Ramblings of a crazy woman

So here I sit, at 11:30 at night, a load of laundry waiting to be folded beside me on the couch, half of our Christmas presents sitting at my feet waiting to be wrapped, and several different Abby items await my cleaning abilities in the kitchen. But am I tackling any of that? No. Instead, I am sitting on the tiny portion of the couch that isn’t taken up by clean clothes and our tiny dog that always takes up more space than necessary, and I’m brainstorming.

For all you moms of infants, toddlers, and preschoolers out there, I’m betting you know the “Brainstorming!” song from Imagination Movers on the Disney Channel, right? Right? No? Just me? Ok… well, anywho, it goes, “There are no bad ideas when you’re brainstorming!” Gotta love that thought.

So here I am, throwing out ideas, both for this blog, and for the future of my writing in general, and seeing what sticks. So then I got to thinking that I need some input. You guys, my readers, are the people who matter most to my writing. My words mean very little if there is no audience to read them. I have no clue how many of you there are out there. The last estimate of regular readers hovers just over 100, but there have been times that we’ve hit the 200-independent-hits-in-a-day mark. That feels so good! When I started this blog it was just for me. One person. And then, I had a small following of about a dozen or so, reading about my adventures here and there. When I started writing about my pregnancy, the numbers upped to about 3 dozen readers. And now, I can’t believe that EVERY time I post, I get no less than 100 of you.

It is obvious why I get those kinds of numbers these days. It is because this blog went from “hobby writing” to “story telling.” This blog has purpose, now. Our Adventures with Abigail are worth talking about. Worth reading about. And therefore, worth writing about. But within that storytelling purpose, I’ve found other purposes, too. Shout out to the moms who read this blog that I’ve NEVER met before but were sent here, specifically to read about a story just like your own. This blog has brought several of us together to find comfort and support. This fact astounds me. This blog is also a center for information! I’m getting a small following of people interested in the research I do on the world of babies and the “stuff” that comes with them. And there is always the Soap Box. Advocacy is a big deal to me, and this blog is slowly but surely becoming a place to learn about preemies and micro-preemies and the road we all travel under that title.

I gotta say – I’m PROUD of all of that. But where do we go from here? Here are some of MY thoughts. I’d love for your 2 cents! (Take advantage of that, people – it’s an offer I don’t give very often!!!)

1) Write a Book. While that will take time, it is something I’ve had several of you ask about, and I’m considering it. Seriously.

2) If I write a book, what would be a better read? Our story in Novel form? Or A compilation of stories and information? Or both?

3) For the blog: More about Abigail and her progress? More about Being the parent of a Micro Preemie? More about the research/info I find? Or do you want the cupcake project back? 😉

4) What about starting a forum? A place where parents and families related to these topics can come and chat, find info, gain support?

5) Would you read this blog if there were more about my whole life and less about Abigail?

6) When Abby is “all better” (as in caught up to her peers and “progress” isn’t needed) what do you want to hear about?

7) What about showcasing other stories like ours? Would you like to read about other Micro-Preemie families and their road, in a “Features” section of the blog?

I’m just looking for ideas. Input. Thoughts from the people who make this blog what it is. Let me know what you think!!!

Thanks readers!

-Jen

Abby lost 5 pounds…

That title got your attention, didn’t it?

Well. It’s true. Abby lost a whopping 5 pounds yesterday… Dr. Saul called to tell us we could FINALLY detach her from the heart rate/apnea monitor!!!! (The machine itself weighs about 5 pounds.) Merry Christmas to us!

That’s right, folks! Last night, Abby slept through the night for the first time EVER, without her wires. It was liberating for all of us.

I can’t tell you just how much this means to me and Anthony. Abigail has had no less than 2 wires attached to her at all times since the day she was born. In the beginning, it was far more than 2. It was closer to 9. As she got better in the NICU, it gradually made its way down to 3 – stuck to her with hospital grade “lead” stickers (the wires are called “leads” in the NICU). The only time those wires ever came off was to change out the stickers. They even stayed on in the bathtub. The day we brought her home, we had to switch her from the NICU monitor to the Life Care monitor for our home. This was the day she went from 3 wires to 2. She was wire free for 5 whole minutes that day, and it was the first time since her birth that had happened. Here at home, it’s been the 2 wires, day and night, since August 24th. The only time they came off was during bath time – so for maybe 20 minutes every 3 days. And she certainly has never slept even once without some sort of monitoring system attached to her body. Ever.

