Best Birthday Gift EVER

For Maggie's first birthday, my co-workers took up a very generous collection so that I could have Maggie's pictures taken. I wasn't able to take her for the traditional birth, 3-, 6-, 9-, and 12- month pictures because of the risk of infection with other kids being around, and I really wanted to do something special for her.

Well.......

I am just overwhelmed by the pictures taken today by our wonderful photographer, Jennifer. Jen was so easy to work with, and Maggie warmed right up to her!

We won't have the proofs for about 4 weeks, but here is a sneak peek:
http://www.jenniferbretonphotography.com/blog/?p=716

When we get the proofs, there will be an online album, and anyone who is interested in ordering prints can either let me know or you may be able to order directly from Jen.

~Sara

I don't "do" quiet very well...

For me, the worst part of Maggie's developmental assessment is having to sit there quietly.

Every 6 months, when I bring her to Children's Hospital of Philadelphia, Maggie is given a series of tasks to complete, the OT quietly nods her head and marks her paper, and says things like "Good try, Maggie".

And the whole time, I have to sit there quietly. When I know Maggie WOULD turn her head when the therapist calls her name, except she's too busy playing with the seat belt buckle on the chair they put her in. When I know she COULD say more than "dadadadada", but had to miss her morning nap for the appointment and when she's tired or overwhelmed she doesn't say much else. When I know that she CAN put the blocks back in the bucket, but she's too interested in the ID badge dangling from the therapist's neck. When I have SEEN her pincer-grip cheerios like a pro a hundred times, but she's just pushing them around the table because they just took that cool squeaky duck away and she's annoyed.

The second worst part about the developmental assessment is when the OT says, "I'm just going to step out and score her". That's when I sit there and over-analyze everything Maggie did and did not do. And I wonder which tests she was "supposed" to pass, and which ones were thrown in to "challenge" her. It's incredibly nerve-wracking for me. Good thing Magoo was too busy rolling around on the floor to notice. Especially since she refused to do so during the actual test.

According to the therapist, Maggie's cognitive abilities are absolutely appropriate for her corrected age. (Smart: check). Maggie's fine motor skills are also where they should be. (Detail Oriented: check). Maggie's verbal skills are on the lower end of normal. (Chatty Cathy: check). As an aside, I beg to differ on the "lower end" part of that statement, because I KNOW she said "doggie" on more than one occasion, and I have witnesses! Maggie's delays still lie in the gross motor areas like crawling, creeping, walking, etc. (Athlete: notsomuch). She is testing at a 7 month level, when she should be at an 11-12 month corrected level.

For this reason, the developmental pediatrician has recommended we start formal Physical Therapy, instead of Occupational Therapy. OT is a little more broad, and that focuses on all of Maggie's skills-- eating, fine motor, gross motor. But they feel that Maggie would benefit from the focus a PT can offer in addressing her gross motor delays.

The one good thing about the developmental assessment every 6 months is that we get to talk to my absolute FAVORITE pediatrician, Dr. Judy Bernbaum. Even though we only see her every few months, she knows Maggie almost as well as I do. She has always been the one to take charge of Maggie's feeding issues. She even requests that I call her monthly with an update on Maggie's weight and eating progress. I have a downright Doctor Crush on this woman, I swear. She is realistic, down to earth, intelligent, compassionate, non-patronizing, and experienced.

Dr. B was so pleased with Maggie's progress since the surgery! We all did a little dance of joy about her weight gain. She feels that, while Maggie's gross motor delays are "significant", her continued weight gain will mean the muscle mass and strength Maggie needs to get back on track. (Though she may never run Track, but whatever...)

Dr. B also helped tailor Maggie's feeding regimen with the GTube. In the next couple of weeks, once Maggie is one year "corrected" age, we need to stop feeding her infant formula. Dr. B gave me a prescription for Nutren Jr. formula, which is nutritionally formulated for older babies, and has more calories per ounce. This means we can decrease the volume Maggie is fed in the overnight feeding. Which may mean that she gets hungrier during the day. We will also continue to give her 4 bolus feedings during the day.

When I took Maggie back to Speech Therapy on Wednesday, Dahlia and I discussed that for the daytime feedings, we will offer Maggie baby food for 10 mins, then the bottle for 10 mins, then tube feed the rest. Dr. B was really pleased with this plan, and wants me to keep her updated on Maggie's progress.

