It is an awesome feeling to be home. It is a horrible feeling to be home without our little man, but it is still nice to be home. Danny and I have worked on the house some and tried fitting all of the things that helped make our life in FW back into our home here and we are thinking we just have too much stuff! lol Time for a sale ....
We have walked to the school to get Kota the last 2 days. We have taken the puppy with us to take an afternoon walk. I need to walk anyway, so it felt really good to get out and be in the fresh air and sunlight. Kota loves us walking to get him ... he loves to lead the dog home with her leash! We turned the corner today to come to the house and Kota and the dog just started running. It warmed my heart to see his little legs running down the street with his dog and his backpack flopping on his back. I said to my husband ... "You can't do THAT in FW!" There was no traffic on the road, birds were singing, and just the sounds of Kota and Pumpkin running down the road. Brilliant!
Sounds silly but the sound of cereal pouring in the kitchen, a DP can being opened, the doorbell ringing, sitting on the front porch, opening the windows ... washing our own dishes, cooking our own meals (and as BIG as we want to!) are all things that I am just savoring this week. I mean, I am taking in EVERY single sound, every single sight, smell ... you name it. I am cherishing it all.
This experience has changed me and my family. It has changed who we are forever. We will never be the same again, and that is a good thing. We are much closer, filled with more love, more patience, more kindness and goodness, mercy, joy ... the fruits of the spirit that God wants us to possess run abundantly within this family. Life is so much sweeter when you come so close to losing someone.
We don't have a lot in the way of material things and we don't need them. It's only what's in the heart that matters. I think of the days we were in that small 10x20 room (may not be that big actually!) and had all we ever needed right there with us. EACH OTHER. That's it. God has such an awesome way of showing himself to us ... his gifts are in my children's smiles, their laughter, their jokes, even their tears. You can't begin to imagine how grateful I am for the experiences we have had since October of last year. It has been amazing....Simply amazing.
Wednesday, February 25, 2009
Possibilities
It is POSSIBLE that Kadin may get to come home this weekend. The Dr. called and said he has had no problems since his last issue ... Should I even be saying all this? I don't want to jinx the possibility of us being able to bring him home. I'm like any other mother that cares for her babies, I want to be with our child. I miss him so much ...
Will update when I have more to say. Thanks for your prayers and well wishes for us all.
Will update when I have more to say. Thanks for your prayers and well wishes for us all.
Monday, February 23, 2009
Still Numb
Talk about having the life kicked out of you ... I don't think I have recovered.
As you have probably read in my previous blog titled "Numb", we had a hard day yesterday. We knew yesterday was the day we were going to get to take our little miracle home! Danny and I woke up so excited. It was difficult to even get to sleep the night before. We spent the night before doing laundry and getting ready to leave our room at Ronald McDonald the next day after picking up our little man. We were joyful, happy, excited, couldn't believe the time had come ....
We got to the hospital and everything seemed fine. It was time for Kadin to have his bottle, so I sat down and fed him after changing him and taking his temperature. Again, he seemed just fine. I sat with him for awhile during the time that Danny was packing all his stuff. I got him to burp and talked to the nurses ... nothing out of the ordinary for the day, except that this was what we thought was going to be our last time to sit and visit with Kadin in NICU. An oral antibiotic was ordered so Danny and I left Kadin asleep to go fill the med at the pharmacy ... we also loaded the carseat in the truck and grabbed the monitors to take into the NICU to hook Kadin up to before leaving. We were gone about an hour and a half to get everything done.
Upon our return to the NICU, we walked into the unit where Kadin is and the nurses had long faces ????? What's wrong? The nurse taking care of Kadin walked over to me at the bedside and said "We aren't getting an order for him to be discharged. The Dr. will visit with you in just a few minutes." I was like .... "UUUhhhhhhhh.... with my jaw to the ground."
It was like someone had kicked me in the gut, knocked the wind right out of me, like I was having a very bad dream, it was unreal, I was not believing my ears ... I just sunk into the side of his little crib. I couldn't even cry. Disappointment at it's lowest. Then she proceeded to tell me ... it was garbled in some spots, but I did hear that he dropped his heart rate and had to be stimulated ... somewhere in there she said he turned blue after about 15 seconds and something something something .... I heard it all, but couldn't process it for a good long while. I just stood there staring at my precious baby. He looked wonderful. You would never have known he had an issue only a short time prior to our arrival.
Obviously, he wasn't ready to come home. They say how weird it is that a baby can do these things ... they can rock right along and be fine, but the day comes to go home and they "act up" preventing them from leaving. Most of the time it is a very good thing ... the nurse told Danny of a story of a daddy having to do CPR on his infant right after they left the hospital because he quit breathing. That isn't a place that either Danny nor I would want to be. We are thankful that things happen the way that they do, but the disappointment is beyond shattering to your heart.
So ... as most of you know, we traveled home without him. The Dr. suggested we go home, spend time with the kids here waiting on us, get the nursery ready, do more cleaning if we need to, get things settled and ready for Kadin (the bed is up and that is all that we have done!) so that is where we are ... home. It is so hard to not be getting up and going to the hospital. I am glad that I am here for the kids, they missed us so bad and we missed them. Life is in limbo right now and I'm holding it together. I can't wait to go back to FW and pick him up. I had said last time Dr. Stevener suggested we go home that I would never leave my baby ... but this time it seemed appropriate to take care of things at home and get settled back into our routine before Kadin comes. I can't imagine trying to get all this laundry done and rooms cleaned while getting up every 3 hours to feed the baby ... I would be exhausted.
