Tuesday, August 29, 2006

Messy Faces

It's not Mono, and Eden is starting to feel better. She did pull a breath holding spell during PT yesterday. I think she's starting to notice that it works to get her out of doing things she doesn't like... Bad News!

Holland is saying "Thank You" all the time now when you give her something. She'll ask for a "chippy", and when I give her one she says "chankoo." How cute is that?

Ugh. I am turning 30 on Thursday and I have to go back to work next week. Ugh.

That's it...just some random thoughts for today, and some cute pics to post.

Thursday, August 24, 2006

Enough Already

Ok. The girls had their big 2-year appointment with their pediatrician yesterday. We've also had an eye doctor appointment and an appointment with the physical medicine doctor since my last update, so I have a lot to report. The most pressing (or should I say DEpressing) news is that Little Miss Eden is STILL very sick. It actually all started on their birthday of all days. Holland came down with a fever of about 103. I took her to the doctor, who thought it might be Hand-Foot-Mouth. I'm not sure that's what is was because her only symptoms were fever and loss of appetite. She was totally better in 4 days. On the fifth day Eden came down with the same fever (the day of her bday party). Her fever also went away in 4 days. She seemed better for MAYBE 4 days, then started getting a sore throat.

Last Thursday I took her in to see the pedi because her throat was really swollen, inflamed, and had big white spots on it. The doc she saw that day thought she might have Mono (the strep culture was negative). So, we just planned to wait it out because, obviously, antibiotics don't work with a virus. However, instead of getting better, Eden seemed to be getting worse. Her throat continued to hurt and she started getting very congested. Yesterday between her swollen tonsils and adenoids, and her congestion, she could hardly breathe without her mouth wide open and her tongue out. And of course, through it all she has refused to eat all solid food and has been on a formula only diet for practically the past two weeks. Poor Baby.

Of course this HAD to happen just in time for the big 2-year appt where they get weighed and plotted on the official growth chart. Needless to say, it wasn't good news for Eden. She went from 17 pounds 15 ounces on May 31, to 17 pounds 12 onces. She did grow in length and head circumference, so now she looks like a long skinny twig with a big ole head. Lucky she has those big beautiful eyes and that stunning smile to distract people from noticing that she has NO meat on her bones.

So their pedi spent a good 10 minutes explaining to me that she is FINE and I shouldn't WORRY so much. Her head growth seems to be leveling off at around the 50th percentile for her chronological age. This is good news, because once her head stops growing so fast, her body should have a chance to catch up. She has gained a little bit of weight since her 18-month appt, and the doc thinks we can't put too much stock in yesterday's weight because she has been sick. So okay. I will TRY to stop obsessing over it. I will TRY to stop imagining that she will NEVER eat and that she will have to have a feeding tube. I will TRY to stop thinking that she won't hit 20 pounds before her fourth birthday. Okay, I will TRY. But I am not making any promises.

We are going to start Eden on Zantac to see if that will make any difference in her eating. She does have reflux, and it could be that it is making her throat just sore enough that eating is uncomfortable. We'll see if it helps.

So, back to the sickness. Our pedi definitely wants to rule out mono and suggested that we do the bloodwork to find out for sure. If is IS mono, Eden could get a steroid to help with the inflammation and swelling of her throat. So, after the appt we went downstairs to get the blood drawn. A nurse from the office actually went with us to warn the nurses drawing the blood that Eden tends to hold her breath and pass out when she gets shots. Eden actually did very well with the first poke, except that the vein collapsed before they could get enough blood. When the nurse put the tourniquet around her other arm to see if she could find another vein, Eden LOST IT. She did the WORST breath holding spell I've ever seen. And I've seen a lot of them (every month when she had her Synagis shots). She started to cry and held her breath until she turned blue and passed out. Then to top it all off, went rigid like she was having a seizure. Obviously the nurse taking the blood had never seen a child do this before. She's yelling "shake her, shake her" and then "she's having a seizure!!!" like a maniac. Okay, I had seen the turn blue and pass out thing before, so that was NO surprise. In fact I was expecting it. I HADN'T seen the whole seizure thing before, so was totally freaked out. I started bawling, and went running out of the office back upstairs to see our pedi again (luckily they are in the same bldg). The nurse from upstairs came with me. Everyone in the waiting room heard the drama and saw me running out of there crying with my baby, who at that time WAS breathing again, but was very lethargic and still not a very pleasant color.

