I wish that I could share the truly, overwhelming joy that I am feeling this evening. Clara is eating. In fact, she is eating so much, that I am no longer charting estimates of how much she ate of what foods. Instead, I have adapted the chart to simply remind me of what a normal toddler is supposed to eat in a day. How may servings of dairy, protein, grains, fruits, veggies, milk, other fluids, etc. And since we have had no experience with this thing called solid foods, I have little reminders next to each category detailing what a serving size is of each. It is incredible that the 13th day of Clara's "wean" from NG feeds, I can officially say she knows how to eat until full.
Yesterday she ate an entire banana as part of her breakfast and an entire banana as part of lunch. PART. This morning's breakfast was a banana, a quarter of a jumbo egg, 2 oz of 2% milk (she no longer requires that it be coffee flavored so we will be moving her to whole milk tomorrow), an oz of yogurt and a quarter of a strip of bacon. Also remarkable today was her dinner: an entire carton of yogurt, two servings of lasagna, and a quarter of a banana for dessert. She's never had tomato/meat sauce presented to her before and she usually is handed a chunk of food that she bites off her preferred bite size. When I dolloped some of my meat sauce on her tray, she simply went to town. Didn't make a peep and absolutely knew how to get that food in her mouth with her little fine motor skill fingers. Honestly, the picture of her orange mouth stained in tomato sauce was just the most incredible sight....again no actual pictures to show the proof. This pregnant mama was hungry and didn't have the camera nearby. Plus, I might have ruined her progress!
Alan and I are both so, so very happy tonight. I feel great knowing this baby in my belly is not coming early and that there are no other signs of complications. Alan felt great knowing he fed her that carton of yogurt and then only had to watch as she devoured that lasagna and banana. We both felt great as we watched her play so happily and completely independently while we started the pre-bedtime routine of turning on the evening news. After she eats, there is such a difference in her demeanor. She has always had the most incredible disposition, but since she has started eating on her own, you can tell she is proud. She has this new found sense of independence and ability and she is so ready to tackle the world with her big smile across her face and her head thrown back in laughter.
I will admit, I'm ready to pull this tube out. But, I am cautiously optimistic at this point. We will wait to see what her weight is on Monday. Hopefully about where she was last Monday and not lower. We hear it can take about 2-3 months for kids to start gaining weight after being weaned from tube feeding. I don't think it will take her that long. But until we talk to the doctors and until we figure out some sort way of getting her meds down consistently and without too much trauma, we will leave it in as a fluid/nutrients back up and a meds administration aid.
Saturday, July 30, 2011
Friday, July 29, 2011
Baby Girl Boyle #2!
We are overdue in our fully public announcement that Clara is going to be a big sister! Baby Girl Boyle is due November 30. I have been feeling contractions for about a week and resultantly got an ultrasound at the hospital today to make sure everything is okay. I'm not in preterm labor, and will be headed to the clinic this afternoon for the on-call Doctor to rule out any other possible complications.
After telling the Doctors about Clara during the ultrasound, they took quite an interest in her story. They decided that since I was already there and since the baby is a perfect age for 3D pictures, why not take a few (8) while we talked?
These are my favorites!
After telling the Doctors about Clara during the ultrasound, they took quite an interest in her story. They decided that since I was already there and since the baby is a perfect age for 3D pictures, why not take a few (8) while we talked?
These are my favorites!
Thursday, July 28, 2011
Wean Day 11
Today was so so. She did show better coordination with the noodles which is why she ate so much more. I am writing these notes late at the end of the day and feel like I am missing an entire meal somehow. I am getting better at noticing when she is getting hungry and trying to act quickly when she shows signs that she is hungry again vs watching the clock. She is also doing a great job of asking for something to drink. Breakfast definitely seems to be her best meal of the day. Never expected that. Perhaps I should be feeding her breakfast at every meal. She also seems to be over peanut butter and into yogurt. It's nice to see trends and preferences developing. Clearly still likes salty foods as she couldn't have been more insistent when Daddy pulled out the chips and queso tonight. She wanted those fritos! And we've never seen her eat so many. I still don't think she is chewing them...which makes me wonder how she is possibly comfortably swallowing some of these more "hard to eat" foods that she loves so much.
Wednesday, July 27, 2011
Progress! Eating meals and drinking milk!
Day 10:This day was so fabulous that I almost feel like I don't want/need to take notes. But it is so important to remember this day! Day 10. Clara had 3 meals and 1 snack today.
Breakfast: We started out the morning at 9:30 with a waffle on the couch while we watched the Today Show. I was hoping she might duplicate what she did on Monday when we were waiting at the hospital. No such thing. She nibbled. Hardly. So I became a bit more hardball and told her we really did have to eat. I sat her in her highchair and made some oatmeal for Alan who was feeling nauseous today. She ate about a Tablespoon of what I reserved for her. Then ate 1/4 of a jumbo egg, 1/4 strip of thick cut bacon, an oz of yogurt and about 3 oz of milk flavored with coffee out of her coffee cup. We call it coffee, of course. She was so intently eating and so happily. I had no idea that 1.5 hours had passed since she first sat down to eat! This put all her meds behind, but who cares?!?!
