Monday, June 30, 2008
It's your birthday bah, bah, bah, bah bah,
Happy Birthday, bah, bah, bah, bah, bah,
bah, bah, bah....
(Lyrics by Justin Roberts)
It's my birthday today. It's hot, I'm tired, my kids are cranky.
Sunday, June 29, 2008
Saturday, June 28, 2008
We have been going to the wading pools in Seattle. They just 'opened' for the season and there is a vast 41 of them, or something. Nearly every neighborhood has a playground and a wading pool. Last year we couldn't take part in it because Madeleine had on her enormous spica, or body cast. So this year I was bound and determined to check it out and enjoy it. We have found a couple, okay, one, that we really like. Some of the others are too full of nannies (usually on their phones, texting and not watching their charge) or have too many big kids with squirt guns and splashing hands. I'm still hunting so I will keep you posted.
Wading pools, like shorts and skirts season, brings out a whole new challenge for those of us with children with prosthesis, and probably for adults with prosthesis too. We get asked a lot of questions. We get stared at, sometimes very rudely. We have to think about getting wet, changing socks, not leaving it in the sun, cleaning it well and the list goes on.
As a new parent of a child with a prosthesis in the summer I am learning this. I am learning how I want people to ask, to stare, to talk to me. I'm learning that saying something is better than saying nothing and staring rudely. In the last two weeks I've encountered several remarks about Madeleine's leggie. Here are some:
*What happened? Why? I'm glad I was born with two feet.
*At least she doesn't get both her knees skinned when she falls down.
*Is her leg broken? Why does she wear that?
*Why doesn't she have a foot?
*It looks like that little boy is missing one of her feet.
*Why did that happen mommy? (Mom's answer: Everyone is different but she can do everything you can, just watch her!..... way to go, red head capital hill mom! great answer)
*Your children are beautiful.
So, the lesson? Most are kind and just curious. I can appreciate that. I can also appreciate a child not knowing what to say or saying the 'wrong thing', even though it still stings. What I cannot appreciate is parents not being open or recognizing that they have a teaching moment on their hands. This is the case when the child comes up to me and no parent is in sight. WTF?
My friend Jenna has a truly incredible little boy. Not because he is an above knee amputee and can do the most extreme stuff I've ever seen a two year old do (roller skate, skate board, jump, climb, ride a scooter, climb Mt. Everest, okay I was joking on that one) but because he is a happy, mischievous, clever kid who has an insanely great personality, fabulous hair and tells contagious jokes that my twins repeat over and over.
The thing is you would never know all of that until you get past the fact that this kid is wearing an artificial leg and doing better than some other toddlers. If he weren't wearing one you'd see the rest of his talents. Madeleine is the same. This we live with and learn from.
Happy 1st Anniversary Leggie, we love you!
Saturday, June 21, 2008
The emotions I'm feeling right now are hard to describe. I cannot begin to tell you how lucky I feel to have my children. How incredibly blessed I am to be able to mother them. How I still cannot believe that I got pregnant. That my body made these two beautiful beings- grew them to perfection. That they lived inside of me swimming, growing, thinking, waiting. That they came out of me full, perfect and beautiful. That they not only lived but they thrived, they were born 6 full weeks early. I must be the luckiest woman alive.
For their first birthday there was a cloud that hung over our family. We had a small party a week before their actual birthday but were very careful who could come as we couldn't have Madeleine get the slightest bit of sickness. She was to have surgery a week after her birthday. I look back to the pictures of my babies at their first birthday and all I can see, besides the sheer beauty of the twins, is Madeleine's 'unfixed' leg. During their party last year Madeleine had her foot. She had a bowed tibia with a pronounced dimple on the front of her shin. This is where the apex of the bone was. Dr. Mosca fixed it when did the osteotomy and straightening of her tibia. He took out some of the tissue in an effort to make the skin smoother. This is the scar Madeleine points to most. She simply says, 'scar, doctor fixed it'.
At the time I was so pained to think of her surgery, to think of my baby girl with an amputated foot. It was so hard. Click here to read how hard that was. Rereading those entries makes me cry. The emotion was so very raw, the pain so tangible. The future was impossible to predict, impossible to know, I was unable to take comfort in a brand new day.
Now when I look back to that time it is like seeing an old friend grieve and wanting to hold them. I want to hold Niki and tell her that it would all work out. That the pain and uncertainty will go away. That she will not not regret her decision.
At the time I thought Madeleine's foot was perfectly fine. It had all five toes. It wasn't that small even though it was a tiny bit shorter than her other foot. Her leg seemed very normal to me. Sometimes I would almost convince myself that her leg was really okay, that she could keep her foot and it would all work.
