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2 MIRACLES HERE, 2 ANGELS UPSTAIRS

[Heaven, 2 here 2 in]

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2 here 2 in Heaven

May 2008
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CHEST SCANS, PERSCRIPTIONS AND TEARS

Mar 17, 2008 03:15pm (EST)

Friday morning Nana and PaPaw picked up London for a five day visit. Despite being on day 5 of steroids, his cough (that has lingered since his croup two weeks ago) was still there. No fever, wheezing or labored breathing....just the cough. London's favorite place in the world is Nana's house, to keep him home would have broken his heart. It's fair to say no one else in the world is as careful with germs or exposure than my mom, who is also a nurse.....so we felt fine letting him go.

By Sunday night, he'd gotten worse and we decided his trip would have to be cut short so he could return to the doctor. Today is day eight on steroids and albuterol, yet the cough is very persistent, hard to stop and quite frankly London looks like he feels awful.

After a set of chest scans to be sure pneumonia hadn't crept in, we were told to keep him on his current meds for three more days, and a 10-day dose of augmentin was added to the list....in the case there is an underlying infection lingering. If things are not much improved at the end of this regiment, or if he gets worse....we've been told we may need to see a specialist.

Poor London was beside himself that he not only had to come home and go to the doctor, but that Nana and PaPaw had to return home. Seriously, he'd be on cloud nine if he could spend the majority of his time there...the bond those three have is so strong. After a three-hour nap, full of coughing fits, he is now up and watching a Backyardigans video, asking for Nana, and saying the augmentin "tastes bad". Bless his heart, his tears...probably due to the roids...have subsided for a bit.

On top of that........This morning before he returned home, I woke up in a panic. My torso felt like it was in a vice, tightened too far. No matter how I tried to reposition myself, the pain was intense. After several doses of IBU, and once London was home from the doctor, I went to the doctor.......and ended up having my own set of chest scans. Thankfully, my lungs just looked a little inflamed and with a week of an anti-inflammatory prescription I should be fine. And doubly thankful, I'm not contagious.

Tonight looks like it will be a long one. I'll likely be camping out in London's room holding him up in the recliner to reduce his coughing. Poor kid, I swear EVERY March he gets something......RSV, pneumonia, chest cold, something. A five year old child shouldn't have to go through this.

We'd planned on going to my parents for Easter Sundy...Camden and my niece Tatum have matching outfits (Camden is thrilled!) but we may not get there. Is it May yet???

Shonda
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VENTURING OUT!!

Mar 12, 2008 08:44am (EST)

Its that time off year again! Spring is almost here! The snow is melting, the birds are chirping, the neighborhood dogs are being walked more.....and finally...the kids are starting to go outside to play. It is time to Venture Out!!

When our first "green light" summer came I was so excited to take London out.....and yet scared to death. Cold/flu/RSV season was over, but that didn't mean we wouldn't run into germs and sickies once we left the house. For all the support and information I had during RSV season.....I was ill prepared for Venturing Out on my own.

How do you feel comfortable heading to the park, going to a resteraunt or letting your child join in a playdate? What precautions can you take to help keep your kids healthy? Are some places better than others to visit? Are there certain times of the day to visit certain places? Of course!

Will people give you funny looks if you wipe down the swings at the playground with clorox wipes? Will they tell you "we already did that" when you clean a resteraunt table and high chair before your child sits down? Probably. Will someone get their feelings hurt at church when you don't let them shake your childs hand.......when the just sneezed into their own? Maybe.

My husband still laughs that I won't let him drink out of my glass. Poor James thought I'd share my ice cream with him. Once you've spent months in a NICU, seen what RSV, croup, infections and more can do to a child......you begin to rethink voluntarily swapping germs. Granted, I AM a germ-a-phob.

For a host of information and great tips to have a fun and healthy spring/summer, please join us today for our Venturing Out Live Chat at 3pm ET, 2 pm CT, 1 pm MT, Noon PT. Kate St.Clair (Kyle's mom) will be our guest speaker today. Trust me, if anyone has knowledge about venturing out, it is Kate!