Lunch: I was surprised she was actually okay with sitting down to eat again, but she really enjoyed the new fusilli pasta I made her. It is hard for her to eat much of it though as her chewing skills are still developing. It would take her forever to get a full meal of pasta. So, I pulled out some yogurt once she slowed down on the pasta. She ate the rest of the yogurt save a few bites. So proud!
Snack: Since she accepted banana yesterday, I pulled it out again today. I gave her a really large piece of a large banana so she could get both hands around it really well. She did a great job of holding it until she had eaten about half of it and it was getting really slippery. I rolled it in some graham cracker crumbs but was afraid this would change it enough that she wouldn't be interested. Instead, her interest simply changed to eating the globby bits of crumb/banana that she could scrap off the banana. Make-shift banana pudding! I mashed it a bit and added more cracker crumbs, but then that made her loose interest.
Dinner: Alan did Clara's dinner while I made our dinner. She had scrambled eggs again - amazing Daddy with her skills. And more banana. Again, Daddy was very proud. He asked if she usually ate this much (at the time 1 adult bite). I reminded him she had only been touching banana to her lips for a long while until yesterday. Today she was really taking large bites an mashing it really well as her gums would come down around it. Her whole mouth was involved. Once she tired of that, we pulled out a new baby food-pear blueberry oats. I'm not even sure it is allowed as it is technically in the "thin-skinned" fruits category. I don't know if it has been cooked or pasturized before pureed. I hope it's okay. She ate about an oz of that. Totally new food and completely new flavors, yet she tolerated it. Once our dinner was done, she tried her best to eat some of my rice and although I thought she would have loved the dijon, heavy cream, thyme chicken we had, she only picked it up and put it back down to pick up rice instead. (She does love rice although she really fails at eating it.)
Such an amazing day. Way to go, Clara!
Breakfast: We started out the morning at 9:30 with a waffle on the couch while we watched the Today Show. I was hoping she might duplicate what she did on Monday when we were waiting at the hospital. No such thing. She nibbled. Hardly. So I became a bit more hardball and told her we really did have to eat. I sat her in her highchair and made some oatmeal for Alan who was feeling nauseous today. She ate about a Tablespoon of what I reserved for her. Then ate 1/4 of a jumbo egg, 1/4 strip of thick cut bacon, an oz of yogurt and about 3 oz of milk flavored with coffee out of her coffee cup. We call it coffee, of course. She was so intently eating and so happily. I had no idea that 1.5 hours had passed since she first sat down to eat! This put all her meds behind, but who cares?!?!
Lunch: I was surprised she was actually okay with sitting down to eat again, but she really enjoyed the new fusilli pasta I made her. It is hard for her to eat much of it though as her chewing skills are still developing. It would take her forever to get a full meal of pasta. So, I pulled out some yogurt once she slowed down on the pasta. She ate the rest of the yogurt save a few bites. So proud!
Snack: Since she accepted banana yesterday, I pulled it out again today. I gave her a really large piece of a large banana so she could get both hands around it really well. She did a great job of holding it until she had eaten about half of it and it was getting really slippery. I rolled it in some graham cracker crumbs but was afraid this would change it enough that she wouldn't be interested. Instead, her interest simply changed to eating the globby bits of crumb/banana that she could scrap off the banana. Make-shift banana pudding! I mashed it a bit and added more cracker crumbs, but then that made her loose interest.
Dinner: Alan did Clara's dinner while I made our dinner. She had scrambled eggs again - amazing Daddy with her skills. And more banana. Again, Daddy was very proud. He asked if she usually ate this much (at the time 1 adult bite). I reminded him she had only been touching banana to her lips for a long while until yesterday. Today she was really taking large bites an mashing it really well as her gums would come down around it. Her whole mouth was involved. Once she tired of that, we pulled out a new baby food-pear blueberry oats. I'm not even sure it is allowed as it is technically in the "thin-skinned" fruits category. I don't know if it has been cooked or pasturized before pureed. I hope it's okay. She ate about an oz of that. Totally new food and completely new flavors, yet she tolerated it. Once our dinner was done, she tried her best to eat some of my rice and although I thought she would have loved the dijon, heavy cream, thyme chicken we had, she only picked it up and put it back down to pick up rice instead. (She does love rice although she really fails at eating it.)
Such an amazing day. Way to go, Clara!
Tuesday, July 26, 2011
Wean Day 9
After seeing Clara's weight drop so much, we decided to reconsider giving her fluids during the day and as she goes to bed at night. I took another look at how another mom chronicled her son's progress and amended her approach for her son to fit how Clara is doing at this point. So, we are now giving her 60ml (2oz) of formula 4x/day and then 175ml as she goes to bed. She is drinking enough during the day that combined this makes me feel better about her whole hydration, plus making sure she gets more calories...even if that still isn't nearly enough. The best part about today was that she started out by drinking milk from a coffee cup. 100% milk is a lot better than water with a tiny tiny bit of milk mixed in. Guess the coffee cup is cool enough to make anything taste good.
