Brennan is doing great. He went to the doctor on Monday and had gained weight - he's 15 pounds now. Because he was doing so well the doctor decreased his tube feedings down to only 10 hours at night and increased his oral feeds to 4 oz every 4 hours. The doctor told us that if he did well this week his feeding tube could come out at his appointment next Monday! His central line will come out shortly after the feeding tube is removed. By the way, he is doing great with the bottle now. Except when we remove it and try to slow him down while eating - then you would think we were torturing him by his little screams. it's so great to see him act like a normal baby! But he did have a setback with this increase. He began vomiting after every feeding, so on Tuesday the doctor decreased his oral feeds. He was able to tolerate that and so on Wednesday he was back up again. we're learning to take things slowly with him, step by step. He is continuing to do well with this level, so I'm hoping that the doctor will decrease his tube feedings or even eliminate them over the weekend to see if he can handle just doing oral feeds. We are so excited that his feeding tube might come out on Monday, but of course we don't want to rush him if he's not ready.
Another GREAT piece of news is that our insurance is covering the formula, and it was delivered yesterday from our home health care company. This is a HUGE answer to prayer. My income stops this month, so it is very timely. As some of you know, I am not returning to full-time teaching. I had made this decision before Brennan even arrived, but this experience has certainly confirmed and strengthened my desire to be with my boys as much as possible.
Brennan continues to be a somewhat atrocious sleeper. we are overwhelmingly thankful for him and so grateful he is home and getting healthier every day. but if he could sleep without me physically holding him that would be great too. that's really why I haven't updated the blog more often (or cooked or cleaned...) - because he has such a hard time sleeping sometimes. And though I am not opposed to letting babies "cry it out" at a certain age, I am unable to let my sick little baby do this too much - especially when we think the reason he needs to be held at night is because he seems to be in pain. but still...sleep for us would be lovely. jeff does have to go to work, so he wouldn't mind getting a bit more sleep as well.
but on a normal baby note, last night Brennan laughed for the first time - like the real ha ha laugh instead of the fun new baby squeal-like laugh. I had forgotten how amazing that sound is, especially when hearing it for the first time. the greatest thing was that he did it while we were all together eating dinner - so Jeff, Tommy and I all heard him laugh for the first time. Tommy was so excited and just kept standing over Brennan mimicking all the things I was saying and doing, trying to get Brennan to laugh again. He didn't last night, but tonight Tommy got Brennan to laugh again all by himself - by hugging him! It was precious. Afterward, Tommy said, "He laughed! He liked it! He likes me!" which, of course, had Jeff and I in sentimental tears - so thankful for our precious boys.
thank you again for all your love and support. I will do my best to keep you updated, and thanks for caring about our family so much!!!
Thursday, February 28, 2008
Sunday, February 24, 2008
slowly but surely
Thanks so much for your prayers. They are not without effect! On Tommy's birthday, February 21, Brennan latched onto the bottle for the first time. He didn't take much, but he has been increasing the amount every day. On Friday Brennan's doctor ordered him to be off his feeding tube nutrition for 8 hours each day, so he would be hungrier and more likely to eat by mouth. And we have seen a definite change. Today has been his best day so far - he has eaten three times by mouth, and the last time he took 2 1/2 ounces, which is great. We see the doctor tomorrow, and we are eager to find out about the ongoing plan of action. It is frightening to have the continuous feeds reduced because he's still not eating enough by mouth, but it is obviously necessary so that he will be motivated to take the bottle.
We are also currently trying to get his formula but encountering some problems. Our insurance case manager tells us that it will be covered, which would be a HUGE answer to prayer, but thus far we are getting rejections when the pharmacy submits the rx. This doesn't really make sense since it's a blue cross person telling us it's covered, so hopefully we will get this worked out before we run out of formula! And we just really really really hope it's covered, because the cost of this formula is so prohibitive. We're really not sure what we'll do if it's not!
thanks so much for your prayers and thoughts. We are all doing much better. Tommy is cracking us up again and doing much better. Jeff and I are both feeling better - physically and emotionally. We are pretty tired because Brennan wakes up a LOT in the night with these terrible pain screams and needs to be rocked or walked. But he is pretty easily soothed back to sleep, so that is a relief. It's just several times each night, so we are pretty exhausted. But we are thankful to be home together, and I am thrilled to be able to snuggle both of my boys again! My parents babysat for us on Saturday so Jeff and I were able to go see Michael Card and go out for dinner - it was wonderful! they babysat for brennan again this morning (we know there's a theme here...) and we were able to go to church for the first time since all this started.
we are so thankful for the meals you are sending! we continue to be so encouraged and overwhelmed by the generosity and love of so many - friends new and old.
blessings,
kim & jeff
We are also currently trying to get his formula but encountering some problems. Our insurance case manager tells us that it will be covered, which would be a HUGE answer to prayer, but thus far we are getting rejections when the pharmacy submits the rx. This doesn't really make sense since it's a blue cross person telling us it's covered, so hopefully we will get this worked out before we run out of formula! And we just really really really hope it's covered, because the cost of this formula is so prohibitive. We're really not sure what we'll do if it's not!