See you this afternoon!

Shonda
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Posted by 2 here 2 in Heaven | Comments: (6) | Permalink
MARCH FOR BABIES - YES YOU CAN!

Mar 04, 2008 02:48pm (EST)

The day we walked out of the NICU after being there 121 days, my head was full of questions. Why were we leaving with only one of our triplets? Why did our other sons lose their battles in the hospital due to complications from prematurity? Why should any parent have to watch their child struggle through such an uphill journey? What could I do to help? Was there anything one person, just one, could do to help?

There is indeed.

The first year I participated in WalkAmerica, our team consisted of 4 people. We each donated a little money at registration then joined the crowd. I was amazed at the number of people, the sizes of the family and corporate teams...and the unique t-shirts they had on. By the time we reached mile one marker, I already had thoughts on what to do for the next year, my mind was on a roll.

We were asked to be an Ambassador Family in 2006. I remember the day I got up to speak at our Walk Team Kick-Off. The room was packed, I was nervous....and alone. RSV season was in full swing so my husband stayed home with the kids. I was both surprised and overwhelmed that so many people had turned out to support the March of Dimes.....and these were only the team captains...they had crews of people recruited to help them raise money. I changed my normal speech and told the story from London's point of view. It wasn't until the very end, when a picture of him at age 3 was on the screen that I said, "What you don't see in that picture are his triplet brothers". If there was a dry eye in the house before, there certainly wasn't now.

Now everyone in the room knew exactly what they were raising money for, they knew who they were fighting for. They knew my sons lungs were helped with Surfactant...a discovery made through a March of Dimes research grant. A man approached me after my speech and said, "You made me cry today, thank you."

I learned very quickly that our tragedy could be someone else's triumph. As our story and your story spreads from person to person, we touch them on a level that opens their hearts....and their pocketbooks.

In 2006 our team grew to 13 people. We proudly sported our colorful team t-shirts. Our donations grew too, we brought in over $5,500. The kids joined us for the first time and we truly felt like our family, and friends, were making a difference. Our walk site in West Des Moines had swelled from previous years, registering record-setting walkers and pulling in more money than ever before. I smiled at the sets of multiples. Teared up at the kids in t-shirts with writing and pictures on them of just how small they were, of what they'd over come. It was a beautiful day as we walked by the river, very peaceful. We left that day, thinking we'd truly made a difference in the lives of others and the fight against prematurity.

You can imagine my delight when one of the neonatologists London had at the University of Iowa recieved one of the eight March of Dimes research grants that year. A man that had a hand in saving my son, was now given the opportunity to delve further into the prematurity epidemic...through funding that I had helped raise.

2007 proved to be our biggest Walk (it was Walk then) year. Our family held a fundraiser in the winter, marking the proceeds for our Walk fund. Thanks to fellow Share members, I learned how to use eBay and sold items to benefit our fund.

I was honored to co-chair our Family Teams Committee and thrilled to help come up with ideas to help our families feel more welcomed and needed. We asked each team captain to make a scrapbook page, which was then complied into a large book and set out at Walk. I cannot begin to tell you how many people stopped and flipped through it, cover to cover. People were amazed at just how many children in our community were born prematurely. Babies with birth defects and angels who lost their fight were also featured.

London's preschool was happy to help us raise money, and to have its teachers and some classmates walk with us.

In an effort to show the sheer number of babies affected, our walk site handed out balloons to the children. Blue for preemie boys, pink for preemie girls, yellow for birth defects, white for angels. As the walk began to move forward, it was neat to look back and see the all the balloons. One of the coolest things was to see the family members who came out to support the special children in their lives. There were so many proud faces in the crowd.

For the first year our location had a designated Family Teams area, which allowed them to meet each other, exchange stories and phone numbers. The DJ rocked all morning, the food was great, the bouncy-house, face painting and balloon sculptors were awesome. Okay, okay....Darcy, Carissa, Crystal and I all jumped in the bounce-house, but it was BEFORE the crowd arrived.