So this is where we are and we sure could use more of those prayers that have so selflessly been said on our behalf. Danny called about Kadin already this morning and he is doing fine, no problems at all, and the nurse said half the time he is wiggling around and his canula is not even in his nose and he is still satting at 100 (can't get any better than that) so wow ... who knows! God has a way and I'm not one to question him about it ... just be thankful that we still have our son and he will be home soon . . .
As you have probably read in my previous blog titled "Numb", we had a hard day yesterday. We knew yesterday was the day we were going to get to take our little miracle home! Danny and I woke up so excited. It was difficult to even get to sleep the night before. We spent the night before doing laundry and getting ready to leave our room at Ronald McDonald the next day after picking up our little man. We were joyful, happy, excited, couldn't believe the time had come ....
We got to the hospital and everything seemed fine. It was time for Kadin to have his bottle, so I sat down and fed him after changing him and taking his temperature. Again, he seemed just fine. I sat with him for awhile during the time that Danny was packing all his stuff. I got him to burp and talked to the nurses ... nothing out of the ordinary for the day, except that this was what we thought was going to be our last time to sit and visit with Kadin in NICU. An oral antibiotic was ordered so Danny and I left Kadin asleep to go fill the med at the pharmacy ... we also loaded the carseat in the truck and grabbed the monitors to take into the NICU to hook Kadin up to before leaving. We were gone about an hour and a half to get everything done.
Upon our return to the NICU, we walked into the unit where Kadin is and the nurses had long faces ????? What's wrong? The nurse taking care of Kadin walked over to me at the bedside and said "We aren't getting an order for him to be discharged. The Dr. will visit with you in just a few minutes." I was like .... "UUUhhhhhhhh.... with my jaw to the ground."
It was like someone had kicked me in the gut, knocked the wind right out of me, like I was having a very bad dream, it was unreal, I was not believing my ears ... I just sunk into the side of his little crib. I couldn't even cry. Disappointment at it's lowest. Then she proceeded to tell me ... it was garbled in some spots, but I did hear that he dropped his heart rate and had to be stimulated ... somewhere in there she said he turned blue after about 15 seconds and something something something .... I heard it all, but couldn't process it for a good long while. I just stood there staring at my precious baby. He looked wonderful. You would never have known he had an issue only a short time prior to our arrival.
Obviously, he wasn't ready to come home. They say how weird it is that a baby can do these things ... they can rock right along and be fine, but the day comes to go home and they "act up" preventing them from leaving. Most of the time it is a very good thing ... the nurse told Danny of a story of a daddy having to do CPR on his infant right after they left the hospital because he quit breathing. That isn't a place that either Danny nor I would want to be. We are thankful that things happen the way that they do, but the disappointment is beyond shattering to your heart.
So ... as most of you know, we traveled home without him. The Dr. suggested we go home, spend time with the kids here waiting on us, get the nursery ready, do more cleaning if we need to, get things settled and ready for Kadin (the bed is up and that is all that we have done!) so that is where we are ... home. It is so hard to not be getting up and going to the hospital. I am glad that I am here for the kids, they missed us so bad and we missed them. Life is in limbo right now and I'm holding it together. I can't wait to go back to FW and pick him up. I had said last time Dr. Stevener suggested we go home that I would never leave my baby ... but this time it seemed appropriate to take care of things at home and get settled back into our routine before Kadin comes. I can't imagine trying to get all this laundry done and rooms cleaned while getting up every 3 hours to feed the baby ... I would be exhausted.
So this is where we are and we sure could use more of those prayers that have so selflessly been said on our behalf. Danny called about Kadin already this morning and he is doing fine, no problems at all, and the nurse said half the time he is wiggling around and his canula is not even in his nose and he is still satting at 100 (can't get any better than that) so wow ... who knows! God has a way and I'm not one to question him about it ... just be thankful that we still have our son and he will be home soon . . .
Numb (repost from 2/22/09 on myspace)
I am numb. I don't even know what to write here. Danny and I are on our way home. Kadin is still in NICU. We were one hour away from loading him in the truck when he had an A&B episode. Dr. Stevener suggested he remain hospitalized until he can go 5-7 days without doing this. We weren't told this information but he has had 3 episodes this week with this same thing but he brought himself back up within 30 seconds without stimulation from anyone. They said we weren't told cuz it wouldn't be something to keep us from going home. Regardless, it is information we would have liked and needed to have known. Had he done this on the road I wouldn't have known he had done it this week ..... you get the idea. Not much more to say right now. Like I said, I am numb. Danny is experiencing his own emotions too. The radio is playing. The ride home is long. Pray for Kadin and for us ... thanks.
Saturday, February 21, 2009
This just in ... and we're not telling Kadin ...
The only news I have for today ...
... The Dr. just told us we are going home tomorrow !!!!!!!
Praise GOD!
... The Dr. just told us we are going home tomorrow !!!!!!!
Praise GOD!
Friday, February 20, 2009
Past Due Update
Things are going ok for now. I am having to update on the RMH public computer which does not allow me to access myspace for some reason, but anyway ... things are looking great for us and here is a bit about what we are doing...
Kadin has done very well since his infection started on Sunday (or actually the day that it was discovered!) He was immediately started on IV antibiotics and a blood culture was taken. The next day when the surgeon made his rounds, he actually was able to get some "stuff" out of the site and sent that off for a culture also. Both of those cultures came back negative so he is really out of the woods on that. A couple of days after being on the antibiotics, the surgeon made rounds again and was able to squeeze what appeared to be a suture out of his infected site. YAY! AN EXPLANATION !!!!!! It was 10 days after his surgery so we were really quite surprised that he ended up having this issue, but anyway, it's healing very well. We are putting peroxide on it and keeping it covered with gauze and he is doing great.