So, once again, our ever patient and kind pediatrician sat with me to talk some sense into me. He said it WAS NOT a seizure, but rather the body's reaction to the sudden drop of blood pressure and lack of oxygen to the brain. Not at all uncommon for these little breath holders. So, I got it together well enough to get us all out to the car and loaded up. Then I sat in the car for 10 minutes and had a total meltdown. Though I have had MANY meltdowns since these girls were born, it's been a while since I had one of that magnitude. Thank GOD my mom was with me or I have no clue what I would have done.

Anyway, it's all over now and we're all home and happy. Eden seemed to be feeling slightly better today, and I am hoping that tomorrow will also be a better day. We'll have the results of the bloodwork (what they could get anyway) by Saturday. If it's NOT mono, then it's viral pharyngitis and we just have to wait it out. Thank goodness for Tylenol. And Vodka.

So, the other big new of the past couple of weeks concerns Holland. At the eye doctor we found out that her eyes are still crossing ever so slightly, but it is mild and alternates eyes, so patching is not necessary at this point. We also know that she is still using both eyes equally well to see, and does not need glasses quite yet. So, as far as the eyes go, we're continuing to wait and see, which is fine with me because Holland seems to be seeing well enough at home. She watches tv across the room, looks at books, recognizes faces, etc, so it's not really a problem yet.

At the physical medicine doctor Holland got an official diagnosis of Cerebral Palsy. This also was not a surprise to us, because I have suspected it would happen for the past 6 months or so. In a nutshell, CP is just abnormal tone caused by some sort of brain injury. Holland has low tone through her whole body, and her left side has been slightly slower in developing than her right. As a result of the hypotonia, Holland ankles, knees, and other joints are really loose. It's hard to describe, but this is what is holding her back from walking. The low tone in her legs and trunk make her ankles very wobbly when she tries to walk and she has a hard time keeping her balance. She absolutely WILL walk though, and likely as an adult you won't even be able to tell she has CP.

In the past, Holland's type of CP would have been categorized as "hypotonic CP" and Eden's as "spastic diplegia." These titles really don't give you much information about exactly what the child is like, or how the CP affects them. Because of this, and many other reasons I am sure, doctors are moving away from this system, and toward a new system where the diagnosis is just Cerebral Palsy. The new classification system has 5 levels, with level 1 being the most mild, and level 5 being the most severe. Holland's CP would be classified as Level 1, and Eden's as between levels 3 and 4.

Okay, okay. I know this is getting long and boring, so I will try to finish up. At her 2-year appt Holly weighed a whopping 20 pounds 3 ounces! Since getting better (around August 5th) she has been eating much better. I mean, she still doesn't eat as much as I want her to, but it is better. Holland is also discovering her silly side, and we are enjoying it immensely. What a FUNNY girl she is!

I am sure that there is so much more to say. When I remember what it is, I'll let you know:)

Friday, August 18, 2006

We're IT

Hey, everybody else is doing it, so why can't we? We have been tagged by our adorable micropreemie twin boyfriends Collin and Cyrus!

