You can't depend on your eyes when your imagination is out of focus.
~ Mark Twain

March 20, 2014

13 weeks in frame...

13 weeks of our babies in pictures - thank goodness for cell phones!

Nicknames that have evolved
Sebastian - Bash, Basher, Munchkin, Littlest Jones
Keegan - Keegs, Keegers, Keegalicious (middle of the night, but it sticks), Pumpkin, Littler Jones
Weston - Little Jones, Buddy
BIRTHDAY!!! 12/12/13 (6 weeks early)
living in the NICU, hooked up to: IV Antibiotics, feeding tubes, "room air" oxygen push, and in incubators to regulate their temperatures. Sebastian ends up under the Bilirubin light for a few days to fight Jaundice.
WEEK 1 - Major Progress!
Antibiotics ceased, Oxygen tubes removed, no more bili lights, and we're kangaroo holding - which is skin-to-skin holding. Keegan snuggles in, while Sebastian licks me until he falls asleep.
12/19/13
Both boys only have feeding tubes, though they are breast & bottle feeding when they have the energy. They have also been moved to open air cribs!
Week 2
Noticing the world around them, working on weight gain and consistency, and wearing clothes!!! Keegan meets Weston through a glass window and slightly open door first, and then on Christmas Eve Weston and our nieces meet both babies through the glass window. My Dad and brother hold them for the first time.
12/26/13 - My Birthday!
Still working on growing and eating, maintaining body temp, and not having any "spells" - once they reach these goals, they can go home!
1/4/14
Sebastian came home 12/31/13, and Keegan joined him on 1/4/14. finally, our family under 1 roof, and no need to leave the house in awful weather to venture to the NICU.
1/12/14
They are thriving! Both are gaining weight, but still not sleeping for long.
2 Months Old!!! 2/12/14
Photo shoot courtesy of Tylenol and 8 wk vaccinations.
2/14/14
Happy Valentine's Day from Aunt Shannon and soon-to-be-Uncle Bill.
Weston is in love with his baby brothers.
2/20/14 - Time has flown by and these boys have grown by leaps and bounds. They've doubled their body weights and added 2+ inches to their lengths. They're smiling and amazing. Keegan developed a Hemangioma - a birthmark that appears as a rubbery, bright red nodule of extra blood vessels in the skin. It grows for the first year of life and then fades until there is little to no trace of it. It really came in handy for telling them apart for the first few weeks at home. :)
2/20/14 - Synagis Vaccinations #2
Because they were preemies, our boys had to get what is more commonly known as RSV vaccinations. They got mailed to us directly and a home health nurse (Laura) would come out and administer them. So, here they are waiting for their shots just after being weighed. I swear Sebastian knows exactly what is going on.
Whenever these boys are too fussy, we strip them. Just like their big brother, being naked calms them down. the hate being too warm. Weston will take any excuse to remove his clothes.
We had pictures taken at the hospital on 12/31/13, you know, the ones where they visit in the first days after birth? Or in our case, almost 3 weeks after birth. We had to wait until they were both healthy enough to leave their NICU room. I had this print made at Shutterfly.
Naked Baby Time! Taking advantage of an outfit change and a 60 degree day.
For the baby shower thrown by my sister, guests were encouraged to design onesies. Our nieces made 2 of my faves - Sebastian is wearing Zoey and Keegan is wearing Paisley.
Keegan's hand in mine. I think baby hands just might be my favorite body part. And his are so perfect! And huge for his size!