Last year we changed our name to reflect my blog. Team 2 Here, 2 In Heaven had 35 walkers (and two more walking in Austin, Texas!). We raised $7,300! I recently found out this placed me as the number one walker in our chapter, and the number two in the state. None of this would have been possible without the kind people who supported us.

Now back to the beginning.......can one person make a difference? Yes. Through family, friends, community and people all over the country, I've managed to raise over $15,000 in three years. People are so willing to give, to support you......but they need YOUR help and guidance in doing it. They need to hear YOUR story, they need to put a face, a name on what they are donating too.

A few years ago I wasn't sure the (less than) $100 our team donated would make a difference. But think of this: Every year 1,000,000 babies do not get lifesaving newborn screening tests. 500,000 are born prematurely, sadly not all of them will survive. 150,000 are born with birth defects...of those, 1 in 5 will not survive. Just think if every parent of those children raised $100 each year for March for Babies? Now just think if we raise even more...

This year I'm co-chairing our Family Teams Committee again and am excited to see new faces on board. Our Family Teams are truly inspiring, they more than tripled last year and brought hundreds of walkers with them!

I'm designing our March t-shirts as I speak (type). My "please, please, please donate" emails are going out again. My kiddos are asking "Mom, when can we walk? I mean March!" hehe.

Today I realize that by volunteering time in my local chapter, by forming a team and walking, by raising money....no matter how big or small......I AM making a difference. I know who I'm walking for:

Kai & London & Boston, Camden, Lily Grace, Braden, Logan, Philip, Leighton, Emerson, Phoenix, Isaac & Sullivan & Lorne, Kyle, Meek, Lesley, Gabby, Abby, Noel & Rebecka & Jarred & Jacob, Hannah & Rachel, Riley, Sam, Alex, Adrian, Ryan, Rileybug, Jack, Kate, Ansley & Taylor, Quinn, Gavin, Annabelle.......and many more here on Share.

The question isn't if you should walk....because you should, we all should. The question is who are you walking for?

Shonda
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Posted by 2 here 2 in Heaven | Comments: (11) | Permalink
"ARE YOU A NURSE?"

Mar 01, 2008 11:41am (EST)

Yesterday afternoon Camden took a 2 hour nap...that rarely happens so I was excited.

London took a 3 hour nap.....that only happens right before he comes down with something. While I dreaded what it might be, I'm so thankful we have such a consistent warning sign. Right before bedtime his throat sounded a little phlemy, and he had a low fever but that was it.

He tossed and turned most of the night, despite doses of Tylenol and cups of water. This morning his temp was 103.6 and he produced that barky croup cough...my best guess anyway, he's never had it before.

At the weekend clinic I began to explain his symptoms to the nurse, asked to have his stats read and to have his file pulled up on the computer (regular peds aren't in over the weekend) so the doctor would see his history. The poor nurse kept nodding her head and finally said, "Ok, why don't you tell all of this to the doctor too."

When the doctor came in I explained that London had a rough night. While his breathing was labored and his respers were too fast, he wasn't retracting or wheezing. I offered my opinion of croup, said he couldn't be on any antihistamines due to all the scar tissue from his BPD, and also asked them to swab his throat since he complained it hurt.

While she examined him, she smiled and said, "Are you a nurse?"

"No, we just spent 127 days in the NICU with our kids." She got that 'I understand' look on her face and proceeded to check London out. What I didn't say, but thought, was 'that was just the beginning'.....our first three years were an eye-opener. At times I feel like I have should have honorary nursing, physical, occupational and speech therapies. Perhaps a minor in pharmacy.

Yep, London has croup. Poor kid, there he was in his PJs (still is) clinging on to me for dear life and begging not to have another shot. Thankfully decadron (steroid) is now oral instead of injected, though it tastes awful.

Once home he made a sad attempt at breakfast, but later got down a chocolate shake. He's been on the couch since then watching Cars. Just a little while ago he said, "I love you mommy, thank you for the medicine...but it did taste yucky."

I was happy to flip the calendar to March this morning, but will really be excited when April and May get here.

Shonda


February 003

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MARCH FOR BABIES - YES YOU CAN!

