Louisa is 7 months old. (She will be 8 months old in 4 days.... Like I said, I do these in bits and snippets.)
Height: 25 inches
Weight: 15-1/2 pounds
Size: 3-6 month
Favorite things: Alice, Tim, and me. She is firmly in her stranger danger phase. She also enjoys her wooden keys and chewing on Sophie the Giraffe.
Developmental Stuff: Not much new to report. She is babbling more and experimenting with volume, both loud and soft. We were joking around with her the other day because one of the medicines she takes is used as a supplement for body builders. We said, "Louisa, are you a beefcake?" and every time we asked her she made this strange growling noise in response and tensed herself, like a wrestler showing off their muscles.
She holds her bottle herself now all the time. She likes to pat your face while you hold her, which is one of the most heart-melting things ever. She also loves to pull hair while screaming like a yeti, which is not the most heart-melting thing ever.
Thursday, May 9, 2013
Tuesday, April 9, 2013
6 Months Old
*Edited to say - Louisa will be 7 months old on Saturday... I wrote much of this over the course of this past month and, while some of it no longer applies I want to keep the post as it is to document her babyhood as it happens.
My noodle is half-way through babyhood, sniff, sniff!
Height: 63.5 cm (25 inches)
Weight: 13-1/2 pounds
Size: 3-6 month. Some is huge on her still. 0-3 still fits her and sometimes I'll put her in that, but, to be honest, I was getting a little bit tired of her 0-3's and realized that the weather was about to get too warm for fuzzy sleepers, and we got a bunch of super cute wintery 3-6 month size clothes as gifts, so.... 3-6 month it is!
Milestones: shrieking, laughing, interacting... She is doing a TON of drooling right now. The teeth are coming! She has also started really grabbing for things. She continues to be my happy-go-lucky girl.
I suppose I ought to talk about her lack of typical milestones too. She isn't rolling over or sitting. She can't lift her head off the ground when she's on her belly. She is really stiff in the middle and doesn't like to bend (to sit, for example). All this is typical of a baby with severe reflux. They move with comfort in mind, and comfort means arching and making their esophagus as long as possible. It would be miraculous if she didn't have delays. Dr. S has referred her for a PT eval, and a lady with the state early intervention services came out the the house this past week. It was an intake visit - the official assessment will take place in the next few weeks. She did say that she didn't anticipate there being any problem getting Louisa covered since she has failure to thrive, which is a diagnosis that automatically qualifies her for state-covered services.
Giant accomplishments: This month Louisa graduated from the apnea monitor. This is HUGE. And slightly scary for Tim and I. We know she is ready to be off of it but at the same time it is hard to give up that safety net.
Louisa is also taking all of her calories by mouth. If she is sick, we use the tube. Otherwise she gets bottles.
Louisa started solids in feeding therapy this week. I won't sugar coat it - it's rough. She gags when the empty spoon touches her lips. I do feeding therapy once a day with her at home. We have been feeding her with alternate objects - teethers that she enjoys, for example, and then we try to offer the spoon. Sophie the giraffe does a fine job. We dip her head in peaches and hand her over to Louisa to explore. The first time we did this, L put Sophie in her mouth, gagged on the peaches and then gave Sophie a very concerned look as if to say, "Soph, I don't know what you got on your head, but you really ought to take a bath."
Right now we are not expecting Louisa to gain anything nutritional from solids. It is a learning experience. Like everyone, L has good days and bad days. A few days ago, after munching on Sophie's head for a few minutes, I offered up a spoon fully expecting rejection and she completely shocked me by grabbing it and shoving it into her mouth. Yesterday she wouldn't even let Sophie come near her mouth and cried when she caught sight of the spoon. Kids don't accomplish things once and then have mastery. It's a process. We are on Louisa's timetable with feeding.
It's difficult for me to describe just how much of a struggle all this has been, how exhausting it is, and how completely alien. With Alice, we simply fed her. Sure, we had instructions about which kind of formula to use and how to introduce solids, but we were pretty much on our own. Louisa has four medical professionals giving us instructions on how to feed her, and often times they don't agree with each other on how we should proceed. There are times when I am worn out from playing therapist at home. We make Louisa struggle, and while it is for her own good, it is difficult for all of us.
My noodle is half-way through babyhood, sniff, sniff!
Height: 63.5 cm (25 inches)
Weight: 13-1/2 pounds
Size: 3-6 month. Some is huge on her still. 0-3 still fits her and sometimes I'll put her in that, but, to be honest, I was getting a little bit tired of her 0-3's and realized that the weather was about to get too warm for fuzzy sleepers, and we got a bunch of super cute wintery 3-6 month size clothes as gifts, so.... 3-6 month it is!
Milestones: shrieking, laughing, interacting... She is doing a TON of drooling right now. The teeth are coming! She has also started really grabbing for things. She continues to be my happy-go-lucky girl.
