photo taken by Angela Speiker

Wednesday, April 21, 2010

March for Babies is in 10 days

My first chance to touch my son, 3 hours after his birth

Sadly, this is a big part of what I remember about Zachary's first days of life
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Finally geetting to hold my baby boy, 36 hours after he was born. They let me hold him for about 10 minutes. I couldn't move, as he was on the vent, and it is taped to my shoulder. They threatened that if I did it could seriuosly injure him. Not a very comforting moment, but so sweet all at the same time.

A few days old in daddy's arms. His tiny hand is gripping Skip's pinky finger.

Our March for Babies walk is in 10 days. We are trying to earn money for March of Dimes to help fund research that they do to help babies like Zachary. The March of Dimes helped stop polio with their research. March of Dimes discovered the imporatance of Surfactant, a medicine that helped save Zach's life. March of Dimes does so much for parents in helping them get through those rough days as a parent of a "shadow" baby--one that you had, that is no longer alive inside your body, but one that you cannot show off to the outside world. Your "shadow" baby is one that is on your mind every single minute of every day, but others look at you and wonder why you look like a zombie. Your "shadow" baby is a real, life baby, but one you cannot nurse, you cannot touch when you want, you cannot hold, you cannot dress in the clothes that line your closet, you cannot do anything you want with your own flesh and blood but pray and look at them through a piece of plexiglass. I remember walking into a restaurant, admiring a carseat cover that I still needed to purchase for my 3 week old baby, probably still bloated and looking questionably pregnant. I asked the mother where she got it, and she asked when I was due, an innocent question. I said I had a 3 week old and she looked around lost, and I had to explain to her he wasn't with me, and I began to cry. It felt wrong being out in the world without my baby. It felt so wrong waking to an alarm clock to feed my baby, not to his wimpers & cries.

You may wonder why in the world I still focus on this--after all he is 15 months old. Some may think, "she should just get over it!" I've even so much as heard those comments from others. I have to admit I may have been the one to think it before my experience. This is just something you never get over. You hear a beep, smell the soap, feel your rough hands, it all takes you back. Walking out the doors does not make it all go away. It is like being in a battle, you can't make the sad moments just go away. A mother should get to hold her baby, hear him cry, touch his face after he is born.

I'm going to write something that I haven't admitted before now. I was so stinkin' scared 15 months ago. We went through so much to get our 3 beautiful children. It obviously didn't come easy for us anywhere along our journey to parenthood. After Zachary was born I couldn't allow myself to fall in love with him immediately--I was too scared of him not being there to love me back. I was fearful of every moment I called to check on him, every step I took to visit him each day. I didn't want them to share the devastating news. I couldn't allow myself to relax (as so many people told me). I couldn't allow myself to enjoy the moments of parenthood with my newborn. It is sad as I look back now. If someone I had trusted could have sworn on a bible, been able to look into the future, and told me the true outcome, I could have relaxed. However, nobody knew how it would turn out. Nobody knew just what was to come for my little man. I was scared to death. My heart ached. I wanted to love him, but I now realize I put up a wall for those weeks after his birth. I became like a robot who went thru the motions, but didn't have feeling. I look at my little man now and feel awful that I couldn't love him completely and whole-heartedly. Don't get me wrong, I loved on him, I did fall in love with him.......but that feeling that moms talk about, that moment after birth when you instantly fall in love with your little didn't happen for me.

I walk because it is what little I can do for those families who don't ever get to love on their babies. I walk because parenthood should be full of joys & wonderful happy beginnings. I walk because if the small amount of money I earn can prevent one person from going through the heartache that I saw, it's worth it. I walk for the mothers who have had miscarriages. I never felt the heartache of a miscarriage, but suffered through a "loss" of my own in the adoption world and can only imagine how it might hurt. I walk for my healthy son & daughter, for my healthy nephews, my healthy goddaughter, for all of the healthy children in my life. Some of their health might be credited to research done by March of Dimes. I walk so that my pregnant friends will deliver healthy full-term babies, and that they won't have to feel what we have felt!

I feel so lucky to have Zachary with us today. There are many that don't get that. There are others that we met in our little NICU that have life-long problems due to their prematurity. We feel blessed that Zachary's minor issues are minor! We are all very positive that he will overcome all of his delays. Not all those babies are lucky.

I need to earn $50 to meet my goal. Will you help me? These people already have helped, and I am extremely thankful for their generosity!!!
Bonnie Beuning
Tracy Bohannon
Susan Chisolm
Diana Cordova-Wagner
Janet Crandall
Missy Doskocil
Krista Farris
Debbie Green
Cassie Grissom
Tara Griffin
Becki Herod
Aunt Laura & Uncle Shane Jordan
Brett Kuper
Stephanie Lindsay
Calvin & Emerald Pankewich
Uncle Jeff & Aunt Heidi Pankewich
Walt & Cheryl Pankewich
Sara Shippey
Spring Simpson
Janet Smith
Carey Sterrett
Amy Stojak
Alan & Mattie Watkins

Easter take 3

Zach checking out his treats from the Easter Bunny

Cal & Em thought the bunny glasses were the best

Daddy & Z, he was so serious that morning.
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Tuesday, April 20, 2010

Easter pics take 2

Why is it always so hard to get a good pic of all 3 smiling?