Breakfast: So excited to see her drink milk this morning! She also ate some of everything I put on her plate. Waffle, scrambled eggs and banana. I haven't seen her actually take bites of banana in a long time. Also very exciting. She spilled her coffee/milk all over her tray and lost interest in her food after it got cold and soggy. After re-toasting her waffle, she ate another good few bites.
Snack: An hour after breakfast she found an empty box of wheat thins and was insisten that we give her some. I finally got her distracted with Ritz crackers of which she ate a few bites. She then became fixated on playing with the milk in her coffee cup, playing with it with her hands, holding it to her face and talking into the mug, and drinking it. Good fun!
Lunch: She basically refused lunch.
Snack:After her nap, she found the wheat thins box again (I should have thrown it away). Thank goodness she accepted Ritz, then Goldfish. She then had a whole lot of fun with her different cups playing with, and (hardly) drinking from them. She tasted the tunafish on a couple of occasions while moving it from the bowl to her fork to the cup to the bowl. Once she was all done, I actually toasted a waffle and we sat in front of the TV. She ate a good amount and then announced all done.
Dinner: Thank goodness for Daddy! Clara ate none of the breakfast sausage I served her but loved the fusilli again. She was also more successful at eating them. She said she was all done and I was pretty depressed about how little she ate today without seeming affected by it. I'm starting to see her face really slim down though. Daddy said she needed to eat and he would do it. Wahoo! 3.5 oz of yogurt and 1.5 Tbsp of peanut butter!
Breakfast: So excited to see her drink milk this morning! She also ate some of everything I put on her plate. Waffle, scrambled eggs and banana. I haven't seen her actually take bites of banana in a long time. Also very exciting. She spilled her coffee/milk all over her tray and lost interest in her food after it got cold and soggy. After re-toasting her waffle, she ate another good few bites.
Snack: An hour after breakfast she found an empty box of wheat thins and was insisten that we give her some. I finally got her distracted with Ritz crackers of which she ate a few bites. She then became fixated on playing with the milk in her coffee cup, playing with it with her hands, holding it to her face and talking into the mug, and drinking it. Good fun!
Lunch: She basically refused lunch.
Snack:After her nap, she found the wheat thins box again (I should have thrown it away). Thank goodness she accepted Ritz, then Goldfish. She then had a whole lot of fun with her different cups playing with, and (hardly) drinking from them. She tasted the tunafish on a couple of occasions while moving it from the bowl to her fork to the cup to the bowl. Once she was all done, I actually toasted a waffle and we sat in front of the TV. She ate a good amount and then announced all done.
Dinner: Thank goodness for Daddy! Clara ate none of the breakfast sausage I served her but loved the fusilli again. She was also more successful at eating them. She said she was all done and I was pretty depressed about how little she ate today without seeming affected by it. I'm starting to see her face really slim down though. Daddy said she needed to eat and he would do it. Wahoo! 3.5 oz of yogurt and 1.5 Tbsp of peanut butter!
Wean Day 8 plus Hospital Visit
Monday started out great as Clara ate almost half a waffle while we waited to have her weekly labs drawn. After over half an hour the nurse came to get us for ...surprise!... Admission to the Day Hospital for IVIG. They didn't tell me this appointment was for IVIG. Completely unprepared for. 5+ hour day at the hospital, I called Alan to have him bring more food for Clara, toys, her meds for the morning and afternoon, and most urgently - a cup of coffee. I hate IVIG days.
Clara had an allergic reaction to IVIG the first time she got it so they premedicate her with benadryl before the infusion which makes her a real grumpy fussy face. That threw off any anticipated gains in her eating. In fact, she didn't eat anything until that night when Alan brought home pizza and, for Clara, a chocolate shake. She refused it at first and then drank more than either Alan or I had.
Alan and I are revising her nutrition plan again after seeing her weight. She dropped from 7.9kg last Wednesday (her highest ever has been 8.05kg) to 7.55kg on Monday. That is 4.5% weight loss. None of us were happy to see that number, but it was also expected that she would have dropped. She has plateaued at that 7.9kg for a couple of months now and the only thing we could expect was for her to drop her weight since I quit feeding her and she is just not eating enough on her own yet. Fortunately, her kidney numbers and electrolytes look great. I'll talk more about the latest plan in my next post.
We did find out as we were leaving the hospital that Clara's white blood count is low again. Just like 3.5 weeks ago when she got IVIG. I'm not sure what is causing this and am trying to not be overly concerned. I hope she is just fighting a little something and slowly depleting her white count over the course of a month. We are expecting a call from the nurse practitioner today regarding taking labs less frequently (every 1.5 weeks instead of every week) because her numbers have been very steady for so long and we aren't having to make changes in her medications anymore. The plan for removing her Hickman central IV line has changed a bit - we are now waiting to find out about the health of her 6 month marrow from last week. Once you have both a good looking 6 month marrow and don't need to draw labs more than about 1.5 weeks, they are more confident that you will no longer need further therapy and will discuss scheduling taking the line out. This was great to hear yesterday, but considering the fact that she seems to be dependent on the IVIG every 4 weeks, I assume that will delay line removal. We will see when I talk to the NP later today.