His IV antibiotics stopped today and we will continue oral meds for a week after we go home. I know he will do fine with those, he has done well with all the meds I have given him orally. His breathing and heartrate are staying in a good zone, so we really just need to go home! He is eating very well, finishing every bottle he is given, burping like he should, loving to be held afterwards, tolerating his baths very well .... and the Dr.'s have said that if everything continues to go as it is right now thru tomorrow, we will probably be out of here on Sunday! I can't wait ... life finally begins outside of the world of NICU!
It's scary, for sure ... not sure how I will be able to handle it, but I don't have a choice! I did learn today that my folks are going to let me work from home so that is good !!!! There is a lot for us to do when we get home, plus, Kadin has Dr. appointments the first week of March so we will be right back up here then for those. His last appointment is March 12th and then he will be finished for awhile. I think we will be able to have referrals to San Angelo Dr.'s at that point. I am very excited about that.
There is a lot more going on in our lives, but I just don't have the time or energy to type about it all. Danny and I are very happy and doing well despite the circumstances we have faced over the past several months. We are stronger together than we have ever been, we lean on one another and are there for each other in absolutely everything ... When I am able to blog about all that I will, and post it on myspace and also on my other blog here on blogspot. Don't know when that will be ... maybe tomorrow I will take my laptop to the hospital and utilize their internet for a little while.
Darren is here this week so we got to see him! It is great, although he is here because he isn't doing as well as we wish for him to be .... it is still great to see him and his parents, and we got to meet his little sister also.
So, I guess look for an update from me later, gotta go now, husband is taking me out for a little while tonight since we are about to be at the "never go out" stage !!!! That's ok ... I can have just as much fun with him at home with the kids as I can going out alone - he just rocks like that!
Have a great weekend everyone .....
Kadin has done very well since his infection started on Sunday (or actually the day that it was discovered!) He was immediately started on IV antibiotics and a blood culture was taken. The next day when the surgeon made his rounds, he actually was able to get some "stuff" out of the site and sent that off for a culture also. Both of those cultures came back negative so he is really out of the woods on that. A couple of days after being on the antibiotics, the surgeon made rounds again and was able to squeeze what appeared to be a suture out of his infected site. YAY! AN EXPLANATION !!!!!! It was 10 days after his surgery so we were really quite surprised that he ended up having this issue, but anyway, it's healing very well. We are putting peroxide on it and keeping it covered with gauze and he is doing great.
His IV antibiotics stopped today and we will continue oral meds for a week after we go home. I know he will do fine with those, he has done well with all the meds I have given him orally. His breathing and heartrate are staying in a good zone, so we really just need to go home! He is eating very well, finishing every bottle he is given, burping like he should, loving to be held afterwards, tolerating his baths very well .... and the Dr.'s have said that if everything continues to go as it is right now thru tomorrow, we will probably be out of here on Sunday! I can't wait ... life finally begins outside of the world of NICU!
It's scary, for sure ... not sure how I will be able to handle it, but I don't have a choice! I did learn today that my folks are going to let me work from home so that is good !!!! There is a lot for us to do when we get home, plus, Kadin has Dr. appointments the first week of March so we will be right back up here then for those. His last appointment is March 12th and then he will be finished for awhile. I think we will be able to have referrals to San Angelo Dr.'s at that point. I am very excited about that.
There is a lot more going on in our lives, but I just don't have the time or energy to type about it all. Danny and I are very happy and doing well despite the circumstances we have faced over the past several months. We are stronger together than we have ever been, we lean on one another and are there for each other in absolutely everything ... When I am able to blog about all that I will, and post it on myspace and also on my other blog here on blogspot. Don't know when that will be ... maybe tomorrow I will take my laptop to the hospital and utilize their internet for a little while.
Darren is here this week so we got to see him! It is great, although he is here because he isn't doing as well as we wish for him to be .... it is still great to see him and his parents, and we got to meet his little sister also.
So, I guess look for an update from me later, gotta go now, husband is taking me out for a little while tonight since we are about to be at the "never go out" stage !!!! That's ok ... I can have just as much fun with him at home with the kids as I can going out alone - he just rocks like that!
Have a great weekend everyone .....
Sunday, February 15, 2009
Another Delay
This will be quick. We are moving back to Ronald McDonald House again. Kadin has an infection in his hernia surgery site (just one) and they are starting antibiotics tonight to fight it. They said we should be here for another 5-7 days. I am just devestated, but I understand.
I won't have my computer in the room but you can text me if you wish .... Thanks for your prayers.
I won't have my computer in the room but you can text me if you wish .... Thanks for your prayers.
Someone Always Has It Worse Than You ...
This is a valuable lesson that we have learned while being away from home for the past almost 4 months! (Feb. 27 will be 4 months for me!)
You meet so many people when you are thrust into these types of situations. I know being in the NICU is hard no matter how long your stay but there are people that always have it worse than you do ...
I remember giggling a few weeks ago (to myself of course!) because as I was scrubbing in, a very young couple was next to me talking about how hard it was going to be for them to be here for the week. There was nothing seriously wrong with their baby, they knew they were going home within a few days, yet they were so distraught that they were having to be here. I giggled ... mostly out of nerves, but somewhat because I wanted to say the right thing to them ... I ended up only saying that I prayed their stay was quick one and that their baby was alright.