Our sweet little girl

Calvin is getting so big, he looks so grown-up here to me.
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Easter pics, finally!

So I'm a little slow, Easter was 2 1/2 weeks ago. Better late......right? It was a beautiful Sunday morning!
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Sunday, April 18, 2010

Miss Emers

This was taken the day we went to her Kindergarten Roundup

Aubrey, our neighbor down the street, and Emerald

Performing with her preschool class

With her teacher, Miss Lisa (who just announced she is having her first child, a baby girl, in Sept. Brings back memories of myself not so many years ago).

Emerald has been a busy girl lately. She loved going to her Kindergarten Roundup, and thinks she is ready to begin now, why wait!? She also had her very first sleepover last night (another pic to come later) with Aubrey. Why not have it down the street, where we can go get her if she gets scared at midnight?? We knew Nick & Sarah would take great care of her. You should have seen her packing her bag--throwing in Mango, her pillow, slippers, dog, baby doll, teddy bear, horses, etc. I reminded her that we need to fill her bag with a few clothing items, toothbrush, etc., and she looked at me like I was the crazy one. It was pretty cute to watch her excitement! Sarah said that Em was still awake, just playing quietely in Aubrey's room, at midnight. That's my girl! She is not a sleeper, but doesn't really cause a lot of problems. She's growing up so fast. The neighbors across the street were all dressed up for prom last night...........don't know if I'm ready for that!
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Thursday, April 15, 2010

More Fritz's & egg hunting

Gavin was the engineer

The kids had so much fun here

Why does it always have to be so cold for the Garmin egg hunt?

Calvin found an egg
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More Lindsay visit

Gavin squeezing on his momma

We went to Fritz's for dessert. The train delivers your food and the kids were out of their seats with excitement.

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Wednesday, April 14, 2010

The Lindsays came to visit

Sadly this was the only pic we got of all 5 kids--not the best

Clothes, clothes, & more clothes. We were going thru small boy clothes I was returning (Steph is great at letting me borrow clothes, thanks!), and she was going thru my baby girl clothes for her soon to be pink-clad baby.

4 of 5 kids on the Princess & the Pea bed

There is a dinosaur exhibit coming in May to Union Station.

Steph came to visit us last month. We had a great time, just busy with all those kids running around. She was such a help to me with watching the kids during appointments. Sure wish we lived closer. She is one of the lifelong, forever, great, comfortable friends you enjoy just hanging out with. Can't wait to meet her new baby girl, due in June!!
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Tuesday, April 13, 2010

Sliding into a whole new Zachary--we hope

Zachary is going to be my outdoor child. Don't get me wrong, Calvin & Emerald love to play outside, too. However, the never reacted the same way Zachary does to wanting to be outside, and the sheer disappointment (aka tantrum) when he is forced to come inside. This day was the first time we'd had him go down our Ft. Garmin slide (in our backyard). I think he is hooked. The top 2 pics are him trying to climb up w/o our help. The little man shows a lot of determination. He also tried to climb the window the other day. The front room window was open and he stood on his tip-toes reaching for the rim, got his fingers on the window sill, and hiked a leg up the wall. Skip and I are a little worried!

We really hope today was a step in a new direction, aka a "slide" transitioning Zach into better oral habits. This morning he had his Frenulectomy, or his tongue "clipped". His tongue was tied pretty tight, and the ENT agreed he needed it clipped. The procedure (it was called a surgery, but really, didn't seem to be worthy of the title surgery) literally took less than 5 minutes. It took longer to prep him, sedate him, and walk out to the waiting room, than the actual time spent working on him. This is nice compared to his surgery last August. Skip took him, and said he came out pretty well from the sedation. He just seemed angry that they took his milk away from him before he was done. That tells me he was back to normal :) When he walked around the corner and saw me he gave that sweet little smile of his, and was playing with his tongue (in his mouth). I got to see him stick his tongue out beyond his teeth for the very first time this morning, and it was so sweet! A little Tylenol today, take it easy on the food, very little salty foods, and he should be fine. Now let's hope that this opens avenues for him to eat larger pieces of food, and can move his tongue around to work on forming words.

Zach's procedure seemed even more minor to us after what I witnessed last night. My neighbor called me and asked me to go to the ER with her for her 3 year old girl. She had fallen in the tub, on a toy, and there was a lot of blood. We drove her to Children's Mercy South, but they chose to transport her via ambulance to the downtown location. Thankfully surgery wasn't needed and she finally got to come home around 6:00 am. That was one of the scarier times in life--ranks up there with Zach's scary birth!! We were all very concerned for her, and are still praying she heals up nicely. Today she had to go back to the doc and might have to have a transfusion due to the amount of blood loss. It hurts so much seeing these little munchkins in pain, us being helpless for them. Singing to them & rubbing their little heads just doesn't seem like enough. She is a trooper for enduring 2 sticks for her IV, and putting up with what they did. Hugs to the family and praying that she continues to heal. I left them at the hospital so I could get home to send Skip w/ Zach for his surgery. Luckily I was able to get a couple hours of sleep, more than I can say for my neighbors.

