A Far Cry From 2.5 Years Ago

I was getting ready to update about yesterday's appointment when I glanced at the picture of Adeline passed out on top of me. It reminded me of holding her in the NICU. I would get her snuggled up on my chest and pretty much be hands free (except for tying to manage all of the cords and tubes). She wouldn't go anywhere. It was so strange that she wasn't heavy enough to slip down. Whenever I would hold both of the girls I would have to support Lila but Adeline would magically stick. I also remember fitting my thumb and middle finger on either side of her and having lots of room to spare. Kind of like wrapping your hand around a water bottle that is flush with your chest, but much smaller. Gosh, we have come a long ways. Here is a picture of her just a few weeks before discharge. I guess she had grown enough and needed me to support her. How did she get so big?

Just to reiterate. . .

Kennedy Krieger Institute

We just got back from a seven and a half hour trek down and back to Baltimore's Kennedy Krieger Institute. It was a long day but Adeline was a star. She was going on day two of no nap. Yesterday, Adeline was at duPont all afternoon for a cardiac appointment. She underwent a EKG and Echocardiogram for her heart. Savannah came with us today and Lila Grace stayed at Miss Neely's -God bless her for offering to watch my kid for 7+ hours when she has three of her own.

Everything went well. I will give more details later. Just wanted to let everyone know that we walked away without a diagnosis!! The doc confirmed my hopes. No one would look at Adeline and imagine she was born at 1.0 pounds. She has a full life ahead of her. I couldn't be happier.

The Belle is pooped!

Our Week in Ten Pictures

These items all made it into Lila Grace's crib this week. Each day she picks something new to sleep with.
Bananas are better when turned into snowmen


Lila was very tired and snugly this week. I guess when mommy doesn't have time, a basket will do. She didn't want to come out!
Adeline has rekindled her love of Giraffes


Savannah is teaching her sisters to carry around more than just their Bunnies. She lined up all of her guys for a photo shoot. She is getting pretty good with the SLR





Valentine's Day morning. Excuse the hair - we didn't get that far before the girls discovered their gifts.



We were lucky to have our friends from New Mexico with us this weekend. Steve, Heather and Baby Kate made our weekend that much more enjoyable. Lila keeps asking, "Where did the baby go?" "Night night?"

Valentines

This isn't something I usually post about. I figure people have enough creativity and certainly aren't going to be better off for having heard about mine. My crafts aren't noteworthy unless they are created with a mouse :) However, making Valentines with my girls this year was quite an experience. First, I did it when they were awake. Second, they actually helped. It was a big first for me. Their attention was held, their effort was was admirable and, overall, it was a big success.

I hesitate to say it, but the experience was huge realization for me. Oh, I really don't want to jinx it. . . but I will say it anyway. I THINK WE ARE FINALLY ON THE ROAD TO EASIER, NOT HARDER. For the past two and a half years, I have tried to hold my head high with the full understanding that things are hard, going to get harder and stay that way for a really long time. I remember Alex telling me about conversation he had with a dad of twins (twins were normal and term). The dad told Alex that the first TWO years are really hard. I was holding two five month old babies at the time and was instantly deflated. "Was it really going to be years?" Yes it was, and has been. But now, and not before now, I think we are on the uptick. The girls are finally able to participate, understand what "no" means and spend lots of time in "time out" when the world isn't going their way. Things are working well for us and I finally have tangible evidence to prove it. All three of my girls had a hand in this year's Valentine making.

The details

Find a Wilton heart mold, must be rubber and flexible

After removing wrappers with an exact o knife, break up CRAYOLA (don't cheap it up here) crayons into each heart

Back at 350 until melted.

Let cool and remove

Create a hole - forget using a skewer, a drill is much better

Adhere to card


Finally, build an island that seats THREE

Another Rare Moment of Twinship

This holiday season I set two unbreakable snowmen out where the girls could reach. It was a constant battle of the wills but I felt like I had won. The girls knew they weren't supposed to play with my decorations. This, of course, is an attempt to reclaim my house. Lila has often picks up a snowman and then, when seeing me, immediately puts it down and acts as if she was kissing it.

I have left the snowmen out for winter decorations. I guess their will got the best of them as I came downstairs a couple of days ago and saw the girls sitting together on the couch (yes, much to my chagrin, watching Elmo.) It was pretty cute. Clearly, they were in cahoots. Lila immediately put it back.



Maybe next year I will be able to put decorations below eye level.

Down Right Unbelievable

Adeline Belle is out eating both of her sisters. Honest!! Ever since a I made a roast on Tuesday, Adeline has been eating up a storm. She ate the carrots, mashed potatoes and the meat. Then she followed it up with lots of my pumpkin bars - with frosting!! My mouth is still on the floor.