Until yesterday.

It’s been a day we’ve been patiently waiting for. I will be the first to acknowledge the blessing this little machine has been. When we brought her home, it was truly a God send. It very literally helped Anthony and I to save Abby’s life more than once. It did its job! While Abby was definitely well enough to come home from the hospital, she still had Apnea of Prematurity. She just wasn’t far enough along, developmentally, to always remember to breathe when she was asleep. And there was more than one occasion where she did actually STOP breathing in her sleep. That monitor alerted us to the problem far before Abby was ever in real danger. Because of the monitor, we got to her in time, every time. And every time, I said, “I don’t know what we will do without that thing.” It brought a relief and a peace of mind that made it worth its weight in gold.

But I will also be the first to tell you that inside that blessing was a curse. The monitor weighs about 5 pounds. The day we brought her home, it actually weighed more than she did. But now, here she is, 11+ pounds, plus a heavy diaper bag, plus a 9 pound baby carrier, and oh yea… that dang monitor. Just one more thing to carry. The beeps were EAR SPLITTING. A high-pitched screech that still makes me jump when I hear it. And in the last two months, 9 out of 10 of those beeps were false alarms. The two wires were connected to her sides under her upper arms by a foam band that went all the way around her torso. Those wires ran several inches past her feet and then plugged into a “Y”connector, which then connected to a very long wire (about 5 feet), that then connected to the machine. And oh, the battle I had with that stupid wire! Most of the time, I was cursing it because it was too short. It kept Abigail, and therefore me, tethered to one location most of the time. But then, when we would pick up the machine to move it, and her, it somehow became far too long. It dragged on the ground and tripped everyone from the person carrying her, to the people walking with us, to even the dog on occasion! And the kids (her cousins) couldn’t be expected to remember about the wire – so they would trip on it. And then, Abby herself would get tangled in it, too. It would get wrapped around her leg or her arm or both. We had to get creative with clothing her – threading the wire through pants, always making sure it came out through the snaps in her onsies, securing the wires with the Velcro strap of her diapers, couldn’t dress her in anything with a zipper… stupid, stupid wire!

I really could complain about the darn thing for hours. It scared people. It made us nervous. But if I’m honest, Anthony and I were a giant ball of nerves last night without it. We finally got to experience that “first night home” the way everyone else does. Is she ok? Can I go to sleep? What if she needs me? What if, for some reason, even though she hasn’t had an apnea episode in almost 2 months, she chooses TONIGHT of all nights to have another one, just because we took the darn monitor off? The pressure is immeasurable, and I considered pulling an all-nighter, just to be sure. But Anthony said no. He and I said a prayer and he reminded me that if God had gotten us this far, He was going to get us through tonight.

Abby slept for the longest she has in a long time – hitting the 12 hour mark for the second time in her life. I actually woke up before she did for once. Anthony and I looked at her, sleeping (and breathing) away. We’d made it. *SIGH OF RELIEF* Anthony looked at me and asked if I’d gotten up at all through the night to check on her. I admitted that I had. I sheepishly answered, “Yea. Once.” I nodded my head in his direction to ask him the same question. He looked at me with that “don’t worry about it” face, and said, “Yea. Twice.” She’d gotten checked on 3 times through the night with no issues and I knew then that we truly don’t need the monitor anymore.

As I’m typing this, she is asleep in her bassinet by our bed. She will sleep there for about another month before we move her to her “Big Girl” crib and reclaim our bedroom. I’ve checked on her twice in 2 hours, and Anthony has once. And I have no doubt in my mind that it will be her cries in the morning that will wake me up. Because, other than the “Corrected Age” thing, we finally have a totally typical baby girl.  😀

-Jen

Rice vs. Oatmeal: The Throwdown

If you know me, you know I’m a researcher. I make very few decisions on the fly, without some sort of information backing it up. And the few times in my life that I have done that… let’s just say it just didn’t feel right. I research everything. Shamelessly, I’m that annoying know-it-all that loves to prove people wrong in a Hermione Granger-esque sort of way. In high school, I researched a ridiculous amount of colleges, but only applied to 3. Once in college, I researched every major that my diagnostic test suggested I could possibly be interested in before changing majors. When we moved, I exhausted Anthony with how many complexes I wanted NEEDED to see. And don’t even get me started on the research that went into each little decision regarding our wedding.