So after a long and draining day, I'm sitting here on the couch typing an update. And Maggie is babbling away, using more than just one syllable, pushing herself with her legs and rolling all over the floor....

~Sara

We just didn't know...

... how many calories our poor Peanut was losing with her vomiting!

I took Maggie to the pediatrician this morning. She has been congested for a few days, and unfortunately, it seems to make the gagging/wretching worse. So we called the surgeon, who told us to get Maggie checked out with our regular pediatrician. The doctor said that Maggie does not have any lung involvement, and also does not have ear infections. Right now, it just seems to be nasal congestion. We'll treat it with a humidifier and keeping her elevated, as there isn't much else to do. Since it is more than likely viral, she won't need antibiotics at this point. (And it's important to note that she doesn't SEEM sick to me. Just really really stuffy...)

I'm thankful that it's nothing more serious-- we really have managed to dodge alot of bullets when it comes to Peanut's compromised immune system! Knock wood, she hasn't been sick since we brought her home last year!

But the very best news of all is that Maggie weighs 15 POUNDS now!!!!!! I simply cannot believe it! She was around 13 pounds, 10 ounces just before her surgery, so having the Nissen done to stop the vomiting seems to be the right thing! I am relieved. I guess we just never understood quite how much she was throwing up. I'm so happy that it seems we are on our way to having a nice fat baby on our hands!

And so, Faithful Reader, I leave you with our old cheer from NICU days, when Magoo was only 2 pounds: GO, FAT GIRL, GO!!!

~Sara

Surprises and Swimming

The other night, Maggie was uncharacteristically fussy. She whined. And whined. And whined. AND WHINED. (I thought I was going to throw her out the window, honestly.) We finally got her to go to sleep, and the next morning, she was fine. I was playing with her after her feeding, and as usual, Maggie was putting EVERYTHING in her mouth. She grabbed my fingers and started chewing on them, and suddenly she bit me! I thought, "What the heck IS that in your mouth?" Well, Peanut is cutting her first tooth! No wonder she was so fussy the night before!

This afternoon, Maggie and I went to my friend Beth's baby shower. Our hostess, Eileen, has a wonderful in-ground pool in the back yard, so Peanut got to put on her bathing suit and go swimming for the first time! She had a great time splashing and she even tried to paddle (with only one arm, but whatever...). She really seemed to love it! Eileen's family has a yellow lab that looks really similar to Ben, and Maggie just loved her! She watched Lizzie and kept saying "Da Da Da Da". All of a sudden, Maggie said "DOG-GIE"! I looked at Eileen, who was with us in the pool, and said "Did you just hear what I think I heard???" I wasn't convinced. Maybe it was just a fluke?

When I got home this evening, Maggie was so excited to see Ben. Again, "Da Da Da Da" as she watched Ben in the kitchen. So I said "Maggie, watch Mommy. Like this: DOG-GIE". Maggie smiled, giggled, and said clear as day "DOG-GIE"!! And she has kept saying it all evening. It's the sweetest thing I've ever heard. Her little voice. I imagine what it will be like to hear her say "Mommy" or "I love you". I'm tearing up just thinking about it. How far we've come from this time last year!!!

So here are the pictures from this afternoon's fun. (And, despite losing 33 pounds since late February, I am mortified that I'm posting pictures of ME in a bathing suit!):

Maggie getting her dinner feeding through the GTube. It's healing nicely: "Yay for Pool Parties!" with my dear friend Emily:

Isn't her bathing suit just the sweetest thing?:

The first dip:

Michael Phelps, eat your heart out!

Playing with my good friend, Mary, and her daughter, Avery:

Mommy & Maggie:

Maggie playing with the guest of honor, Beth (and Lucy, who's due to arrive in August):

~Sara

4th of July

Here are some pictures from July 4th weekend!

Auntie Mare & Magoo: Maggie & Uncle Carl:

Clipping coupons:

Say "CHEESE!":

Mama & Maggie in Grandpa's garden:

Could you just pinch those cheeks, or what?

