Saturday, June 30, 2007

That baby is missing her foot

This topic deserves a lot more than I can write tonight.

In the hospital nurses and even pain management doctors asked me what happened to Madeleine. Other parents that we shared rooms with asked me, "my heart breaks for her" they said. Most think that she had amniotic banding, a condition I don't know enough about to explain.

When leaving the hospital I noticed people staring. Or, at least I thought they were staring. We have entered into a new realm. Before people knew there was something not quite right with Madeleine's left leg. Now they know there is something missing.

My Birthday Present? My baby is home!

It is my 35th birthday today. Never have I had a birthday like this. It is the most 'unbirthday' ever. But I don't mind. My daughter is home and she is feeling better. Phew- it was a steep hill to get here. She is still fussy and has a hard time getting comfortable. I would too if I had a giant cast on my little one year old body.

We got to have a couple of walks today around the hospital. We put her in a wagon and took her to see the "animals" at the hospital (pictures to come). She also got coffee with us and later some lunch. She liked being out and about and is slowly becoming her real self. She is clingy though and I have to hold her often. The problem is that Maxy has missed me and is very clingy too. He wants to jump on me and Madeleine and is not aware that he can hurt her. I feel bad. He is refusing the bottle but wanting to nurse constantly in my presence. It is just hard to have two babies when one of them is in this state.

I have to go now and make up some dinner while my precious sleeps. Thank you again for the flowers, the prayers, the positive thoughts and even the tears. Wait till you see my darling and her braveness.

Friday, June 29, 2007

Friday night

I'm home for a bit. Michael is at the hospital with sweet Madeleine and Max, my mom and I came home for a bit (and a glass of wine). My mom is pushing Maxy up and down the hallway in his new schoolbus car. He sure loves his Grandmother! She has taught him how to point and retreive snacks from various locations. We think that maybe she thinks he is her dog! No just kidding. He also said "fish" today when he was watching the fish tank at Children's Hospital- another one of grandma's accomplishments.

Madeleine had a little bit of a better day. The morning was a little rough as we were trying to figure out the right dosage of Oxycodone to give her. After we got her nice and comfy she took down three ounces of sugar water and then another three and a half of breast milk. When I put her on the breast she bites me but today I could give her a bottle of expressed breastmilk. I'm thinking it might be hard for her to have the energy to suck the milk out of the breast and the nipple is easier. She threw up a bit too (before the feeding). I washed her and changed her hospital gown. She got her epidural taken out today and hopefully soon we can remove the catheter- one less tube.

Oh, I forgot! She pooped today too, which is huge accomplishment in the hospital! We cleaned her up and I realized how challenging the cast is going to be!

Hopefully she will have a better night. I think she is becoming more and more herself as time goes on. She even did Pat-A-Cake in her drowsy state!

Thank you again to all the well wishers, the senders of flowers and balloons, the prayers and the tears. We love you and are so grateful for our community.

I'll try to post pictures of our beautiful baby girl soon.

Love you all,
Niki, Michael, Max and Madeleine

Day 2- Post Surgery

I only have a minute. This is hard. She is in an awful lot of pain and we are keeping her pretty medicated. We are trying to get the epidural out this morning and transition her to oral pain meds. It is so sad to see her writhe in pain and get irritated. she is having muscle spasms and she jerks involuntarily and then feels more pain. She is sleeping a lot which is good. It breaks my heart to see her like this. The hospital staff feels like she is doing as can be expected or better but she isn't their baby.

She had a pretty difficult night last night. Her IV infiltrated her ankle and caused huge swelling. She had quite a bit of pain from it. At 2 am they moved it to her wrist and that seems to be helping. She is not interested in food right now and would prefer to sleep. I'm much better with the sleeping thing than having her in pain.

She also had a really high heart rate last night and this morning indicating pain and dehydration. They have given her more fluids through her IV and that is helping a bit. She is also on the pain meds and ativan to ease the muscle spasms.

Please keep prayers going for a speedy recovery. I cannot wait until this is over.

