More Family Fun

Now that we have a new baby in the family we had to do this again. Haven't Holland and Eden gotten so big??? From left to right we have Marion, Eden, Mitchell, Claire, Jenna, Holland, and Matthew. Malachi is, of course, front and center. We'll have to do another update in April as one of my sisters is expecting again. Maybe it's her turn for twins:) My oldest sister and I have already paid our dues (Matthew and Marion are also twins).


Here are some really cute pictures of my new nephew. Isn't he sweet?

A New Cousin!

Last night we welcomed a new cousin to the family! My brother and his wife had their baby boy, Malachi, on Sunday at 9:19pm. He weighed 8 pounds 9 ounces and was 20 inches long. He has chubby cheeks, really big hands and feet, and dark brown hair. He is a beautiful baby and looks just like his mama. I was apparently so absorbed with the idea of a new baby, that I had a total brain fart and forgot all of our appointments today. I still can't believe I did it. We were supposed to have PT at 11:15, and Eden's first visit from the speech pathologist (from the hearing impaired program) at 2. They both came to the house and we weren't here!!! Ahhh!!! I feel really bad about it. I guess this IS the first time I have forgotten an appointment, so I shouldn't be too hard on myself, but I still feel terrible. I didn't even think about it until around 4:30 at dinner.

Ok, now I've gotta fess up, missing our appointments wasn't the only awful thing I did today. I also left Holland on our bed while I went to get her clothes...without putting pillows around her...and she rolled right off the bed!!!! She cried for a few seconds and was totally fine. However, her father and I were both traumatized. Especially her father;) The events of the day may put me in the running for the WWM award.

Holly had her allergy testing last week (or was it the week before???). It totally wasn't as bad as I expected. The test itself didn't hurt her at all. The worst part was just keeping her lying down flat for 15 minutes. She laid on my chest and I held her down while Nana rubbed her back and head. Thank goodness my mom was with me cause it would have been much harder by myself. The verdict is that she is definitely, without a doubt, allergic to eggs. Also allergic to almonds and cashews. But not peanut butter...and not fish or shellfish... I was surprised about the peanut butter, but when I think back I remember that, while nursing, every time I ate peanut butter I also ate almonds (my favorite Cold Stone creation). I assumed it was the peanut butter because John is allergic. I'm actually very happy because the allergies she has are usually outgrown. Peanut butter and shellfish are much more likely to be life threatening and long term. The only bad thing is that she has to be on an egg free diet and everything has eggs in it.

Eden's surgery is scheduled a week from today. I get sick to my stomach every time I think about it. We have a pre-op appointment with the surgeon on Thursday morning to go over the procedure. I have to remember to ask if she will be ventilated for the surgery. Someone asked me if she would be and I realized that I don't know! Part of me hopes she won't be because I don't think I can handle seeing her sedated and on a ventilator. On the other hand, if they don't put her on the ventilator I have to worry that she might stop breathing while under anesthesia. This is going to be tough. I've been so excited about getting the implant for months. Now that it is finally here I am starting to panic. I feel good about our decision, but no matter what, it's very tough seeing your baby go through surgery. Especially when they have been through so much already. I hope I can keep it together.

Our Future's So Bright...

Back to Work

Just in case you were wondering where we went...I'm back to work! Last Tuesday was my first day and things have been pretty hectic around here trying to work out a new routine. I'm lucky to be able to work part time, 2 1/2 days a week, and my new director has been very flexible in allowing me to work out my own schedule. I will be working Tuesdays, Wednesdays, and half days on Friday. I had originally wanted to work Mondays instead of Tuesdays but I just found out yesterday that Eden's follow up programming and auditory-verbal therapy sessions will be on Monday mornings, so it actually worked out well. Eden's cochlear implant will be activated on Halloween! I admit that I am really starting to get stressed out about the impending surgery. I have been thinking about it a lot, lying awake at night worrying and making up horrifying stories in my head. I'm sure that going back to work right now really isn't helping my anxiety level. I normally wouldn't consider myself a worrier, but apparantly I internalize more stress and anxiety than I am cognitively aware of. My body has funny little ways of letting me know when things aren't right (stress induced rashes, cold sores, weight loss). Unfortunate that these just end up adding to my stress! I could really use some therapy but I don't know when I would fit it into my schedule. Maybe I should get a massage or something.

Now let's get to some fun news... Holland has added a new sound to her ever expanding repertoire...the mmmmm. She now says ma, and even mama pretty consistently. Even before dada, haha! Holland is also learning to exert her will more, and has taken to throwing things and hitting the bottle out of our hands when she doesn't want it. She has also decided that she doesn't want to eat anything that she can't put in her mouth herself. We added in an evening meal of finger foods. Last night the girls had small pieces of broccoli, cheese, and apple on their trays. Holland sat in her seat and ate every bit of it, as happy as could be. She doesn't want a thing to do with baby food. Eden has become quite the little bird lately when it comes to eating. She will open her mouth wide for every bite, loves all the same finger foods as Holland, and loves baby food. She doesn't quite have the coordination to pick up little pieces of food to feed herself but she loves trying. She does well munching on a larger piece of bread, a celery stick, or an apple slice because she can hold on to them easier and get them to her mouth. Lately Eden has gotten much better at rolling to both sides while she is playing with her toys on the floor.

It is really fun to see the girls unique little personalities emerge. While they are both really sweet, good-natured babies, they are very different. Both love being around people. Holland is very analytical and stares and stares when she meets someone new, always trying to figure things out. Eden is more social, smiling and interacting more with new people. She has a more goofy sense of humor and just seems to "get" our jokes. I would say, in general, Holland seems to be more introverted and Eden is more extroverted. It is so interesting to see how they are interested in different toys, find different things funny, and relate to us and other people so differently. I'm just loving getting to know them.

We've Got a Date!

Just wanted to let everyone know that our appointment today went very well. We had our final consultation with the surgeon who will be doing Eden's Cochlear Implant. We have decided on this device. Her surgery is scheduled for Monday, October 3rd. She will stay overnight in the hospital, and will come home the next day with no bandages. We are VERY excited about getting Eden's implant, but also VERY terrified. After the surgery, Eden will spend one month healing completely before we go in to have the device activated. We've been warned that after activation it could take up to a year before Eden really begins to respond to sound. Since she has missed out on a year of auditory input, her brain has to start from scratch at trying to make sense out of what she hears. While many hearing children begin to say words around 12 months, Eden won't likely begin to talk at all until she is at least two (adjusted age of course), or later.

In related news, Holland has found her voice and has FINALLY started saying her B's! It took forever and I was starting to worry. She had a breakthrough last night and has been practicing nonstop even since with "Ahhhh, Baaaa" over and over again. She has also taken to yelling. Not out of anger or frustration, just out of sheer pleasure. I love listening to her. Last night her little voice brought tears to my eyes. We recorded it. I would love to post it, but have no idea how. Maybe daddy will figure it out for me (hint, hint) so you all can hear how sweet she sounds.

Thank you all so much for the supportive and encouraging comments on the last post. I really loved reading them. I look forward to new comments and check everyday, so keep them coming! I have also gotten and lot of really nice emails from other parents out there. I read all of them, and have been keeping up with quite a few other preemie babies online. I really love hearing and reading other people's stories. It really helps me to feel less alone and gives me hope. It also makes me feel good to be able to provide that sense of support for other parents. I really try to get back to all of the parents who email me. If I haven't gotten to you please forgive me, things are a little crazy around here! Please know that I REALLY appreciate all of your kindness:)
Billie

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.

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.

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 bye-bye...so sweet!