Clara had an allergic reaction to IVIG the first time she got it so they premedicate her with benadryl before the infusion which makes her a real grumpy fussy face. That threw off any anticipated gains in her eating. In fact, she didn't eat anything until that night when Alan brought home pizza and, for Clara, a chocolate shake. She refused it at first and then drank more than either Alan or I had.
Alan and I are revising her nutrition plan again after seeing her weight. She dropped from 7.9kg last Wednesday (her highest ever has been 8.05kg) to 7.55kg on Monday. That is 4.5% weight loss. None of us were happy to see that number, but it was also expected that she would have dropped. She has plateaued at that 7.9kg for a couple of months now and the only thing we could expect was for her to drop her weight since I quit feeding her and she is just not eating enough on her own yet. Fortunately, her kidney numbers and electrolytes look great. I'll talk more about the latest plan in my next post.
We did find out as we were leaving the hospital that Clara's white blood count is low again. Just like 3.5 weeks ago when she got IVIG. I'm not sure what is causing this and am trying to not be overly concerned. I hope she is just fighting a little something and slowly depleting her white count over the course of a month. We are expecting a call from the nurse practitioner today regarding taking labs less frequently (every 1.5 weeks instead of every week) because her numbers have been very steady for so long and we aren't having to make changes in her medications anymore. The plan for removing her Hickman central IV line has changed a bit - we are now waiting to find out about the health of her 6 month marrow from last week. Once you have both a good looking 6 month marrow and don't need to draw labs more than about 1.5 weeks, they are more confident that you will no longer need further therapy and will discuss scheduling taking the line out. This was great to hear yesterday, but considering the fact that she seems to be dependent on the IVIG every 4 weeks, I assume that will delay line removal. We will see when I talk to the NP later today.
Sunday, July 24, 2011
NG Wean: Days 6 and 7
Day 6
Breakfast was in 2 phases. She didn't act particularly hungry when we sat down to eat at 9. She did eat her largest amount of waffle and enjoyed watching me make scrambled eggs, coffee and heating her lil smokies. Once the eggs and sausage came, she was interested in both but only touched the sausages. You could tell she was really interested in the texture of the eggs in her mouth and she would inspect the strands of egg that would hang off the chunck that was in her hands. It wasn't until 11 (NPO for Prograf at 10) that she finally ate with signs of hunger. She was quite fussy in a normal toddler way throwing mini fits if she didn't get her way. I assumed it was hunger and reheated her breakfast. No interest. I brought the banana yogurt and she would lick her lips if I touched it to her but she didn't open her mouth for more. I decided to pull out her new toddler spoon and pretend feed her rubber ducky. She got into feeding the ducky and attempted to eat the yogurt off of his tail (the yogurt was on his beak) but still didn't respond to the spoon of yogurt on her mouth. I scooped some yogurt into one of the dividers on her tray. I didn't tell her what was I doing...just walked away. She immediately picked up her spoon and began to dip her spoon to eat the yogurt. Within a couple of minutes she made a little fuss. I joined her and she both fed herself, let me put more on her baby spoon with her toddler spoon, and let me feed her with the toddler spoon. 2 oz later she was done. I called the fellow to let him know we didn't have a poop yesterday and was concerned if we didn't see one today. He said to wait until Monday at which point I told him we have a clinic visit scheduled. She pooped a beautiful, well-formed, solid foods poop during the call. Much happier baby.
Lunch was really more of a snack at 1 before her nap. She was really tired and in quite a daze after having listened to some classical music with Alan. I knew we would have to depend on the old staple of a peanut butter sandwich. She quite refused it and goldfish crackers until Alan and I both sat down in the dining room with her. We turned away from her and chatted while she picked up the sandwich and ate. She finally drank bit more (she hadn't had anything from her straw cup since she first woke up this morning.). Again we played with sipping and then squeezing the straw to make it squeal. After her nap, we played for a bit before sitting down to eat a snack at 4:30. I fixed a Gerber toddler meal of pasta and green beans. It was as I had hoped a fairly good finger food meal but she had a hard time with how slippery it was. She kept scrunching her nose at the green beans but continued to put it in her mouth as best she could. Alan sat with her for this meal and tried to assist her. She would get pretty indignant. She fairly quickly chirped "Dah!" (done) over and over with a smile and the hand signs. We immediately cleaned her up but then set up a picnic of cheese, crackers and turkey breast...she immediately began eating her slice of cheese after I had handed "Daddy's cheese" and "Mommy's cheese" out. She picked hers right up. Once she got tired of that we added a bit of peanut butter on her baby spoon from her toddler knife. That got the eating going again and she was more interested in the Ritz cracker.
Dinner was surprising as she actually tore pieces of bacon off and ate it. She was really enjoying holding and being able to eat the fusilli pasta. I had a feeling that would be a fun one for her. You could tell she wanted more than the rate she was able to eat. She kept trying to eat the bowl it was in. Knowing she tried as hard as she could, but that it was getting too close to bedtime, we put her to bed with a 175ml formula feed so she didn't go to bed hungry.