Thursday, June 28, 2007

On the mend

Madeleine came out of surgery at 12:30 or so. She was wheeled into her room at 1:30. She looked at us and I got to hold her but she was pretty out of it. I just remember how I felt coming out of anesthesia after my C-Section; I imagine she feels a little like that only drowsier.

She has an epidural and doesn't seem to feel much pain. The nurse, however, said that by the way she keeps her limbs stiff that she is experiencing some discomfort. Her throat is very sore from being intibated and she sounds hoarse, like she has to have a good cough.

She has been sleeping much of the day. Maxy came by to say hi but even he seemed to know that Madeleine wasn't feeling well. She woke up a bit this afternoon for three ounces of glucose water. Tonight I was able to get her to nurse for a bit too. Food seems to be the last thing on her mind but she is sure attached to her binky.

I thought I'd be prepared for the wires but I wasn't. The epidural freaks me out. She has an IV in her ankle and all the leads and wires one would expect in the hospital. She also has a catheter right now so I don't need to worry about changing diapers around that cast.

Speaking of casts. Holy #### is there a lot of cast! It goes clear up to her arm pits and all the way down her left leg. It is heavy and hard. She looks like a tiny little thing in this giant life raft. The cast that covers her leg is huge. Dr. Mosca said that he used a lot of padding but I wasn't expecting it to be pronounced. You can't even tell the shape of her leg. It just looks like a big blob.

Emotionally it is very hard to see her so drugged. I know it is for the best because to think that she would have pain is heart wrenching. She just isn't my little girl though. Hopefully tomorrow she will be more like herself. Tomorrow morning they are going to try to turn off the epidural and give her oral oxycodone to see how she tolerates it. The nurse mentioned that she was dealing a lot better than babies usually do. When she tried to give her tylenol Madeleine resisted. Which is strange in itself since she normally loves her "tylenol candy".

Thank you for all your well wishes and prayers. I think they are helping. Thanks also to the Lee Smart Ladies for the wonderful gift. Madeleine was mesmorized by the balloons, certainly I nice diversion (Maxy was pretty into them too!) and the teddy bear is adorable.

Back to my baby's bedside.


Max slept in his crib all night last night. A first. He woke at 1:00 am to nurse and then slept until 6:15 this morning.

He is with my mom. I'm sure they are having a blast. He has taken very well to Grandma's attention and enjoys all her games. She has taught him how to point and now that is all he does. She walks with him an endless amount of times up and down the hallway. She plays with the noisey train set Auntie Kim gave him for his birthday. Thanks Auntie Kim!

Yesterday they played with puzzles forever.

She told me this morning that she held him on her hip while she did the dishes. If she didn't hold him he crawled all over the house looking for us. Looking for Madeleine.

Soon, they will go for a walk. He will have lunch and a bottle. I froze loads of breast milk for him.

We are a family and we should not be apart for very long. Hopefully he can come up to the hospital later tonight.

just starting

Michael just called after our page. They are just starting. I guess there was some delay with the doctor (maybe another patient's needs?) but they are beginning surgery right now. I'm trying to not think about them cutting into my daughter.

In the pre-op room we met Deanne, the nurse. She put labels on Madeleine's binky and her pink blanket. Madeleine changed into a hospital gown and looked smashing, if I do say so myself.

Then Dr. Mosca came in and put his signature on three places on Madeleine's leg. Her knee. Her tibia. Her ankle. This is where he will make the cuts. He answered questions and reassured us. He was sweet with Madeleine and we feel like we are all in good hands.

We also met Daniel, the anesthesiologist. An attractive British Bloke who has very kind to us and warm with Madeleine. He explained all the pain management stuff and how it will all work. He will give her gas that will put her to sleep. He will then put in her IV. He said that since she is so chubby she is a phlebotomist's nigthmare. Hence the rotton experience we had with the blood draw. He will also insert her epidural. He and/or his resident, Sarah, will stay with her the entire time.

