A Christmas Whirlwind

I broke the rules, and took Magoo to my office for a quick visit on Christmas Eve morning. It was fun to show her off to all my friends at work. Such a "normal" baby thing to do. Maggie took a special liking to one of our physicians, Frank, and gave him some huge toothless grins. When he passed her off to go see some patients, Maggie practically did a back bend out of Eileen's arms to watch Frank walk away. My kid really loves men-- I think we're going to have our hands full, folks! Maggie was so good-- she even waited a good 25 minutes before throwing up on my friend Krystal! But, being that I travel with a load of towels, we managed to save the uber-cute Reindeer outfit from disaster.

Then we headed over to my parents for brunch. Every year, our dear friends, Sr. Nancy and Sr. Bridget come for Christmas Eve brunch. Maggie and I had to leave shortly after eating because we had our weekly Occupational Therapist visit at 2pm.

Maggie continues to make strides in OT, our therapist Allie (who we LOVE) is very happy with Maggie's progress. Maggie still has some "head lag" when we pull her to sitting-- this means that instead of flexing her chin to her chest like most kids do, she lets her head lull backwards. We have to practice doing baby situps to help her neck gain some strength.

After OT, I had to feed Maggie again, and I still had a ton of Christmas presents to prepare and wrap. My inlaws had arrived earlier in the day from CT, so it was great help to have Nana on Maggie Duty while I finished up!

In the Swedish tradition, Christmas Eve is a far bigger deal than Christmas Day. It's a big party-- everyone dresses up, we eat an enormous amount of food, open all our presents, and just generally have a good time. It was a late night, and Maggie was awake for all of it! And since she didn't get much naptime in during the day.... well, you know where this is going.

Poor kid slept her way through her first Christmas Day!

She was up for a while in the morning, but then slept on and off all day long. The pictures below are a few from when she was playing in the morning. My parents got her this really cool piano, and she LOVED it!

This weekend, Dan and I left Maggie with my parents overnight. This was the first time BOTH of us have been away from her for more than the amount of time it takes to go out to dinner and a movie. We went up to CT to "surprise" our friends at their annual Christmas party. (I say this in quotations because I spilled the beans-- I am terrible with surprises.) It was fun to be away, and fun to spend some time with our dear friends. I found it a little difficult, though, because there are many babies in our circle of friends now. Most were born around the same time as Maggie, or were due around the time she was due. Maggie was supposed to be born "last" out of all of them, and she ended up "first". So on one hand, I heard about what a normal 8 month old is doing, and on the other hand, I saw what a normal 5 month old is doing. It's really hard not to compare Maggie to my friend's babies. I know that she is doing very well, all things considered, but it was almost painful for me to watch another 5 month old baby hold her own bottle, suck down 5 ounces, burp, and not throw up! We are very blessed to have such supportive friends, though, and it was wonderful to spend time with them. I miss Connecticut very much, and we found ourselves daydreaming about when we would move back up there. (The minute our friend Paul pointed out the empty lots in their new development, I knew we were in trouble!)

In all our running around during the holiday, I managed to get myself good and sick. Those of you that know me, are not surprised. Seems like every Christmas, I end up sick. When I was a kid, we spent many Christmas Eve's in the Emergency Room with ear infections, brochitis... you name it, I got it. When I went to college, I would push myself through finals, come home and spend the rest of Christmas break on my parent's couch nursing a cold. So here I am, with a micropreemie who CANNOT get sick... I'm washing my hands, and trying not to kiss her... that's kind of impossible, though. Have you seen how cute she is???

Here are some Christmas pictures for your viewing pleasure. I hope that everyone had a wonderful holiday!

Sleep in Heavenly Peace (12/24/08):"I hear MUSIC-- This is the greatest toy EVER!!!" (12/25/08):"Who needs hands, I'm gonna play with my FACE!":"This is what they call 'tickling the ivories', right?":Mozart's got nothin' on Maggie Daley!:"Okay, this is nice, but where's the Steinway I asked Santa for?":

~Sara

Eating, Wallets, and That River In Egypt

The visit to CHOP's Feeding Clinic was good, but not as "enlightening" as I had hoped it would be. Really, it wasn't realistic to think that we'd get there, and they would say "OH! This is what the problem is! Do x,y, and z, and Maggie will be eating in no time!" But I sort of hoped it would happen.

Anyway, they told us that it doesn't appear that Maggie CAN'T swallow. She doesn't have signs of aspiration or inability to swallow correctly. Which is good and bad. Good, because there's nothing wrong with her ability to swallow milk. Bad, because there's nothing wrong with her ability to swallow milk. So it's evident that Maggie WON'T swallow.

The Feeding Specialists all agree that Maggie won't swallow because of her long-term issues with reflux. Like I've explained before, Maggie's smart, and when eating = pain and vomiting, she's learned it might be better not to eat. Hard to argue with that reasoning, really.

So we will continue to do what we're doing. We were told that perhaps when Maggie is taking baby foods (they recommended waiting until she is 6 months corrected) and sippy cups, it might look brighter. Maybe she's just afraid of the bottle.

Maybe.