I suppose I ought to talk about her lack of typical milestones too. She isn't rolling over or sitting. She can't lift her head off the ground when she's on her belly. She is really stiff in the middle and doesn't like to bend (to sit, for example). All this is typical of a baby with severe reflux. They move with comfort in mind, and comfort means arching and making their esophagus as long as possible. It would be miraculous if she didn't have delays. Dr. S has referred her for a PT eval, and a lady with the state early intervention services came out the the house this past week. It was an intake visit - the official assessment will take place in the next few weeks. She did say that she didn't anticipate there being any problem getting Louisa covered since she has failure to thrive, which is a diagnosis that automatically qualifies her for state-covered services.
Giant accomplishments: This month Louisa graduated from the apnea monitor. This is HUGE. And slightly scary for Tim and I. We know she is ready to be off of it but at the same time it is hard to give up that safety net.
Louisa is also taking all of her calories by mouth. If she is sick, we use the tube. Otherwise she gets bottles.
Louisa started solids in feeding therapy this week. I won't sugar coat it - it's rough. She gags when the empty spoon touches her lips. I do feeding therapy once a day with her at home. We have been feeding her with alternate objects - teethers that she enjoys, for example, and then we try to offer the spoon. Sophie the giraffe does a fine job. We dip her head in peaches and hand her over to Louisa to explore. The first time we did this, L put Sophie in her mouth, gagged on the peaches and then gave Sophie a very concerned look as if to say, "Soph, I don't know what you got on your head, but you really ought to take a bath."
Right now we are not expecting Louisa to gain anything nutritional from solids. It is a learning experience. Like everyone, L has good days and bad days. A few days ago, after munching on Sophie's head for a few minutes, I offered up a spoon fully expecting rejection and she completely shocked me by grabbing it and shoving it into her mouth. Yesterday she wouldn't even let Sophie come near her mouth and cried when she caught sight of the spoon. Kids don't accomplish things once and then have mastery. It's a process. We are on Louisa's timetable with feeding.
It's difficult for me to describe just how much of a struggle all this has been, how exhausting it is, and how completely alien. With Alice, we simply fed her. Sure, we had instructions about which kind of formula to use and how to introduce solids, but we were pretty much on our own. Louisa has four medical professionals giving us instructions on how to feed her, and often times they don't agree with each other on how we should proceed. There are times when I am worn out from playing therapist at home. We make Louisa struggle, and while it is for her own good, it is difficult for all of us.
Wednesday, February 13, 2013
5 months old
My goal is to get these on the blog before she turns the next month old, lol. I don't get a whole lot of computer time these days.
5 months old....
Weight: almost 12 pounds
Height: ??? 24 inches? 25 inches? Somewhere around there.
Size: Louisa is starting to outgrow her 0-3 month size clothes. I'm putting her in 3-6 month size now (mostly) but quite a few are still ridiculously big. Her fluffy cloth diapered bottom helps fill things out. Depending on how quickly she grows, we have things that she may not grow into before the weather warms up. I was guessing she would line up with the sizes at her age or sooner - so she would wear 0-3 months until Nov or Dec, 3-6 months until Feb, etc. I never expected to have such a peanut. If she stays on her current growth curve she will not outgrow 3-6 month size clothes until she is a year old, adjusted.
Favorite things: Alice. She is FASCINATED by Alice. She loves to watch her and play with her. Alice, luckily, is head over heels for Louisa most of the time.
Development: Louisa has learned to use her hands. She reaches and grabs things now: my hair, her hair, her bottle, toys. She will also grab her pacifier and plop it in and out of her mouth.
She has also started vocalizing more with growls and shrieks.
Health: Doing well! After spending $$$ on various bottles, we discovered that the one with the slowest flow is the cheap-o Playtex with the drop-in liners. This is the only bottle that Louisa doesn't choke on. She is doing amazingly well with learning to eat again. For now she is averaging about 2/3 of her calories by mouth with the rest going through her g-tube at night. When we don't use her tube at all for 3 months, we will be allowed to have it taken out. We still use it quite a bit to vent her (let the air out of her tummy) because she cannot burp. I would also like to see her do some catch-up growth before it comes out. I would hate to get it out and then turn around and need it put back. So, we are not in a hurry to get the tube out - I'm guessing somewhere between her birthday and Thanksgiving.
Next month we plan to start solids (eek!). Louisa's pediatrician and nutritionist came up with a very specific plan for us to follow with solids. Essentially she is on a progression of foods they recommend for babies who are allergic to everything, minus anything that is constipating (no applesauce, rice, bananas, etc.). We will work with the feeding therapist when we start her on solids.
She's got some developmental delays with gross motor skills. The referral for PT is coming. We have been waiting until we are fairly certain that she will qualify for state-funding (a 40% delay or greater). We have also been busy working on oral-motor. She is a baby, after all. Don't want to stress her out with too much school.
5 months old....
Weight: almost 12 pounds
Height: ??? 24 inches? 25 inches? Somewhere around there.
