photo taken by Angela Speiker

Sunday, February 28, 2010

Our March of Dimes Mission--help us help them

Click on this picture to pledge money to help stop premature birth.

I am passionate about 2 specific causes in my life right now... positive adoption exposure & The March of Dimes. The March of Dimes (MOD) helped us when we were confused after our sonogram, finding out that Zachary had a 2 vessel cord. MOD had a fabulous page full of factual information that helped me understand what this meant for myself and for our precious baby boy. MOD helped us again when Zachary was born early. They didn't wait until we had donated a given amount. They were ready for him because of funding made possible by people like you and I.

I have made a family commitment to MOD. I am not one to beg others for money for every little thing. But this organization has done so much for me, and I want to give back to them.

I have joined the March of Dimes, volunteering to help with the March for Babies walk here in Kansas City on May 1st. I love getting to know some of the other families that volunteer. I am amazed by the incredible stories I hear of early births, survival, happy endings, and complete families. I am saddened by the stories I hear of the unhappy endings, the babies who didn't have a chance, and the strong families who continue to help MOD because of their story. All-in-all, Zachary wasn't THAT early compared to some. He wasn't THAT small, compared to some. His post-NICU life hasn't been THAT complicated compared to some. However, we have been changed forever because of his early birth. He didn't get the chance to develop those core muscles, which have seriously impacted our lives on a daily basis. He has a weakened immune system, which has impacted us. While we are continually thankful for all of the numerous positives in regard to his health, we are still affected by his early arrival.

Our goal this year is $650. This number was chosen because we have been seen by a medical professional 65 times in his first year of life outside the NICU (you know, besides the first 42 days of living at the hospital full-time). Most infants will go 7 times in their first year for well-child checks. They may go a few times for specific illnesses. So, the average number of trips is, say 10-15 maybe (or is that high)?? We have been seen 65 times!!!

I am pledging my money to helping at least one other mother to not have to go through this. I'm hoping that one other mother doesn't have to hear "weak" when talking about her baby, "delayed", "adaptive equipment", or "possible neurological problems." I don't want another mother to go through this!

I'd like to help you understand why I have chosen this goal for our family. This high number of doctor appointments has been difficult for me. Let's walk thru this, for fun sake.

  • Making a call to be seen takes time (and peace and quiet, something that is rare around here).
  • For MANY of those visits I needed to have Zach alone, in other words, no extra siblings. Begging people to help me, paying babysitters, making arrangements for family or daddy to watch the other kids (which means weekend work hours, late nights for him, etc).
  • One appointment located downtown=2 hours drive time, round trip.
  • Children's Mercy South (the closer location)=90 minutes drive time, round trip. If only I could add all the hours I've spent in the car on the way to and from doc appts.
  • Waiting room time, oh the fun times with all 3 kids in a waiting room. One trip specifically took 1.5 hours in the waiting room.
  • 2 ER trips, which was tough to decide to go, or not to go, was it worth it taking all 3 kids there and exposing them to a lot of extra germs?
  • Double-checking with insurance to make sure that these 65 trips were covered.
  • Co-pays, which I really won't complain about AT ALL, because I LOVE our insurance, but I can at least mention co-pays in here, right?
  • Waking up EARLY, so that we can get all 3 kids ready, and drive. An 8:00 appt time doesn't sound too early, until you start figuring it all out.
  • Messing up nap schedules to accommodate doc visits.
  • The impact of having doctors tell you certain things about your child.
  • The stress of knowing there is an upcoming doc visit where you may receive news you don't want to hear.
  • Trying to make 2 other kids feel loved b/c they aren't getting this much of mommy's attention.
  • Not being able to help others in ways you want b/c your life revolves around doctors appointments.
  • Weather. Yes, it sounds silly, but you try getting 3 kids in and out of the doc offices/hospitals in sub-zero temps w/ ice & snow on the ground--not fun!
  • Knowing you shouldn't complain at all, b/c you have insurance, you have doctors available, you have access to a Children's hospital, you have a relatively HEALTHY child after all.