This is one reason I have not griped about our situation ... I have never questioned "Why me, God?" There are plenty of reasons why we have gone thru what we have gone thru, there are many lessons that have been learned, there is a part of life I never knew existed and we have found it ... and after talking to many people that have been in the hospital and at the Ronald McDonald House, it didn't take long to know that SOMEONE ALWAYS HAS IT WORSE THAN YOU DO!
We talked to a mom in the NICU the other day (who also stayed at RMH with us) who has not only been thru the NICU this time at age 39, but also 21 years ago with her oldest child, and then 4 years later she actually LOST a daughter ... OH MY! My heart just sank when she was telling us. She is an old "pro" at this, but it never gets easy.
We are so thankful for our experience with Kadin coming out as well as it did. He is going home only on oxygen and a small dose of diuretic. All of that will possibly be stopped in one month when we see the pulmonologist anyway ... it's not like he will be on it for months and months and months. He just needs to grow a little bit over the next month. Things could have been soooo much worse for him.
We are so blessed and have been so blessed by meeting so many people thru this journey. I can't even begin to name all the circumstances, but we are very fortunate. We met another mother in our CPR class that told us last night her baby is terminally ill. It broke my heart. His muscles will never develop like they should, which includes his lungs and he will eventually pass. She is so strong and devoted to him. She asked us if we would like to meet her baby. He is precious. You would never know by looking at him that anything is wrong. His beautiful blue eyes just roam around looking at you .... he was a full term baby, too. I remember seeing her in the same room as us (for critically ill babies) and she broke down a lot. I prayed for her from my little section of the room .... and thanked God that we didn't have it as bad as it could have been for us.
I can't begin to explain what this situation has done for my heart. I have always been a tender person, but I am much more tender now. There are still a lot of things that I won't tolerate, but I do believe in goodness and mercy in this world much more than I did before. I believe in love a million times more than I did when we came here. I believe in mankind like I never have before .... I am truly humbled by everything we have been thru in the past 4 months and pray God will continue to use me and our situation for the good of others in our path .....
You meet so many people when you are thrust into these types of situations. I know being in the NICU is hard no matter how long your stay but there are people that always have it worse than you do ...
I remember giggling a few weeks ago (to myself of course!) because as I was scrubbing in, a very young couple was next to me talking about how hard it was going to be for them to be here for the week. There was nothing seriously wrong with their baby, they knew they were going home within a few days, yet they were so distraught that they were having to be here. I giggled ... mostly out of nerves, but somewhat because I wanted to say the right thing to them ... I ended up only saying that I prayed their stay was quick one and that their baby was alright.
This is one reason I have not griped about our situation ... I have never questioned "Why me, God?" There are plenty of reasons why we have gone thru what we have gone thru, there are many lessons that have been learned, there is a part of life I never knew existed and we have found it ... and after talking to many people that have been in the hospital and at the Ronald McDonald House, it didn't take long to know that SOMEONE ALWAYS HAS IT WORSE THAN YOU DO!
We talked to a mom in the NICU the other day (who also stayed at RMH with us) who has not only been thru the NICU this time at age 39, but also 21 years ago with her oldest child, and then 4 years later she actually LOST a daughter ... OH MY! My heart just sank when she was telling us. She is an old "pro" at this, but it never gets easy.
We are so thankful for our experience with Kadin coming out as well as it did. He is going home only on oxygen and a small dose of diuretic. All of that will possibly be stopped in one month when we see the pulmonologist anyway ... it's not like he will be on it for months and months and months. He just needs to grow a little bit over the next month. Things could have been soooo much worse for him.
We are so blessed and have been so blessed by meeting so many people thru this journey. I can't even begin to name all the circumstances, but we are very fortunate. We met another mother in our CPR class that told us last night her baby is terminally ill. It broke my heart. His muscles will never develop like they should, which includes his lungs and he will eventually pass. She is so strong and devoted to him. She asked us if we would like to meet her baby. He is precious. You would never know by looking at him that anything is wrong. His beautiful blue eyes just roam around looking at you .... he was a full term baby, too. I remember seeing her in the same room as us (for critically ill babies) and she broke down a lot. I prayed for her from my little section of the room .... and thanked God that we didn't have it as bad as it could have been for us.
I can't begin to explain what this situation has done for my heart. I have always been a tender person, but I am much more tender now. There are still a lot of things that I won't tolerate, but I do believe in goodness and mercy in this world much more than I did before. I believe in love a million times more than I did when we came here. I believe in mankind like I never have before .... I am truly humbled by everything we have been thru in the past 4 months and pray God will continue to use me and our situation for the good of others in our path .....
Saturday, February 14, 2009
Rooming In - Day One
It has almost been 24 hours and quite frankly, I am exhausted. I remember how difficult it was to have a newborn and really, that is what we consider Kadin at this point. He will "catch up" at about 2 years of age, but for now, he is a newborn. It wasn't that long ago that I was having to get up every 3 hours to pump the liquid gold, but now, I have several new steps in the process of feeding the baby. I get to prepare his formula for his bottles, change him, take his temperature, and chart it all, too. That happens every 3 hours (8, 11, 2, and 5) so I get 2 hours in between to hold him or sleep or eat or shower or whatever ... They have him on a good schedule here and we can't deviate from it at all unless our pediatrician says we can. We will be seeing him on Thursday after we go home...