thanks so much for your prayers and thoughts. We are all doing much better. Tommy is cracking us up again and doing much better. Jeff and I are both feeling better - physically and emotionally. We are pretty tired because Brennan wakes up a LOT in the night with these terrible pain screams and needs to be rocked or walked. But he is pretty easily soothed back to sleep, so that is a relief. It's just several times each night, so we are pretty exhausted. But we are thankful to be home together, and I am thrilled to be able to snuggle both of my boys again! My parents babysat for us on Saturday so Jeff and I were able to go see Michael Card and go out for dinner - it was wonderful! they babysat for brennan again this morning (we know there's a theme here...) and we were able to go to church for the first time since all this started.
we are so thankful for the meals you are sending! we continue to be so encouraged and overwhelmed by the generosity and love of so many - friends new and old.
blessings,
kim & jeff
Tuesday, February 19, 2008
refusing to eat
dear friends,
once again, we are asking for prayer for our sweet brennan. yesterday brennan hit a major milestone because he was allowed to begin oral feeds. I was supposed to give him a bottle with one ounce of formula four times a day. I was warned by the doctor that he would try to take it all at once and that I had to slow him down and spread out the feed over 20 minutes. I was so excited to start this process, even though it solidified how sad I am not to be able to nurse him anymore. But to be able to begin normal feedings was something we have been looking forward to as a big goal. Unfortunately, things didn't go as expected. Brennan is refusing to eat anything by mouth. He pushes the bottle out of his mouth and eventually cries and screams when I lift it to his mouth. He obviously can not progress until he re-learns how to take things by mouth. He is safe because he is still getting all his necessary nutrition through his feeding tube, but even when he has been off the feeding tube for four hours he won't take anything by mouth. I was so discouraged last night and this morning, but the doctor has assured me that Brennan will learn eventually. Like grandma said, this too shall pass. please pray this simple prayer for brennan - that he will latch onto the bottle and re-learn how to eat by mouth. in so many ways we are starting over with this little one.
thank you for praying for us. we feel our need right now and are grateful for friends who are lifting us up. I never thought I would be sending out a big prayer request that our 3 month old would learn how to eat, but that's how life is - full of surprises. right now we are learning anew how to trust the Lord with our children, realizing they have been entrusted to us by Him and that He loves them more than we ever could. I have thought so much about the biblical imagery of food - that God invites us to the wedding feast and the banqueting table. And watching Brennan be unable to eat, I have thought of those things in such literal ways - how much I want Brennan to physically be able to come to the table! And what joy we will have with each step he takes. Brennan has done so well with each aspect of this, we know he will catch onto this as well, but it has been hard.
please continue to pray for us as well. I am still sick but am thankfully back with both boys. We're camping out at my parents right now so they can help me. please pray that we won't get discouraged or focus on how we wish things were, but take them one step at a time - as they are - trusting that Jesus is constantly standing in the gap for us, enabling us to walk this path and holding us up even as we cling to his hands (even in those times when we don't perceive them there), taking one wobbly step after another.
with love,
kim & jeff
once again, we are asking for prayer for our sweet brennan. yesterday brennan hit a major milestone because he was allowed to begin oral feeds. I was supposed to give him a bottle with one ounce of formula four times a day. I was warned by the doctor that he would try to take it all at once and that I had to slow him down and spread out the feed over 20 minutes. I was so excited to start this process, even though it solidified how sad I am not to be able to nurse him anymore. But to be able to begin normal feedings was something we have been looking forward to as a big goal. Unfortunately, things didn't go as expected. Brennan is refusing to eat anything by mouth. He pushes the bottle out of his mouth and eventually cries and screams when I lift it to his mouth. He obviously can not progress until he re-learns how to take things by mouth. He is safe because he is still getting all his necessary nutrition through his feeding tube, but even when he has been off the feeding tube for four hours he won't take anything by mouth. I was so discouraged last night and this morning, but the doctor has assured me that Brennan will learn eventually. Like grandma said, this too shall pass. please pray this simple prayer for brennan - that he will latch onto the bottle and re-learn how to eat by mouth. in so many ways we are starting over with this little one.
thank you for praying for us. we feel our need right now and are grateful for friends who are lifting us up. I never thought I would be sending out a big prayer request that our 3 month old would learn how to eat, but that's how life is - full of surprises. right now we are learning anew how to trust the Lord with our children, realizing they have been entrusted to us by Him and that He loves them more than we ever could. I have thought so much about the biblical imagery of food - that God invites us to the wedding feast and the banqueting table. And watching Brennan be unable to eat, I have thought of those things in such literal ways - how much I want Brennan to physically be able to come to the table! And what joy we will have with each step he takes. Brennan has done so well with each aspect of this, we know he will catch onto this as well, but it has been hard.
please continue to pray for us as well. I am still sick but am thankfully back with both boys. We're camping out at my parents right now so they can help me. please pray that we won't get discouraged or focus on how we wish things were, but take them one step at a time - as they are - trusting that Jesus is constantly standing in the gap for us, enabling us to walk this path and holding us up even as we cling to his hands (even in those times when we don't perceive them there), taking one wobbly step after another.
with love,
kim & jeff
Saturday, February 16, 2008
still in need of prayer
dear friends,
we are so grateful that we were able to bring brennan home on Thursday, February 14, but it has been a rough few days. Brennan's stools increased on Friday to a greater number that he has had up until now, and we could not reach the on-call GI doctor though he was being paged every 15 minutes (it turns out the answering service was calling the wrong doctor). We couldn't reach our pediatrician either, and so ended up just making adjustments ourselves to his feeding.