Now I know that that was untrue. I do not regret the amputation. In fact, I am relieved by it. Now that I see her fibular hemimelia leg the way it was I can see how deformed it was. How nonfunctional it really was. It was fine for a baby who was crawling, sitting up, pulling to stand even. But she is better off with her man-made (Greg-made) leg.
Happy Birthday Max and Madeleine.
Peace and Love.
Friday, June 20, 2008
Thursday, June 19, 2008
During my stay in the hospital I seriously felt like a prisoner. Nurses would come and go and I would look at their name tags and notice that they 'only' had a Bachelors of Nursing and I'd think to myself that I was more educated then them and that I once had a regular job like them. I wasn't always the woman who wouldn't get out of bed and had messy hair that needed to be colored again desperately. I once was a professional. Now I was a bystander to my day. I would know that I was to have an ultrasound or a visit from the doctor, the lactation consultant, the NICU doctor, the nutritionist or some other professional but I had no idea when. I knew that I could have one hour out of bed in a wheel chair but had no idea when that would be. It was impossible to plan. And although it seems like I had a lot of time on my hands there were so many 'things' I needed to do that the days went by fairly fast.
A day in the life of a patient in the antepartum unit:
7 am: woken up to get meds, see the shift change of nurses and vitals taken
7:30: breakfast (strawberries, bagel with cream cheese, scrambled eggs, mocha)
8 am: Doctor's rounds. A quick visit with the OB and Medical Student
9 am: Monitoring. This happened three times a day for 30-90 minutes depending on how cooperative the babies were. The nurses would come in and strap three straps on my enormous belly. One would monitor baby A's heart rate (Max). One would monitor Baby B's heart rate (Madeleine). And the other would monitor my contractions. They had to get a solid 20-30 minutes of heartrate and sometimes it was very hard to find the baby and then keep it under the monitor so that the heartbeat would be picked up consistently. Some nurses had a terrible time finding the babes and would sigh and eye roll as if it were my fault I wasn't they weren't behaving.
11 am: more meds and vitals
Noon: Ultrasound. In this scenario the patient is picked up by a transporter and put on a gurney. I am wheeled down to the fourth floor where I wait in a room with other patients, some of them very sick and hacking up lungs, on tubes and half way conscious. After I've waited in the room for a while I am wheeled into the ultrasound room where I wait a little more until the tech comes in and looks at my paper work. She does the ultrasound like she is putting parts on a conveyor belt. I ask her for simple pictures of the babies and she sighs and says if she can manage it she will. I ask her to look at Madeleine's leg and she says that that is not ordered and she will only do it if it is convenient. One ultrasound tech asked me if I did IVF to get the twins, like it is her business. Another one asks me about Madeleine's leg, as if it is her business. They are disrespectful of my time, my body and my feelings. They do not drape me well and expose my huge stomach, my vagina and anything else. They don't clean me well and leave ultrasound gel on me which is why I shower after my ultrasounds. Sometimes this process will take an hour sometime two and sometimes two and a half. Sometimes the radiologist will come and talk to me but sometimes they don't but rather just send the report. If I get a good transporter he will show me the print out report or my chart. Once I was reprimanded for looking at my chart without a medical personnel with me. WTF?
1 pm: shower
1:30 lunch. Salad, sandwich, diet coke and a cookie
2 or 3 pm: outing to Starbucks in a wheel chair with a friend
3 pm: meds. monitoring
5 pm: Michael visits
6 pm: dinner
7 or 8 pm: monitoring. meds
8 or 9 pm: bath tub soak. This is the best part. Swedish Hospital has a HUGE soaking tub, big enough for my enormous belly. It was heaven and I still miss my baths there.
10 or 11 pm: bed.
Two years ago I was worried about the unknow. Had I known then that everything would turn out just fine. Had I believed then that life would unravel the way it was suppose to. Had I realized that my children would be beautiful people full of grace, wisdom, humor and love. Had I known I would have relaxed. I would have trusted. I would have...
Tuesday, June 17, 2008
For the record, I loved the chub. And, when I find a chubby part (her bum, her arms, thighs, cheeks) I rejoice in it. I eat it, bite it, smooch it, squeeze it, and comment on it.
When we first took Madeleine to see Dr. Mosca and Greg they all commented on how chubby she was. Dr. M said that we wouldn't do the surgery younger than a year and that it would be hard to cast her etc. Greg consulted with his colleague, Peter, and they talked about how they were going to fit a chubby kid with a prosthesis. The OT got in on it and chatted. Holy. What? I walked out of the appointment feeling bad. Was she F-A-T? Should I worry? And then the nice nurse, Sue, said that they see a lot of sick babies so when they see one so robust and healthy they notice it. Thanks Sue!