These are just a few of the reasons why this impacts me so much. For anyone who has ever gone to the doctor, you understand. It is stressful. Now, multiply that by 65 (no not all of these were actually in an office, thankfully some were in my house). Now multiply that by 3 extra kids, all under age 5. Fun, yes, I know!

I will write more later. I will describe more of what MOD does to help you, and me. I will go into details of our doctor appointments. I want you to feel impacted, as we have been, and "make" you want to do something to help.

We are walking on May 1st. I will earn my money--I am determined. Will you help? Will you walk with us? Will you pledge money to helping MOD help families like ours? Even $5 will help.

Friday, February 26, 2010

Some cute pics from Valentine's day

These are a little late, but it's never too late to post cute pics of my kids, right?
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Wednesday, February 24, 2010

The (almost) finished product

Here is Zach's almost finished room. I still plan to hang his quilt, and we need a good pic of him hanging in the room. Not sure if I should paint the letters, or leave them white. My energy level = white for now. I like the colors we picked, it turned out matching pretty well.
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Friday, February 19, 2010

The "during"

2/7/09, Zachary's Homecoming Day. His gift was to get his room painted, finally!

Calvin helping Daddy paint a C

Emers & Zach wishing they could help.

Sadly, this was also part of the "during". Thank you Netflix online. Em & Cal watched movies & played, and Zachary just scooted around all over the place. Have I mentioned it is tough to care for those 3 and get a big project done?? Every 2 seconds, potty, hungry, someone fell, fighting, barking, nap time, food time, phone rings, Zach gets hurt by his big brother, etc., etc. I was reminded why it took an entire year to get this done!
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Zachary's room--the before

Zachary looking on wondering what we are about to do to his room. He and Laney weren't too happy to not be in the middle of the paint job "helping".
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Thursday, February 18, 2010

Tired of this?!?

This was the snow that came down a week ago. It was this gorgeous, fluffy, stuck to every surface making everything beautiful snow. It was the quiet, reflective, makes you appreciate nature kind of snow. Such a pretty sight! We've had a lot--I mean record amounts of snow here, records that stretch back over a century! I'm tired of the cold, no doubt, but this, really, can I get tired of this beauty?? It really was a pretty sight!

Today I am praying for some special people in our life! I am going to be elusive, w/o detail, but it is important to us. We love you, each and everyone one of you, and know that this is tough. Prayers that today goes smoothly and that things will work out for the best. Know that we will be here, for anything, everything, no matter what. It's what you call unconditional love! Hugs, prayers, and lots of love :)
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Wednesday, February 17, 2010

Calvin's surgery update

This is the only pic we got in the hospital. He was NOT in the mood for pictures that day.

Home showing off his "owie" & band aid to sis.

This was a "get well" doll they gave him to color. He did a really good job making a face, coloring clothes, and then made a mask to cover his eyes (b/c the doc had told him that he'd be wearing a mask during surgery).

The after pic. His eye was a little swollen, got a little more bruised, but not too bad. The mark all the way to the left is actually marker. The doc wrote her initials on his face w/ marker, and Cal immediately smeared it. Looks like a bruise, but it's not.

Sorry this is so long at posting. It's been a busy weekend/week. Calvin did great with his surgery. Thanks for all the well-wishes and concern. He was so quiet in prep--highly unlike him! The surgery took about 50 minutes and he recovered just fine. I think the worst thing for him was not getting breakfast that day! He is my breakfast eating kid. Once we got home and let him eat, he was back to normal almost too fast. His eye got a little swollen, a little bruised, but not as bad as I'd anticipated. He's done pretty well with leaving the site alone. They didn't even cover it to send us home, just some internal stitches and some glue. The doc said everything looked normal to her. It is sent off to pathology just to be safe, but we don't suspect anything wrong. We have a post-op appt Monday.

It is funny, during the pre-op stuff, we got questioned about his adoption. Are you his parents? Where was he born? Is the adoption finalized? So many questions about adoption I didn't' anticipate. I know they needed to know we had the "authority" but still! We also had to tell them we really didn't know a lot about family history with things like anesthesia. You never know in our world when this is going to come up. I just didn't even think about that being part of our day.