3/12/14 - Our babes are 3 months old today! they offer smiles and coos, they love to be held and cuddled. Both are doing really well.
Our babies caught the cold bug that Weston and I've had. Keegan had it the worst at first with a bad cough. Sebastian's popped up again this past weekend, and mine came back with a vengeance. These Rock-N-Sleep things from Fisher Price have been a lifesaver. I wish I had one with Weston.
Weston had Dr. Seuss week at school. Monday was Red Fish, Blue Fish day. So we made him a shirt using his hand prints a la Pinterest. He wanted his brothers to match, and they were quickly growing out of these.
3/8/14 - almost 3 Months!
We had their 3 month pictures taken at Target, and then had family pictures taken as well. (see the left sidebars.)
We baptized our babies at St. Paul Lutheran on 3/15/14. I forgot to charge the battery on my camera, so this is what I have until I collect from everyone else. It was another hard time without Mom, but Dad put on a brave face and really enjoyed his grandsons. We had a great evening with both sides of the family and our friends.
3/16/14 - Sunday brunch with Scott's family. Sebastian is not thrilled about the layers in his outfit, how his cold is progressing, or the fact that I am posing him without the bottle in his mouth. He got over it, and never really did cry.
 This is the background on my phone's lock screen. It's basically a week in pictures. Papa and Keegan, Sebastian's selfie that he messaged to my friend Tuesday morning. Keegan's selfie that he instagrammed so he wouldn't be forgotten (As if!!!), and my Jones' Boys in their St. Patrick's gear. The Itty Bits are actually wearing Weston's hand-me-down tees from 2009. No idea how tight they must have fit him!

This is 3/21/14 - finally wearing the Owl hats I had made for them - and of course it's almost spring. :)

March 19, 2014

Since I've been gone...

My Mom died over 5 months ago, October 18, 2013 .
It was not beautiful, but it was mercifully fast. Mom didn't suffer as much as we did, and I thank everything for that. It was a little supernatural in that I heard something hit the floor upstairs near her bed right as she passed. We looked everywhere, nothing had fallen. I think it was Mom. It's all it could have been, at least in my head.
I wrote her obituary, at her request, and it's some of the best writing that I've ever done, or so I've been told. I'm glad that I could honor her that way.
I'm not over it. I will never be over it. I miss her every day, every night, whenever I look at my children. And yes, I said Children.

My boys were born Dec.12th. They were 6 weeks early from their due date and 4 weeks early from our scheduled C-section.