Three Meme's for Holland and Eden

Holland: Holly, Hol, Stinker
Eden: Edie, Sweetie, Edie-Pie

Holland: Mommy, Daddy, Aunt Kimi
Eden: Daddy, Mommy, Nana

Holland: Elmo, Dogs (especially Zippo), and Crayons
Eden: Brushing my teeth, Water, and Toys with doors I can put things in

Holland: being told no, being buckled, and eating
Eden: eating, fevers, and having my toys taken away

Holland: Why I can't watch Elmo all day long, Why it's important to eat, and Why I can't eat blue popsicles in the living room
Eden: Why I need to eat, Why I need to take a nap, and Why I can't take all of Holland's toys

Holland: Elmo, Elmo, and more Elmo!
Eden: Me, my bead path, and my Mardi Gras beads

Holland: Watching Sesame Street, Staring intensely at the TV, and Tipping my head
Eden: Watching Sesame Street, Putting beads in a bowl, and rolling around on the floor

Holland: Stand up, take a few steps, and climb on the furniture
Eden: Roll, Say "What's That?", and point to what I want

Holland: high maintenance, silly, sassy
Eden: sweet, determined, easy going

Holland: walk, understand reason, and eat enough food
Eden: sit up, talk (much), and eat enough food

Holland: chips, guacamole, broccoli
Eden: mandarin oranges, bagels, ramen noodles

Holland & Eden: yogurt, cottage cheese, oatmeal

Holland & Eden: 27cal Enfacare formula, orange juice, Minute Maid juice boxes

Holland & Eden: Elmo's World, Sesame Street, Barney

Sunday, August 13, 2006

Cuteness Alert

Just a couple of great pics that I wanted to post...

And, in cuteness news, Holland took TEN steps yesterday, officially doubling her previous record. AND, today she was spotted taking initiative several times to try and walk on her own. She would take a few steps at a time before falling. It's progress!

The cuteness doesn't end there! Today we went to 2 bday parties for my nephews Mitchell and Connor (Happy Birthdays Boys!). Eden excitedly pointed to every balloon and said "whassa." If we weren't looking when she asked, she reached up to turn our face to look at her. Now, that's cute.

Okay, okay, I'm done. Not everyone cares about how cute my kids are...but, wait...isn't that why you're here?

Friday, August 11, 2006

Sunshine and Roses

Aren't we chipper this morning?

Not really. Is 9am too early for a glass of wine?

Monday, August 07, 2006

Happy 2nd Birthday Holland and Eden!

Well, Holland and Eden are officially two year olds. In many ways, their second year was easier than their first, and in many ways it was much harder. I can say for sure that one year ago I had a whole different picture of how life would be at this point.

Last year at this time Eden had not had her MRI, and we had no idea about PVL and CP. We were blissfully unaware of what life had in store for Eden, and for us as her parents. I imagined my two little girls running around playing together on their second birthday. I imagined them splashing together in the pool and running through the sprinkler. I miss those days when I was unaware, and I miss that picture of how I thought life would be. I continue to grieve for that loss.

At the same time, I am trying valiantly to revise the picture that I had for my life and theirs. I am struggling to find the good in it and to appreciate what I have been given, rather than focusing on what I have lost. I have faith in myself that I will get there. Just give me some time.

Wow, this is really depressing for a birthday post. Let me change directions and focus on the girls and what they are like as two-year-olds.

We'll start with Holland, as she was the first born. Holland is a little firecracker. She is energetic and funny, but also strong willed and stubborn. She has a mind of her own, and a penchant for tantrums when things don't go her way. Everyone will say that she is just like me, and it is probably a little true. At the same time that she can drive John and I crazy with her attitude, we secretly love it and frequently look at each other with a combination of exasperation and amusement when she is being a brat. I use the word "brat" in the most loving way possible.

Holland is pushing 20 pounds. She easily cruises along furniture and walls, walks holding one hand, and pushes her carts around. She can stand up in the middle of the floor, and has good balance when standing. She can even stand and dance. One time she took 5 steps during physical therapy, but since then won't even try to walk.

Holland is Mommy's girl, especially since I started staying home for the summer. She wants to be with me all the time and has trouble playing independently. She would rather me carry her around all day or sit on the floor and play with her constantly. She gets jealous when I am focused on Eden.

