Monday, August 29, 2005

And the Hits Keep Coming...

This is a hard post for me to write and I have to admit that I've been stalling, trying to give myself time to absorb and digest the news. Part of me doesn't want to share because writing it makes it real, and forces me out of my denial. The other part of me knows that I have to face the facts and move forward. I also share in hopes that someone out there can read our story and gain hope, comfort, support, or strength from hearing about our experiences. That is really why I started this journal in the first place. So here goes...last week I got the results back from Eden's MRI. The MRI showed Periventricular Leukomalacia, or PVL, which is a softening of the white matter of the brain near the ventricles. The softening occurs where brain tissue has died as a result of getting too little oxygen at some point before, during, or after birth. It is likely related to the Grade II brain bleed that Eden had after her birth. PVL is strongly associated with Cerebral Palsy. In fact, Eden's neurologist told me that it is considered the "radiologic equivalent of CP." So, Eden has been officially diagnosed with Cerebral Palsy. The words "mild" and "slight" were used to describe the PVL. However, this apparantly does not correlate with outcomes for the child. Some children with severe CP have normal MRIs and some children with very mild CP have terrible looking MRIs. So we still have no real answers as to how bad Eden's CP will be. All we really know is that the hypertonia (tightness) in her leg muscles appears mild, and the hypotonia (floppiness) in her trunk and neck is "moderate." I guess the best case scenario is that Eden will slowly make progress and will eventually learn to sit, crawl, and walk. Worst case scenario is that she will never be able to do any of those things... Unfortunately PVL is also associated with a myriad of other problems but I can't even go there yet... I will continue to hope for the best and love my baby as hard as I can.

Ok, I am glad to get that over with... Now for the good news. Our insurance company has pre-authorized Eden's Cochlear Implant and it is going to be covered 100% (minus the $250 deductible that we obviously have already paid)!!! Her follow-up programming and speech visits will also be covered with no copays. We have a final consultation with the surgeon scheduled for Friday the 2nd at 9:30am. We will set a surgery date from there. I am hopeful that it will be before the end of September.

Ok, let's move on for a little Holland news... Holland is sitting very well now for longer periods of time, and we can just tell that she is proud of herself. Recently she has begun to get a little frustrated looking for a way to get down from sitting. Her newest solution is to try and slowly curl down backwards to avoid hitting her head too hard on the floor. It is very funny to watch and I'm sure she is getting a great ab workout.

Holland's eczema continues to be a daily battle. She is having more good days than bad, but occasionally, like today, she has a flare up. Today we discovered yet another food allergy. At least that's what I think it was. I have heard a lot about the incredible health benefits of egg yolk for babies and thought I would give it a try. Everyone says that the egg WHITE is the allergenic part of the egg so I wasn't too worried. Well, Holland took about 2 bites of the yolk and didn't like it. I didn't force the issue and took her to bed for a nap. She wouldn't go to sleep and ended up crying and throwing up in her bed. I didn't think too much of it because occasionally when she gets worked up over going to sleep she will start coughing and make herself throw up (this happens VERY rarely, usually she goes to sleep with no fuss). I brought her into my bed to watch a video while I read my book. After about a half hour she started fussing and rubbing her face all over the pillow. When I looked at her her eyebrows were bright RED and upon further inspection I noticed that a terrible red rash was spreading all over her face, chest, and back. This is the exact same reaction that she had to peanuts and shellfish in my breastmilk. It seems that I can conclusively say that Holland is allergic to eggs. Yolk or white, it doesn't matter. I called the allergist and made an appointment for tomorrow. We may end up having to do some allergy testing with her to determine if we should be carrying an epipen with us in case of emergency. So far we have been lucky that just her skin seems to react and her breathing remains normal. After a dose of Benedryl and a nap she was pretty much back to her normal self.

Wednesday, August 24, 2005

Cheerios Mastered

After a good three month battle over baby food things are finally starting to look up. Holland has mastered the art of Cheerios. I can put a handful on the tray and she will pick them up herself and eat them. She loves it and it will keep her attention for quite a long time. Eden is also beginning to demonstrate a love of Cheerios. She can't quite feed them to herself yet, but gets excited and opens her mouth for me to pop them in. As far as baby food goes, Daddy discovered the secret weapon...Zwieback Toast. Both girls love it so we use it to get them to open their mouths, then sneak the food in. They don't complain at all, maybe they even enjoy it. Eden has actually been eating better than Holland over the past couple of days without gagging on every bite! This breakthrough came just in the nick of time. I was really beginning to feel like I was going to have a breakdown trying to get them to eat. I gotta say that Feeding Baby Food comes in a close second to Severe Sleep Deprivation in the worst things about having babies/twins race. At least I knew well enough to dread the sleep deprivation. I thought feeding might be fun...silly me.