But with Abigail, it seems to be a whole different ball of wax. I will admit that up to this point my research has always been about what is best for me. Occasionally it was what was best for ‘us’ but that still included ‘me.’ Now, I am responsible for making the best decisions possible for someone else. And not because she wants me to, but because she NEEDS me to. My decisions directly affect her well being. Oye! The pressure! So, the research has been…extensive. Yea. Let’s go with that.

Want to know the truth? I was researching things for Abigail before Abigail even existed. My best friend, Beckie, and I stole away one night, months before Abby was even a ‘twinkle in my eye’, to the mother-lode of all baby stores. That’s right. We took our first real trip up and down the isles of Babies R Us. We didn’t want anything other than information. We went up and down every single isle, simply exploring. We looked at the difference in brands and prices, product options, and all the stuff that we just don’t need but SO want to have. We even took notes. Yup. Notes. I’m that big of a nerd. And I’m ok with it.

So if that was how “pre-research” went, you can only imagine what the real thing was like. I dragged my poor husband up and down those same isles several times, emailed him countless “What do you think about this one?” emails, and read him about a gazillion recall articles. In the end I think we made some pretty good decisions, as Abigail has responded well to the majority of our choices. I am also very thankful she is as easy-going as she is, as I know that has something to do with it.

When it came to food, I was kind of relieved when some of those decisions were made for me. We’ve been on one formula from the get-go and it was (and still is) Dr.’s Orders. A special formula made just for preemies and their dietary needs. Perfect! But now, I’m in charge again, and it is more important than ever that I get it right. When we were in the NICU, they told us babies like Abby have one of 2 problems – either respiratory or digestive. Digestive is the less threatening of the two, and I am happy to say that is all we had to deal with. But, that being said, we STILL experience some difficulty with her digestive system, with constipation and gas being the primary symptoms. I know that all the Mom’s out there just read that and thought, “Oh, no biggie – ALL babies go through that.” And for the most part you’d be right. But it is a little different with Abby. I’ve seen what these issues can do. We watched in horror as her belly literally blew up like a balloon. It’s scary and I never want to go there again. So I’m going to have to pull the Mommy-of-a-special-baby card and say it isn’t exactly the same. And the fear of it returning never goes away.

All of this leads me to Dr. Saul’s proclamation that it is time to introduce “first foods” to Abigail as soon as possible. Well what the heck does that mean? Of course, I asked and he said “baby cereal, usually rice, and promptly after add fruit and veggie purees.” Well, do one internet search on ‘first foods’ and you get this jumble of contradicting information that had my head spinning. Some sites say introducing cereal first is best because it has the smallest chance of triggering allergies. Other sites argue that starting with fruits and veggies is best because it helps to develop the taste buds better. A third collection of websites claim that there is no scientific evidence that either side of the argument is correct. Grrr.

Once you decide what goes first (with Dr. Saul’s guidance, we are going with cereal first in the hope of avoiding allergic reactions before we are out of the gate) then you have to decide exactly what cereal to go with. Oh, you didn’t know there were options? Well… let me tell you. Which grain? Rice, Oatmeal, or barley? When you figure out which grain, what kind of prep? Instant or home-made? Once you decide that you’ve got to choose brand on one side, and regular or organic on the other. It’s never-ending!!!!

Rice Cereal in a box (you know, the Gerber kind) is the most obvious and the most common. But the list of cons to that is mind-boggling. Instantly, I read and hear “No!” on that one – Rice causes constipation, commercial is expensive as you are paying for convenience and packaging, pre-packaged isn’t nearly as nutritious as fresh, rice isn’t nearly as nutritious as the other grains, etc, etc, etc. So in one foul swoop we’ve eliminated rice cereal and commercial, pre-packaged cereal regardless of grain.

So, that leaves me with oatmeal and barley. And that is a no-brainer. Oatmeal. Because who wants to torture their kid with barley? (No offense to anyone who a) eats it, or b) feeds it to their kids…it’s just a preference of a picky eater on this end.) Awesome! I’m ready, right? Yea… not so much. Turns out there are several different types of oats to choose from and a different pro, con, and way to prepare each one. Someone shoot me.

Well, I’ll spare you the details and the endless stream of internet information that fueled the end result, but here it is: Abigail’s first food will be a home-made concoction of fresh, steel-cut oats from Sprout’s Farmer’s Market that we will grind to a fine powder in the magic bullet and cook with tap water. We will then mix it with a little of Abigail’s special Preemie formula to ensure she’s getting the Iron she needs, as well as lessening the shock of introducing texture. Tada!!! (What you can’t see is a very tired and dazed Jen about to pass out from information overload about a grain she doesn’t even eat!)