We are so thankful that Calvin is ok! You never like seeing your kids sick, or have to have (even minor) procedures done to them. He handled it great. I thought the worst part would be when they wheeled him back & we left him. Nope, he was too excited to be going for a ride in the bed! What a brave, big boy!!! We love you Calvin.
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Thursday, February 11, 2010

Praying for Calvin

Calvin has his surgery in the morning. We have to be at Children's Mercy at 8:30, not too bad, with surgery scheduled for 9:30. Praying that it will all go smoothly and we will be home soon. Emerald was such a sweetheart tonight. She left Mango in his room to sleep with (I needed to wash Bo Bo before he goes into surgery) and even offered to let Mango go to the hospital. She is a fabulous big sister. I think she might be worried. Calvin is going to the hospital, with mom and dad. If you think of what she has experienced with her brother (the other one) in the hospital, it equaled a long time. "Calv" is her buddy and I know this is hard on her. Calvin seems excited and happy about them "taking off my bump" and is super pumped to have mom and DAD there with him. I hope he will be ok when he can't eat in the morning. I hope that recovery goes well and that there isn't too much pain or swelling near his eye. Not a lovey-dovey way to celebrate Valentine's day, but I'm glad it's happening now before it grows any larger.

Praying for you Calvin, that you have a safe surgery, speedy recovery, and understand that the pain will go away. Praying for the surgeon as she removes all of the cyst w/o leaving any in there to regrow, w/o any infection occurring, and that none of the cyst in near his skull. Praying for the nurses that they are sweet, kind, and patient with you. You are my baby boy and mommy loves you so much!!!!!! Praying that Emerald and Zachary understand as we devote extra time toward you during this time in life. Prayers, baby boy, prayers!!!!!

Sunday, February 7, 2010

Pics for previous post

For some reason the pictures didn't upload last night. Match these pics up with the sayings below. Too busy (or should I say lazy) to fix it the right way.
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One year ago......celebrating Zachary's homecoming day

One year ago, finally bringing our baby boy home

Working every day to get stronger at sitting up

Zachary loves to stand these days. Our biggest problem is him tripping on his pants. The skinny guy can't keep up the pants--they have to be big enough for length, but too big around the waist.

Love how Zach gets down our step, head first. He has pretty strong arms.

Happy Gotcha Day Zachary! We have this special day for our other 2 kiddos, so it is nice to be able to celebrate Zachary's homecoming day as well. One year ago we finally got to walk outside the infamous double-doors of the NICU w/o worry of the Hugs tag setting off the alarm. We finally got to put him in the car and drive home w/ him in the car. The driving home from the hospital we'd done for 6 solid weeks, every day, 42 days straight driving back and forth, w/o him. We brought him home and finally got to allow Emerald and Calvin to be up close to their brother, to touch him, to hold him. We got to watch him sleep, hold him as much as we wanted, and love on him in our own home. We did have to wonder--after 42 days of monitors and constant supervision of all his vitals, we wondered constantly what his O2 sats were, should we take his temp, did we wash our hands enough, what is his heart rate???? We went thru monitor withdrawals! But, we had our baby boy home. We got to bring him home to love on and to care for and to finally feel a permanent member of our family. We no longer had to split our time between the three kids. I know we really got him on Dec. 27th, but this day will always remain in our hearts as the day we finally became a complete family under one roof. Happy Gotcha Day Zachary Stanley! We love you so much.

Zach is doing much better with standing. He is even taking some side steps, which is highly encouraging to us. I really think he isn't motivated to sit b/c he is crawling to much. Instead of sitting still, he'd rather be on the move. His feeding is getting a teeny, tiny bit better. He doesn't gag and vomit at something entering his mouth these days. He is doing fabulous with a straw, so that is very encouraging. He even ate some mashed bananas the other day! So, we continue with PT, OT, Infant/Toddler, and she recently mentioned possibly adding Speech to the mix, to help with feeding issues and making sure there isn't any issues that develop later.