After meeting with us Daniel did a stranger test with her and took her from my arms. He walked her around for a bit chatting with her. This was to see if she would go with him. She did, my big girl. When it was actually time to take her though, she cried. She reached for me and cried and my heart broke. I kissed her and told her I loved her.

Her whole life we have anticipated this. It still hurts.

surgery has started

Madeleine is in surgery right now. Children's hospital has this wonderful family resource room that has computers, coffee, books, comfy chairs and the like. I feel so fortunate to live in Seattle and have Madeleine get her care here.

She did surprisingly well last night with the "no nursing" rule. In fact, she did so well I'm thinking that she doesn't actually need to nurse in the middle of the night. Imagine that! She woke up briefly at 10:45 for a quick nursing and then fell back asleep. She woke up again at 3:00 am and had a sip of water and then went back to sleep. She was a bit frustrated with me this morning for not nursing her but on the whole I'd say she was a very brave girl.

We arrived this morning at 7:15 and she was brought back to the pre-op center with us. They went over consent and checked her out getting her weight.

more later- paged....

Wednesday, June 27, 2007

surgery tomorrow

Madeleine's surgery is scheduled for 8:30 tomorrow am. We need to be at Children's hospital at 7:15. The surgery will take 4 hours. The recovery will take two. My mother will stay with my sweet Maxy all day- he will be in good hands.

Tonight we made a foot print of Madeleine's little left foot. It didn't turn out well but we tried. I washed her in special surgical soap. She cried. I nursed her to sleep and cried with her in my arms. I hate that she has to endure this. She will be experiencing more surgery than I ever have- more than most people have.

She is not to have anything to eat (not even breastmilk) after 11:30 pm. She can have clear liquids until 3:30 am. This is going to be hard tonight. She likes her midnight snack of breast milk.

I'm sad and scared for my baby.

Monday, June 25, 2007

Monday, June 25th

Three days before the surgery.

Madeleine is obliviously fine. I think she knows what will happen on Thursday but doesn't quite comprehend. She seems a little clingy these days and is a tad weary of strangers. Not uncommon for the average one year old baby, I guess. She is starting to lose some of her baby chub and you can really palpitate her tibia now. It is interesting how it has grown and I am reminded of what she was like as a skinny preemie.

My mom comes tomorrow and we will have pictures taken of the babes and she will help me do hand and feet prints. Madeleine will have a bath everyday so taht she can enjoy it while she can. She will not be able to bathe witht he spica cast on. Consequently, neither will Max. I told Michael that Maxy will have to get showers for the next six weeks- it won't be fair if he has fun in the tub and Madeleine is unable to join him.

The day of Madeleine's surgery she will also have blood taken for her allergy test. I'm glad we are getting that done now.

Friday, June 22, 2007

June 22, 2006

Madeleine tanning
Madeleine on the CPAP
Gooey Max
On June 22nd Max and Madeleine were born.

Thursday, June 21, 2007

Before I knew them

Max on the left and Madeleine on the right.

By popular demand

Okay, Jenna, this is for you. I wouldn't normally post this on the internet but because of so many requests...

This is about two days before I delivered.

This time last year

This time last year I was going to bed in the hospital. I had most likely taken a bath in the giant swedish tub (the only good thing about the hospital), had been monitored several times for several hours by a nurse, had been pushed to take Ativan, "just to help me sleep", and was so uncomfortable I was pleading the doctor to let me go home.

It was the morning of June 21st when I told Dr. Kimelman that I couldn't take it any longer. I told her I was depressed and unhappy. She told me to hang on another week. "Let's just try to get to 35 weeks," she reasoned.

I think I knew that that night was the night. I called Megan and asked if she could feel her cervix dialating? I sincerely felt like the babies were 'knocking' to get out- a funny thought now!

This time last year I was a woman without children. I could sleep when I wanted to. I could eat when I wanted to. I could run to the grocery store and be in and out in a few minutes! I didn't have little bodies following me to the toilet, the shower, the refridgerator. I didn't have cries waking me up at night and sucking on me until I couldn't take it any longer. My house wasn't covered with toys. I didn't do 10 loads of laundry a week. I didn't check the ingrediants in every food. There wasn't hairbands holding my cupboards shut.