"Look at my pretty dress!":

I just love this picture more than anything in the world:

My Smiley Magoo:

Maggie loves to play in the fountain at Auntie Lily's house:

~Sara

Puddles

Maggie's been getting better by the day since her surgery! We figured out that part of the reason she wasn't really eating is because she didn't like the pre-mixed formula we were offering her. (The company had sent us a "complimentary" case, and we were trying to use it up.) When we ran out, we went back to the powdered stuff we'd been giving her all along. Lo and behold, Peanut is back to taking 1-2 ounces per feeding by mouth! She was just trying to tell us the pre-mixed stuff was gross! (And I can't blame her, it really does smell worse than the powdered.)

Maggie has been great about trying new textures in her mouth. She shows interest in food when she sees other people eating. So far, her "repertoire" includes: cucumber, red pepper, green pepper, carrot sticks, cheezit, chocolate, crackers, watermelon, blueberry, strawberry and pretzels. She doesn't actually SWALLOW any of the food-- in fact, if a little tiny piece softens up and gets into her mouth, she wretches and gags. But it's a HUGE accomplishment that she picks the foods up, puts them into her mouth, and gums them for a while. Kids with oral aversion sometimes have NO desire to have anything in their mouth at all. I'm happy to see her try, even if she's not ready to actually eat.

Maggie is supposed to get four 4 ounce feedings during the day. She just seems uncomfortable afterwards, and we've seen her gag and wretch (both things the doctor told me were NOT okay). First, I thought we were running the feeding in too quickly. But even when we slowed it down considerably, she gets very uncomfortable at the end, so that leads me to think it's a volume issue. I summoned my nursing druthers, and decreased her feedings to 3.5 and she seems more comfortable. She is only missing 2 ounces from the grand total they would like her to get, which translates into 44 calories per day. My theory is that since she isn't throwing up anymore, and is actually eating some baby food puree, she is actually keeping in more calories NOW than before surgery. The scale will let us know when we see how much she has gained, I suppose.

We have been having a little trouble with the overnight feedings for the last 2 nights. We hook up the pump at 9pm, and Maggie gets about 13 ounces all night long. The extension tubing for the GTube has two ports: one for the feeding pump, and the other smaller one for medications. Well, the past 2 mornings, we have woken up to find Magoo sleeping in a puddle of formula. The small port somehow opens up and the pump doesn't know it, so it just keeps on pumping formula right into the crib! I had read that this happens, and knew it was almost inevitable, but the fact that it's happened two nights in a row makes me wonder if we are doing something wrong! I have wrapped the connection in a towel, in the hopes that it would help protect the port, but even that didn't work.

In Magoo's defense, she is what I would call an "active" sleeper. She never wakes up in the same spot I put her down in. She likes to sleep on her side, and rolls back and forth, and from tummy to back. She scoots up to the top of the crib in her sleep. It's actually really cute to watch, but that may be the cause of the port dislodging. Dan is going to call the surgeon's office once business hours hit, and I have reached out to the online micropreemie support group I belong to. There's got to be a way to fix this! I worry about the calories that she's missed these last two nights. Because the pump doesn't meet any resistance, it just keeps going, and who KNOWS how many ounces of formula are on the mattress instead of in Magoo's tummy? Dan started the feeding last night at 9. I checked the connection at 10:30 before going to bed. Dan checked it at 12:30 before he went to bed. All was fine. But sometime between then and 6am this morning...

Hopefully we'll be able to figure it out. It's just weird because we didn't have ANY problem for the entire first week!

Other than that, Maggie is her happy self. She has been extra clingy since the surgery. I sometimes feel like I can't pee, shower, or I don't know: LEAVE THE ROOM!!! It's been hard to be back at work-- she kind of lost it when she realized I was leaving yesterday morning. She also has been a little off her sleep schedule, and isn't napping as well as usual. I seem to be the only one who can get her to sleep. One night, Dan tried for a full 45 minutes, then I went up, and Maggie was asleep in 3.5 minutes! Who could blame her? I mean, I am an AWESOME mom, right? No, seriously, I think she's still a little traumatized from the surgery. The last thing she remembers, I handed her over to someone in blue scrubs, and she woke up in terrible pain! Of course she doesn't want me to leave, and doesn't want to go to sleep! She's afraid it will happen again!

(Shhh, don't tell, but there's a teeny part of me that secretly LOVES that she only wants me. I know it's twisted, but I kind of like it... shhhh!)

~Sara