Holland is a great sleeper. She goes to bed easily around 9pm and gets up between 8 and 9. She is ready for a nap around noon, no matter what time she wakes up in the morning. She will often sleep over three hours at nap time.

Holland is talking more and more all the time. She has a extensive vocabulary, not sure exactly how many words, and she has recently began putting two words together. The first I noticed was "mama take bite." She also often says "papa, hi, more more" (or nana, kimi, dada, etc), when she is missing someone.

One really funny/quirky thing that Holland really likes is to carry small objects around clenched in her fist. She especially likes small tube-like objects like sticks, crayons, or lipstick. She will studiously place the tip of the object in the center of her palm and carry it around all day. If it moves out of place when she is crawling, she will stop to readjust it. Just lately she has moved more toward small bits of paper that she will tear out of a coloring book. Often I will unclench her fist before bed and find a tiny piece of paper or food that she has been carrying around. Strange but cute.

Other cute things Holland is doing now... She loves Elmo, I mean LOVES. She knows the names of all the Sesame Street Characters including Big Bird, Cookie Monster, Grover, Zoe, The Count, Bert, and Ernie. She loves babies and does the sign when she sees one. The sign is always accompanied by a funny grunting sound that is supposed to be Awwwww, but sounds more like she needs to poop. She claps when anyone takes a bite and dances while we cheer..."Yay, Mama took a bite, Mama, Mama, Mama." She puts things on her head and says "hat", then dances while we sing "A silly hat, a silly hat, I wear it on my head because that's where it's at." She loves music, dancing, and drumming. She loves blankies and pillows and will cuddle up with them and play the go to sleep/wake up game. She wants to kiss everything that she knows the name of. She will look at a book and say "frog!", then kiss the frog, "toothbrush!", then kiss the toothbrush, "potty!", then kiss the potty. She names body parts and wants to kiss them too. The other day she said "hair!", then pulled a piece of her hair down to kiss it. She will often say "belly!", then wants to kiss mommy or daddy's belly.

Okay, now let's talk about Eden! Eden is as sweet as sweet can be, with just the right amount of sassiness mixed in. She is really laid back and usually content to go with the flow, but at times she can be a little bit of a bully when she gets her mind set on something. Eden has great concentration and is very determined.

Eden is about 18 pounds. She is great at getting where she needs to go with a combination of rolling, military crawling, and pushing off of things with her legs. Her arms are strong and she uses her hands well. In fact she has quite a strong grip and easily grabs toys out of Holland's hands and makes her cry. Eden wants whatever Holland has. She will roll over and grab whatever part of Holland she can get, her shirt, hand, ankles, and pull her down, then take whatever it is that she has. I will often hear Holland fussing, grunting, and calling "help" when Eden has ahold of her.

Eden sleeps great during the night (except for this week because she is sick). She will go to bed around 9-9:30 and wake up after 9 in the morning. She doesn't really want to take naps any more, which is obviously a problem for mom. Fortunately Eden is happy and sweet even without a nap, she just kinda zones out when she is tired, unlike Holland who gets really irritable.

Eden has been hearing with her cochlear implant for 9 months now. Her language development has really taken off in the past two weeks. She says a few words, which only mom, dad, and nana can decipher, including mama, dada, baba, zippo, dog. She just recently started pointing at things she wants and saying something that sounds like "essa." Her other big word is "adoo." I interpret these as What's that?, and All Done. When she wants to tell you something she will reach up and turn your face to look at her. She is talking all the time now, often repeating the same sounds like she is really trying to tell us something. I wish I could understand what she is telling me more. She has a lot to say and seems so serious about it. We have heard varying opinions on how much the CP is going to affect Eden's ability to talk. My gut feeling is that she will talk just fine. We just need to be patient with her. She has a lot of obstacles to overcome.

