CHD’s are! No one is promised tomorrow, but it’s not fair for those kids that have to endure things that most adults will never even have to.
I am still hoping that there is a slim chance that the doctors were wrong, that there will be nothing wrong with him and all this was just a bad dream. But if it isn’t I’m hoping that this is the only ailment we will have to endure. All echos were pretty good, all NST’s and biophysicals were great yet there is still so much uncertainty. I hate that. In the last 10 weeks I have had 40 doctor’s appointments. I also know that this is not the end, that tomorrow will not end the doctor’s appointments but then I won’t be the patient. I wish I could take it all upon myself and not allow this baby boy be poked even once. Not him, not Emily.
The last 10 days I was out of work and spent the time thinking and rethinking of what will be happening to us. I also spent it with Emily, since I was feeling up to it. I wanted to give her the last few normal days that I can. We went to play dates, play yards, Children’s museum and all sorts of fun. She had a blast, though it tired me out.
The plan for tomorrow is to go to church in the morning since I will be missing Sunday mass and pray for our little miracle, drop off Emily at grandmas and go in for the C-section which is scheduled for noon on Friday, February 25, 2011. After that I don’t know… I’m assuming they will show me the baby for a few minutes and take him away to analyze, stabilize and do all sorts of tests to assess his condition. I will go into recovery, he will go to the NICU and my husband will split his time between me and our son. In the evening if everything is good, Joe will go home to our daughter and come by again to the hospital on Saturday. I should be discharged by Monday if all goes well again.
I will try to update the blog as soon as I can and hopefully with some pictures of Jasiu if Joe can get any in, which I hope he can. Till then…
Monday, February 14, 2011
10 Days ...
Today was my last day of work. Our baby boy should be here in 10 DAYS. Single digit countdown, this means it’s getting really close and I’m getting really nervous. (Hopefully he doesn’t decide to come early as my daughter did. I was going to have 7 last days of just me and my husband before her scheduled C-section and she decided to punch the water open one week early. ) During this 10 day period I plan on spending all my time with Emily and Joe (though he will be working). It will once again be a period of lasts:
Everyone says it’s tough going from 1 to 2 children. It’s “normal” to be afraid, however I feel like this is so much more than just a second child adjustment as most moms describe it… again sleepless nights, jealous sibling, breastfeeding, etc. For us it will be the NICU, hospital, surgeries, medicines, doctor visits, constant surveillance and worry. I have been wondering how we will adjust to all of this now that it’s so close and though I have had so much time to research, talk to people and read up on others’ experience, I don’t think I will ever be ready. It just has to happen.
I hope that our son, John Joseph, will be strong and “healthy” enough to endure this great journey that he is about to embark. This can be a cruel world but his will be filled with people who already love him so much and are willing to do whatever it takes to make sure that he beats this horrible disease and make his life as full of love laughter and happiness.
So now we wait for the arrival of this bundle of joy and PRAY for the best of luck to him and may God guide us and the medical staff at Hope to do everything in their power to mend his little heart.
· Last days we are a family of 3
· Last days Emily will be getting ALL the attention
· Last time we go to a birthday party without being overly worried if there will be sick people there
· Last days we can pick up and make spontaneous plans to go to a play date or anywhere.
· Last days I will be able to provide a completely painless and safe environment for my son.
Everyone says it’s tough going from 1 to 2 children. It’s “normal” to be afraid, however I feel like this is so much more than just a second child adjustment as most moms describe it… again sleepless nights, jealous sibling, breastfeeding, etc. For us it will be the NICU, hospital, surgeries, medicines, doctor visits, constant surveillance and worry. I have been wondering how we will adjust to all of this now that it’s so close and though I have had so much time to research, talk to people and read up on others’ experience, I don’t think I will ever be ready. It just has to happen.
I hope that our son, John Joseph, will be strong and “healthy” enough to endure this great journey that he is about to embark. This can be a cruel world but his will be filled with people who already love him so much and are willing to do whatever it takes to make sure that he beats this horrible disease and make his life as full of love laughter and happiness.
So now we wait for the arrival of this bundle of joy and PRAY for the best of luck to him and may God guide us and the medical staff at Hope to do everything in their power to mend his little heart.
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