This time last year I didn't know how happy I could be. Because of my babies I am exhausted. I am broke. I am in debt. I am the happiest I have ever been.

This time last year I went to bed and woke to a splash! My life was changed forever!

Tuesday, June 19, 2007

Madeleine's Enemy #1- Eggs

Apparently Madeleine is allergic to eggs. I called the doctor last Thursday and explained that I was worried about the babies having eggs for the first time in their birthday cake. I was concerned they would have an allergic reaction. I think the doctor thought I was a bit crazy (this was confirmed later). "Don't worry," she said, "egg allergies are really rare and there is such little egg in cake it probably isn't a big deal." She told me to give the babes scrambled eggs at lunch, just to "ease my mind".
Lunch time....
I scrambled an egg. I didn't add anything to it- just the egg. I split it between Max and Madeleine; half on his tray, half on hers. They loved it. Immediately Madeleine got a red rash around her mouth. She cried and rubbed her eyes and her mouth. Instantly blue-ish purple-ish hives broke out all over her face, including her eye lids. Her eyeballs became red and irritated looking. She cried. I called the pediatrician (I hate to say I told you so but...) and gave her 3/4 teaspoon of Benadryl. She felt better. We will have a blood test done soon to determine how bad the allergy is and if there are any others. Until then no eggs for Madeleine and no eggs for me. If you know me well you will know that that means I'm off cookies.
Although the reaction cleared up quick I was still able to snap a few shots!

Monday, June 18, 2007


The babies love their new Dora the Explorer Car! They have figured out how to meet both of their needs. Maxy has a need to push things around. He loves it! Madeleine isn't so good at walking yet so she is happy to be pushed. Oh, but she LOVES to push buttons so the whole time Max pushes his sister she beeps the horn!

Sunday, June 17, 2007

Max Walked!

After the party (June 16th) Maxy took three steps toward me. Michael was behind him. My friend Amber (who is very pregnant right now) was sitting next to me on the sofa. And Max walked. We stood, amazed, mouths open. Amber cried- pregnancy hormones!

I'm so proud of my little boy.

My babies are growing up. sigh.

More Birthday Party!

Birthday Party continued!

Birthday Party

For me!
My sister's cupcake looks better
I'm suppose to wear this?
Madeleine, you have some cake on your ear.
Mmmmm, chocolate!

We had a small gathering at the house to celebrate the kids' first birthday. I tried to keep it small since I didn't want to expose Madeleine to too many germs. Also, because of that reason many of our friends couldn't come. Still, we had a wonderful time!

The babies did not take a nap in the morning- too much excitement! So, by the end of the party (around 2- ish) they both crashed and slept a few hours. Despite the lack of a nap they were in good spirits! I was very proud of them.

I'll let the pictures speak for themselves!

Pictures thoughtfully taken by Brad West in exchange for some watermelon and cake!

Wednesday, June 13, 2007

Madeleine's cast part 3

Although she was a complete mess when we were all done the cast turned out beautifully. Madeleine was so full of alginate (as was I!) that she and I went downstairs and took a shower right there in the office. Yes, there is an actual shower! Special thanks to Carla who held Madeleine while I stripped and then proceded to help me wash her! ;)

Stay tuned for the final pictures of the finished cast!

Madeleine's Cast Part 2

We thought and we thought. We decided that we should put her in a position where she would stay and be happy. Madeleine was happy sitting on the table, eating goldfish, drinking juice (it is a special treat). Let's try to put her in a container and pour the alginate around her. We found the container, we mixed the alginate (twice, the first time it hardened too fast) and we poured it in.
Madeleine was not happy!

Making a replica of Madeleine's leg

I have been searching for ways to replicate Madeleine's leg before the foot goes away. I want to be able to show her what it looked like and explain to her why we chose to amputate. I wanted a way to preserve that precious foot since I found out the doctor WON'T let me keep it, despite me offering to keep it at Grandma's house!