Feb 25, 2008 09:57am (EST)

The spring London was two years old, Camden nearing one, I felt the need to give back to my community. Need isn't the right word, perhaps desire is more fitting. If there was a way I could help other families through the journey of prematurity, making their road smoother than ours had been, I certainly intended to try.

But where does one begin?

I stumbled upon information for Walk America on the March of Dimes site. Ironically, my mother was a pediatric/neonatal research nurse for years......I knew just how important the research teams are, and just as importantly, how greatly funding their work is needed.

The MOD website made things look easy, yet I drug my feet a little. How could I...just one person...make a difference. At the last minute, four of us decided to form a team. My dad, husband, brother-in-law and myself headed out to the Walk. We turned in our money, just donations from ourselves, then walked. We were amazed at the sizes of some family teams, the engery, the strollers and wagons holding kids. We left thinking the next year we'd get more involved...and definetly wanted to create a cool team t-shirt.

The following year we used the online fundraising tool. WOW! It was so easy! One email blast and all we had to do was sit back and watch the donations roll in. The support from friends, family and even strangers truly touched our heats. At walk I believe we had 12 people wearing t-shirts with a picture of the triplets (an artists hardwork on how they might look at age 3) bearing the line

What might have been... Down in Texas my wonderful aunt Linda raised money for us, and attended the Austin walk. She was amazed at the sheer number of people that turned out.

We were asked to be the ambassador family for our region of the state that year. I quickly realized by telling my story, by letting others see London and Camden's sweet faces...and hearing that two of our boys did not survive...we were really making a difference. Raising awareness and fundraising go hand-in-hand, no doubt about it.

The following year (last year) we stepped up our fundraising a bit by holding a silent auction. Hours of work went into securing a location, having local businesses donate items and setting up. Despite having over 100 items donated, the newspaper running a front page...and four page story...the turn out wasn't as big as I'd hoped. We raised $1,700 for our Walk fund, though I decided in the future I'd stick to using the online fundraising tool...its just so easy.

The teachers at London's preschool were happy to involve the kids, allowing us to send home letters to each student. Our turn out at Walk humbled us. Thirty-three people comprised Team 2 Here, 2 in Heaven. Teachers, classmates, his speech language pathologist, family and friends walked along with us. Our team t-shirts were chocolate and orange........but the preemies in our group wore bright yellow shirts with black writing that said NICU Graduate.

Each year we've more than doubled our fundraising, something we could not do without our wonderful family and friends, friends of friends, and friends of friends of friends. Last week our new March for Babies flyer came in the mail. I opened it up, eager to see the new layout....but my eyes were drawn to the last page where the top fundraisers for the previous walk are listed. I was listed as the number one walker in our region of the state, and number two walker in the entire state.

Two years before, I wondered how one person could make a difference. A few days ago I understood. By telling our story, getting involved in my local MOD chapter, joining Share, fundraising......I AM making a difference. So can you.

This year Carissa (miraclemonster) and I are once again co-charing the Family Team Committee in our area. Last year we had a great turn out, hopefully this year will be too!

Please join us February 28, 3 pm EST/ 2 pm CST, for our Live Chat. We'll be discussing March for Babies.....how to use the OFT, recruiting walkers and growing your team, and how to get more involved in your local chapter.

Shonda
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WHY TRY TO BE ORGANIZED?

Feb 20, 2008 12:16pm (EST)

Today I took London to the Peds office for his booster shots. He wasn't able to get them last week due to strep throat, a high fever and meds. This morning I tried to be as calm and organized as possible.

1. I dropped Camden off at my sister's house...no need for her to witness boosters before she receives her own. (Yep, my sis is staying home with Tatum now ).

2. I explained that he needed four shots in his legs with medicine that would help him stay healthy....and hopefully out of the doctor office.

3. Promised him a trip to the store to pick out a new toy afterward...and a McDonalds happy meal (drive through of course, its -1 degree here today).

After checking in at the office, hanging our coats up and assuring him things would be fine, the nurse came out. She then told me that they were out of the polio vaccine...more should arrive soon.