Everything was fine and normal on Dec. 11th. I had my regular apt with the Perinatal Center - ultrasound and non-stress test came back great. Babies had turned sideways, but we all thought that was good- they were getting ready for the final stretch. As I was leaving, my brakes went out on our car. Everything ended up fine- I wasn't hurt, and I managed to make it to a gas station on one of Des Moines' busiest roads. he car was towed, and my sister picked me up. My aunt was in town watching Weston before and after school since our daycare was closed, because they had their baby. We went to dinner that night all together, and I still felt fine. No problem.
I woke up at 5am on Thursday, December 12th, having to go to the bathroom. I got up and felt like I wet myself. 15 minutes later, I woke up and realized that people do not go to the bathroom for 15 minutes. So I called the hospital nurse and confirmed that my water had broke. So we went off to the hospital in a great rush - no packing, Weston wouldn't even wake up. We were just so lucky that my aunt wasn't supposed to leave until 9am. She took care of Weston and got him off to school, and then joined us at the hospital. I was so ridiculously calm. Scott too. There was no freaking out or anything. I still can't believe how calm and surreal it all was. The nurses actually told us that Scott and I were the cutest couple, one of their favorites. I didn't feel like we were being particularly nice to each other, but hey, we'll always take a compliment.
It took 5 hours for the hospital to get everything in order (I totally had time to pack!!!) It was smooth and so much different from Weston's emergency C-section. I actually had contractions this time. But they never got bad enough to need medication, but they were almost to that point. :)
But, it was nice to talk to the doctors and nurses, to have time to comprehend everything.
Keegan Nathaniel was born at 11:31am, 5lbs 4oz, and 19" long. He was doing well enough for me to see him up close.
Sebastian Miller was born at 11:34am (though it felt so much longer than 3 minutes in between since they had to pull him out from under my ribcage). He was 4lbs, 12 oz and 17-1/4" long. He wasn't doing as well, so I saw him through the incubator.
The babies were immediately transported to the NICU, while I was taken to surgical recovery. I had an amazing experience. Everything was calm, our babies cried when they were born, and I got to see them before they went upstairs. The doctors and nurses were amazing, very caring and I didn't feel like I was on an assembly line. I really wish Mercy would send me a survey or something. I was able to see my babies in their NICU room within 3 hours and I was able to hold Keegan by 9pm that evening.
I was in the hospital for 4 days, and it was weird being in the maternity ward without babies. It was also lonely, especially at night. I was up and walking by the next day. I only missed 2 days of being in the NICU with my boys in over 3 weeks, and it was weather related. Our winter weather has been awful since these boys were born. It's like they brought ice and snow with them - probably so they could snuggle more.
Our boys were in the NICU for about 3 weeks. It felt so much longer. The first few days were the longest, and most frightening, but looking back, we really had it easy. Our boys were rock stars. They were born at a great size (I think they would have been 8-9 pounds had they gone to their scheduled delivery date), and were in pretty good health. They needed help breathing, so they were on Room-Air Oxygen, what that means is that room air is pushed into their lungs to help them breath regularly. It's a big step down from pure Oxygen. They were also on antibiotics (to cover the bases), feeding tubes, had their blood sugars checked regularly, 4 different heart/lung monitors, and in incubation boxes (I'm sure that there is a better name, but it's a plastic box.) Within a week, they had made vast improvements. I thought for sure that we'd have them home for Christmas. Everyone said I was wrong, but I looked at it as being optimistic. The boys had to meet four requirements before their release:
1. Maintain their body temp
2. Continually gain weight
3. Eat by mouth (breast or bottle) consistently for 48 hours - since they were early and smaller, eating completely tires them out, so they occasionally had to be fed through the tube so they would have enough energy to bottle feed the next time. The more the eat, the more they grow, the more tired they get trying to get there. It's a vicious cycle.
4. No Spells - what are spells? Spells are cycles where the baby's heart rate & breathing drop very low for longer than 15 seconds before their body recovers, either on their own or with assistance. It's one of the scariest things I've ever seen.
So, as I said, I was optimistic for a Christmas homecoming. The boys were rocking it, Sebastian was finally overcoming his spells and was really picking up the eating. On 12/23 the boys were circumcised. Sebastian sailed through and kept moving forward. Keegan just couldn't get over the stress of the circumcision and/or the overall pain. He started having set backs - spells, not eating, maintaining, but not gaining weight. It was a long 12 days with him.
Sebastian was released from the NICU on December 31, 2013. It was the hardest thing leaving Keegan behind. But it was the right choice and place for him. If he had been released and had to be readmitted, he would have gone to the PICU (Peds) instead of the NICU - and there are so many more infections in the PICU. Weston and Sebastian got to know one another, and I really think it helped Weston to only have one baby to deal with. Once on his own, Keegan really started to flourish. We were back on the countdown to release.
Sebastian came home the afternoon of January 4, 2014. It was crazy saying good bye to the NICU and signing out for the last time. We plan on going back and taking some of the boys clothes... not all NICU babies are tiny. :)
Its been an amazing time. I was able to stay home with them for an additional 7 weeks, so I was gone from work for 10 weeks. I had help for 8 of the 10 weeks. My aunt came of from Cedar Rapids for 2-4 days 8 of the 10 weeks. She was a godsend. My sister and her fiance also come by to hold and cuddle and help out as needed, and Weston has been a big help too. Well, as big of a help as a 5 year old wants to be. The boys are smiling and cooing and starting to laugh in response to tickling. All is good so far. :) My Mom would just love these boys. They each like to be held and cuddled and then they want to be put down for time on end - she would have loved that.

October 16, 2013

the coming End of a Battle

"Love does not begin and end the way we seem to think it does.
Love is a battle, Love is a war; Love is growing up."
- James A. Baldwin

I have no idea who James A. Baldwin is... but I like his thoughts.

I feel ravaged from Battle... and yet, I know that so much more is going to come.

I haven't written; I didn't know how. I still have a hard time putting anything into coherent sentences.

My Mom is dying.