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Friday, April 2, 2010

Zachary is now 15 months old--with a whole lot of goings on

He got tuckered out on an outing to the mall with friends

See that tongue, more info below

Crawling on all 4's all the time now, and he is fast

Crowne Center had a Fairy Tale Village exhibit that was fun for the kids. We found this picture funny b/c we often say, "Fe, Fi, Fo, Fum" to get Zach to open his mouth and eat food, laugh at us, etc.

Zachary is 15 months old now!! He is getting so big, so fast. He is up on all 4's crawling as fast as he can go. He doesn't much love to be held anymore. Several people at church commented on how "active" he was, and how "fast" his crawl was. Yes, trust me, I know! He is into eating, crayons. He found a blue crayon the other day and chewed on it to make his mouth blue, and then colored on the tile. Real food is not going as well. He's just started picking up puffs this week and putting them in his mouth, which is HUGE!! He eats some pieces of foods, some times, IF he is in the mood. We are upping his calories when we can to put some meat on him. We've added Pediasure during the day and he loves it. He is cruising pretty well, slow, but not bad. Zach has decided he is an outside boy!!! Loves to be outside, and pitches a hissy fit if we bring him back inside. It's kind of cute, but borders on frustrating for my future.

We are dropping some of our PT sessions. Children's Mercy says that he is doing better from where we started, and he falls w/in the guidelines for now. It is hard to feel happy about this. My PT there is out on maternity leave, so I don't feel this is coming from her. The new PT re-evaluated him and he hit 60% in mobility, and 23% in the standing/walking area. That is for a 13 month old, adjusted age. So, he falls below 77% of other 13 month olds on where he should be in standing/walking, but doesn't need PT?? That is frustrating to me. The walking thing is such a huge spectrum, and so they don't expect him to do it until he is 18 months old (adjusted). We will re-evaluate him with CMH PT at 18 months, per their request. They reminded me that he is 2 months behind, keep that in mind (like I forget!), but by age 2 he will magically be back to "normal". I want to know how he jumps the 2 months overnight just because he has a birthday. I saw problems with his weak neck, but we had to "wait" until he was behind. I saw issues with him not sitting, but we had to "wait" until he was behind (not sitting at 13 months, yeah, behind). I am seeing problems when he doesn't want to stand with me holding his hands, just buckles, but I will again play the "waiting game" again until he falls behind, then we will, again, play catch up. Why?? Not my rules, I just play by them! They tried to put these braces on his legs to help "lock" them in place while he was walking with a push toy (something he can't really do anyway). It made me cry. To see your baby walking with braces on his legs, struggling, trying so hard to overcome whatever challenge he is faced with. I don't like seeing my baby like that at all. It hurt! Picture Forrest Gump in a sense, trying to run with the braces on, but the braces didn't break away (and they weren't metal, John Deer green tractors and all). Sooooooo, I am a little happy to not have to run up to CMH 3 times a week, asking for more people to watch E & C, but I don't know that I am happy that he isn't getting what he might need. All moms feel guilty for one reason or another during motherhood, here is my moment of the month I guess.

We still see Infant/Toddler twice a month for PT, but we are getting a new person now. She is actually an OT, so we shall see how this works out. I told my I/T PT about the above situation and she said we may be upping the amount of times we see them, but it will depend on the new OT person.

We are seeing an OT at CMH for Zach's eating issues. She has a lot of good suggestions for us, and has helped us a good deal. She suggested we see the ENT for Zach's tongue tie. I double-checked with our pediatrician to see if he agreed, and we went. This is an issue we went round and round about so long ago. The ENT agreed within seconds, seeing how tight the tie was. He is supposed to be able to protrude his tongue so far, but can't. He said we were in a rare age group. 50% of his patients come in before 6 weeks, early on. The other 50% come in at age 4 or 5 when there are severe eating and major speech issues. He acted like he needed to convince me, but I assured him I was on board. He said at this age we'd probably have to sedate him, as he might move around. I was telling him to book the OR, call whoever, let's just get it done. So, April 13th we will be back at CMH for a minor surgery. The ENT, Dr. Ellis, said he'd probably have the procedure done in 2 minutes, VERY minor, with minor complications (maybe a little bleeding). So, we go in the 12th for Calvin's 6 week post-op visit, the next day for Z's surgery. Whew! These kids keep me hopping.

Well, that about sums up our last week and a half. We've been busy celebrating Gotcha Days, remembering Grandpa's bday, Uncle Shane's bday, having some fun family moments, loving the beautiful weather, hosting Steph, Keegan, & Gavin here, and running to doc appts. I don't understand the definition of bored, anyone want to explain that one to me??
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