I figured that I would break this update into two different posts so there wasn't a novel to read all at once!
Things are going pretty well with the boys. Elliot had his check up and shots last week and did very well. He is up to 12lbs 6oz already! He can wear Noah's diapers now! He is doing great at night and will go for a 7 hour stretch before he wants to eat again. It feels great to be getting more sleep and I surely didn't anticipate it happening so soon! He is super smiley and making all sorts of happy baby sounds.
Zane is good as usual and keeping very busy. He only has a month left of school, which does not seem possible. He will have the next two months free to enjoy his summer before football starts. Right now he is getting ready for the school triathlon in two weeks. He has to ride his bike for 2miles, run for 1/4 of a mile and swim for 1/4 of a mile. He is really excited about it! He is still active in cub scouts and lots of activities for school. There is always someone at the door after school and on weekends wanting him to come out and play and the phone is always ringing! There are no boys in the neighborhood so its just girls to play with. Zane doesn't seem to mind at all...:)
We are loving the weather!! We are outside as much as we can be. Noah loves being out in the dirt playing in his water table. He and Zane found a bag of water balloons left over from last summer that have kept them both very entertained!
Monday, April 27, 2009
Friday, April 10, 2009
Feeding Frustrations
So our big plan to start weaning Noah from his tube feeds has backfired...
For the last three weeks or so, Noah's oral intake was starting to suffer and is now back down to almost nothing. It has diminished into only taking a bite or two at a meal and often refusing anything. We have no idea what is causing this and can't understand why backing down on tube feeds has not stimulated any sort of increase in appetite. He had a check-up with his pulmonologist this week along with a chest x-ray. I was terrified that the x-ray was going to show reherniation or something that would account for the change in appetite, but thankfully the x-ray actually looked pretty good! The Dr was not happy about his weight and I tried to explain that we were trying to wean the feeds because he was eating so well just a few weeks ago. We have found that every Dr, according to their specialty, has a different opinion when it comes to feeding. His pulmonologist was not in agreement with the wean and actually wanted us to increase his calorie intake by about 400cal per day. We talked to the dietitian up in Ann Arbor that we have been working with and told her of the Dr's concerns, Noah's current weight and length as well as his aversion to food these past few weeks. Needless to say, we are back at square one. Not only are we increasing his nightly feeds, but we are back to trying to bolus him through the G portion 3 times a day along with the water bolus as well. We are going to do this for a few more weeks and try and get some more weight on him, and go from there. I know that this increase in calories is not going to do anything for his appetite, but I also know that it is important for him to have the proper nutrition and fluids. I just wish I could figure out what causes the inconsistency with his appetite. Despite his feeding issues, he is doing great. He is walking everywhere and launching into the terrible two's. His speech and communication skills seem to improve everyday. I am in awe of this little person he is becoming with his own personality and character.
Zane is doing great and had an AWESOME time in Seattle! He really wants to move there now! Thanks to Kelly and Jeff and the boys for showing him the sights in their new home and giving him such a memorable Spring Break! He hasn't stopped talking about it since he got home! I am so glad he got to have that experience. He is now more traveled than I am!
Elliot is doing well and thriving! He is getting to be such a roly poly! He will have his two month check-up and shots this week:( Poor guy! He has developed a dashing smile that melts the heart and will push up on his arms and roll from his tummy to his back. Noah is sure to shower him with kisses and hugs all day long!
A quick "proud Momma" moment...the other day I took all three of them to the post office. I was happy that no one was there when we first walked in, fearing that the boys would be unruly. (I swear they can smell my fear!) Within minutes there were like 15 people in line. I was trying to juggle my items to ship and Elliot's car seat, all the while praying that Noah would behave. I glanced back at Zane and he had Noah sitting quietly by the counter, his arm around Noah to keep him from bolting and each with a sucker in their mouth. Zane said, "I got it Mom, don't worry". I don't think my heart could have gotten any bigger at that moment!
Have a happy and blessed Easter!
Friday, March 27, 2009
Another trip to the OR!
Didn't I just get done posting good news about everyone? I should have known someone would start acting up!