She was released from the hospital 10 days ago, to basically go home and succumb to the infection that she contracted in the hospital. There was nothing more that they could do, so they unplugged her from the IVs and platelets and medications, and that was that.

Since she felt great, we met her at Riverside Casino for an afternoon of her favorite hobby. And she and Dad won pretty well too - which helped in their visits to the casino since (2 or 3 more times, I've lost track.) But things...

I'm just going to post this as is... interrupted and all.
So much has happened since I started this post, and I will need time to process my next post. I know this doesn't answer any pending questions, but it is what it is.

"LoverLove does not begin and end the way we seem to think it does. Love is a battle, love is a war; love is a growing up.

Read more at http://www.brainyquote.com/quotes/quotes/j/jamesabal100681.html#2gH8fkthfzqXzi1L.99

October 15, 2013

6 months

At our last 3D check of these little boys... they didn't really look alike.

Last week, at almost 25 weeks weeks, or just over 6 months - these boys look so much alike and so much like Weston's ultrasound, that I am flabbergasted! And so excited to see them!

Here's a link to the post 4 weeks ago.

Here's our boys at 24 weeks, 5 days:
Baby A with his hand by his face

Baby B smiling

September 30, 2013

Cancer is a Bitch!

on another note... I am feeling angry, and selfish, and miserable... and thrilled by how much these little boys are moving!

My Mom had a sore throat a week ago. But Tuesday she was admitted to the hospital; by 6pm that night she was transferred to the main hospital in the state; by 10pm that night, the doctors had called it a Recurrence of ALL - Acute Lymphocytic Leukemia. My mom battled this in 2010, and had a Stem Cell Transplant in 2011. In 2012, she battled a localized spot with radiation and everything was fine.
Mom and me, Sunday, 9/30
To say this is a shock is an understatement. We had so many plans for this Fall... making blankets for these boys, refinishing 2 dressers for their room, decorating all 3 boys' rooms. She was coming out to stay with me for about 2 weeks to pick up Weston from School when daycare is closed. And she was coming out when these boys are born for weeks to help. I feel so selfish thinking of all the things she won't be able to do with me... and wondering how they are going to get done.

Here's what we found out this weekend:

We converged on Iowa City en masse Friday night. We spent 40+ mins with Dr. Carter and here's what we learned: her cancer is fatal, all they can do is try to give her time and make her comfortable. Apparently the team knew that her Stem Cell transplant was considered a "failure" since last year when the leukemia came back localized in her elbow. The doctors just never told us that- and I'm not going to lie, we all got mad at that. They were just waiting for it to come back, and we should feel incredibly "lucky" to have had the time we've had. I'm not feeling very lucky right now. 
Everything revolves around her kidneys. They've been slow all week. If they come back and start to work better, then Mom could have months. If not... We're down to days or weeks. Her oncologist is against all machines to extend life - dialysis and such- He calls it a "Quality of Life" thing. But her kidneys aren't bad enough for that yet - but they very soon could be.
It's a 50/50 battle for the kidneys. And they're slow because the leukemia is reproducing so fast and dumping cellular garbage into her blood that its overloading her kidneys.
 

Saturday was a brighter day. She had started steroids over night and woke with minimal pain and was able to move around all day really well! It surprised her doctors, but we all know what a fighter Mom is. We had some good laughs and some tears - lots of talking, etc. 

Sunday brought the good news of better kidney function (not great, but any improvement is a positive sign for us!), but also a lot of exhaustion and a headache that went away after food - I think we wore her out yesterday! So we visited and painted her nails, and let Mom get some much needed rest. The highlight of my day was Mom walking to the family room to check on her grandbabies - and then the photo op that followed (pictures to follow.)
Mom walked down to the Family Room to
give her Grandbabies hugs and kisses.
I just got a call from my sister that the headaches aren't as simple as we thought... they did a Cat Scan this morning and the results showed 2 small brain bleeds. She had hit her head on the car over a week ago... that could be one of them. But they aren't sure, and she is still bleeding. The plan is to pump her full of platelets and hope that these damned bleeds clot by themselves. There is no way that Mom can have surgery - her counts are way too small. I take comfort in knowing that her personality is the same and that they found them quickly. We're waiting to hear back on what we need to do, but for now, we're hanging out together.