So I'm happy that we are established with the Feeding Clinic. I'm happy that they agree with all of my feeding strategies (offering the bink to suck on during tube feeds, etc). At least I know I'm doing something right!

On the way to the car after our appointment, my wallet was stolen. We had been standing at the security desk after I made our follow up appointment. I was looking for my parking card so I could get it validated. I took it out of my wallet, and put the wallet in the front pocket of the diaper bag. We walked across the street, went down the elevator, and to the parking garage. It literally took 2 minutes. I was looking for my wallet again at the parking garage to get my 3$ to pay to park, and realized it wasn't in the diaper bag. I went back up, retraced my steps, talked to the security guard, checked the desk where we were standing, had the nurse check the exam room we were in, etc. No wallet. I specifically remember putting it in the front pocket of the diaper bag. The only thing we can think is that it was lifted in the very crowded elevator.

It seemed that was the final straw for my day. I just stood in the parking garage sobbing. Seems like I can handle most of the big stuff-- feeding tube, millions of doctors visits, very little sleep. But it only takes a small thing to push me over the edge-- missing wallet, getting cut off in traffic. I think my brain and heart are so concerned with the larger issues that I cannot handle the mundane. What's a wallet really? They only got about 22$ in cash. Since we knew so quickly that it was gone, we cancelled all credit/atm cards within 30 minutes. Frankly, I was more upset about losing my nice Vera Bradley clutch that matched the diaper bag than what was in it. It was more of the idea of it-- someone targeted me because I was distracted. Because I was at Children's Hospital with my sick baby. Because I was trying to give everything else 100% and didn't think to put the wallet inside the zipped part of the diaper bag. I must have been a very easy target.

I hope whoever it was gets a load of coal in their stocking on Christmas. Santa, are you listening?

Speaking of Christmas, I am in complete denial that it's only days away. I've done virtually NO shopping, except for a couple of gifts for friends. And even those should have been wrapped and delivered last week when I was in CT, but I couldn't get my act together enough to wrap them. So I am braving the King of Prussia mall tomorrow, along with probably 25,000 of my closest friends. I am going to arrive when it opens (8am), or maybe a little earlier.

The problem with all of this is that I have no credit cards or atm card. So I'll be that annoying lady in line that has to write a check for everything. I'd like to publicly apologize to said 25,000 friends now.

Tomorrow, I'll be baking cookies, wrapping gifts, and preparing the house for my inlaws visit this week. My mom plans to have Christmas Eve at her house, and we'll have Christmas Day. I think I'll have beef-- anyone have any good (read: EASY and LOW STRESS) recipes?

Despite our year, in what seems to be the biggest snowball of bad luck in history, we are so grateful for our family and friends. We are so thankful for our Maggie. Our precious miracle, our sweet daughter. On many nights when she was fighting for life in the NICU, I would dream about Christmas Eve. I dreamed of singing "Silent Night" while Maggie, clad in footy pajamas, drifted off to sleep before her first Christmas.

So if anyone wonders what I'll be doing late on Christmas Eve, you'll find me with my baby in her nursery...

~Sara

Mouse Wisdom

My favorite Christmas cartoon of all time is Twas the Night Before Christmas (1974). I found myself humming one of the songs to myself today while we were waiting for Maggie's Feeding Clinic appointment, and I discovered why...

Even A Miracle Needs a Hand
Miracles happen most every day
to people like you and me

but don’t expect a miracle

unless you help make it to be

You hope while I hurry

You pray while I plan

We’ll do what’s necessary cause

Even a miracle needs a hand

You love and I’ll labor

You sit while I stand

Get help from a next door neighbor cause

Even a miracle needs a hand

We’ll help our maker

to make our dreams come true

but I can’t do it alone

So here’s what we’re gonna do

You hope while I hurry

You pray while I plan

We’ll do what’s necessary cause

Even a miracle needs a hand

We’ll help our maker

to make our dreams come true

but we can’t do it alone

So what are we’re gonna do

You wish while I whittle

You drip while I dry

Lets all try to help a little cause

Even a miracle needs a hand

~Sara

ps-- (more on the Feeding Clinic tomorrow)

Amazing

My sweet Grandma is back in the hospital after having surgery right before Thanksgiving. She has vascular disease in her legs from diabetes, and has severe pain from decreased blood flow in her lower extremities. During the surgery, she had a graft placed to shunt blood around the blocked vessels.

Last night, she developed a high fever, and my mother had to bring her back to the ER. The incision is infected, and the graft in jeopardy. She was readmitted, and will be having another surgery today to try and correct the problem. If they are not able to save the graft, she is at risk of losing her leg altogether.

I have written before about how important my Grandparents are to me, and to my brother, Brent. They helped raise us, and we are extremely close with them. To say that we are worried about Grandma is the understatement of the year.

My mom called this morning to update me on the surgery, and asked if I would bring Maggie over to see my grandfather, who is waiting at home while Grandma is at the hospital. He needed a "pick me up", she said.

So after her nap, I loaded The Moo into the car, and brought her to see her Great Grampy. Maggie looked right into his eyes, and smiled the biggest smile! He started to cry.