I had mentioned that Noah was being hooked up to his tube feeds after dinner and wearing his backpack. Well, Wednesday night he was crawling around on the floor playing after dinner. He heard the garage door go up as Brian was getting home from work and started crawling over to the door. Somehow, he got the part of the tubing hooked under the door and pulled his g-j tube out! Ouch! I am sure it didn't feel good in the least but he only cried for a minute. Luckily we had an emergency Foley cath to put in so the hole would at least stay open and we could get fluids in. Being that it was already 8:30pm, there wasn't much we could do for the night. We called U of M and they were able to book him OR time for Thursday. We left about 5am and headed to Ann Arbor. We had to wait to be squeezed in and they finally took him back around 11am. The procedure went well and he was done in about 45 min. They had to dilate the opening a bit more because it had already closed around the Foley cath, so his having some discomfort from that. He did have some trouble coming out of the anesthesia and was in recovery for several hours. He doesn't handle narcotics well and they had given him some fentynl for the pain. I think this had alot to with the problems afterwards. He would wake up, thrash around quite a bit and his sats would drop and he would turn blue. Once he calmed down and with just a bit of blow by o2 he would be fine again. This lasted for awhile but he was much better after a few hours. By the time we left the only thing he was upset about was the bandaid they had put on his hand when they took out his IV. While Noah was busy having his new tube placed, Elliot took care of Noah's usual social obligations. He chatted with all the clinic nurses and even let Dr Mychaliska hold him for awhile and of course got in some cuddle time with Jeannie. They all agreed he has to behave better than his brother!
So, now Noah is sporting a shiny new g-j button and we are back to the drawing board with tube feed weaning. I don't think we are going to attempt the back pack again anytime soon. He is just too mobile for this approach and we don't want any more of these little accidents! Realistically, after talking with everyone up in Ann Arbor, it will be at least a year before they think he is going to be ready. The weaning process will take awhile and then he still has to prove he can go without tube feeds and maintain his weight for a long time before they would consider taking it out. I am hoping once he is less dependant on the feeds we can switch back to the g-tube. At least then we can switch out the button ourselves without putting him under anesthesia like the g-j.
Have a great weekend and as always, thanks for checking on us!
I had mentioned that Noah was being hooked up to his tube feeds after dinner and wearing his backpack. Well, Wednesday night he was crawling around on the floor playing after dinner. He heard the garage door go up as Brian was getting home from work and started crawling over to the door. Somehow, he got the part of the tubing hooked under the door and pulled his g-j tube out! Ouch! I am sure it didn't feel good in the least but he only cried for a minute. Luckily we had an emergency Foley cath to put in so the hole would at least stay open and we could get fluids in. Being that it was already 8:30pm, there wasn't much we could do for the night. We called U of M and they were able to book him OR time for Thursday. We left about 5am and headed to Ann Arbor. We had to wait to be squeezed in and they finally took him back around 11am. The procedure went well and he was done in about 45 min. They had to dilate the opening a bit more because it had already closed around the Foley cath, so his having some discomfort from that. He did have some trouble coming out of the anesthesia and was in recovery for several hours. He doesn't handle narcotics well and they had given him some fentynl for the pain. I think this had alot to with the problems afterwards. He would wake up, thrash around quite a bit and his sats would drop and he would turn blue. Once he calmed down and with just a bit of blow by o2 he would be fine again. This lasted for awhile but he was much better after a few hours. By the time we left the only thing he was upset about was the bandaid they had put on his hand when they took out his IV. While Noah was busy having his new tube placed, Elliot took care of Noah's usual social obligations. He chatted with all the clinic nurses and even let Dr Mychaliska hold him for awhile and of course got in some cuddle time with Jeannie. They all agreed he has to behave better than his brother!
So, now Noah is sporting a shiny new g-j button and we are back to the drawing board with tube feed weaning. I don't think we are going to attempt the back pack again anytime soon. He is just too mobile for this approach and we don't want any more of these little accidents! Realistically, after talking with everyone up in Ann Arbor, it will be at least a year before they think he is going to be ready. The weaning process will take awhile and then he still has to prove he can go without tube feeds and maintain his weight for a long time before they would consider taking it out. I am hoping once he is less dependant on the feeds we can switch back to the g-tube. At least then we can switch out the button ourselves without putting him under anesthesia like the g-j.