To make matters worse, I woke up this morning with a 102.5 fever - this is a big issue with Brennan because of the central line risk of infection. He's not supposed to be around anyone with a fever or infection. I went to the doctor this morning and tested positive for flu. I am taking meds now, but the risks for a baby to be around flu are significant anyway, and multiplied many times because of the central line. Unfortunately, no one else had been trained in how to change Brennan's feeding bag or flush his central line, so I called our home health care nurse and she came out to the house today and trained my mom and Jeff. My parents actually took Brennan to their house and are keeping him there until my fever is gone. We are SO grateful for my parents and all their help -- we don't know what we would do without them. But it is really hard not to be with my baby at all. And we are doing everything we can to keep Tommy away from me as well. He got a flu shot, but we do not want to risk him getting sick as well. He knows I'm sick and is precious - getting me things to make me better "so I can snuggle you." There is nothing I want more right now than to be able to snuggle both of our boys, but that is the last thing I can do.
Please pray that our boys will be protected and won't get the flu - especially that Brennan won't develop a fever. If he has a 100.4 fever at any time we have to immediately take him to the ER b/c of the risk of the central line being infected. To be perfectly honest, Jeff and I are pretty discouraged right now. We are so happy to have Brennan come home, but it seems like it's one thing after another. Financial stress is hitting us now, too, as medical bills are starting to arrive, and we are having to start purchasing this specialized formula that is insanely expensive ($50/can).
We continue to be overwhelmed with gratitude for all the love and support you have shown us. As my grandma used to say (and my mom quotes all the time), "This too shall pass." And we know that is true, but we wouldn't mind hurrying it up a bit.
as a P.S., Jeff wants me to add that he is heating up frozen green beans to eat for dinner, if that tells you something about our life right now. Even better is the fact that those green beans are the most significant thing he's eaten today. part of the reason for that is probably because Jeff spent the day so focused on making sure he was taking care of me. I am so grateful for a husband and parents who would do anything for me. I know how lucky I am.
also, my mom tells us that lots of you have offered to bring meals to us, and we are so grateful. Jeff really likes eating frozen green beans for dinner, though, and he'll probably miss that. :)
we are so grateful that we were able to bring brennan home on Thursday, February 14, but it has been a rough few days. Brennan's stools increased on Friday to a greater number that he has had up until now, and we could not reach the on-call GI doctor though he was being paged every 15 minutes (it turns out the answering service was calling the wrong doctor). We couldn't reach our pediatrician either, and so ended up just making adjustments ourselves to his feeding.
To make matters worse, I woke up this morning with a 102.5 fever - this is a big issue with Brennan because of the central line risk of infection. He's not supposed to be around anyone with a fever or infection. I went to the doctor this morning and tested positive for flu. I am taking meds now, but the risks for a baby to be around flu are significant anyway, and multiplied many times because of the central line. Unfortunately, no one else had been trained in how to change Brennan's feeding bag or flush his central line, so I called our home health care nurse and she came out to the house today and trained my mom and Jeff. My parents actually took Brennan to their house and are keeping him there until my fever is gone. We are SO grateful for my parents and all their help -- we don't know what we would do without them. But it is really hard not to be with my baby at all. And we are doing everything we can to keep Tommy away from me as well. He got a flu shot, but we do not want to risk him getting sick as well. He knows I'm sick and is precious - getting me things to make me better "so I can snuggle you." There is nothing I want more right now than to be able to snuggle both of our boys, but that is the last thing I can do.
Please pray that our boys will be protected and won't get the flu - especially that Brennan won't develop a fever. If he has a 100.4 fever at any time we have to immediately take him to the ER b/c of the risk of the central line being infected. To be perfectly honest, Jeff and I are pretty discouraged right now. We are so happy to have Brennan come home, but it seems like it's one thing after another. Financial stress is hitting us now, too, as medical bills are starting to arrive, and we are having to start purchasing this specialized formula that is insanely expensive ($50/can).
We continue to be overwhelmed with gratitude for all the love and support you have shown us. As my grandma used to say (and my mom quotes all the time), "This too shall pass." And we know that is true, but we wouldn't mind hurrying it up a bit.
as a P.S., Jeff wants me to add that he is heating up frozen green beans to eat for dinner, if that tells you something about our life right now. Even better is the fact that those green beans are the most significant thing he's eaten today. part of the reason for that is probably because Jeff spent the day so focused on making sure he was taking care of me. I am so grateful for a husband and parents who would do anything for me. I know how lucky I am.
also, my mom tells us that lots of you have offered to bring meals to us, and we are so grateful. Jeff really likes eating frozen green beans for dinner, though, and he'll probably miss that. :)
Wednesday, February 13, 2008
Going Home?
Our doctor tells us that if Brennan continues to do well today and has good labs in the morning that we can go home tomorrow!!! We are surprised and SO excited. He still has a long way to go, but we are so thankful to be able to continue this journey in our own home with our whole family together. Please pray for continued improvement, both here and at home. It turns out that the second scale was actually wrong - Brennan still weighs 14 pounds 6 ounces so hasn't gained weight for almost a week, but they are not worried unless he loses weight. I won't be able to monitor this as well at home, which is one of several things that will be a little stressful about not being in the hospital. There are lots of medical things that I'll have to learn when we go home, and so I'm a little nervous but just so grateful to be able to go home. He's still getting nothing by mouth, but hopefully we will start some small oral feedings on Monday. We are thrilled and so grateful to be taking our sweet baby home soon.
if it's not one thing...