My daughter never ceases to amaze me.

~Sara

Snow

Here's some video of the Peanut. Enjoy!

We took her out into the snow for the first time on November 22nd (also the day it took me 2 1/2 hours to get to my office) It's a little dark, but I wanted to share:

I tried to get the Thanksgiving video to load, but I'm having some trouble. I'll work on it, as I know you all want to witness "The Great Mashed Potato Experiment".

I'm sorry I've been absent from blogging for a while. I've just been having a rough time. Some sort of delayed grief reaction, I suppose. When Maggie was first born, and for all those months in NICU, I was in survival mode. I just wanted to get her home. When she first came home, there was so much going on that I still didn't deal with alot of the residual feelings I had from her early arrival. So now that she's been home for a few months, it's all catching up to me. I've spoken to alot of other micro-preemie parents about this (I belong to an online support group), and it sounds pretty typical. So at least I know I'm not completely nuts... Most of the time, I can keep it together pretty well. But there are some days where I feel like I am barely keeping my head above water, and it's all I can do not to just sit on the floor and cry.

Hunger Strike '08 continues. Maggie is barely eating 1/2 ounce by mouth now. She will sometimes refuses completely. She will still suck on her fingers and her binky, so we encourage that as much as possible. She is still throwing up a significant amount, but seems to have improved a little in the last few days. We are giving her less milk on a more frequent schedule, and this seems to stay down a little more consistently. So at least she is keeping the calories IN better. I met with the GI doctor again last week, and we are keeping Maggie's medications the same. She will have an endoscopy done later this month, to have a look inside her esophagus and stomach, and to take biopsies if necessary. I also got Maggie an appointment to see the Feeding Clinic at CHOP in a couple of weeks, so I am very excited for that. They will help us address the behavioral aspect of Maggie's feeding difficulties. I am thankful that we have so many excellent resources in the area. My friend Jules is a NICU nurse in Maine, and she was telling me that alot of her parents have to drive upwards of 3 hours to get to Boston for specialists like these. We are very, very lucky to live within driving distance to the #1 Children's Hospital in the country.

In more positive news, Maggie had her first follow up with the eye doctor since discharge from the NICU. Dr. Nelson said that everything looks great with Peanut's eyes! We don't need to see him again until this time next year! It was so good to have one thing COMPLETELY crossed off the "worry list"!

We are taking Maggie to get her first Christmas tree today. We decided that, since the tree farm is outside, it would be okay to bring her. So she'll get all bundled up, we'll wisk her over to the tree, snap a couple of pictures, and put her back in the car! I am so excited to see her at Christmastime. She is becoming so aware of the world around her. It's fun to watch her see everything for the first time!

Thank you all for your calls, emails, etc, while I have been in hiding these last couple of weeks. I can't promise I will be any better in the near future, but please know how much we appreciate your thoughts and prayers. I am trying to take better care of myself-- I think I've neglected myself over the last 7 months because I am always so worried about the baby. I am planning to renew my membership at the Y so that I can get to the gym for an hour at least a couple days of the week. Not that I particularly ENJOY working out, but maybe it will be a good stress release for me. (Not to mention boost my self esteem and body image.) I will be heading up to CT next weekend for some much needed "girl time" with my good friend Liz. We have massages scheduled for Saturday!!! (Boy, do I NEED it!) I think that decking our halls today and turning up the Christmas music will also do WONDERS for my mood.

~Sara

Too Close to Home

Yesterday at work, at about 4pm, a patient called our office. She was 6 1/2 months pregnant, she said, and couldn't stop leaking fluid.

Of course, I was the one to speak to her on the phone.

Is my baby going to be okay? What's happening? Oh my God, why is this happening?

She sounded so scared. Terrified. And I remembered that all too well. Seven months ago, almost to the DAY, I was saying the exact same things.

I remembered the look on Jim Kolter's face when he came back into the exam room to tell me that, yes, I had indeed broken my water. I remembered Elaine asking if she could call Dan for me. I remembered thinking, This cannot be happening. I remembered the ride to the hospital, praying that Maggie would be alive when I arrived. I remembered staring at the wall as the nurse started my IV. I remembered that sick terror when the resident told me I was 5 to 6 centimeters, that they were shutting off the Magnesium, and that the baby was coming. I remembered seeing her tiny body on the warmer bed, with skin that was thin like Saran Wrap. I remembered watching the monitors as her heartrate dropped to 90, 80, 60, 50, and 35. I heard the alarms going off. I remembered it all.

It was too soon for me to handle this patient. I was very lucky that one of my attendings offered to speak to the patient on the phone, and give her instructions (Thanks, Shari). I was shaking too badly to concentrate. I shook and cried all the way home. When I arrived, I scooped up my Peanut and whispered in her ear, like I do every evening after I work, "Mommy's here now. Mommy's home now." I breathed in her smell, touched her soft hair, and said a silent prayer for my baby.

It's too soon for me to handle patients like this. I thought I was strong. I thought I was handling all of this. But that phone call cut me off at the knees. I realized that I am still very weak and fragile, and that the trauma of Maggie's early arrival will not fade anytime soon.

~Sara