Imagine me on a cold day, having arranged for Camden to be elsewhere, preparing London for his shots, freezing my toes off...."What?" After asking if there was a reason the office didn't call me instead of waiting until I arrived, she said I could reschedule if I wanted to.

Me, biting lip...."No, let's do the other three today, the polio next week...or whenever it arrives." Seriously, my March of Dimes preemie...not getting his polio shot...feel the irony???

Thankfully, parenthood as taught me no matter how organized I am, other things are out of my control.....so I always leave a little wiggle room with the kids. Wiggle room? Yeah, that would be me NOT mentioning that London wouldn't have to have shots again until he was in high school.......thankfully I hadn't promised that...trust me, he would have remembered.

Three shots and band aids later, my tearful guy still clinging to my neck and his stuffed cat Gilbert...we went back to waiting room to pay. "Any chance when I come next week I can get out of the co-pay...since the office didn't let me know ahead of time that we'd have to come back for another shot...and office visit??" Opps, did I just say that out loud? I did! What can I say, it was frustrating. The receptionist meekly smiled, then shook her head.

Two toy horns later, belly full of McNuggets and apple dippers, my little guy is doing just fine. Now if only we didn't have to go back in next week....oh well. Actually, London surprised me, he did pretty good. Hopefully I can get those sticky band aids off tonight without too much pulling. I'm a sap, it still breaks my heart to watch my little...big guy...tear up.

Shonda
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Posted by 2 here 2 in Heaven | Comments: (12) | Permalink
BIG BOY NOW & LOVIN' OUR PED

Feb 13, 2008 11:19am (EST)

Five years ago, I didn't allow myself to look more than a few months ahead in London's future. After a crash course in micro-preemies, prematurity and NICU's....I had an idea what a first year medical intern must feel like...except I was much, much less prepared. Interns go to and from work, they can leave the job behind each day. I was walking bare foot up a hill, in two feet of snow, with no sun visible in the horizon, for a long time.

As a mother, I admit I'm biased, yet I am not blind. There have been times when I see something so clearly affecting London, that others cannot or do not chose to see. The past few years I have been so focused on his medical, physical and social issues...that at times I felt more like a professional advocate than a mother.

Today at London's five year check-up, our Ped once again marvelled at how far our little guy has come. He had reviewed the educational and developmental reports from the University and shared his favorite part with us.

"A miracle, they all call him a miracle." He then smiled as if to say, we already knew that.

Since London has strep throat, is on medication and still very under the weather, we agreed to postpone his booster shots until next week..which gave us a little more time to discuss Wonder Boy.

While I agreed with most of what the staff at the U reported, I strongly disagreed with the person who told us, "He has low muscle tone in his legs and will never play organized sports. Forget about it."

Like I said, I am biased, mothers should be. Given what London has been through, I'll challenge just about anyone who tells me he "can't" do something.

I love our Ped....when I voice a different opinion, he hears me out. He smiled at said, "Well, I completly disagree with that particular finding. London has come so far, I think he can play sports. He may not get a scholarship to college for it, but he can play." Hehe, I agree.

I'm not the mother who puts her preschooler in activities now because I think they'll end up with a starting position on the varsity team someday, a scholarship for college, or on an American Idol stage. Children are suppose to enjoy childhood, it is meant to be fun and full of adventure. Exposing them to a range of activities is good for them, limiting them to one or pushing it for a further agenda........well, just not my style.

The reasons we placed London in soccer, baseball and basketball were to see how his coordination, strength and social skills would do. Not to see if he could kick, shoot or throw a ball farther than the other kids. Maybe if the boys were born full-term I'd be secretly hoping they all get started positions on the high school baseball team. But, I believe everything is relative. London started his life 14 weeks too early, at 1.12 pounds. If he is going to be a professional at anything, it might be a scuba diver.....he certainly was intubated long enough for it.

Five years old. Five, wow. He's a self proclaimed big boy now. London has knocked down so many hurdles in his path, he amazes not only his family and friends, but the doctors and specialists who often do a double take when I mention he was a surviving 26 week triplet. Of course they can see the other factor that certainly played into his long NICU stay, a 'whimpy white boy'.