...it's another. today henry (our dog) was limping everywhere - wouldn't put any weight on his front left paw and was just pitiful. Henry was our first baby and so in my afternoon home while tommy was napping, our babysitter Emily came over and I took Henry for a ($100) vet visit, in which the vet gave him some painkillers and said it's probably a sprain. It reminded me of our first ER visit in which we were sent home with tylenol for brennan. nothing but medical bills for the baby and dog in our family...
more importantly, Brennan is doing well. The scale they weighed him on on Sunday was wrong; Brennan actually weighed 14 pounds 11 ounces yesterday, so he did gain weight (yeah!). He is now off the nutrition through his central line, which is a big deal, and we are continuing to increase his feeds. The goal is 40 ml an hour into his feeding tube and he's at 32 right now (up every 8 hours). He did have sugar in his stool yesterday, indicating he's not absorbing things properly, but hopefully that will improve. We are waiting and hoping to start oral feedings soon, and we are REALLY hoping for an early hospital discharge.
tommy is hanging in there. he's having more of a rough time now that the week has begun and he's not with Jeff or I as much, but he's not showing the same level of anger or anxiety as he did last week. We are very very eager to get home and be able to return to more of his structure and routine. He did, however, think he had gone to heaven today after his extended playdate with his friend Benjamin who has over 80 Disney cars. Benjamin even gave Tommy 2 of his cars, and they have not left his hands since (he's sleeping with them even now). we're so thankful for friends like this who are stepping in to help us with tommy.
thanks again for your continued love and prayers. we continue to be overwhelmed and grateful!
kim & jeff
more importantly, Brennan is doing well. The scale they weighed him on on Sunday was wrong; Brennan actually weighed 14 pounds 11 ounces yesterday, so he did gain weight (yeah!). He is now off the nutrition through his central line, which is a big deal, and we are continuing to increase his feeds. The goal is 40 ml an hour into his feeding tube and he's at 32 right now (up every 8 hours). He did have sugar in his stool yesterday, indicating he's not absorbing things properly, but hopefully that will improve. We are waiting and hoping to start oral feedings soon, and we are REALLY hoping for an early hospital discharge.
tommy is hanging in there. he's having more of a rough time now that the week has begun and he's not with Jeff or I as much, but he's not showing the same level of anger or anxiety as he did last week. We are very very eager to get home and be able to return to more of his structure and routine. He did, however, think he had gone to heaven today after his extended playdate with his friend Benjamin who has over 80 Disney cars. Benjamin even gave Tommy 2 of his cars, and they have not left his hands since (he's sleeping with them even now). we're so thankful for friends like this who are stepping in to help us with tommy.
thanks again for your continued love and prayers. we continue to be overwhelmed and grateful!
kim & jeff
Sunday, February 10, 2008
pressing on
First of all, Jeff and I want to say thank you so much for your continued prayers for our family! So many of you have also said such kind things about the blog; I will do my best to keep it updated! I'm so glad you want to be updated on Brennan. Thank you!
Brennan is still doing really well but has hit a bit of a rough patch. He was improving so much at the end of the week that the doctor thought he might go home early. He is now up to full strength formula but is having some difficulty tolerating it. He has begun stooling again (4 times in last 24 hours) and spit up some yellow bile-like stuff tonight. Also, he had not gained any weight today since his last weigh-in on Thursday. The doctor warned us that Brennan would hit a threshold, and what he's doing now is not nearly as bad as we expected. So we are hoping and praying that things don't get worse. Right now we are just holding steady with Brennan's feeds -- instead of increasing the amount into his gut every 8 hours, it has been the same for the last day. We are hoping that he will acclimate to the full strength formula and soon be able to tolerate the continued increases. And then hopefully soon he'll be off the TPN (nutrition through the central line) and beginning some oral feedings. Your continued prayers for his little digestive system to continue to heal are much appreciated.
Big brother Tommy is doing better. Tommy was having such a difficult time last week that we were actually more worried about him than Brennan in some ways. Tommy is pretty cautious and can be somewhat fearful, and being apart from us so much is very hard on him (combined with seeing Brennan so sick). Last week he was displaying a lot of anger and anxiety - enough that we were just heartbroken, feeling like we couldn't protect either of our boys or give them everything they needed (whether physically or emotionally). But thanks to my parents and some other wonderful friends who helped us out, we were able to spend a LOT of really focused time with Tommy, including quite a bit of time with all of us together (vs Jeff at home with Tommy and me at the hospital with Brennan). This made a huge difference, and we feel like we have our Tommy back. We know this whole thing will continue to be tough on him, and we are so thankful for all those who have helped me set up special play dates and activities for Tommy. It's making a big difference -- thank you!
Thank you again for all your support and encouragement. I have your cards posted on our hospital walls and our hospital room is filled with your special gifts. I know I have not sent individual thank you notes for the gifts you all have sent, and I feel sad that I haven't been able to do that, but please know it is not a reflection of our deep gratitude. We don't have enough words to express how thankful we are for you all.