Saturday, August 20, 2005

Kisses, Reaching, Bye-Bye, and Teeth

I know it's been a while since my last post (9 days! A travesty!), so I'll try to make it worth the wait and let you all know what has been happening around here lately. Let's see... Eden has started giving kisses, definitely a highlight!

Eden's hives, which began near the end of April, began to get much worse around the end of July. She had them pretty much every day for about 2 weeks, and they covered her from head to toe, so I decided to make an appointment with an allergist. I took her in on August 12th and the doctor prescribed Zyrtec. He gave me a schedule to follow on how to increase the dosage if she didn't respond, as well as a second more powerful antihistimine to add if the zyrtec alone didn't work. Luckily, after one night of 1/2 tsp of Zyrtec (the smallest dose), she woke up hive free and hasn't had any more since. Unfortunately, we still don't know what she is allergic to.

Holland is really becoming a big girl over the past couple of weeks. She cut her 2 bottom teeth! We noticed the first one on Monday the 15th, and the second Tuesday. The weekend before she had a high fever and really wasn't herself, very crabby and kind of out of it. On Sat night it got up to 103, and Sun morning it was 102. At first we thought it was because of the one-year immunizations that she had the previous week, but it wasn't. I called the doctor's office and talked to the nurse on call, who said she should see a pediatrician that day because a fever with no other symptoms can be a sign of a bladder infection. That can be serious and requires treatment. We ended up taking her to St. Joe's Pediatric Emergency (I highly recommend it, they did an excellent job and the doctor was very friendly/helpful/informative). Holland's urine was clear of infection, and she was diagnosed with a viral infection. Apparantly there is/was one going around with the only symptom being a fever that lasts for 3-4 days then goes away. Holland was pretty much fine by the next day. So, a viral infection and teething at the same time...Yuck! She was quite a trooper, as always!

In the past week, Holland and Eden have both started reaching for us when we hold out our arms for them. We're also practicing waving Bye-Bye and Holland is really getting the hang of it. I love all of the cute little things they are starting to do. Reaching for us, giving kisses, and waving sweet!

Thursday, August 11, 2005

Babies Having Babies

Here we are with some of my best high school girlfriends, Donna, Lisa, and Jessie (and Aidan). In less than 7 months two more will join the crowd! That's a lot of babies:)

Monday, August 08, 2005

Sitting Like a Big Girl

Look at Holly sitting up playing like a big girl! The girls had their one-year check up with the pediatrician on Friday. Holland weighs 15 pounds 3.5 ounces and is 27 inches long. Eden weighs 13 pounds 7.5 ounces, and is 26 inches long. Their head circumferences are the same at 42cm (if I remember correctly). The pediatrician charts the girls growth on a normal curve based on their actual age of 12 months. Their head circumferences are actually on the chart now, around the 3rd percentile. Their lengths are approaching the curve. We still have quite a ways to go on weight, but they are still showing an accelerated growth pattern which is good. I remember one of the neonatologists at St. Joe's saying that we should give them one year for each month that they were premature before expecting them to "catch up" with their same age peers. This means that around age 4 they should be about the same size as other full term 4-year-olds. Of, course, genetics also plays a huge roll in how big they will be and with John and I as their parents, I doubt they will be very big girls, even if they had been born full term:)

Eden had her MRI today and it went pretty well. She had to be poked 3 times before they got the IV in, which of course I hated. I held up pretty well for the first attempt, but had to sit down to keep from passing out during the next two tries. It's so hard for me to see her in any pain. No matter how much I think I have it together, I always end up in tears. The rest of the procedure wasn't bad. She did better with the sedation and didn't choke on the medicine. Also, she woke up a lot easier and stayed awake playing through the evening. She even finished a couple of bottles before going to sleep.

The MRI was pretty much the last thing we had to finish before getting a surgery date scheduled for Eden's cochlear implant. All that is left now is to get approval from the insurance company and find out how much they are going to pay. We recently learned that our insurance usually pays 80% of the costs, which could leave us responsible for about 20K. If that is the case, we will apply for Children's Special Health Care Services, which will cost just over 7K for the year and will cover whatever the insurance doesn't. The BEST case scenario would be that MY insurance, which will go into effect when I go back to work, will pick up whatever John's insurance doesn't cover and we won't have to pay anything out of pocket. It's all very confusing. Luckily the people at the Cochlear Implant Program have been very helpful in navigating the whole insurace issue with us. Frankly, the whole thing gives me a headache. We're still working on straightening out the 10K worth of hospital/doctor bills that we've accumulated over the past year! Oh well, it's just money, right? And look at what I have to show for it...two beautiful healthy babies!