Madeleine's first leggie came up very far. It was chubby like her and thick. It came above her knee and seemed to take up her entire leg.
She has grown so much now. My chunker is slim and getting tall. Her leg is constantly adjusted. Greg just added another centimeter. The bottom of the leggie now has a skinny ankle. (pictures coming soon). She has slimmed down so much that she is now in a 5-ply sock. We started with a 1-ply. She is literally growing right out of her leg!
Sunday, June 15, 2008
Now, let's turn our attention to the main Father that I know, my husband. I never knew what kind of Dad Michael would be. Honestly, I knew him as a friend, as a boyfriend and then as a husband but I never really saw him as a 'father'. Can I just tell you that Michael is really one of the best fathers I know? He has exceeded my expectations with our children and I'm really quite proud of him.
Michael is a great dad because he:
- Likes to play with the twins, this means he gets down on their level and pushes cars around, makes noises, digs in the dirt, makes up new games for them.
- invented the 'tent' game which Max and Madeleine love. They have played tent since they were teeny tiny babies.
- listens to his kids. He responds enthusiastically when they tell him something and when they are crying and you cannot understand one word he listens patiently.
- would rather be with his kids than anyone else.
- wants them to dress well and look cool! Often times Max and he are dressed exactly the same.
- is proud of all their accomplishments, even the very small ones (clicking their own carseat, pouring water, venturing a little further in the pool...
- takes pride in adventurous eating, Maxy likes sushi and Madeleine is NOT a vegetarian and seems to rejoice in a good burger or pork chop just like her daddy.
- loves them (and me) unconditionally and shows them daily how much.
I'm resurrecting old pictures here. I love looking at the babies when they were, well, babies. Indulge me.
Thursday, June 12, 2008
When I think back to those times the only thing that sticks out for me is eating together (blush).
We would make different lunches and then share them at school. He would make an onion bagel with cream cheese. This was when bagels weren't frowned upon for their carbbiness. I can't even remember what I would bring (cut up veggies?) and then we would sit and chat and eat.
Sometimes we would go to our favorite watering hole for drinks. Delux.
The problem with knowing your husband for a long time and being friends with him first is that he remembers my exboyfriend and won't let me forget it! Michael, no mention of D here, please.
Tuesday, June 10, 2008
Of course there was a lot left out. Lora and I had at least two hours of conversation and she had to naturally cut it down. I'm glad she mentioned fibular hemimelia and was able to capture our 'normalcy' to some extent. However, there are so so many things that were missing. Not that I'm blaming Lora at all. (seriously).
In the posts to come I will hopefully highlight the missing components that Lora didn't have the time and space to write about.
Thanks Lora, I loved meeting you and chatting about parenting in Seattle. I think the pictures you took are priceless.
Niki and Family
Sunday, June 8, 2008
On Saturday evening after Madeleine's hair appointment and a light dinner we took the babes to recreational swim. We got there early and had to wait in line until the pool opened for open swim. While in line we met this woman (I never caught her name) who wore two prosthetic legs. They were pipe legs and had brightly covered 'skins' over them.
At first I didn't notice them and then once I did I couldn't help but comment. I tentatively approached this woman and said, "excuse me, I hope you don't mind me commenting but my daughter wears a prosthesis and we don't know many people who wear one would you mind if I showed her your legs?" Naturally the woman was very gracious and we had a wonderful conversation about prosthetics, Madeleine, comments, the pool and everything else. The woman was there with her daughter who was about seven and was clearly very attached and proud of her mum.
Madeleine noticed the womans legs and showed her hers and then went about her business on how well she jumps (yes, she can actually catch a little air!).
In the pool the woman and I chatted a bit more and I played with her lovely daughter too. Upon leaving the woman told me that she liked going to the pool with her daughter as there are not many activities that they can share. I asked if she had a hard time getting around on her artificial legs and she said no, but she did have cancer and was very very sick.
Oh, my heart broke.
Before she left she said, "thank you for sharing Madeleine's story with me. Your daughter is my hero. She is so full of life and energy. I have been watching her and she is a gift to this world."
***Insert tears here***
Saturday, June 7, 2008
She woke up at 11pm. Michael and I were just getting to sleep and we waited for a bit to see if she could get back to sleep on her own. Her cries got louder and more urgent. Michael went in to soothe her but she was very upset. He brought her into our bed and it took her at least 15 minutes to settle down. I mean, she cried, howled, tossed and turned. She talked in an urgent voice. I seriously think she was still sleeping. Michael and I talked to her, we calmed her, we rubbed her back. I was two seconds away from picking her up and walking her outside to wake her up and settle her back down. It was all a little concerning.
