We've been busy trying to get to this day but wanted to let everyone know the great news. We arrived home last night around 8:30pm. Everyone is happy happy happy.
More to come......
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Thursday, October 27, 2011
We're Home!
Kaleb is Home!
We've been busy trying to get to this day but wanted to let everyone know the great news. We arrived home last night around 8:30pm. Everyone is happy happy happy.
More to come......
We've been busy trying to get to this day but wanted to let everyone know the great news. We arrived home last night around 8:30pm. Everyone is happy happy happy.
More to come......
Monday, October 17, 2011
BEGINNING OF OCTOBER
It has been a couple of weeks since our last post. When I thought about setting up this blog I figured it would be easy to post a couple of entries each day. Boy was I wrong! I never knew how much time it took to pump every 3 hours, order a meal, listen to rounds, etc. So here it is on the weekend and I have some time. Actually, we do get some time during the day to write, but I’ll play a game on my Ipad or Jenifer will search the internet and read about what is going on. It’s healthy, and our only avenue towards a little bit of a life outside the hospital. Even though this is our new life, it’s still nice to take some time for yourself.
Jenifer’s last post was so inspiring for so many that it is hard for me to even come close. I’m glad that she got to share her experience through this with everyone. Hopefully she’ll find time to write more because she touched so many people with her last post.
This will be another post to catch everyone up on what has happened to us in the last week or so.
We’re going to start on Thursday the 6th.
Kaleb’s PD Cath was removed finally removed. It was minor surgery but always a risk for arrhythmia due to his heterotaxy. All went well and he his healing nicely. There are still some internal stitches but looking good! The Cath was put in the day after his stents where put in. Since it had been so long since he’d needed it, it probably wouldn’t have worked anyway and just needed to come out.
At 4pm (we were scheduled for 3 pm but Rylynn got her new heart and all was a buzz in the ICU. Our prayers and well wishes go out to Rylynn and her family. We’re so happy for you guys!!!!) we met with the team on the 8th floor, the step down floor. Yes, you heard me, we are moving out of the ICU! They have been talking about it for weeks now, but because we had the PD Cath we had to stay in the ICU. The meeting was great, but we had to revisit some of the earlier events. It was not really something we wanted to talk about. Personally I could do with never hearing the word “withdrawal” ever again…. Other than that everything was fine and we were scheduled to move out of the ICU on Monday. Another side note about the meeting. Two terms that were used officially, one could say, were the following; miracle baby and we’re in uncharted territory here. Kaleb is a fighter and beating the odds! After that meeting I went home to sleep and then the next morning…………
An Aussi by the name of Alan said the following phrase to my wife, “we have a safe at home program” and my wife began to cry. Of course, Alan thought he said something wrong and didn’t realize he was the first to break the news to us- the news that we would go home before our first surgery!!! Dr. Nugent told Jenifer that he and Dr. Forbess had discussed Kaleb’s future surgeries and decided to let him grow and do the first surgery when he is around 6 months old. There were many pieces to the puzzle that had to fall in place in order for this to happen. In short, Kaleb needs to be as big as possible for the first surgery, because it’s really involved. Thankfully he is doing so well with feeding that we are able to achieve growth. By the way, he is 6lbs 15oz as of today. The surgery is really a moving target and all has to do with his oxygen levels. Right now they are high, but as he grows they will drop. If 6 months pass and he is still within acceptable oxygen levels, they’ll push the surgery back. Bigger is better. We were also told that it looks possible to repair the ventricles and provide a pumping chamber to the lungs. I’ll try to explain this later in a post that describes Kaleb’s heart condition. Great news and if possible will allow for a better life. Again, this is way down the road and we need to focus on the first surgery because it’s pretty important and there is a lot that Dr. Forbess will have to do. It was all great news and we had a wonderful weekend in the ICU, our last for now…..
Monday came and I took time off from work to experience the move up to the 8th floor. However, we did not make it. They were full and they do not move patients after 5pm. Needless to say it was very frustrating and we were all packed and ready to go. So, at 5pm we took out what we needed for the night, and waited till the next day. I will admit, I had a deadline on Tuesday with work and was unable to be there on Tuesday and did not experience the move. Being a dad can be tough. Having to balance family and work! I’m sure all new dads go through this and now I can understand. On Tuesday morning Jenifer and the team moved the boy and 40+ frogs to the 8th floor. We’re in room C8272 with a wonderful view of the sky and Parkland hospital. Better than the garage view in the ICU. Not important, but trying to paint a picture.