So Pregnancy Hormones plus Cancer. I'm not in the best place most of the time. And the fact that no one wants to stress me out - it's not working. I just want to bury my head in a cold pillow and cry myself to sleep most of the time.

The amount of fear that I am living with makes me worry for these babies. I just want them and my mom to be healthy. I want her to hold them. I want her to be here for all of it. I want her to get out of the hospital and to spend some quality time with her favorite casinos. :)  I want her to go out in her own style.

September 18, 2013

Blubbering Mess...

As I am watching Weston at his next round of Swim Lessons (Intermediate 1), I am trying to hold the tears back. And it's mostly not working.

When I pledged Chi Omega in the Fall of 1998, I instantly made a connection with Janelle. She was so nice and accepting, taking me under her wing. Showing me the ropes... Helping me to quick cash my first paycheck after the bank was closed on a Friday afternoon. Heck - she even helped me buy my first bottle of alcohol to take to a Date Party (since the fraternity boys would only have cheap beer.)
Secretly I had wanted Janelle to be my Big Sister - the XO version of a Pledge Mom. But she explained to me that she wanted me to have a sister who would be around more - you see Janelle was a senior when I was a freshmen... And she wasn't from Iowa, so she would leave after my first year. So I got another Big Sister (who was fantastic) and Janelle watched out for me that first year. When I had trouble making grades (college studying is so different than high school studying) she had me come to house to study there. When April and I were initiated together, and I think we spent 4 hours in Janelle's room - she had set out snacks, and movies and notes. She was incredibly thoughtful that year.
A few years ago, we reconnected. Found each other on Facebook as so many do. She had a Blog, I had a Blog. We followed each other and have insight into each others lives. We talked about our struggles and kids. When Mom got sick, she was so supportive.
And then on July  18th, came the news that she'd had a biopsy - and everything came back clear and great, and after Mom, this was a huge relief! But by the end of July - less than 3 weeks later, News had come back that Janelle has Stage 4 Acute Adrenal Cancer. I immediately hit Google. It hits mainly people age 30-40. It hardly found in the early stages unless it manifests as a whole tumor. Janelle's never grew as a single tumor - it spread everywhere - the same way that the hormones that the Adrenal gland produces do - her lungs, her brain... It kept going. She immediately started Chemo. She had a small break and then jumped right into radiation treatments. She completed those less than 2 weeks ago. And things seemed to be going better. She was enjoying food again. She was going out with family. It was such a relief. 
Today... Today we got the news that Janelle had been moved to a care center, and would probably being going home today with Hospice Care. According to the news, the chemo and radiation did nothing to slow the tumor growth, and in fact the tumors had all grown more than 50%, filling her lungs and one is set to sever her spinal cord. How is this possible? She is 35 years old, happily married, and has a beautiful 8 yr old daughter. 
I've been crying since 5:30. Weston was convinced that I was crying from happiness at being able to take him to swim lessons. I let him run with that. In no way could I explain that my friend is dying. Because my friends shouldn't be dying. 
Our friend Brandy is getting married in October. We will be serenading her with the traditional XO song, Shades. Janelle has such as an amazing voice, and used to carry our whole house with this closing hymn. Every time I hear this song, I hear her carrying the melody. Making it a better song, and we'll never be together to sing that again.
I am heart-broken that this is happening to my friend and her family. I am so angry and sad (and probably hormonal). I hate cancer even more than I used to. I've said it before and I'll say it again (and again and again): Cancer is a Bitch.

Baby Bump

"Is it called a Baby Bump when it's twins? Or just when it's a tiny bump?"
"Ummm... It's always a bump, no matter how big. Think speed bump." 
*facepalm*

21.5 weeks - first maternity wear