Love,
Kim & Jeff
Brennan is still doing really well but has hit a bit of a rough patch. He was improving so much at the end of the week that the doctor thought he might go home early. He is now up to full strength formula but is having some difficulty tolerating it. He has begun stooling again (4 times in last 24 hours) and spit up some yellow bile-like stuff tonight. Also, he had not gained any weight today since his last weigh-in on Thursday. The doctor warned us that Brennan would hit a threshold, and what he's doing now is not nearly as bad as we expected. So we are hoping and praying that things don't get worse. Right now we are just holding steady with Brennan's feeds -- instead of increasing the amount into his gut every 8 hours, it has been the same for the last day. We are hoping that he will acclimate to the full strength formula and soon be able to tolerate the continued increases. And then hopefully soon he'll be off the TPN (nutrition through the central line) and beginning some oral feedings. Your continued prayers for his little digestive system to continue to heal are much appreciated.
Big brother Tommy is doing better. Tommy was having such a difficult time last week that we were actually more worried about him than Brennan in some ways. Tommy is pretty cautious and can be somewhat fearful, and being apart from us so much is very hard on him (combined with seeing Brennan so sick). Last week he was displaying a lot of anger and anxiety - enough that we were just heartbroken, feeling like we couldn't protect either of our boys or give them everything they needed (whether physically or emotionally). But thanks to my parents and some other wonderful friends who helped us out, we were able to spend a LOT of really focused time with Tommy, including quite a bit of time with all of us together (vs Jeff at home with Tommy and me at the hospital with Brennan). This made a huge difference, and we feel like we have our Tommy back. We know this whole thing will continue to be tough on him, and we are so thankful for all those who have helped me set up special play dates and activities for Tommy. It's making a big difference -- thank you!
Thank you again for all your support and encouragement. I have your cards posted on our hospital walls and our hospital room is filled with your special gifts. I know I have not sent individual thank you notes for the gifts you all have sent, and I feel sad that I haven't been able to do that, but please know it is not a reflection of our deep gratitude. We don't have enough words to express how thankful we are for you all.
Love,
Kim & Jeff
Thursday, February 7, 2008
"Getting bigger every day"
Tommy loves to tell me, "I getting bigger every day, Mom," and this is true of both our boys right now. Today Brennan weighed 14 pounds 6 oz, which is GREAT. He has gained 2 pounds, 4 ounces since his admission almost 2 weeks ago. He is almost back to what he weighed before he got sick.
Brennan is doing so well that he is surprising the doctors and nurses. Brennan's doctor warned us that he would hit a threshold of feedings and would stool out (poop a lot). This has still not happened! Brennan is now getting over 20 ml (4 teaspoons) of 3/4 strength formula per hour into his gut. That sounds miniscule, but he started at 2 ml of 1/2 strength, and so now he is taking in over 16 ounces of 3/4 strength formula each 24 hour period. Last night he had his first stool for a week. The doctor had warned us that (a) Brennan would likely stool out, and (b) when he did stool it would probably be abnormal (meaning that labs would show he wasn't digesting the carbs properly). But he only had one normal size stool - we're still weighing everything :), and there were no abnormalities in the lab tests. This means he is absorbing the fats and proteins, which is exactly what we want to see. Because he is doing so well the doctor has reduced the time he gets the TPN (nutrition through the central line) from 24 hours a day to 16 hours a day. This is good because it's the TPN that leads to the liver damage. The next step is for Brennan to go to full-strength formula (which the dr will do when he gets to 30 ml an hour), and then eventually to be off the TPN altogether and just have the tube feedings.
We are so encouraged, but Brennan still has a LONG way to go. It will be quite some time before he can tolerate normal feedings (a lot in a short period, versus a little given continuously for 24 hours). He still can't have anything by mouth, and when we begin that it will also be a very slow process (one that will happen after we go home, from what we understand).
We continue to be so thankful for your prayers, and we really believe God did a healing work in Brennan's intestines - especially last Wednesday when our friends prayed over him. Brennan went from constantly having diarrhea (and I mean that literally - about every 10 minutes, sometimes starting again while we were still changing his diaper) to NOTHING overnight. We are so thankful and ask for your continued prayers for Brennan's health. They continue to lay out all the risks and things that can go wrong, and we are just praying that Brennan will continue to surprise the doctors!
Prayers for our family would also be appreciated. This has been especially difficult for Tommy to be apart from me so much. It is a big change, and our little man is not a fan of change in the first place. Tommy was sick last weekend and so we kept him away from me almost the whole weekend. After staying with Jeff's parents the first 6 days we were here, that added up to a long time. In his frustration he has been quite a handful. Jeff was talking to Tommy last night and asked him why he had misbehaved with me and Tommy said, "Because something is wrong, Dad." We thought that was pretty insightful. Something is wrong - his mom and dad are always in different places, his brother is sick and so Tommy can't touch or cuddle or play with him. So please pray for Tommy, and for patience and wisdom for us. We can't be in two places at once, and we are trying to do the best we can - but it's hard to see both our boys needing us so much.