We will be leaving here on Monday morning after Kadin sees the eye Dr. We thought we were going to have to go to his Arlington office but he is coming here to the hospital and then we will be able to go ... that is, if there are no problems. It is going to be a long ride home. We have to stop every little bit and take Kadin out of the seat, change him, feed him ... basically stick to his routine while we are on the road. Then we have to stop an hour before we get home and get the oxygen concentrator for the house. It will be nice to finally get home. I have missed my kids ssooo much this week. I know they had to go home when they did or we would not be able to be doing what we are right now.
I have been having some weird dreams. I am not sure where they are coming from but they bother me. I hope next time I lay down and close my eyes I won't be having any crazy dreams.
So many people have stopped by our room to say "bye" to us and many have also said they will stop by again tomorrow or Monday morning before we leave. It makes you feel good that after staying here for so long, people express how happy they are for you that you are going home. Some of the nurses were actually surprised to see our name out on the board outside of our room!
I'm gonna close now ... I only have an hour and a half left before I feed again. And I want another nap, lol. No constant sleep for me for a long time!
We will be leaving here on Monday morning after Kadin sees the eye Dr. We thought we were going to have to go to his Arlington office but he is coming here to the hospital and then we will be able to go ... that is, if there are no problems. It is going to be a long ride home. We have to stop every little bit and take Kadin out of the seat, change him, feed him ... basically stick to his routine while we are on the road. Then we have to stop an hour before we get home and get the oxygen concentrator for the house. It will be nice to finally get home. I have missed my kids ssooo much this week. I know they had to go home when they did or we would not be able to be doing what we are right now.
I have been having some weird dreams. I am not sure where they are coming from but they bother me. I hope next time I lay down and close my eyes I won't be having any crazy dreams.
So many people have stopped by our room to say "bye" to us and many have also said they will stop by again tomorrow or Monday morning before we leave. It makes you feel good that after staying here for so long, people express how happy they are for you that you are going home. Some of the nurses were actually surprised to see our name out on the board outside of our room!
I'm gonna close now ... I only have an hour and a half left before I feed again. And I want another nap, lol. No constant sleep for me for a long time!
Friday, February 13, 2009
This is the end ... and also a new beginning!
We are rooming in tomorrow at the hospital!
Yes, it has finally come. We are going home this weekend and we couldn't be more excited!
Kadin is going home on .25 liters of oxygen. It's just a whiff, but he still needs it. So, this will probably be my last blog until we get home, unless I am able to have my computer set up in the hospital while we room-in with him.
He has changed so much in the last 3 or 4 days. He is eating well, his oxygen is great, he is sleeping well, moving like he should ... everything is just fine. We have been busy making Dr. appts and finalizing a LOT of things. Life at home is going to be much different for us for the next year at least, so we have to make the best of it and just go with it.
Tonight we attended a CPR class. I pray we never have to use it, but if we do, we are prepared.
We have already taken the kids back home and re-enrolled them in school. They are excited and to tell you the truth, so were we ... because of how excited they are about being back HOME and with their friends!
I can't believe it is actually here ... it's been 3 and a half months since I was admitted to the 3rd floor for high risk pregnancies! I couldn't see my way thru it all for a long while, but now, it's hard to believe that we've come this far!
I have said it what seems like a hundred times, but I know that we wouldn't have made it without the love and prayers of so many people. We are eternally grateful for the prayers and well wishes of all of you who have taken the time to keep us in your thoughts and ask our mighty GOD to perform miracles in our lives! We would not be bringing our little angel home with us this weekend if it weren't for a merciful God who is faithful to those who love him! So THANK YOU from the depths of our hearts and know that your unselfishness will be remembered forever and always......
Until we meet again on this journey . . . . . .
Yes, it has finally come. We are going home this weekend and we couldn't be more excited!
Kadin is going home on .25 liters of oxygen. It's just a whiff, but he still needs it. So, this will probably be my last blog until we get home, unless I am able to have my computer set up in the hospital while we room-in with him.
He has changed so much in the last 3 or 4 days. He is eating well, his oxygen is great, he is sleeping well, moving like he should ... everything is just fine. We have been busy making Dr. appts and finalizing a LOT of things. Life at home is going to be much different for us for the next year at least, so we have to make the best of it and just go with it.
Tonight we attended a CPR class. I pray we never have to use it, but if we do, we are prepared.
We have already taken the kids back home and re-enrolled them in school. They are excited and to tell you the truth, so were we ... because of how excited they are about being back HOME and with their friends!
I can't believe it is actually here ... it's been 3 and a half months since I was admitted to the 3rd floor for high risk pregnancies! I couldn't see my way thru it all for a long while, but now, it's hard to believe that we've come this far!
I have said it what seems like a hundred times, but I know that we wouldn't have made it without the love and prayers of so many people. We are eternally grateful for the prayers and well wishes of all of you who have taken the time to keep us in your thoughts and ask our mighty GOD to perform miracles in our lives! We would not be bringing our little angel home with us this weekend if it weren't for a merciful God who is faithful to those who love him! So THANK YOU from the depths of our hearts and know that your unselfishness will be remembered forever and always......
Until we meet again on this journey . . . . . .
Tuesday, February 10, 2009
The Latest
I have failed now to post the last 2 updates from myspace on here ... I apologize! If you are on my myspace you can go read them there and if not, well ... I'm not sure when I will be able to copy them over. I am pressed for time right now.
We are going to be able to go home very soon. We are waiting on a few minor accomplishments (well, they can be major, but he's accomplished them before, just has to do it again since surgery!)
I apologize for not getting the updates here ... our internet at RMH has been down and I have posted some from my phone ... it doesn't allow for the copy and paste feature of such magnitude!
Keep praying please ....