On the first night on the 8th floor, I was able to eat in the room while holding my son. Words can not describe that moment. We’re just one step closer to being home. Which we have been told could be in 2 to 4 weeks. This adds a little perspective and makes me a little anxious. We need to clean the house, carpet, ducts, verify car seat is installed correctly, etc. We never thought we’d be going home until the first of the year, so we put some of these items on the back burner. Eekkk… This first night was tough (scary) for Jenifer. Sometimes we guys just don’t read the signals very clearly and I should have spent the first night with her. I did the second night, though… J Needless to say it has been a little more of an adjustment than we thought. Because Kaleb is unique, there are more visitors (residents, nurses, fellows) that swing by. (We have been joking that there is more activity in the step down floor than we did in the ICU.) The room is also smaller, and trying to get our stuff organized has been a little tricky. Frogs have fit nicely though…..
It might come across that we are a little frustrated but we are not! It is so much better than being in the ICU. We just had a little adjustment period. Now everything is going well, and we’re ready to go home. Kim, one of the NPs from the ICU runs the “safe at home program”. She came by on Wednesday and gave us our binder, scale, stethoscope, pulse and oxygen reader, and list of requirements we have to pass in order to go home. This program was one of the reasons we chose Children’s and it appears to be better than we thought. I don’t think they’ll let us leave until we know how to do everything and we always have a nurse on call 24/7! Kinda scary that we have to listen through a stethoscope and know how to put in an NG tube (feeding tube through nose that goes into stomach) and that it is correctly placed. We’re on it and we’ll have it down in no time. Actually we know how to do everything except put in the NG tube. J
We have our struggles but are doing great and settling into a routine. The goal will be to leave on PO (per oral) feeds. However, Kaleb has all the signs of reflux and we have switched the formula we use for fortifying the breast milk and have given him some reflux medicine. I feel for my wife. You just want to say…. “what’s next”? We give him 2 shots everyday, 7 medicines, living in the ICU, visitors 2-3 times a day, machines peeping all day (got that taken care of last night!), wife has to pump every 3 hours, and now we have a baby with reflux (constantly upset and always crying)….. neeeext…. J
Part of the course we’re on and we’ll adjust like we’ve been doing. But this last week has been a little tough! But we’ll take it because we’re just one step closer to being home, which should make things a whole lot easier! So I say, bring it on…… Well, my wife can handle it better than me… J
That’s our story up to this point. See some pictures of the boy below.
Karl
Hangin out with cousin Avery and Aunt Jacque
Using big boy scale for the first time and rockin faux hawk
chill
holding froggy wabbanub
hmmm
Are they Blue or Brown eyes......
Frogs....
More frogs....
meoooooow.... halloween costume 1 of 6,549,038
It's sooo tough being a baby!
Whoa.... what are those.....
Bottle Time
The infamous hurry up and wait. Classic pic, mom on the phone
and dad looking at heart pictures.....
Before the move...
After the move....
Saying good bye to ICU
Froggy friends are protecting Kaleb and watching over him as he moves.
Headed to the 8th floor
Even Dr. Nugent gets involved...
Chillin in new room
Frog's still watching over the boy in new room....
Mom and Kaleb sporting the Nap Nanny
huh.... this seat vibrates....
This Blog is Finished!
Monday, October 3, 2011
The Little Kaleb That Could...
Karl has been wanting me to post an entry on our blog since it's inception, but I haven't really been ready until now. Since last week was Kaleb's 1 month birthday, it seems way past time to give a little "mommy perspective" to the whole thing.
I look at Kaleb now, and I can't believe how far we've come in such a short time. His life so far has been extraordinary by anyone's standards, and I feel truly privileged to be his mom. Almost daily, he does something that amazes the doctors and his mommy and daddy. He is living proof of the power of prayer and the belief that you should never give up on something/someone that you love, even (and maybe especially) if a situation seems impossible. So that brings me to what do I want to write about? I guess I'll start somewhere near the beginning and just see where it takes us. ;)
When Karl and I found out we were pregnant, I spent hours thinking about what it would be like. Like any mom, I fantasized about what he would look like, how he would sound/smell/feel, places we would take him, the opportunity to share him with our family and friends, and how much we would enjoy watching him grow and become this little person that we love more than anything we could have imagined.
If you've followed our blog or know our story, you know everything changed in week 19 of our pregnancy and just got more complicated when he was born. Karl has done an amazing job of describing Kaleb's heart condition and the first days after he was born, and to be honest, I'm nowhere near ready to revisit the 2 days we believed there was nothing that could be done to save him. I can't even look at the pictures from that time without crying, but I know one day I'll be able to see them with the eyes of a person grateful for the answered prayers for his life, and be unafraid.