I knew that I could always do a foot print but that didn't seem to be enough. Of course it is shown in pictures but that also wasn't enough for me.

So, after discussing it with my sweet artist friend, Krista and searching around a bit on the internet. I finally spoke with the fabulous Anne Baumgartner, the art teacher at Coe (the elementary school where I work). I thought if someone would know how to pull this off with a one year old it would be Anne. She did her own research and got the wonderful Kurt Keifer in on it. He happens to be an artist, a parent at Coe, the PTA president and a damn nice guy. Kurt suggested Alginate. Who Knew!? It is made from kelp or some seaweed and it is what the dentist uses to make an imprint of your teeth, so it is non toxic.

We decided on the date, Wednesday June 13th, 3:00. I arranged for a playdate for Maxy (my super duper friend Megan and her adorable little girls, Charlotte and Annabelle). And Madeleine and I headed to Coe! Kurt was there with a nifty make-shift container for her leg. We tried to put her little leg into a box and pour the alginate into the box, wait for it to harder and remove her leg only to replace it with plaster.

Madeleine, was not so keen on the idea. It took Anne, Cindy (my friend and colleague) and myself to feed her goldfish and make silly noises and faces just to keep her still. Unfortunately the alginate didn't take and the box didn't work.

We were back at square one with a little more information. The alginate worked better in warm water, the box needed to be bigger, Madeleine had a hard time sitting still. How can we make this better?

Experimental Education Unit

Today Max and Madeleine visited their future preschool, The Experimental Education Unit at the University of Washington. They had so much fun! the other kids there were older than them but the twins didn't seem to be intimidated. They loved all the toys and did really well in circle time, considering it was their first one! They even had snack with the other children and ate out of bowls and sat in big kid chairs. I wish I had had my camera.

Madeleine did the hand motions with the teacher during circle time and Maxy was so rivited by the song she was singing- he just stared. For most of play time Max stayed in the play kitchen area, while Madeleine enjoyed playing with the pretend guitar and musical instruments.

The teachers there are so positive and supportive. You never hear the word "no", but rather "let's find something else to play with" or "be careful of our other friends". I'm so happy this will be there environment soon. They will go two days a week for an hour and a half each day.

Monday, June 11, 2007


Thank you to my visitors. I appreciate your kind words, positive thoughts and prayers. I know that everyone is pulling for Madeleine and it helps. I wish all that visit this blog could see my beautiful daughter. She is amazing! (Max isn't chopped liver either ;)

Thank you.

Sunday, June 10, 2007

Sleep? Is it finally coming???

Max slept from 8:00 pm until 3:40 am last night! I was so proud of him. I told him so :)

He had a harder time settling down again for sleep but after a quick nursing he was out again.

Madeleine, on the other hand, is having horrible nights. Perhaps it is because she still only has two teeth and the others are threatening to come in! Perhaps it is her slight cold that keeps her up. Maybe she feels my apprehension and that is the reason.

Whatever it is for these two to sleep or not to sleep is okay. I think that developmentally kids learn to sleep on their own. I won't "Cry It Out" and I am not planning on "sleep training". They are doing just fine on their own!

Friday, June 8, 2007

Sooooo Big!

How big is Madeleine? Soo Big! How big is Maxy? Soooo big!

reserving the right

I reserve the right to be grumpy.
I reserve the right to be a bad friend right now.
It is okay for me to feel shafted.
It is okay for me to feel like this is unfair.
I'm angry
I'm hurting

From Madeleine

Madeleine wanted to type. I think she is very talented.

LMLNB ///// d;.lknkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkk //////////////////////////////////////zz/vc // h ////////""////mmmmmmmmmmmmC..F mmmmmmmmmmmmmmmX M.Z/mmmmmm /mDXL


Wednesday, June 6, 2007

and take them... at the park

Daisies are good.
Water is good too.
So are plastic toys.