We are going to be able to go home very soon. We are waiting on a few minor accomplishments (well, they can be major, but he's accomplished them before, just has to do it again since surgery!)
I apologize for not getting the updates here ... our internet at RMH has been down and I have posted some from my phone ... it doesn't allow for the copy and paste feature of such magnitude!
Keep praying please ....
Thursday, February 5, 2009
Kadin's Surgery and Recovery
Wow, what a long day we have had.
When your 3 month old (or any child for that matter) goes thru anything that will cause stress, it really wears on you. You think of all kinds of things. I worried so much last night I don't think I rested while I slept. I woke up this morning solemn about everything because I just couldn't get my baby off my mind. There he was, laying in the hospital, not having a clue what is going on in the world with him. He knows hunger, wet/dirty diapers, and love from his family. He knows the occasional IV, stick in the foot, nurses talking to him and caring for him, respiratory treatments, etc .... but SURGERY? Ok, so he could be considered a veteran after having had heart surgery when he was 10 days old, but really ... again? It was necessary and I am grateful, but just dealing with the stress of hurting because of what he is going thru is very draining. I am wiped out and all I did was sit and worry today!
We got to the NICU about 8:45am or so. We had been told two different things about when his surgery would take place so we decided to get there as soon as possible. We weren't there but about 15 minutes and the surgery team was calling for him. We (or our fabulous nurse Courtney!) had to administer 3 different types of eye drops in his eyes and do it 3 different times. So, we did that and he did not put up any kind of fight. He was resting in my arms. Then the RT came in with his transport bed and I put him in his bed. He was going to town on his pacifier because he had not had any formula since 3am. He had pedialyte at 6am and that was it. So Daddy and I walked from our hospital to Cook's to deliver him to the surgery team. That was all too quick .... the worry set in even more, but I felt ok about it anyway since he needed everything that was done today.
He had laser eye surgery to correct ROP in only one of his eyes. The surgeon showed us pictures of his eyes (very cool pictures, by the way!) that showed how the blood vessels were growing and then showed us what he did to help correct it. Kadin will be examined again in a week and then again in 2 weeks to see if he needs another treatment. The laser surgery was the second surgery he went thru today ... thank goodness they put him to sleep only once and he will recover only once.
First though, they repaired his hernia. He had it on both sides of his groin area and tho it wasn't really a problem, we didn't want it to get that way, and luckily he never developed any issues from it. He has two little bandaids in that area now and there is a chance they could come back but I understood it isn't a big chance.
He came off the ventilator fairly quickly today after the surgery. I was told they gave him some meds to reverse the effects of the anesthesia but when we left this evening he was still suffering thru some of those effects. He was not wanting to breathe for being sooo relaxed. He is now back on the bubble cpap until the effects of the meds wear off, hopefully by tomorrow. He is also not getting any formula either, so little man is going to be CUH-RANKY when he fully wakes up.
So now, we are resting at the room. We finally ate at about 7 tonight and I was so exhausted I couldn't even finish my dinner.
I am just ready for him to recover and get back to the growing he is doing and the process to getting back home. I am so ready ..... *sigh*
When your 3 month old (or any child for that matter) goes thru anything that will cause stress, it really wears on you. You think of all kinds of things. I worried so much last night I don't think I rested while I slept. I woke up this morning solemn about everything because I just couldn't get my baby off my mind. There he was, laying in the hospital, not having a clue what is going on in the world with him. He knows hunger, wet/dirty diapers, and love from his family. He knows the occasional IV, stick in the foot, nurses talking to him and caring for him, respiratory treatments, etc .... but SURGERY? Ok, so he could be considered a veteran after having had heart surgery when he was 10 days old, but really ... again? It was necessary and I am grateful, but just dealing with the stress of hurting because of what he is going thru is very draining. I am wiped out and all I did was sit and worry today!
We got to the NICU about 8:45am or so. We had been told two different things about when his surgery would take place so we decided to get there as soon as possible. We weren't there but about 15 minutes and the surgery team was calling for him. We (or our fabulous nurse Courtney!) had to administer 3 different types of eye drops in his eyes and do it 3 different times. So, we did that and he did not put up any kind of fight. He was resting in my arms. Then the RT came in with his transport bed and I put him in his bed. He was going to town on his pacifier because he had not had any formula since 3am. He had pedialyte at 6am and that was it. So Daddy and I walked from our hospital to Cook's to deliver him to the surgery team. That was all too quick .... the worry set in even more, but I felt ok about it anyway since he needed everything that was done today.
He had laser eye surgery to correct ROP in only one of his eyes. The surgeon showed us pictures of his eyes (very cool pictures, by the way!) that showed how the blood vessels were growing and then showed us what he did to help correct it. Kadin will be examined again in a week and then again in 2 weeks to see if he needs another treatment. The laser surgery was the second surgery he went thru today ... thank goodness they put him to sleep only once and he will recover only once.
First though, they repaired his hernia. He had it on both sides of his groin area and tho it wasn't really a problem, we didn't want it to get that way, and luckily he never developed any issues from it. He has two little bandaids in that area now and there is a chance they could come back but I understood it isn't a big chance.
He came off the ventilator fairly quickly today after the surgery. I was told they gave him some meds to reverse the effects of the anesthesia but when we left this evening he was still suffering thru some of those effects. He was not wanting to breathe for being sooo relaxed. He is now back on the bubble cpap until the effects of the meds wear off, hopefully by tomorrow. He is also not getting any formula either, so little man is going to be CUH-RANKY when he fully wakes up.
So now, we are resting at the room. We finally ate at about 7 tonight and I was so exhausted I couldn't even finish my dinner.