Size: Louisa is starting to outgrow her 0-3 month size clothes. I'm putting her in 3-6 month size now (mostly) but quite a few are still ridiculously big. Her fluffy cloth diapered bottom helps fill things out. Depending on how quickly she grows, we have things that she may not grow into before the weather warms up. I was guessing she would line up with the sizes at her age or sooner - so she would wear 0-3 months until Nov or Dec, 3-6 months until Feb, etc. I never expected to have such a peanut. If she stays on her current growth curve she will not outgrow 3-6 month size clothes until she is a year old, adjusted.
Favorite things: Alice. She is FASCINATED by Alice. She loves to watch her and play with her. Alice, luckily, is head over heels for Louisa most of the time.
Development: Louisa has learned to use her hands. She reaches and grabs things now: my hair, her hair, her bottle, toys. She will also grab her pacifier and plop it in and out of her mouth.
She has also started vocalizing more with growls and shrieks.
Health: Doing well! After spending $$$ on various bottles, we discovered that the one with the slowest flow is the cheap-o Playtex with the drop-in liners. This is the only bottle that Louisa doesn't choke on. She is doing amazingly well with learning to eat again. For now she is averaging about 2/3 of her calories by mouth with the rest going through her g-tube at night. When we don't use her tube at all for 3 months, we will be allowed to have it taken out. We still use it quite a bit to vent her (let the air out of her tummy) because she cannot burp. I would also like to see her do some catch-up growth before it comes out. I would hate to get it out and then turn around and need it put back. So, we are not in a hurry to get the tube out - I'm guessing somewhere between her birthday and Thanksgiving.
Next month we plan to start solids (eek!). Louisa's pediatrician and nutritionist came up with a very specific plan for us to follow with solids. Essentially she is on a progression of foods they recommend for babies who are allergic to everything, minus anything that is constipating (no applesauce, rice, bananas, etc.). We will work with the feeding therapist when we start her on solids.
She's got some developmental delays with gross motor skills. The referral for PT is coming. We have been waiting until we are fairly certain that she will qualify for state-funding (a 40% delay or greater). We have also been busy working on oral-motor. She is a baby, after all. Don't want to stress her out with too much school.
Friday, January 11, 2013
4 months
Wow. 4 months?! Crazy. I'll still be updating Louisa's Caring Bridge site but I thought I'd come back "home" for the more mundane things that are going on with our family. Mundane is good. : )
She is doing well. The big news this month is that she is learning to eat from a bottle again. This is a process and her success varies by the feeding. She's had a few choking episodes which scare her badly (us, too!) but thus far she has been willing to keep at it and try again the next feeding. She is scheduled for another modified upper GI (aka a swallow study) on Feb 5th to check for aspiration. Tim and I are on the fence about this one. I'm going to talk to her feeding therapist to see if she thinks it is really necessary. We should probably just go ahead and do it. I hate it, though.
At our last GI appointment we were told that when we go 3 months without using the g tube at all, she can have it removed. His goal for her is for it to be out at the end of July - so, 6 months. I think that might be optimistic. I'm hoping for her to graduate from the tube by Thanksgiving. Right now L is getting about 75% of her feedings through the tube. We also use it heavily for venting (letting gas out of her tummy since she cannot burp.). As she starts to transition to solid foods I expect we won't have to vent as much. For now I can't imagine not being able to let the air out of my baby.
The biggest hurdle right now is growth. Louisa is little. She's 11-1/2 pounds, give or take, and about 24 inches tall.
She is doing well. The big news this month is that she is learning to eat from a bottle again. This is a process and her success varies by the feeding. She's had a few choking episodes which scare her badly (us, too!) but thus far she has been willing to keep at it and try again the next feeding. She is scheduled for another modified upper GI (aka a swallow study) on Feb 5th to check for aspiration. Tim and I are on the fence about this one. I'm going to talk to her feeding therapist to see if she thinks it is really necessary. We should probably just go ahead and do it. I hate it, though.
At our last GI appointment we were told that when we go 3 months without using the g tube at all, she can have it removed. His goal for her is for it to be out at the end of July - so, 6 months. I think that might be optimistic. I'm hoping for her to graduate from the tube by Thanksgiving. Right now L is getting about 75% of her feedings through the tube. We also use it heavily for venting (letting gas out of her tummy since she cannot burp.). As she starts to transition to solid foods I expect we won't have to vent as much. For now I can't imagine not being able to let the air out of my baby.
The biggest hurdle right now is growth. Louisa is little. She's 11-1/2 pounds, give or take, and about 24 inches tall.
Tuesday, November 20, 2012
Caring Bridge site for Louisa
I've started a Caring Bridge site for Louisa. I decided to update there rather than here because it is easier for me to post updates via my phone on that site. Since she will be in the hospital for several days, being able to post updates with my phone is critical.
http://www.caringbridge.org/visit/louisajane
There is a "donate" button on the caring bridge page. Please know that if you donate, it goes to fund caring bridge. It does NOT go to us. (There was some confusion about this, which is why I mention it.)
http://www.caringbridge.org/visit/louisajane
There is a "donate" button on the caring bridge page. Please know that if you donate, it goes to fund caring bridge. It does NOT go to us. (There was some confusion about this, which is why I mention it.)
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