Have a great weekend and as always, thanks for checking on us!
Friday, March 20, 2009
Blog Slacker...
I know I have been a total slacker lately!
Life is good and getting back to normal. Our living room floor looks like the display floor of Toys R Us, making it that more apparent that we have 3 children!
I still can't believe that Elliot is a month old already. I really seems like only yesterday that we were still waiting on him to arrive. I am getting around much better and have finished my antibiotics with no more fevers. Elliot had his follow up hearing screen and passed with flying colors. He is really starting to get chubby and weighs in right around 9lbs. We even saw the first real smiles and some cooing this week. I find myself staring at him in disbelief alot lately. With all the commotion around his birth, it is just now hitting me that he is here with us and perfectly healthy after everything we were told in the beginning of my pregnancy.
Zane is doing well and looking forward to spring break coming up. He is flying out to Seattle to see his Aunt Kelly and Uncle Jeff for a week. He talks non-stop about it and can't wait to fly. I am so glad that he is getting the opportunity to go and I can't wait to hear about his trip! I am going to miss him but he promised to call me every day and take lots of pictures of everything he sees and does.
Noah is also doing great! He received a new pair of orthodics that fit inside his shoes. He is still walking alot but continues to have problems with his feet turning in. We attempted a pretty aggressive tube feed ween last week and it completely tanked. He lost alot of weight in only 3 days. We have been talking with the dietitian at U of M and she has given us a great plan to wean the amount slowly, change the schedule, and still be able to maintain his weight. We started a few days ago and updating her in two weeks with a weight and food diary. She will be able to re figure his calories and let us know if she thinks he is ready for another decrease or not. We are now hooking him up to his feeds right after dinner so they will shut off sooner in the night. Now that he is walking he carries the pump and bag in a little backpack that he wears. Every time I look at him I think of Bill Murray in Ghostbusters. I swear Slimer is going to fly out of his bag. He also looks as if he has had a few shots of whiskey when he wears it because it is so heavy and his walking still isn't 100% stable. Remember we are not laughing at him, we are laughing with him...:)
Sadly we had to say goodbye to our dog Marley last week. We found out a few weeks ago that he had cancer and he went down hill pretty quickly. He was in quite a bit of pain and wouldn't eat anything in his last few days, so we made the decision to let him go. Brian has had Marley since he was a puppy and he turned 7 this year. Zane took it pretty hard but seems to be doing better with it. I don't think Brian will ever be the same! He and Marley have lots of memories together!
Next Tuesday, March 31st, is Congenital Diaphragmatic Hernia Awareness Day! Indiana has proclaimed it for another year! Obviously there is no cure for this birth defect, but hopefully by raising awareness, parents of expecting babies can be introduced to the resources and support that is available as well as having the option of second opinions. We as parents have to be the voice for our children!
Life is good and getting back to normal. Our living room floor looks like the display floor of Toys R Us, making it that more apparent that we have 3 children!
I still can't believe that Elliot is a month old already. I really seems like only yesterday that we were still waiting on him to arrive. I am getting around much better and have finished my antibiotics with no more fevers. Elliot had his follow up hearing screen and passed with flying colors. He is really starting to get chubby and weighs in right around 9lbs. We even saw the first real smiles and some cooing this week. I find myself staring at him in disbelief alot lately. With all the commotion around his birth, it is just now hitting me that he is here with us and perfectly healthy after everything we were told in the beginning of my pregnancy.
Zane is doing well and looking forward to spring break coming up. He is flying out to Seattle to see his Aunt Kelly and Uncle Jeff for a week. He talks non-stop about it and can't wait to fly. I am so glad that he is getting the opportunity to go and I can't wait to hear about his trip! I am going to miss him but he promised to call me every day and take lots of pictures of everything he sees and does.