Luckily, the fruit and veggie puree research will be less of a struggle. For those new moms out there, if you haven’t heard of Annabell Karmel yet, get to know her. I have 3 of her books, all of which are amazing. Some of her toddler food even I want to eat, and if you know what kind of finicky eater I am, you know that’s saying something! I will be following her guide, to the letter, about what and when to feed Abigail, as her philosophies seem to line up perfectly with Dr. Saul’s. Thank the Lord for an easy decision!

So cheers to no more research for a while! That is, until the next agonizing decision I have to make for the well-being of my kiddo. 😉

-Jen

Picking out a high chair

So, this morning, Abby had her monthly check up with Dr. Saul. And as usual he came in, assessed her, and started asking me questions while reading her charts.

We talked about her size and what she was eating, and what she was doing with her hands and her head. And as I was talking about her being able to hold up her head, he interrupted me with a “wait one minute!!!”

You see, Dr. Saul is a popular man. He has quite a few patients. And when I say quite a few, I’m talking hundreds. And he specializes in preemies and micro preemies, so even Abigail is just one in a bunch for him. So he has to review each chart to really remember each case he is dealing with. And it wasn’t until that little skim through that he realized who she was. And how old she was.

He did a sort of double take – and this is where we insert the “Wait a minute!” exclamation. Dr. Saul thought that we had already passed the 3 month corrected marker. He thought we were well on our way to the 4 month corrected marker. So when we talked about her holding her head up with no problems and batting at toys and “talking” up a storm, that sounded right on track. But when he realized that we are still 2 weeks away from the 3 month corrected marker, he was amazed! He actually asked me if I was sure that this was the same baby he’d been seeing all this time, or if I’d traded her in for a real 3 or 4 month impostor!

He immediately started examining her more closely. He was delighted to see that her neck had straightened out and gained strength on the left side. He was impressed with her increased flexibility and how vocal she was being. He kept saying ‘wow’ and had this satisfied look on his face. It felt really good. He said he couldn’t believe how well she was doing. He even said, “She’s perfect. Just perfect.”

He went to the charts. Her height and weight jumped from the 25th percentile all the way to the 35th!!! She now weighs 11 pounds and one ounce (almost a full 2 pounds from last month’s appointment) and she is 22 and 3/4 inches long. We are rapidly approaching that 50th percentile mark we’ve been looking for! And the best news of all is that we’ve got a real shot at coming off the monitor. They come to pick up the machine and download the info tomorrow. We’ll have results in about a week. Please say a prayer!!!

So, next up? Food. For preemies, almost EVERYTHING is based on their corrected age. That is, except feedings. That is based on chronological age. She is 6 months old, and if she isn’t introduced to textured food before 7 months is up, we risk serious repercussions. All babies, preemie or not, are at risk to develop texture aversions if they aren’t introduced to food other than milk or formula before they reach 8 months of age. For full term babies, this is rarely a problem. Even for most preemies, this isn’t a huge deal. But for Abby, who is more than 3 and a half months older than her brain thinks she is, this can lead to problems. If she develops an aversion, she won’t eat. And if she doesn’t eat, she will lose weight, which creates a domino effect that will hurt or destroy everything we’ve worked so hard for. It’s a pretty big deal. Babies who develop texture and food aversions usually end up with another tube down their nose to feed them what they need to continue to grow, which usually only perpetuates the aversion. Again, this is worst case scenario, which brings me back to those first days in the NICU. We don’t even want to think about it.

So… hence the search for the right high chair for Abby. We need to introduce rice cereal and then promptly after introduce purees. The next couple of weeks should prove to be… entertaining if nothing else. Ha! The high chair can’t be just any high chair, either. While she has control of her head, she is far from able to sit on her own. She is what is called a ‘supported sitter’ which means she can sit with assistance. And when I must have 2 hands focused on her head and her mouth and her spoon, and possibly a pat on the back to prevent her from choking, I need to ensure that the high chair can do all the sitting assistance. It needs to grow with her, too, so we aren’t buying a new one every time she gains a new skill. Hahaha.

I know the ones that sit on your dining room chairs are really popular these days. But as we only have 2 at our table, we don’t really have the chairs to spare. So we will be doing our best to combine old school with new school to fit our needs. I think we are going to go with this one:

The Blossom 4-in-1 seating system by Graco. It grows with her, and accommodates her needs, both now and in the future. Now I get to go figure out what brand of rice cereal I want to feed her. Oy. Research, here we go again!!!!