Day 7
Today was fairly frustrating for each of us. Clara is continuing to do a great job. Intake is no where near where we want it. Decided supplementing with formula is a good thing to give her enough energy throughout the day. She is still building skills necessary to eat the solid finger foods she prefers. We are trying to give her the opportunity to eat yogurt and other spoon-fed foods throughout the day so that if she is hungry, she CAN eat enough to become satiated or full. That is also why we pulled out the chocolate shake again. She enjoyed taking turns with Mommy and Daddy as we all drank from the same shake. Frustrated by a decreased interest in her straw cup, I started a window sill of different cups and bottles for her to choose from. It worked well. Today's drop in attitude from Clara and Mommy had to do with Clara's decision to throw a fit about naptime. Naptime ended up being a 3 hour ordeal. She is rarely upset by anything and rarely cries. I fear the independence of a true toddler is coming out. She even threw her face into her hands a couple of times to show that she was upset...about nothing. :-/ Hoping labs look okay tomorrow. Night feeds aren't working out too well, and we have been at 600+ as her total fluids the past couple of days not 800. She has been peeing plenty, so I'm not worried about dehydration on a macro level. Hope her kidneys are okay.
Breakfast was in 2 phases. She didn't act particularly hungry when we sat down to eat at 9. She did eat her largest amount of waffle and enjoyed watching me make scrambled eggs, coffee and heating her lil smokies. Once the eggs and sausage came, she was interested in both but only touched the sausages. You could tell she was really interested in the texture of the eggs in her mouth and she would inspect the strands of egg that would hang off the chunck that was in her hands. It wasn't until 11 (NPO for Prograf at 10) that she finally ate with signs of hunger. She was quite fussy in a normal toddler way throwing mini fits if she didn't get her way. I assumed it was hunger and reheated her breakfast. No interest. I brought the banana yogurt and she would lick her lips if I touched it to her but she didn't open her mouth for more. I decided to pull out her new toddler spoon and pretend feed her rubber ducky. She got into feeding the ducky and attempted to eat the yogurt off of his tail (the yogurt was on his beak) but still didn't respond to the spoon of yogurt on her mouth. I scooped some yogurt into one of the dividers on her tray. I didn't tell her what was I doing...just walked away. She immediately picked up her spoon and began to dip her spoon to eat the yogurt. Within a couple of minutes she made a little fuss. I joined her and she both fed herself, let me put more on her baby spoon with her toddler spoon, and let me feed her with the toddler spoon. 2 oz later she was done. I called the fellow to let him know we didn't have a poop yesterday and was concerned if we didn't see one today. He said to wait until Monday at which point I told him we have a clinic visit scheduled. She pooped a beautiful, well-formed, solid foods poop during the call. Much happier baby.
Lunch was really more of a snack at 1 before her nap. She was really tired and in quite a daze after having listened to some classical music with Alan. I knew we would have to depend on the old staple of a peanut butter sandwich. She quite refused it and goldfish crackers until Alan and I both sat down in the dining room with her. We turned away from her and chatted while she picked up the sandwich and ate. She finally drank bit more (she hadn't had anything from her straw cup since she first woke up this morning.). Again we played with sipping and then squeezing the straw to make it squeal. After her nap, we played for a bit before sitting down to eat a snack at 4:30. I fixed a Gerber toddler meal of pasta and green beans. It was as I had hoped a fairly good finger food meal but she had a hard time with how slippery it was. She kept scrunching her nose at the green beans but continued to put it in her mouth as best she could. Alan sat with her for this meal and tried to assist her. She would get pretty indignant. She fairly quickly chirped "Dah!" (done) over and over with a smile and the hand signs. We immediately cleaned her up but then set up a picnic of cheese, crackers and turkey breast...she immediately began eating her slice of cheese after I had handed "Daddy's cheese" and "Mommy's cheese" out. She picked hers right up. Once she got tired of that we added a bit of peanut butter on her baby spoon from her toddler knife. That got the eating going again and she was more interested in the Ritz cracker.
Dinner was surprising as she actually tore pieces of bacon off and ate it. She was really enjoying holding and being able to eat the fusilli pasta. I had a feeling that would be a fun one for her. You could tell she wanted more than the rate she was able to eat. She kept trying to eat the bowl it was in. Knowing she tried as hard as she could, but that it was getting too close to bedtime, we put her to bed with a 175ml formula feed so she didn't go to bed hungry.