My favorite thing that Eden is doing right now is giving great big squeezes around the neck. If you lean down near her she will grab onto you with her little monkey arms and pull herself up and give you a squeeze. It is the cutest thing ever. I also love that she is pointing to things she wants with her little pointer finger, and how she turns your head to look at her when she talks. Eden thinks everything her dad does is funny. She loves watching him jump around and act silly and will squeal out in excitement. She also loves to be scared. If you jump out from behind something and say boo, she just cracks up. Eden is VERY ticklish. Sometimes, when you get her just right, she does the silent belly laugh that we love. She gets tickled a LOT just so we can hear that laugh. Eden also loves playing catch, playing with her feet, and taking her socks off.

So, as Holland and Eden enter their third year of life, they are not running around getting into everything like other 2-year-olds, and they do not talk to and play with each other much yet. But they are cute, and sweet, and funny, and totally lovable just the way that they are. They are a lesson in patience, hope, commitment, faith, and perseverance everyday, and we are all learning a lot from them.

Tuesday, August 01, 2006

We Hate Food!

I promise a sweet birthday post next week, after their party on Saturday, but today I need to vent about the whole feeding/eating (or should I say NOT feeding/NOT eating) issue.

Aside from the CP and physical development issues, this is one of the greatest challenges we have faced as parents of micropreemies. I have done absolutely everything I can think of to get these kids to eat and I am seriously at the end of my rope. They hate food. I have no idea why. I know that we are not the only family experiencing the food hating phenomena, and with many micropreemies it is much worse. Many preemies experience some degree of oral aversion from being on the vent and tube fed for so long. Many preemies also experience varying degrees of reflux and vomiting that make feeding a nightmare. A lot of these babies end up with g-buttons, where they are fed directly into their stomachs. We haven't had to go that route so far, but it is always looming in the back of my mind when I am struggling to get them to eat. Sometimes I find myself wishing we DID have a g-button so I wouldn't have to worry so much about getting enough calories into them.

My girls are still extremely small. They are small for their chronological age, their adjusted age, however you look at it. Eden is pushing 18 pounds (she was 18 lbs 4 oz at the pediatrician's office today with her clothes on), and Holland is pushing 20 pounds (20 lbs 4 oz with clothes on). SMALL.

I justify it every which way I can... John and I are both small. They don't look unhealthy. They're happy. You can't see their ribs (although you can feel them when you pick them up). Whatever. They're still small, and I still want them to grow. People with babies who eat like regular kids have no idea what it is like. They totally take their kids eating for granted. It is so stressful when your kid will not eat. Actually "stressful" doesn't even begin to describe it. It gets so bad at times that I end up in tears. I feel like a failure as a mother. I cannot even satisfy my kids' basic needs. It's really hard to describe the worry/fear/constant ache in the pit of my stomach that comes with them not eating and growing well.

I read that "normal" children between the ages of 1 and 3 should be taking in about 1300 calories a day. Okay, I know that they are not "normal." So, children between 5 and 12 months should get around 850 calories a day. Holland and Eden get about 400 calories a day from formula. That means they should be getting AT LEAST 450 calories a day from food. And they are 2, so they really should probably be getting 600 calories a day from food! That's 200 calories per meal. It doesn't take a mathematician to figure out that 2 bites of yogurt, 3 bites of a bagel with cream cheese, and maybe 3 sips of juice does not equal 200 calories. And that's on a GOOD day!!!

It's actually getting harder and harder to get them to eat. I know they don't have oral aversions. I know that Holland does not have reflux (Eden has some mild reflux). What else could it be??? It has to be preemie related because there are so many out there with similar issues. I don't think that normal toddler pickiness and attitude fully explains it. Although there is a lot of that going on too. Holland will seriously take a bite out of her mouth and throw it on the floor. At the restaurant yesterday I don't think she swallowed a single bite of food. She threw ALL of it on the floor. Well, except for MAYBE one pickle slice. She might have eaten that. How many calories are in a pickle slice?