Let's just compare the typical day to her last 5 days of intake.

Typically. . .

Adeline picks at Cheerios or puffs for breakfast

Eats maybe a fourth of a sandwich and full yogurt for lunch

For dinner she typically eats about three bites of everything and never partakes in desert unless it is a green Christmas tree cookie.

(of course she has her Pediasure both morning and night)

Lately. . .

Adeline eats a whole bowl of Cheerios (independently spoon feeds it to herself without milk) and gets mad when I take her out of her highchair because she wants more and more Cheerios.

For lunch, Adeline spoon feeds herself a full yogurt and eats a half sandwich. She usually has a few crackers as well.

Dinner is absolutely astounding. Adeline is eating everything in her bowl and asking for seconds. Tonight, she ate 10 bites of steak, at least a third cup of mashed potatoes and a couple of bites of green beans. She proceeded to eat a 3" x 2" piece of pumpkin bars with frosting. She forked it all by herself.

I have gone from worrying that she will waste away to actually saying, "I hope this eating isn't going to make her fat since she is so short." I immediately recognized the absurdity in my comment but I really did say it out loud.

Does all of this relate to the dropping of feeding therapy? I guess it must. She is now a very INDEPENDENT eater that flips out if I touch her fork or spoon. She will spend 30 minutes working on a cup of yogurt instead of allowing me to help her spoon it out. In the past we have always fed her because she was so defensive with food that she wouldn't feed herself.

Possibly most shocking is that my girls have loved the past two meals I have made. Now that I am not shoving food in Adeline's face every two seconds, I have enjoyed WARM meals with my girls. I ate everything on my plate tonight which is rare and it wasn't even cold.

Thank God we have made a change in Adeline's feeding. Who knew it would make such a difference. Now we have to hope it sticks around.

On a different note, Miss Belle sported braids this week.

And How's it Working For You???

That was what our fabulous pulmonologist asked me when we were discussing Adeline's feeding therapy. Somehow we got on the topic when I had her in during her virus last week. After seeing that she had lost three pounds, I guess I was pretty focused on how many calories we should be packing in her on a daily basis.

I can't express to you how wonderful Dr. Chidekel is to my family. He has come to know us pretty well and understands our stressful circumstances stemming from Alex's job in Dallas. Dr. Chidekel knows how I operate and does a very good job of accomodating my need to know while trying not to tear me up or stress me out in the process.

During our conversation last week he said, "There are two things you need to accept. Adeline is going to always be small and she is NEVER going to like to eat!" I kind of blew him off with the eating and started questioning him on heights. He entertained me with his typical humor but helped me understand that she is a premature twin, which in his experience, always means short. Okay, I can deal with that. I actually like that she is so tiny now. We'll see how I feel about it in five years.

Dr. Chidekel every so delicately re focused the conversation on feeding. He asked me how "pushing" food on Adeline is going. I told him meals are the worst time of day for me and they make me cranky in all of two minutes. He then posed the question that lingers in my head, "Any how is that working for you?" I responded, "Do I have a choice? Adeline would starve if I didn't force food on her by tricking her toys and all sorts of distractions." He then pointed out the following:

Pediasure was meant to sustain her

Who cares if she drinks from a bottle - she doesn't

When she does care, she will be older and more able take responsibility for her intake

Is it a big deal if she drinks two servings of Pediasure throughout her childhood?

Food is a bit repulsive to her, it isn't her fault, it was caused by all of the crap she underwent it the NICU and. . . IT IS NEVER GOING TO CHANGE!

Feed her what she will eat because we are lucky she likes things like yogurt, chicken nuggets and bars.

The therapy should come later on when she has to worry about fitting in at the school lunch table, restaurants and at other people's dinner table. The therapy should be for her confidence not for her intake.

Obviously, the above was biased but he was operating under "full disclosure" as he has a son who has a moderate form of Dysphagia. He has worked through all of the above and seen that children are wired to be Dysphagic and that sensory/neurological piece can never really be changed. Thus, it is more about helping them to meet their caloric needs while fitting in with their everyday life. I should be trying to take the stress level down, not amp it up by trying to get Adeline to eat a piece of food that makes her want to yack!

Is it hard raising a Dysphagic kid? Absolutely, frustrating and infuriating at times. Is it worse to be the Dysphagic one? Most likely but we aren't there yet. Dr. Chidekel opened my eyes to what is ahead for us. Food is such a part of our culture. We celebrate with it and mourn with it. Adeline will do neither but need to find away to not make herself feel ostracized. I guess that is where I am going to put my focus.

We are dropping feeding therapy, going back on two bottles of Pediasure a day and offering her what we are having for dinner. If she wants it great, if not she can munch on cheerios. Chicken nuggets and whole milk yogurt will be well stocked in this house from now on.