I am just ready for him to recover and get back to the growing he is doing and the process to getting back home. I am so ready ..... *sigh*
Surgery
Kadin has been in surgery since 10 am. They will come get us to see him as soon as its over. The plan for recovery was modified a little bit. I will elaborate on that when I can type more. Please pray for him ... thanks!
Tuesday, February 3, 2009
Eye Surgery Scheduled
I visited with our neo today and he got on the phone right away with the eye Dr. that has been following Kadin. Then our Dr. told me that Kadin is in the window/time frame for having the corrective surgery for his ROP. So I got on the phone with the Dr. and he explained a few things to me and why this surgery is necessary. I had read all the literature they have given me and really expected it to be a very serious issue ... While I don't minimize the severity of what is happening, I do feel more relaxed about the surgery possibly being necessary on only one eye instead of both. The left eye has progressed to definitely need correction and the right eye is still kinda on the fence. He said that we will perform the laser treatment on the left eye and take a closer look at the right eye while he is in surgery. If it looks like it might be worsening they will go ahead with the corrective surgery on the right eye. The Neo also mentioned that we could possibly get a surgeon in there to do the hernia surgery at the same time. Kadin's respiratory issues are cause for him to have to have this surgery on the breathing machine and not on the cpap. He has been having some a's & b's the last couple of days and actually had to be "bagged" yesterday after an eye exam. It's fairly traumatic for the babies. He is still eating well, but was having some issues with not wanting to breathe for the eagerness to take in his feed ... He was bumped up to a higher pressure today - from 1.5 to 4 and his oxygen is a little higher also just to help compensate so he doesn't have to work so hard right now. His blood gas was good today and they did an xray also because it sounded like he had a little fluid in his lungs. He will be given the meds again to pull that fluid off .... I expect him to lose a little weight, but otherwise he is doing really well. (when I say that, I am speaking in relation to how a 24-weeker normally does ... it's not always great, but for their condition, it is pretty miraculous!)
The surgery will be within the next 2 days, just don't know when exactly yet. I will keep you all informed as quickly as I can and if I can't then I will get someone else to come update! Thanks for your prayers in everything and blessings to you all ...
Love,
Leslie
The surgery will be within the next 2 days, just don't know when exactly yet. I will keep you all informed as quickly as I can and if I can't then I will get someone else to come update! Thanks for your prayers in everything and blessings to you all ...
Love,
Leslie
Sunday, February 1, 2009
Just as I was posting this ....
.... my husband came in the door saying that Kadin is now on ALL nipple feeds and has moved down to 1.5 liters on the oxygen. He is staying between 23 and 25% oxygen thru the canula ... so dang, this is moving quickly!
Just had to get that on here since I may not have a chance to come back to do it today.....
Just had to get that on here since I may not have a chance to come back to do it today.....
Closer to Home
I know my updates are coming fewer and further between, but we have been busy! Since Kadin has started taking 2 out of every 3 bottles, we are there a lot more often. I was first shown how to feed him with him sitting up, but then another nurse showed me the "sideline" position and both Kadin and I love it much better. He is positioned more like he is at the breast and since this is very natural for him, he is finishing his feed in about 12 minutes. Amazing! He is still taking 47ml, which is 13ml shy of 2 ounces! He doesn't go up on his feeds quite as quickly as he once was, but he is doing very well and although he hasn't mastered bottle feeding at this point, he knows when it's time and tries his best!
We had a couple of episodes yesterday with his feed where his heartrate dropped and he quit breathing. It was so scary. My husband had never seen our baby turn blue, until yesterday. I have never liked being in there with him when it happens, but the nurse was able to help him recover from it and then he fell asleep from exhaustion afterwards! I had worried maybe he was getting sick or something and called a few times after that to check on him and he seemed to be doing just fine.
We had a lengthy conversation with his Dr. the other day. One of the first things she said was that it was her last day with Kadin, it was now her turn to rotate to Cook's and we were getting a new Dr.! My jaw dropped ... So we have yet to meet our new Dr.!
She was very encouraging in everything we talked about, though. She said it looks like maybe we will go home in about 3 weeks. BUT ... that's just a guess. It is not anything definite. We have to wait and see how Kadin is doing, of course. He is already down on his liters ... down to 2 now, from 3. He has to be at about a half a liter before he can go home. She said she might even project that he could be one that goes home without oxygen! WOW! She said he is doing THAT well. That is exciting for me to hear.....
I had asked what changed from us being told it could be 2-3 more months outside of his due date of February 23 ??? She said we are always given the worst case senario ... i.e. when we were always told "IF" he makes it out of the hospital. But as I wrote in another blog, he has exceeded all expectations of the medical staff and is doing very well! He loves not having all that junk on his face and has developed quite a little personality! I miss him more than ever when we aren't with him at the hospital. We have been able to really bond lately with his feedings.
We need to go buy a carseat now. He will have to have a carseat test and a hearing test before he goes home. He will also need to have hernia surgery and recover a few days from that, too. He will follow up with a pulmonologist and a urologist about once a month after we go home and we will see how he does. His is still on the fence with the eyes and it is to the point they think he will recover on his own but still can't make that call. If they seem to be getting worse, he will then have to have the eye surgery before he goes home. I believe the case worker said that there is a pediatric eye surgeon in Angelo, but not the others, so we will have to travel to FW for those visits. It is possible, depending on how well he does by the first visit, that our visits will be spread out a little more than once a month!