We continue to be overwhelmed with the love and support we have received. My parents have left retirement to become full-time unpaid nannies for us. Our friends Annette and Mark have spent days at the hospital with us and babysat Tommy numerous times at the last minute. Our friends Jana, Brittney, Andrew and Mark have all had nontraditional slumber parties with us at the hospital. Our friend Donna got Brennan to take the pacifier (thank you!!!) and has stayed at the hospital overnight with him. We've had so many wonderful visitors who have talked and prayed with us and for Brennan. For all of these things, and for the cards, meals, snacks, drinks, flowers, giftcards, etc that folks have given to us - we are so overwhelmed and thankful. If you know the wonderful Joe Novenson you may have heard him say, "I am your debtor" (he is the definition of the humble man), and that is how we feel. We are your debtors. Thank you so much. We have never felt so loved.
wishing you every blessing in Christ,
Kim & Jeff and our sweet boys
Brennan is doing so well that he is surprising the doctors and nurses. Brennan's doctor warned us that he would hit a threshold of feedings and would stool out (poop a lot). This has still not happened! Brennan is now getting over 20 ml (4 teaspoons) of 3/4 strength formula per hour into his gut. That sounds miniscule, but he started at 2 ml of 1/2 strength, and so now he is taking in over 16 ounces of 3/4 strength formula each 24 hour period. Last night he had his first stool for a week. The doctor had warned us that (a) Brennan would likely stool out, and (b) when he did stool it would probably be abnormal (meaning that labs would show he wasn't digesting the carbs properly). But he only had one normal size stool - we're still weighing everything :), and there were no abnormalities in the lab tests. This means he is absorbing the fats and proteins, which is exactly what we want to see. Because he is doing so well the doctor has reduced the time he gets the TPN (nutrition through the central line) from 24 hours a day to 16 hours a day. This is good because it's the TPN that leads to the liver damage. The next step is for Brennan to go to full-strength formula (which the dr will do when he gets to 30 ml an hour), and then eventually to be off the TPN altogether and just have the tube feedings.
We are so encouraged, but Brennan still has a LONG way to go. It will be quite some time before he can tolerate normal feedings (a lot in a short period, versus a little given continuously for 24 hours). He still can't have anything by mouth, and when we begin that it will also be a very slow process (one that will happen after we go home, from what we understand).
We continue to be so thankful for your prayers, and we really believe God did a healing work in Brennan's intestines - especially last Wednesday when our friends prayed over him. Brennan went from constantly having diarrhea (and I mean that literally - about every 10 minutes, sometimes starting again while we were still changing his diaper) to NOTHING overnight. We are so thankful and ask for your continued prayers for Brennan's health. They continue to lay out all the risks and things that can go wrong, and we are just praying that Brennan will continue to surprise the doctors!
Prayers for our family would also be appreciated. This has been especially difficult for Tommy to be apart from me so much. It is a big change, and our little man is not a fan of change in the first place. Tommy was sick last weekend and so we kept him away from me almost the whole weekend. After staying with Jeff's parents the first 6 days we were here, that added up to a long time. In his frustration he has been quite a handful. Jeff was talking to Tommy last night and asked him why he had misbehaved with me and Tommy said, "Because something is wrong, Dad." We thought that was pretty insightful. Something is wrong - his mom and dad are always in different places, his brother is sick and so Tommy can't touch or cuddle or play with him. So please pray for Tommy, and for patience and wisdom for us. We can't be in two places at once, and we are trying to do the best we can - but it's hard to see both our boys needing us so much.
We continue to be overwhelmed with the love and support we have received. My parents have left retirement to become full-time unpaid nannies for us. Our friends Annette and Mark have spent days at the hospital with us and babysat Tommy numerous times at the last minute. Our friends Jana, Brittney, Andrew and Mark have all had nontraditional slumber parties with us at the hospital. Our friend Donna got Brennan to take the pacifier (thank you!!!) and has stayed at the hospital overnight with him. We've had so many wonderful visitors who have talked and prayed with us and for Brennan. For all of these things, and for the cards, meals, snacks, drinks, flowers, giftcards, etc that folks have given to us - we are so overwhelmed and thankful. If you know the wonderful Joe Novenson you may have heard him say, "I am your debtor" (he is the definition of the humble man), and that is how we feel. We are your debtors. Thank you so much. We have never felt so loved.
wishing you every blessing in Christ,
Kim & Jeff and our sweet boys
Tuesday, February 5, 2008
planning for a month...
we got the results of Brennan's endoscopy yesterday, It was what the doctor expected, but quite bad. Where Brennan should have little hairlike structures on his intestinal lining to absorb fats and proteins, it is completely smooth/flat. The doctor says these will grow back, but it will take quite some time. He tells us to plan for about a month in the hospital, but it is hard to predict until we know how well Brennan is going to tolerate the feedings into his small intestine. So far he is doing great (no stool), but he is only getting a couple of teaspoons of 1/2 strength formula every hour. This is about 10% of the way to a full feeding, which is the goal. In addition, the nutrition Brennan is receiving through his central line is causing some damage to his liver (which is also expected). This is reversible, but it is something the doctors are watching closely. So we are just praying that God will protect his other organs, and that Brennan will continue to tolerate the feedings as they slowly increase every 6 hours.
Monday, February 4, 2008
Feb 2 mass email prayer request/update
dear friends,
I wanted to send an update on Brennan, along with a
couple pics my mom took of brennan with big smiles. it
brings us unspeakable joy to see his cute dimple & big
smile and to hear him coo at us, especially when a
week ago he wouldn't look at us and was so lifeless.
But thanks be to God, Brennan is doing GREAT! I know
some of you are skeptics that are on my email list and
may think this is mere coincidence, but we feel so
confident that God is leading Brennan to health and
healing. here is what has happened...