-Jen

Six of One, Half Dozen of Another

Photo taken today: Dec 2, 2010

6 Months.

Holy. Crap.

At 1:30pm today, Abby turned 6 months old. Half a year. Are you serious? That is simply not possible.

Ok, ok, we all know it is. Obviously – because it’s here. But that whole idea that “this time goes by so fast” has absolutely blindsided me. I’ve been looking back at “old pictures” of her and marveling at just how tiny she was. And then, having the same sense of amazement looking at her now and thinking, “look how big she is!” It’s a very confusing and overwhelming feeling.

I’ve known today was approaching for a while now. And not just because I saw it coming on my calendar. Today is a pretty big milestone. The first year for a Micro-preemie is all about getting through without too much damage. It’s not only a big deal to have gotten to half a year, it’s an even bigger deal to have gotten this far without her getting sick! (Not counting the NEC in the NICU – that is different, I’m talking colds or viruses).

I have friends who are the Moms of Micro-Preemies that really celebrated this milestone for their kids. One even got a cake! I think I convinced Anthony to take us out for cupcakes later. Tee-Hee!

But really, there are so many other things that mark the importance of today besides cupcakes and celebration. Check out this photo, also taken today!Yup – that would by my little girl, holding up her head all on her own. AND she just started to realize the whole concept of toys. Yesterday. Yup – yesterday, during her Occupational Therapy session, she realized, for the very first time, that the toy keys in her hand were actually there! She was fascinated. Today, she couldn’t get enough of her links. Holding them in both hands, and at one point having enough coordination to take one and put it in her mouth!

It’s hard to explain how great this is – mainly because every baby figures this out. But I can try to explain. A large percentage of babies like Abby have major delays in development. Some even suffer brain damage or disabilities that hinder them from living typical lives. The goal is to have the baby meet developmental milestones on target for their “Corrected Age.” This is the age that the baby would have been if they were born on time. So for Abby, even though she is 6 months old, her corrected age is almost 11 weeks – so not even 3 months old.

Some babies are behind even their corrected age. Abby’s therapist, Penny, just told me about a baby she works with that is a year old, should be at 10 months corrected, but is only at 7 months developmentally. She told me of another little one that is over 3 years old, but not there developmentally – closer to 2. She will need therapy for quite some time.

I am so excited that Abby is on target for her corrected age. She is what we call a “Supported Sitter” which should happen by 3 months – so she is slightly ahead there! She is right where she should be for most things, like tracking items, vocal communication, ability to focus, and range of motion. She is slightly behind on only a couple of things – her hands should have already relaxed, but she balls them up in tight fists still, so we are working on that. And she can push her upper body up to a 45 degree angle during tummy time, but she can’t hold it there, so we are working on upper arm and body strength, too.

It is so amazing to watch her develop. We will start feeding her rice cereal this month (can’t wait to get her high chair!) which will be a big step forward for all of us. And every day she does something new. She holds her head up better, or grabs something she has never noticed before, or she responds to something she didn’t respond to yesterday… It’s awesome. And as long as she continues to do things like that, she will eventually catch up to her June Baby peers and she won’t have a corrected age anymore. I’ve been told it takes about 2 years. Penny told me yesterday that we won’t see any “catch-up” happen until after she is a year to a year and a half old.

She is such a funny little girl. She loves to smile. She smiles so widely for me and for Anthony. Especially for Anthony. I definitely have a Daddy’s girl on my hands. She still loves bath time and she has decided she loves to talk. She makes a ton of vowel sounds, and will totally have a conversation with you or tell you a story if you sit and listen. Oh! And have I mentioned she is sleeping through the night? Yes, my friends, I have a night sleeper. It means that she is awake for several hours at a time during the day, but that is when we play! She naps in the morning, and in the afternoon, and she spends the rest of her time learning as we play. My days right now are just ridiculously fun.

We are gearing up for Christmas. She has noticed all of the decorations. She stared at a Christmas pillow for a good 8 minutes this morning. Can’t wait to see what she thinks of the Christmas tree! I can’t wait to share this holiday with her for the first time.

So, that is where we are at. We are working hard to keep her on target, and marveling in every little milestone we pass.

Happy Half Birthday, Abigail! You are so amazing!

-Jen