If he doesn't do well and it looks like he is going to have to have more care than we can handle with driving long distance, we have been encouraged to make a move closer to FW. I really don't want anyone other than the people here to take care of him if it gets to where we have to have more care .... but that isn't looking like it will happen so I am not going to even think about all that right now.
Just as it was an adjustment to come here and not get to go home, it is going to be an adjustment going home. I miss our home horribly, but there are things about being home that I do not miss and am not looking forward to being back around. That's for another blog, lol .... I talked to our Dr. about my working and she said it would be very dangerous for Kadin to be out with me at in my office, so I am going to have to figure some way I can work from home. There is a lot to do to catch up the books at my folks' business. I know it can be done and it will be no problem with living just 2 blocks from the office, but having him there where there is a lot of dust will be a big issue for his lungs, she said. And she said absolutely do not have him around any smoking. Ok........sigh......... lots of do's and don'ts headed our way, but it's all worth it for him to remain healthy and grow like he needs to.
My little mama .... she is starting cleaning on our house today. She is going to do the things that need to be done before we can go home, like bleach everything, shampoo, etc .... I know I owe her and my dad BIG TIME for all they have done for me and for us thru all of this, but how can you ever repay anything like that ??? In my opinion, "Thank You" is not enough. Guess I will have to figure it out ....
Well, that's about it for the update today. Kadin was last 6 pounds 2.2 ounces. His growing has slowed down a little bit because he is more active these days, and being more active burns calories, so he has slowed down .... the feeds are part of why he has slowed down, he has to work at getting his food now! We will be going to see him again in just a little bit ...
For now, I've gotta take something for these allergy and sinus issues I woke up with this morning. I hate it!!!! No fever, just sneezing and blowing my nose type of stuff .... worries me, but I gotta keep going.
Have a great and blessed Sunday people ....
We had a couple of episodes yesterday with his feed where his heartrate dropped and he quit breathing. It was so scary. My husband had never seen our baby turn blue, until yesterday. I have never liked being in there with him when it happens, but the nurse was able to help him recover from it and then he fell asleep from exhaustion afterwards! I had worried maybe he was getting sick or something and called a few times after that to check on him and he seemed to be doing just fine.
We had a lengthy conversation with his Dr. the other day. One of the first things she said was that it was her last day with Kadin, it was now her turn to rotate to Cook's and we were getting a new Dr.! My jaw dropped ... So we have yet to meet our new Dr.!
She was very encouraging in everything we talked about, though. She said it looks like maybe we will go home in about 3 weeks. BUT ... that's just a guess. It is not anything definite. We have to wait and see how Kadin is doing, of course. He is already down on his liters ... down to 2 now, from 3. He has to be at about a half a liter before he can go home. She said she might even project that he could be one that goes home without oxygen! WOW! She said he is doing THAT well. That is exciting for me to hear.....
I had asked what changed from us being told it could be 2-3 more months outside of his due date of February 23 ??? She said we are always given the worst case senario ... i.e. when we were always told "IF" he makes it out of the hospital. But as I wrote in another blog, he has exceeded all expectations of the medical staff and is doing very well! He loves not having all that junk on his face and has developed quite a little personality! I miss him more than ever when we aren't with him at the hospital. We have been able to really bond lately with his feedings.
We need to go buy a carseat now. He will have to have a carseat test and a hearing test before he goes home. He will also need to have hernia surgery and recover a few days from that, too. He will follow up with a pulmonologist and a urologist about once a month after we go home and we will see how he does. His is still on the fence with the eyes and it is to the point they think he will recover on his own but still can't make that call. If they seem to be getting worse, he will then have to have the eye surgery before he goes home. I believe the case worker said that there is a pediatric eye surgeon in Angelo, but not the others, so we will have to travel to FW for those visits. It is possible, depending on how well he does by the first visit, that our visits will be spread out a little more than once a month!
If he doesn't do well and it looks like he is going to have to have more care than we can handle with driving long distance, we have been encouraged to make a move closer to FW. I really don't want anyone other than the people here to take care of him if it gets to where we have to have more care .... but that isn't looking like it will happen so I am not going to even think about all that right now.
Just as it was an adjustment to come here and not get to go home, it is going to be an adjustment going home. I miss our home horribly, but there are things about being home that I do not miss and am not looking forward to being back around. That's for another blog, lol .... I talked to our Dr. about my working and she said it would be very dangerous for Kadin to be out with me at in my office, so I am going to have to figure some way I can work from home. There is a lot to do to catch up the books at my folks' business. I know it can be done and it will be no problem with living just 2 blocks from the office, but having him there where there is a lot of dust will be a big issue for his lungs, she said. And she said absolutely do not have him around any smoking. Ok........sigh......... lots of do's and don'ts headed our way, but it's all worth it for him to remain healthy and grow like he needs to.
My little mama .... she is starting cleaning on our house today. She is going to do the things that need to be done before we can go home, like bleach everything, shampoo, etc .... I know I owe her and my dad BIG TIME for all they have done for me and for us thru all of this, but how can you ever repay anything like that ??? In my opinion, "Thank You" is not enough. Guess I will have to figure it out ....
Well, that's about it for the update today. Kadin was last 6 pounds 2.2 ounces. His growing has slowed down a little bit because he is more active these days, and being more active burns calories, so he has slowed down .... the feeds are part of why he has slowed down, he has to work at getting his food now! We will be going to see him again in just a little bit ...
For now, I've gotta take something for these allergy and sinus issues I woke up with this morning. I hate it!!!! No fever, just sneezing and blowing my nose type of stuff .... worries me, but I gotta keep going.
Have a great and blessed Sunday people ....
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