Up until this last Wednesday Brennan was doing over
200 ccs of stool per 12 hour shift. Our doctor was
replacing everything over 75 ccs in his IV and waiting
for the stool to stop to really begin the re-feeding
process. For the first 5 days we were here there was
no decrease, and it actually increased. Then on
Wednesday around noon two friends of Jeff's with
healing gifts came by and prayed over Brennan. Over
the next 24 hours he did only 30 ccs of stool, and he
has not had any stool since Thursday night. The
doctors and nurses are continually expressing their
disbelief. This is a fantastic sign of Brennan's
prognosis, and we are so thankful for God's hand on
Brennan's tiny body and for the many prayers that have
been offered on his behalf. He has gained 1 pound, 12
ounces in his first week here.
Now Brennan's nutrition into his central line is being
gradually decreased, and the formula through his
feeding tube into his small intestine is being
increased in tiny amounts every 12 hours for as long
as he can tolerate it. Please pray for continued
healing in his intestines, that he will be able to
tolerate increasing amounts of the formula, and that
his little body will be protected against any
infections (one of the significant risks we currently
face). our dr is saying we'll be here another 2-3
weeks, and this is much harder logistically than we
had imagined. we are SO thankful for our parents and
friends who have helped us beyond what we would ever
have imagined we would have to ask.
thank you SO much for your thoughts, prayers, support,
cards, gifts. we are experiencing grace in a new way -
an undeserved gift that we cannot repay.
with love and gratitude,
kim, jeff, tommy & brennan eckert
I wanted to send an update on Brennan, along with a
couple pics my mom took of brennan with big smiles. it
brings us unspeakable joy to see his cute dimple & big
smile and to hear him coo at us, especially when a
week ago he wouldn't look at us and was so lifeless.
But thanks be to God, Brennan is doing GREAT! I know
some of you are skeptics that are on my email list and
may think this is mere coincidence, but we feel so
confident that God is leading Brennan to health and
healing. here is what has happened...
Up until this last Wednesday Brennan was doing over
200 ccs of stool per 12 hour shift. Our doctor was
replacing everything over 75 ccs in his IV and waiting
for the stool to stop to really begin the re-feeding
process. For the first 5 days we were here there was
no decrease, and it actually increased. Then on
Wednesday around noon two friends of Jeff's with
healing gifts came by and prayed over Brennan. Over
the next 24 hours he did only 30 ccs of stool, and he
has not had any stool since Thursday night. The
doctors and nurses are continually expressing their
disbelief. This is a fantastic sign of Brennan's
prognosis, and we are so thankful for God's hand on
Brennan's tiny body and for the many prayers that have
been offered on his behalf. He has gained 1 pound, 12
ounces in his first week here.
Now Brennan's nutrition into his central line is being
gradually decreased, and the formula through his
feeding tube into his small intestine is being
increased in tiny amounts every 12 hours for as long
as he can tolerate it. Please pray for continued
healing in his intestines, that he will be able to
tolerate increasing amounts of the formula, and that
his little body will be protected against any
infections (one of the significant risks we currently
face). our dr is saying we'll be here another 2-3
weeks, and this is much harder logistically than we
had imagined. we are SO thankful for our parents and
friends who have helped us beyond what we would ever
have imagined we would have to ask.
thank you SO much for your thoughts, prayers, support,
cards, gifts. we are experiencing grace in a new way -
an undeserved gift that we cannot repay.
with love and gratitude,
kim, jeff, tommy & brennan eckert
January 31 prayer request mass email
dear friends,
just wanted to let you know that Brennan is doing
really well. I have added some folks to this email
list who have sent prayers or offers to help. let me
know if there is someone I am leaving out.
Brennan will be up to full nutrition within a few
days. we are still waiting for his stool output to
slow down - that is our big prayer request. Also, pray
for Jeff and I to manage the logistics of Tommy at
home and Brennan at the hospital. we've had many
offers of help and are grateful and using them, but it
is still a challenge to coordinate. especially since
we both want to be both places at once.
I will keep you updated on any changes, but he is
clearly feeling better than he probably ever has. and
he's now taking a pacifier, which is a huge blessing -
because he needs to suck (and we need to be able to do
something to soothe him) since he won't have anything
by mouth for over a month.
I'm attaching a few pictures. the one with me is right
after his surgery, so he's way out of it - still
pretty much asleep. in the one with jeff he still has
his arm shields on, but in the last two we've
transitioned to socks on his hands to keep him from
pulling the tube - much better for everyone. and you
can see him with the paci - yeah!!!
my mom has some great ones of him smiling and cooing.
I'll send those another time. please keep praying - we
feel the prayers and are overwhelmed with grace right
now. so much given to us that we can't repay, but we
are so grateful.
much love,
Kim & Jeff Eckert
just wanted to let you know that Brennan is doing
really well. I have added some folks to this email
list who have sent prayers or offers to help. let me
know if there is someone I am leaving out.
Brennan will be up to full nutrition within a few
days. we are still waiting for his stool output to
slow down - that is our big prayer request. Also, pray
for Jeff and I to manage the logistics of Tommy at
home and Brennan at the hospital. we've had many
offers of help and are grateful and using them, but it
is still a challenge to coordinate. especially since
we both want to be both places at once.
I will keep you updated on any changes, but he is
clearly feeling better than he probably ever has. and
he's now taking a pacifier, which is a huge blessing -
because he needs to suck (and we need to be able to do
something to soothe him) since he won't have anything
by mouth for over a month.