Noah is also doing great! He received a new pair of orthodics that fit inside his shoes. He is still walking alot but continues to have problems with his feet turning in. We attempted a pretty aggressive tube feed ween last week and it completely tanked. He lost alot of weight in only 3 days. We have been talking with the dietitian at U of M and she has given us a great plan to wean the amount slowly, change the schedule, and still be able to maintain his weight. We started a few days ago and updating her in two weeks with a weight and food diary. She will be able to re figure his calories and let us know if she thinks he is ready for another decrease or not. We are now hooking him up to his feeds right after dinner so they will shut off sooner in the night. Now that he is walking he carries the pump and bag in a little backpack that he wears. Every time I look at him I think of Bill Murray in Ghostbusters. I swear Slimer is going to fly out of his bag. He also looks as if he has had a few shots of whiskey when he wears it because it is so heavy and his walking still isn't 100% stable. Remember we are not laughing at him, we are laughing with him...:)
Sadly we had to say goodbye to our dog Marley last week. We found out a few weeks ago that he had cancer and he went down hill pretty quickly. He was in quite a bit of pain and wouldn't eat anything in his last few days, so we made the decision to let him go. Brian has had Marley since he was a puppy and he turned 7 this year. Zane took it pretty hard but seems to be doing better with it. I don't think Brian will ever be the same! He and Marley have lots of memories together!
Next Tuesday, March 31st, is Congenital Diaphragmatic Hernia Awareness Day! Indiana has proclaimed it for another year! Obviously there is no cure for this birth defect, but hopefully by raising awareness, parents of expecting babies can be introduced to the resources and support that is available as well as having the option of second opinions. We as parents have to be the voice for our children!
Wednesday, March 11, 2009
1 air mattress + 2 boys = hours of entertainment
I have no idea who taught these kids to dance but they have pretty good rhythm! Noah will break it down anytime he hears music on TV or the radio! Zane drug out the air mattress into the living room and the two of them had an absolute riot together. I caught some of their jam session on video so you can check out some of Noah's latest moves. I will be using this video for his Dancing With The Stars audition as well....
You will have to click pause on the music player before you play the video in order to hear the clip.
Here is a little video I put together for Elliot a well..
You will have to click pause on the music player before you play the video in order to hear the clip.
Here is a little video I put together for Elliot a well..
Tuesday, March 3, 2009
Baby Steps
Our first week home has certainly been interesting. I can't believe that Elliot is officially two weeks old already! He couldn't be doing any better at this point. He is an eating machine and is such a good baby. His follow up chest x-ray yesterday was clear and normal! His pediatrician gave him a clean bill of health and said he looks great! We are so incredibly thankful for a good report and the news of a healthy, normal chest x-ray!
Poor Noah had a really tough week. The flu bug always hits him hard and this time was no exception. He started last Tuesday, and last night was the first night we didn't hear him retching in the middle of the night. He's been able to keep drinking during the day to keep himself hydrated, but we are still not up to full feeds at night. Hopefully we can keep gradually moving up as he continues to have good days. He certainly loves his new little brother though! He is fascinated and loves to bring him toys and other random objects. He has not show any jealousy whatsoever at this point.
Zane is still along for the ride and seems to be unaffected by the chaos. He has been a huge help to me as well. I do think he has been a little more eager to get on the bus in the morning though:)
I was back into the Dr last week with a fever and high blood pressure. They started me on antibiotics for some sort of infection, but the fever has persisted and I was started on another round of antibiotics today. The good news is that I had my cystogram today and, by the grace of God, it showed my bladder has healed so they were able to remove the catheter. I have been so worried that there would be long term affects from the damage.
Along with the greatest family, I am so fortunate to have the greatest husband in the entire world. He has done basically everything for me and the kids and hasn't even missed a beat. He's doing laundry, cleaning, driving, and taking 100% of Noah's care. He has been so positive and cheerful and has really kept me going.
So, we are all very slowly getting back to normal. I am hoping by next week things will be even better. I know I need to get pictures up, I actually haven't even taken many since we have been home. We have been trying to keep everyone else from getting sick so the boys haven't really had the chance to all be together much. I will try to get them soon though! Thank you for checking on us!
Poor Noah had a really tough week. The flu bug always hits him hard and this time was no exception. He started last Tuesday, and last night was the first night we didn't hear him retching in the middle of the night. He's been able to keep drinking during the day to keep himself hydrated, but we are still not up to full feeds at night. Hopefully we can keep gradually moving up as he continues to have good days. He certainly loves his new little brother though! He is fascinated and loves to bring him toys and other random objects. He has not show any jealousy whatsoever at this point.