Day 7
Today was fairly frustrating for each of us. Clara is continuing to do a great job. Intake is no where near where we want it. Decided supplementing with formula is a good thing to give her enough energy throughout the day. She is still building skills necessary to eat the solid finger foods she prefers. We are trying to give her the opportunity to eat yogurt and other spoon-fed foods throughout the day so that if she is hungry, she CAN eat enough to become satiated or full. That is also why we pulled out the chocolate shake again. She enjoyed taking turns with Mommy and Daddy as we all drank from the same shake. Frustrated by a decreased interest in her straw cup, I started a window sill of different cups and bottles for her to choose from. It worked well. Today's drop in attitude from Clara and Mommy had to do with Clara's decision to throw a fit about naptime. Naptime ended up being a 3 hour ordeal. She is rarely upset by anything and rarely cries. I fear the independence of a true toddler is coming out. She even threw her face into her hands a couple of times to show that she was upset...about nothing. :-/ Hoping labs look okay tomorrow. Night feeds aren't working out too well, and we have been at 600+ as her total fluids the past couple of days not 800. She has been peeing plenty, so I'm not worried about dehydration on a macro level. Hope her kidneys are okay.
Friday, July 22, 2011
1st day of no NG feeds
I'm jumping into the story quite a bit in order to quickly update friends and family that have heard we are weaning Clara off of NG tube feedings. She has been putting food to her mouth for about 4 months now. Initially, it was simply uninteresting and she was dealing with daily nausea. In the last month, she began to be fully interested in what we were eating - or drinking. OT told us that she had very immature tongue and mouth behaviors (because all she has done with her mouth is suck on a pacifier). We worked on a couple of exercises and stopped giving her a sippy cup- to try to correct her tongue thrust and to get her to gum/chew on objects and food. 3 weeks ago she would only bite some very easily dissolved veggie chips with her top teeth and her tongue. This past weekend, she ate an entire peanut butter sandwich. HUGE changes. We new she was ready to eat on her own.
I don't have good summary notes of our first few days of this process. We basically slowly reduced how much formula we gave her through the tube by 30%, then 50% for a couple of days, then 70%. Today, we only gave her pedialyte to keep her hydrated. I began a very detailed chart the first day of the wean which keeps track of the foods I gave her, how much she ate, how much she liked/disliked them, how many pee vs poo diapers she had, how much formula via tube vs water by mouth she drank. There is a main planning page which pulls summary data from each daily tab. I send it to the doctors so they can know how she is doing as we go through the process. Yesterday, I began a descriptive summary of "thoughts" in addition to the factual information. It helps me remember the touchy feeling part of what is happening and kind of explains for the doctors why she might or might not have gotten what I had told them I planned to do.
I thought you all might like to be able to read the summary parts of it so you can keep up with how she is doing. The days are long and hard and involve quite a bit of fixing and cleaning up food. So the notes will be lacking in much structure. But you'll be able to hear some of what happened at least!
Wean Day 4:
she ate lots of snacky bits all day and the messes got so out of control that I couldn't mentally keep up with how much she ate of what and what the nutritional value was for each. We woke up at 5:45am with her newly placed NG hanging out…tired mommy by mid day. She did eat lots of goldfish and lots of peanut butter at dinner; fair amount of cheese consumption over the day as well as chocolate pediasure and chocolate shake cumulatively. I'm getting a little bit more worried as a mother simply because I have been so focused on getting her NG feeds perfect for so long. To not feed her is stressful. And I worry about not being able to make up for her hydration at night if she doesn't pick up her drinking during the day. She seems to drink the most after sleeping and in the evenings. 800ml is a lot to give her overnight without waking up simply to change her diaper. She finally has learned to sleep completely through the night despite her 11pm and 12am meds. I am pretty hopeful about tomorrow. I think it is time to make her eat all on her own. If anything, I will give her pedialyte during the day. Not formula. I have lots new food options for her tomorrow including higher fat and more dense in calorie options. It's time to do this. I know she can do this.
Wean Day 5:
I was really proud of her at breakfast. 3 new foods presented to her and she tasted and repeated bites of each. Needs to up the intake but loved seeing the interest in each. She was able to enjoy the lil smokies sliced in half as well as in little bity pieces. For her peanut butter sandwich, she is taking bites out of a sandwich as well as tearing pieces off to put in her mouth. I showed her how to lick food off her index finger a long time ago and that has been a skill she likes practicing. Today she advanced to licking off her middle and ring finger at the same time. She has also discovered that if she drinks long and hard on the straw cup, and then squeezes the straw, it will squeal as air sucks back into the cup. We are making it a bit of a game to increase her drinking. Worked well this morning. she is also getting better at feeding herself from a spoon. She really likes to dip her spoon into the yogurt cup. But intake goes down once she does. She will still let me feed her with another spoon or the one she is playing with but then gets frustrated and decides she's had enough of this activity and food. She tried to drink from the yogurt cup at one point when she realized that was what I had put in her mouth and she wanted more. The chocolate chip cookie was fun because she was trying to put it on her new toddler fork and eat from the fork. It didn't work too well but when it didn't work, she would just pick up a piece and take a bite. This afternoon we had a friend over to watch her while I prepared a finger foods with dips picnic. She was too excited by the fun of a visitor so we moved to the highchair where she finally accepted some peanut butter after refusing so many things. After about a Tbsp of peanut butter on a spoon, she ate 2 oz of yogurt. You could tell the hunger had kicked in and that this food was easy to eat alot of the most quickly. The same thing happened at dinner. She ate almost 3 oz of yogurt after refusing or being frustrated by the process of picking up rice mixed with the veggies I had prepared earlier. She got to a very very frustrated point although kept eating the yogurt for a while. When we finished, she sat on the porch with Alan and very well coordinated eating some chocolate chip cookie (almost no crumbs...just cookie gone) while reading a book.
