Saturday, July 6, 2013

9 month update

***This is a late-posting update that I started a month ago (since Louisa is just about 10 months old now).  There are things that are out-of-date that I'm not changing because this is my version of a baby book.  I'm trying to keep things as we knew them to be at the time (if that makes any sense.).***

Height: ???

Weight: 16 pounds, 6 oz.  To give you a comparison, this is about what Alice weighed at 6 months old.

Clothing size: 3-6 months, still. 

Medical: Louisa started physical therapy this month and promptly earned a referral for occupational therapy.  She has a complete meltdown when you try to touch her feet.  She'll go on tip toes, but woe to you if you try to make her place both feet entirely on the floor.  She also dislikes going hand over hand and generally being made to do anything.  She has screamed through every single PT session so far.  OT will deal with her sensory issues so that PT can do their job of helping her with gross motor.  So far PT has only been able to do sensory things with Louisa.

Food, the good: well, we have found one food Louisa will tolerate....  zucchini!  Hooray for zucchini!  Tim planted two mounds of zucchini in our garden to celebrate. 

Food, the bad: we have to go really slow with zucchini.  We first tried 2 oz a day.  That was a disaster.  We dropped to 1 oz, then 1 oz every other day and that seems to be okay.  Eventually we will get her up to 1-1/2 oz every other day and then maybe attempt to move to every day.

Food, the ugly: Louisa didn't gain any weight for 6 weeks, according to the scale in the GI's office.  I think she gained and lost the same 2 oz a few times.  Still, she's pretty much stagnated.  This likely means she will have to go back on overnight g tube feedings.  We are attempting to raise the calorie concentration in her formula first, but last time we did that she started continuously dumping.  She has had a few bottles of the new concentration now and I have to admit I am unimpressed.  Dumping and retching.  Yay.  We'll give it a shot, though.   

Favorite things: 60mL syringes.  (File that one under "you know you're not in Kansas anymore when..."), her bunny snuggly blanket thing, pacifiers (which she finds and sticks in her mouth herself now), my lap - Lou still prefers my lap to anything else.  I've surrendered to this and embraced not getting a whole lot done.  At some point she'll be off and running and won't want the snuggles.

Milestones: Louisa is developing her pincer grasp.  Specifically, she delights in pulling out Tim's chest hair.  She can sit well now and has recently started putting her hands in front of her and rocking while sitting.  She's managed to get one leg behind her, but gets royally ticked off because she is then stuck.  She still has not really rolled over in either direction and she is nowhere near getting to sitting from lying down.  She'll get there.

The other big milestone is that we moved Louisa to her crib.  We had her in her cradle up until a few weeks ago, primarily because I was terrified of not having her right next to me.        

Thursday, May 30, 2013

8 month update

Louisa is 8 months old!

Height: somewhere around 25 inches.  Maybe slightly taller.  She is a shortcake.
Weight: 16 pounds
Size: 3-6 month.  She is wearing some 6-9 and some 6-12 because that is what we have for summer clothes.  Those are large on her, though.

Development: Louisa is starting to be able to sit, as long as you put her in a sitting position and sit behind her to catch her when she pitches one way or the other.  We are working on hands and knees with her (crawling position), too, which she enjoys doing.  Both these things tire her out.  She enjoys rolling to her side now, too.  (Not rolling over yet.)  Diaper changes feel like a wrestling match now. 

Her fine motor skills are great.  She enjoys using her developing pincer grasp to rip people's leg hair and chest hair out.

No teeth yet, but they are coming.

Medically: I will cautiously say that she is doing alright.  The biggest battle we are waging right now is with food.  Louisa dumps, which is a relatively common side effect of the fundoplication surgery, especially in children.  To help with her dumping, we have been adding medium chain triglyceride oil to her bottles.  This has been helping to slow her system down.

Solids remain a frustration.  We tried solids when Lou was six months old.  She was on a restricted diet designed for babies who are likely to have severe food allergies.  It didn't go well.  She didn't tolerate anything we gave her.  Dr. S further modified the diet (taking her dumping into account) and we started again right before she turned 8 months.  Again, it went horribly, well, at least the first food has.

Here are the foods we can try to feed Louisa:
oats (fail)

She is on a high protein / low carb / medium fat / severe allergy diet.  No sugar, no grains, no fruit.

Mommy milestones: I have replaced Louisa's g-tube by myself.  Twice.  The first time, the balloon shredded and the whole thing came out.  Of course it happened while LJ was having a bottle.  Picture a Baby Alive, only with the liquid squirting out a hole in their stomach.  Horrifying.  The second time Louisa decided that her button was a fantastic plaything and yanked it right out of her belly.  This also marks the first time I have said "NO" sternly to Lou and the first time she has cried because I told her no.  It had to happen sometime.         

Thursday, May 9, 2013

7 month update

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.

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.       

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.