I'm not sure if our 'behavioral changes' are going to make a difference.
Okay, enough of the bad-
Auntie Martha, this is for you....
Thursday, June 5, 2008
Two years later I have beautiful, healthy, hilarious kids. I'm so lucky. Don't think I don't know that. I think about it everyday!
Brother and Sister, full of mischief.
Maxy's happy face.
Shoe less in the grass!
Notice the crocs
Like Father Like Son.
Monday, June 2, 2008
So, we had to wait a long time, like 30-45 minutes once we got into the exam room. That was okay though since the doctor spent a lot of time with us. I know that during that time she was reviewing Madeleine's file as she had a lot of question.
First, Dr. Kifle is a woman! And a very good doctor, at that. She came into the room with a lot of great questions about Madeleine's surgery, our day to day life, our nighttime routine and such.
Did I mention that the paperwork we did ahead of time was extensive? They asked about what Madeleine ate (at dinner time), what our bed time routine was, what activities she did and what the sleep problems were.
In a nutshell the doctor told me that we were doing a lot of things right but we were doing some things that are not recommended. With that she said that she didn't blame me for doing some of the not so good things as I was a concerned parent and it was my job to do these things. She never specifically said what things I didn't do right but I can guess. She liked our bedtime routine and the time that the kids go to bed. She didn't seem concerned that Max shared a room.
Here's the routine:
- About a half hour to forty-five minutes before the bed the kids will sometimes nurse (Yes.... we are still doing that...)
- We will read books for 15-20 minutes and sometimes sing songs
- We will discuss the day we had or what the plans for tomorrow are
- The kids brush teeth and have a drink of water
- tuck in, nigh-night, kiss kiss
- If they cry, ask for something etc., we go in and comfort and then put them back down
- They have always been put to bed awake
So that is what we are doing right, thank you very much.
What we are not doing so right is that when the kids, namely Madeleine, wake up we don't try to soothe them back to sleep in there crib or try to tell them to go back to sleep. Instead, we scoop them up and bring them (Madeleine) to bed with us because, frankly, Michael and I are too freaking tired to do anything else.
The doctor said that at one year of age when kids are learning to soothe themselves back to sleep we responded to every peep that Madeleine made and that 'trained' her into relying on us to get her back to sleep to some extent. Okay, okay, I know we did that but for heaven's sake my daughter just had MAJOR surgery at that time and was in a God-forsaken body cast that went up to her armpits, so no shit I'm going to respond to her. I was worried that she was in pain (phantom or real), that she had an itch, that she needed to be turned, that she was hungry (remember, she wasn't eating much then). Of course, Dr. Kifle being the Sleep Goddess that she is said that 'of course I did that, that was the right thing to do...' but then she diagnosed Madeleine with Behavioral Insomnia of Childhood.
She recommended that we make some behavioral changes this summer and see if that works out okay and if it doesn't she wants to see us in September for a sleep study, where you spend the night and they observe her throughout the night and monitor breathing and sleep activity.
The behavioral changes are to try to get her to stay in her own bed and help her to try to get herself back to sleep. Along with continuing to follow a strong bedtime routine, not eating before bed and not nursing in the bedroom prior to sleep. The doctor told Madeleine that she needed to stay in her crib throughout the night. We have been using this for the past few days saying, "remember, the doctor said you have to stay in your nigh-night bed allllll night long." I'll keep ya'll posted....
The other part of this which isn't quite as straight forward is that Dr. Kifle has some concerns that Madeleine might be experiencing some sleep apnea. Here's why...
- Her most restless times of the night are between 2-5 when an individual experiences the most REM or lightest sleep
- She tosses and turns, talks in her sleep, cries, thrashes around but only during this time of the night
- She is prone to having apnea because she was premature and on a c-pap machine for 12 hours to help her lungs work as there wasn't enough surfactant in them
- She has RSV when she was two years old
- It might run in the family
For these reasons we will most likely do the sleep study in September.
Last night Madeleine woke up at 3:30 am. Not bad. That is a longer night than usual. I went into her room as she was screaming and crying and calling for me, as if she had had a nightmare. I went in and rubbed her back and told her that the doctor said she had to stay in her bed. She asked for "rocky-roo" which means that I will pick her up and rock her in my arms or rock her in the rocking chair. She fell back asleep and I put her back in her crib until morning. Success.
Here's the thing: I want to respond to my children's cries. I want them to know that if they wake up in the middle of the night for whatever reason their mommy and their daddy will be there. They will be welcome in our bed. We will help them get through rough nights. I recognize that there are boundaries but I will always be open to listening to their needs.