I don't have good summary notes of our first few days of this process. We basically slowly reduced how much formula we gave her through the tube by 30%, then 50% for a couple of days, then 70%. Today, we only gave her pedialyte to keep her hydrated. I began a very detailed chart the first day of the wean which keeps track of the foods I gave her, how much she ate, how much she liked/disliked them, how many pee vs poo diapers she had, how much formula via tube vs water by mouth she drank. There is a main planning page which pulls summary data from each daily tab. I send it to the doctors so they can know how she is doing as we go through the process. Yesterday, I began a descriptive summary of "thoughts" in addition to the factual information. It helps me remember the touchy feeling part of what is happening and kind of explains for the doctors why she might or might not have gotten what I had told them I planned to do.
I thought you all might like to be able to read the summary parts of it so you can keep up with how she is doing. The days are long and hard and involve quite a bit of fixing and cleaning up food. So the notes will be lacking in much structure. But you'll be able to hear some of what happened at least!
Wean Day 4:
she ate lots of snacky bits all day and the messes got so out of control that I couldn't mentally keep up with how much she ate of what and what the nutritional value was for each. We woke up at 5:45am with her newly placed NG hanging out…tired mommy by mid day. She did eat lots of goldfish and lots of peanut butter at dinner; fair amount of cheese consumption over the day as well as chocolate pediasure and chocolate shake cumulatively. I'm getting a little bit more worried as a mother simply because I have been so focused on getting her NG feeds perfect for so long. To not feed her is stressful. And I worry about not being able to make up for her hydration at night if she doesn't pick up her drinking during the day. She seems to drink the most after sleeping and in the evenings. 800ml is a lot to give her overnight without waking up simply to change her diaper. She finally has learned to sleep completely through the night despite her 11pm and 12am meds. I am pretty hopeful about tomorrow. I think it is time to make her eat all on her own. If anything, I will give her pedialyte during the day. Not formula. I have lots new food options for her tomorrow including higher fat and more dense in calorie options. It's time to do this. I know she can do this.
Wean Day 5:
I was really proud of her at breakfast. 3 new foods presented to her and she tasted and repeated bites of each. Needs to up the intake but loved seeing the interest in each. She was able to enjoy the lil smokies sliced in half as well as in little bity pieces. For her peanut butter sandwich, she is taking bites out of a sandwich as well as tearing pieces off to put in her mouth. I showed her how to lick food off her index finger a long time ago and that has been a skill she likes practicing. Today she advanced to licking off her middle and ring finger at the same time. She has also discovered that if she drinks long and hard on the straw cup, and then squeezes the straw, it will squeal as air sucks back into the cup. We are making it a bit of a game to increase her drinking. Worked well this morning. she is also getting better at feeding herself from a spoon. She really likes to dip her spoon into the yogurt cup. But intake goes down once she does. She will still let me feed her with another spoon or the one she is playing with but then gets frustrated and decides she's had enough of this activity and food. She tried to drink from the yogurt cup at one point when she realized that was what I had put in her mouth and she wanted more. The chocolate chip cookie was fun because she was trying to put it on her new toddler fork and eat from the fork. It didn't work too well but when it didn't work, she would just pick up a piece and take a bite. This afternoon we had a friend over to watch her while I prepared a finger foods with dips picnic. She was too excited by the fun of a visitor so we moved to the highchair where she finally accepted some peanut butter after refusing so many things. After about a Tbsp of peanut butter on a spoon, she ate 2 oz of yogurt. You could tell the hunger had kicked in and that this food was easy to eat alot of the most quickly. The same thing happened at dinner. She ate almost 3 oz of yogurt after refusing or being frustrated by the process of picking up rice mixed with the veggies I had prepared earlier. She got to a very very frustrated point although kept eating the yogurt for a while. When we finished, she sat on the porch with Alan and very well coordinated eating some chocolate chip cookie (almost no crumbs...just cookie gone) while reading a book.
6 months since transplant
It has been 6 months since transplant!
In the past few weeks, Clara scared us all with an illness that could only be seen in her lab work, and she recovered quickly.
My parents came to visit for a glorious 10 days. We all rejoiced in the normalcy of the visit relative to their previous visits during chemo, PICU, pre/post-transplant, and daily nausea. We had adventures to Muir Woods, San Francisco, Ridge Winery, and a local restaurant. We sipped wine every evening in our front courtyard after Clara went to bed. We grilled fabulous meals or ate miraculous meals concocted from nothingness by my mother when we didn't plan ahead. Clara showed the beginnings of toddling and learned how to smell flowers and pant like a dog and say "isateht" (It's a tent!) while hiding under a blanket with Mimi and saying "shhh" while placing a finger over Mimi's nose. She loved to snuggle her Popsy although continued to think him a puppy throughout the trip. Barking or panting each time we said his name. She grew up quickly while they were here and created quite a bond with them. We have had a couple of Skype video calls, and you can tell she remembers them. She really couldn't care that Alan and I were here as long as they were around. It is painful that they will be apart for so much of her early life. Perhaps we will see them even more frequently next year and during much better circumstances.