I was thrilled to go to dinner earlier this week with 4 other moms that had been in the NICU with us (another mom couldn't make it last minute, boo). It was AWESOME to be able to go to dinner with other people who understand where I'm coming from. It really did make me stop and remember how lucky we are. Some of the other babies that are our friends are having G-tubes for much bigger feeding issues, complete oral aversions (in other words, nothing enters her mouth at all), brain shunts, heart surgeries, cochlear implants for complete hearing loss, eye surgeries to help improve vision, and some other issues I won't mention. I sometimes feel myself being overwhelmed with all of the problems and appointments we have. Going to dinner with these ladies helped me to realize how lucky we are to not be back in the NICU and to have our healthy babies home with us. There are some people who aren't so lucky! It was a fantastic evening, and I wanted to stay with them longer (but one of them had to get back to her baby, Dawson, who was in the PICU at KU Med and had had major surgery just that day).

On the way home our evening was dampened with a phone call saying that our car window had been smashed in. My friend's husband was awesome and had cleaned up much of the mess for us. We assumed silly teenagers smashed 7 windows in 2 blocks. It was a cold ride home that took a little longer than usual. Skip joked saying that my girl's night out cost too much money and I might not get another chance :) If that was my last, it was a pretty good one!

Thursday, February 4, 2010

Calvin's surgery is scheduled

Our sweet boy on his 3rd bday

Emerald and Avery playing dress up

Carson and Aubrey were playing dress up, too.

Zachary loves his little table and spends an extended amount of time standing at it these days--we are pretty excited about that!

Went to the plastic surgeon today. We are having his dermoid cyst removed next Friday. It was reassuring to hear them say that this is very common (they see maybe 2 or 3 a week) and is a minor procedure. They said these fatty cysts are actually created before birth and continue to grow. It obviously has been growing larger over the last year and especially the last few months. It almost always happens near the brow line. It will be a brief, 30 minute or so procedure. However, with prep, working with the anesthesiologist, an IV, helping to secure his airway, post op/recovery, waiting to make sure the bleeding has stopped, he can eat/drink w/o vomiting (we could have issues here with Cal), it could be a 5 hour deal. The bleeding should be minimal. There will be a small scar. They plan to send it off to pathology to confirm that it isn't anything to worry about. They said he will have some bruising, a day or pain, but not too terrible, some swelling, but really he should be up and running within a few days.

The "bad" part of the talk. She said that very, very RARELY it could possibly be attached and have grown under his cranium, but this happens maybe once or twice in a doctor's lifetime. If this were the case, they'd have to stop the procedure and we'd have to move on to a neurosurgeon. They could do a CT scan to see if this is the case, but because of the rarity, the risks of the CT outweigh the chances of this happening. So, no CT for him, which is fine with me.

There really didn't seem to be an option of not removing it. She said that it would continue to grow, which isn't good. It would pull at his eyelid (lit it already has started to do) and affect vision. It could also possibly cause some nasty infection internally. Not that I had a reason I didn't want it removed, but there are some reasons for taking this cyst out. Another negative thing could be a recurrence of this cyst in the future. It could also have some possible infection if not fully removed. She assured us that all this was rare, and pretty much wouldn't happen, but obviously needed to go over all the risks before surgery.

So, we will pray that all goes well and that healing and recovery goes smoothly for out little man. I picture my sweet Calvinator being scared and sad as they take him away from us. Now I see why this isn't as bad to do with younger infants, as the attachment and understanding isn't there. Hopefully he won't be too scared, and mommy won't cry before he leaves the room.Posted by Picasa

Wednesday, February 3, 2010

Calvin's new friend, Vinny

For Calvin's bday we took him to T-Rex Cafe. While there, he got to build a dino. He picked the velociraptor. We named him Vinny, and Vinny has been a new, fun friend for our sweet boy. It was Calvin's first Build-a-Bear, and he enjoyed it a lot.
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