In the days following his birth, I started thinking of our life with him in a whole new way. I became grateful for every day we had with him, and began a list of things I hoped I would be able to do with Kaleb that was much different from the list I had prior to learning of his complicated condition. I began to fantasize about a time when I would be able to hold him any time I wanted, see his face without the ventilator and tape, hear him cry, pick him up without having a nurse and respiratory therapist help me, dress him in one of his cute outfits, and so on. Thankfully, we received the miracle of his first procedure's success, and steadily he continued to overcome the odds.
4 weeks after that miraculous Cath Lab procedure he wasn't expected to survive, and he continues to impress everyone. The ventilator is long gone, so we see his beautiful face every time we look at him. All his IVs and central lines have been removed, so I can not only hold him whenever I want, but I can do it all by myself. You've probably noticed from pictures, he's quite the stylish little guy these days-frequent outfit changes and the occasional fauxhawk for extra cuteness! And, of course, my personal favorite milestone- this baby we were told not to expect much from is breastfeeding and beginning to take a bottle!
Even though life in the Cardiac ICU will never be the same as if we had Kaleb at home, it is such a gift to be able to do so many everyday activities with him that many parents consider fairly mundane. We're so blessed to be able to focus on feeding, loving, and growing him in preparation for his first surgery, and we'll never take a moment with him for granted. We can't wait to watch what happens next with our little Kaleb who can and will never let someone else's limits determine his future! Thank you to all who continue to pray for his continued strength, health, and safety and for the skill of the doctors and nurses in charge of his care.
Enjoy the pictures of our little man from his birthday week!
With love,
Mama
I look at Kaleb now, and I can't believe how far we've come in such a short time. His life so far has been extraordinary by anyone's standards, and I feel truly privileged to be his mom. Almost daily, he does something that amazes the doctors and his mommy and daddy. He is living proof of the power of prayer and the belief that you should never give up on something/someone that you love, even (and maybe especially) if a situation seems impossible. So that brings me to what do I want to write about? I guess I'll start somewhere near the beginning and just see where it takes us. ;)
When Karl and I found out we were pregnant, I spent hours thinking about what it would be like. Like any mom, I fantasized about what he would look like, how he would sound/smell/feel, places we would take him, the opportunity to share him with our family and friends, and how much we would enjoy watching him grow and become this little person that we love more than anything we could have imagined.
If you've followed our blog or know our story, you know everything changed in week 19 of our pregnancy and just got more complicated when he was born. Karl has done an amazing job of describing Kaleb's heart condition and the first days after he was born, and to be honest, I'm nowhere near ready to revisit the 2 days we believed there was nothing that could be done to save him. I can't even look at the pictures from that time without crying, but I know one day I'll be able to see them with the eyes of a person grateful for the answered prayers for his life, and be unafraid.
In the days following his birth, I started thinking of our life with him in a whole new way. I became grateful for every day we had with him, and began a list of things I hoped I would be able to do with Kaleb that was much different from the list I had prior to learning of his complicated condition. I began to fantasize about a time when I would be able to hold him any time I wanted, see his face without the ventilator and tape, hear him cry, pick him up without having a nurse and respiratory therapist help me, dress him in one of his cute outfits, and so on. Thankfully, we received the miracle of his first procedure's success, and steadily he continued to overcome the odds.
4 weeks after that miraculous Cath Lab procedure he wasn't expected to survive, and he continues to impress everyone. The ventilator is long gone, so we see his beautiful face every time we look at him. All his IVs and central lines have been removed, so I can not only hold him whenever I want, but I can do it all by myself. You've probably noticed from pictures, he's quite the stylish little guy these days-frequent outfit changes and the occasional fauxhawk for extra cuteness! And, of course, my personal favorite milestone- this baby we were told not to expect much from is breastfeeding and beginning to take a bottle!
Even though life in the Cardiac ICU will never be the same as if we had Kaleb at home, it is such a gift to be able to do so many everyday activities with him that many parents consider fairly mundane. We're so blessed to be able to focus on feeding, loving, and growing him in preparation for his first surgery, and we'll never take a moment with him for granted. We can't wait to watch what happens next with our little Kaleb who can and will never let someone else's limits determine his future! Thank you to all who continue to pray for his continued strength, health, and safety and for the skill of the doctors and nurses in charge of his care.
Enjoy the pictures of our little man from his birthday week!
With love,
Mama
Mama's favorite pic of him smiling in his sleep-he smiles all the time now and it melts my heart every time!
Discovering his ducky paci for the first time-it's almost as big as he is!
Mimi and PawPaw dressed him for Halloween while they were babysitting!
Special cuddle time with Mama!
School Spirit for Daddy's Team!
Bottle Time w/Daddy
Bathtime w/Mama
Ready for bed
Falling asleep in Nanna's arms
Cozy in GrandPa's arms
Daddy's Little Monster
It's tough being a super stud!!
Holding my first rattle!
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