I'm attaching a few pictures. the one with me is right
after his surgery, so he's way out of it - still
pretty much asleep. in the one with jeff he still has
his arm shields on, but in the last two we've
transitioned to socks on his hands to keep him from
pulling the tube - much better for everyone. and you
can see him with the paci - yeah!!!
my mom has some great ones of him smiling and cooing.
I'll send those another time. please keep praying - we
feel the prayers and are overwhelmed with grace right
now. so much given to us that we can't repay, but we
are so grateful.
much love,
Kim & Jeff Eckert
January 28 mass email prayer request
dear friends,
I am writing to ask you to pray for my 10 week old
son, Brennan. He was admitted to TC Thompsons
Children's hospital on Friday and will be here for at
least 3 weeks. Brennan has a pretty severe milk
protein allergy that wasn't responding to my dietary
changes, but then about a week ago he started having
symptoms of a stomach virus. apparently the
combination of these two things degenerated the lining
of his digestive system. although we were at the
hospital and the doctor's office three times last
week, doctors didn't figure out what was going on
until it was almost too late. Two weeks ago Brennan
was in the 95th percentile for weight. this past
tuesday night in the ER he had dropped down to 14 lb 2
oz. on Friday afternoon at the doctor he had dropped
to 12 pounds. by the time we were admitted to the
hospital he was so dehydrated that his eyes were
sunken and his skin wrinkled up. he wasn't making eye
contact. it was terrifying. His diagnosis is
intractable diarrhea, sometimes called slick gut
syndrome because he can't absorb fats or proteins. so
he was actually starving to death when he was
admitted. Before the 1980s these babies didn't make
it, but because of the re-feeding technology that
doctors have now, our dr says our little Brennan is
going to be fine, but it's going to be a long road.
we'd love if you would pray for brennan. he undergoes
surgery tomorrow at 3 pm to put in a central line as
well as a feeding tube that goes from his nose to his
small intestine. he will also have an endoscopy to
assess the severity of the damage to his intestines.
all of these things have risks. right now brennan is
putting out more waste that the total volume of blood
in his body, even though he is getting nothing by
mouth and there is nothing going in his digestive
system. because it is so compromised, however, things
are leaking in and out. so our prayer is that this
phase of excessive waste will stop on its own so that
the refeeding program can begin. there are many steps
along the way in this process, but we are trying to
take it one day at a time.
pray also for our sweet 3 year old, Tommy, who is at
his grandparents in Nashville and having a pretty hard
time. he comes home on Wednesday, and we will be
coordinating a 3 year old who needs to be at home and
a 10 week old who can't leave his hospital room b/c of
infection risks. we're not really sure how that's all
going to work.
in all of these things we have been amazed at God's
faithfulness and the moments of grace that have burst
through. our doctor and nurses have been amazing, and
we have been overwhelmed with the outpouring of love
and support we have received. and utterly overwhelmed
with God's presence and comfort. we are also just so
thankful that our little baby made it and is going to
be okay. more thankful than words can express.
thanks for your friendship and prayers.
blessings,
Kim
I am writing to ask you to pray for my 10 week old
son, Brennan. He was admitted to TC Thompsons
Children's hospital on Friday and will be here for at
least 3 weeks. Brennan has a pretty severe milk
protein allergy that wasn't responding to my dietary
changes, but then about a week ago he started having
symptoms of a stomach virus. apparently the
combination of these two things degenerated the lining
of his digestive system. although we were at the
hospital and the doctor's office three times last
week, doctors didn't figure out what was going on
until it was almost too late. Two weeks ago Brennan
was in the 95th percentile for weight. this past
tuesday night in the ER he had dropped down to 14 lb 2
oz. on Friday afternoon at the doctor he had dropped
to 12 pounds. by the time we were admitted to the
hospital he was so dehydrated that his eyes were
sunken and his skin wrinkled up. he wasn't making eye
contact. it was terrifying. His diagnosis is
intractable diarrhea, sometimes called slick gut
syndrome because he can't absorb fats or proteins. so
he was actually starving to death when he was
admitted. Before the 1980s these babies didn't make
it, but because of the re-feeding technology that
doctors have now, our dr says our little Brennan is
going to be fine, but it's going to be a long road.
we'd love if you would pray for brennan. he undergoes
surgery tomorrow at 3 pm to put in a central line as
well as a feeding tube that goes from his nose to his
small intestine. he will also have an endoscopy to
assess the severity of the damage to his intestines.
all of these things have risks. right now brennan is
putting out more waste that the total volume of blood
in his body, even though he is getting nothing by
mouth and there is nothing going in his digestive
system. because it is so compromised, however, things
are leaking in and out. so our prayer is that this
phase of excessive waste will stop on its own so that
the refeeding program can begin. there are many steps
along the way in this process, but we are trying to
take it one day at a time.
pray also for our sweet 3 year old, Tommy, who is at
his grandparents in Nashville and having a pretty hard
time. he comes home on Wednesday, and we will be
coordinating a 3 year old who needs to be at home and
a 10 week old who can't leave his hospital room b/c of
infection risks. we're not really sure how that's all
going to work.
in all of these things we have been amazed at God's
faithfulness and the moments of grace that have burst
through. our doctor and nurses have been amazing, and
we have been overwhelmed with the outpouring of love
and support we have received. and utterly overwhelmed
with God's presence and comfort. we are also just so
thankful that our little baby made it and is going to
be okay. more thankful than words can express.
thanks for your friendship and prayers.
blessings,
Kim
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