Zane is still along for the ride and seems to be unaffected by the chaos. He has been a huge help to me as well. I do think he has been a little more eager to get on the bus in the morning though:)
I was back into the Dr last week with a fever and high blood pressure. They started me on antibiotics for some sort of infection, but the fever has persisted and I was started on another round of antibiotics today. The good news is that I had my cystogram today and, by the grace of God, it showed my bladder has healed so they were able to remove the catheter. I have been so worried that there would be long term affects from the damage.
Along with the greatest family, I am so fortunate to have the greatest husband in the entire world. He has done basically everything for me and the kids and hasn't even missed a beat. He's doing laundry, cleaning, driving, and taking 100% of Noah's care. He has been so positive and cheerful and has really kept me going.
So, we are all very slowly getting back to normal. I am hoping by next week things will be even better. I know I need to get pictures up, I actually haven't even taken many since we have been home. We have been trying to keep everyone else from getting sick so the boys haven't really had the chance to all be together much. I will try to get them soon though! Thank you for checking on us!
Tuesday, February 24, 2009
HOME!!!!!
I almost can't believe it! This week has felt like months, but we were able to bring our Elliot home today! His morning started very early with shots, hearing tests, that fun little surgery for boys, and another chest x-ray. The x-ray is still of concern as it does not show any improvement from the first two. The good thing is that Elliot is breathing fine, eating fine, and showing no clinical signs of a problem. The Dr's do not know at this point why the x-ray has not cleared even after 7 days of strong antibiotics. We are to have another chest x-ray on Monday (outpatient) and will see his pediatrician afterwards. If the chest x-ray still does not show improvement then he may have to have a CT scan. He didn't pass his hearing test either so we will have having another one next week as well. I don't think they were concerned about his hearing too much and are hoping after being home a few days they will get a better reading.
I saw my Dr on the way out and all seems to be healing fine. I will have my bladder scan 1 week from today and hopefully be able to say goodbye to my little "friend" if it shows that everything has healed.
Poor Noah has the flu and is a sick little boy. We have heard that the current strain of flu virus is taking about a week to manifest. Zane had it the day Elliot was born so it has been exactly 1 week. He has a slight fever and has been sleeping all day. He won't eat or drink and has had a few episodes of wretching as well. We are hoping he has a quick recovery and that neither Brian and I will catch it. Elliot should be protected according to the Dr's because I am breastfeeding. I hope they are right. Zane's was jut 24hours, so I am praying Noah is feeling better by tomorrow. I can't stand seeing him so miserable and I can't even hold him...
We wanted to thank everyone so much for all the phone calls, messages, cards, gifts, visits, ect, ect. Everyone has been so wonderful and we can't tell you how much we appreciate each of you and what you have done for us. We are so grateful to our parents as well for watching the kids for us this past week. I know they both had a great time spending so much time with you! We just can't convey how much it means that you are there for us, without hesitation, especially when the unexpected happens. We are hoping for a drama-free lifestyle from now on! :)
I saw my Dr on the way out and all seems to be healing fine. I will have my bladder scan 1 week from today and hopefully be able to say goodbye to my little "friend" if it shows that everything has healed.
Poor Noah has the flu and is a sick little boy. We have heard that the current strain of flu virus is taking about a week to manifest. Zane had it the day Elliot was born so it has been exactly 1 week. He has a slight fever and has been sleeping all day. He won't eat or drink and has had a few episodes of wretching as well. We are hoping he has a quick recovery and that neither Brian and I will catch it. Elliot should be protected according to the Dr's because I am breastfeeding. I hope they are right. Zane's was jut 24hours, so I am praying Noah is feeling better by tomorrow. I can't stand seeing him so miserable and I can't even hold him...
We wanted to thank everyone so much for all the phone calls, messages, cards, gifts, visits, ect, ect. Everyone has been so wonderful and we can't tell you how much we appreciate each of you and what you have done for us. We are so grateful to our parents as well for watching the kids for us this past week. I know they both had a great time spending so much time with you! We just can't convey how much it means that you are there for us, without hesitation, especially when the unexpected happens. We are hoping for a drama-free lifestyle from now on! :)
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