Their visit gave me quite a break. Although, I was so fearful it wasn't going to be enough and felt quite a bit of guilt for wishing I could have more. After they left, we stepped back into our routine well - and it became clear that Clara was ready for a new, big step. Eating. She is discovering the world of new flavors and textures and the feeling of satiation of hunger due to her own efforts to eat. She has shown outward signs of pride in this new independence. And it seems to be going hand in hand with the physical milestone of standing on her own which she is very close to mastering as well as walking on her own. She is now standing without the aid of a piece of furniture and will even begin walking and taking a few cautious steps to her next destination.
With all this excitement and the attention these developments require of me, I haven't blogged at all! But we do have some home videos posted which you can view by clicking on the "Clara's Home Videos" link on the right hand side of the blog anytime.
We are also very heavily involved in what is called a "Rapid Wean" as we take Clara off of NG tube nutrition and force her to learn hunger and that only she can fix it. She is doing very well, but we also have to be very careful of dehydration. As a result, I have developed quite an extensive charting system through excel which I send to the Drs each day. Each day involves a new tab where I journal a bit about how the day went. So many of you have expressed interest in how the wean is going and I hope to be able to use that part of her charting to update the blog and keep you all informed. We cannot wait to have Clara without an NG. She has had it for 10 of her 15 months of life. And we are close to being able to pull it out for good.
We love you all and thank you all for the continued support and interest in our amazing daughter. She is so full of love for life. We will keep you up to date once we have details on the 6 month bone marrow testing that they did on Wednesday this week. We should know more in 1 to 2 weeks.
In the past few weeks, Clara scared us all with an illness that could only be seen in her lab work, and she recovered quickly.
My parents came to visit for a glorious 10 days. We all rejoiced in the normalcy of the visit relative to their previous visits during chemo, PICU, pre/post-transplant, and daily nausea. We had adventures to Muir Woods, San Francisco, Ridge Winery, and a local restaurant. We sipped wine every evening in our front courtyard after Clara went to bed. We grilled fabulous meals or ate miraculous meals concocted from nothingness by my mother when we didn't plan ahead. Clara showed the beginnings of toddling and learned how to smell flowers and pant like a dog and say "isateht" (It's a tent!) while hiding under a blanket with Mimi and saying "shhh" while placing a finger over Mimi's nose. She loved to snuggle her Popsy although continued to think him a puppy throughout the trip. Barking or panting each time we said his name. She grew up quickly while they were here and created quite a bond with them. We have had a couple of Skype video calls, and you can tell she remembers them. She really couldn't care that Alan and I were here as long as they were around. It is painful that they will be apart for so much of her early life. Perhaps we will see them even more frequently next year and during much better circumstances.
Their visit gave me quite a break. Although, I was so fearful it wasn't going to be enough and felt quite a bit of guilt for wishing I could have more. After they left, we stepped back into our routine well - and it became clear that Clara was ready for a new, big step. Eating. She is discovering the world of new flavors and textures and the feeling of satiation of hunger due to her own efforts to eat. She has shown outward signs of pride in this new independence. And it seems to be going hand in hand with the physical milestone of standing on her own which she is very close to mastering as well as walking on her own. She is now standing without the aid of a piece of furniture and will even begin walking and taking a few cautious steps to her next destination.
With all this excitement and the attention these developments require of me, I haven't blogged at all! But we do have some home videos posted which you can view by clicking on the "Clara's Home Videos" link on the right hand side of the blog anytime.
We are also very heavily involved in what is called a "Rapid Wean" as we take Clara off of NG tube nutrition and force her to learn hunger and that only she can fix it. She is doing very well, but we also have to be very careful of dehydration. As a result, I have developed quite an extensive charting system through excel which I send to the Drs each day. Each day involves a new tab where I journal a bit about how the day went. So many of you have expressed interest in how the wean is going and I hope to be able to use that part of her charting to update the blog and keep you all informed. We cannot wait to have Clara without an NG. She has had it for 10 of her 15 months of life. And we are close to being able to pull it out for good.
We love you all and thank you all for the continued support and interest in our amazing daughter. She is so full of love for life. We will keep you up to date once we have details on the 6 month bone marrow testing that they did on Wednesday this week. We should know more in 1 to 2 weeks.
Friday, July 1, 2011
Day +170: Clara is recovering!
We just got her lab results, and it is good news!
Her white count is 4.4; up from 2.5.
Her ANC is 1700; up from 800.
The doctors are essentially no longer concerned about pursuing any further treatment and are trying to convince us to calm done and move forward with living outside a bubble.
I have asked for them to reinstate approval to taper her MMF on Monday per the original schedule. She looks so much better yesterday and today. And I assume the bumps are viral more now than ever before. So I want to get her off these immunosuppresants!!!
What great news as my parents arrive this evening. I'm feeling much better.
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