Today there are still lingering effects of prematurity. London is in the 10-25% range for height, 3% for weight. He could still wear 24 month shorts this summer...except they are much too short. We've decided to let him continue next year at the Montessori school, delaying public kindergarten for a year, given him a chance to expand his educational skills.

Yet, all in all.......he is a miracle. He skips, he talks a mile-a-minute, he finger paints and walks barefoot in sand........all things he struggled with in the past. In the last twelve months he's only been on heavy steroids twice to fight off illness. We are able to rely less on them and more on his inhaler.

Perhaps the sweetest of all, is his personality. At least ten times a day, for no reason at all, he'll walk up and give me a big hug while saying, "Mommy, I love you".

Sorry, this was a bit all over the place, hope it made sense.

Shonda
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FEBRUARY 8 - MORE BIRTHDAYS

Feb 07, 2008 09:33pm (EST)

Happy fifth birthday to my 26-weekers. As we spend the day at the Botanical and Science Centers, watching London explore his curiosity...we'll also be thinking of Boston.

Boston was the athlete in my tummy, always active, always kicking London...until London would kick back. Every single day from 4:30-6:00 p.m. a wrestling match shook me silly.

Boston, Baby B, was here just two short days. After suffering a bilateral bleed, and several complications from it, we were faced with a choice no parent should ever have to hear about. Our "choice" for lack of a better word was wasn't which treatment to purse, which drug to try....but weather or not to let him go.

I honestly sat there, in the NICU, and looked at Boston as an individual...not a multiple. Had I thought there was there any hope that Boston could have had any sort of life....no matter the circumstances, no matter the special life-long needs, no matter that our hands would be full with triplets, I would have fought to keep treatments going.

There was no hope. There were no smiles. Begging for answers, for numbers, we were given harsh statistics. Five percent chance of him making it through the next few days, after that...less that three percent chance he'd ever leave the NICU. Not the numbers we wanted to hear.

Not wanting to say the words, yet feeling them, I waited quietly as doctors and nurses told us the same things. Finally, my husband said, quiet as a mouse, "We love him so much, we have to let him go." I simply nodded my head.

Thank you to the NICU nurses who told us you got your miracle...the miracle that your parents loved you enough to let you go.

Someday, long from now, I want to walk into Heaven...God willing, and see you running, jumping, laughing, talking...doing all the things they said you never would. Until then, please know we made what we thought was the best decision for you....because we loved you, and love you, so very much.

Mommy

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Thank you all so much for your support and kind words over the past few days. Share has given me something very special through all of you. Thank you.
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FEBRUARY 6 - HAPPY BIRTHDAY

Feb 05, 2008 10:30pm (EST)

Someone once asked me, if we had had the choice of having one full-term healthy baby, or going through the experience we did with triplets, what would I choose? While I would never wish prematurity or pain on any baby, or family, I can't help but think we were lucky to have Kai for the 15 days we did.

Do I think everything happens for a reason? No.
Do I think God only gives us what we can handle? No.
Has my faith grown through this? Hardly.
Yet....I believe.

I believe Kai is in a wonderful place that holds no pain or tears. I believe he is with us in spirit, and at moments shines through London.

Strangly enough, I believed the NICU nurse who told us...when things were grim..."Sometimes I think if you tell them, 'it's okay to go' they can hear you." So I did.

I cradled my first born, who so diligently carried the weight of his brothers on his shoulders, literally, for 25 weeks. I held the baby that was so calm in utero, yet fought so hard once born. The one who arrived two days before his brothers, the one I thought we'd take home first. As much as I wanted to kiss and squeeze him, I held him ever so gently.

Mommy loves you, mommy will always love you. It's okay, you can go. It's okay.

And so he did. Before the doctors shut off the machines, after they realized nothing else could be done.....he went, he left on his own.

As five balloons rise in the sky today, know you were loved...know you are loved. Happy Birthday, Kai.

Mommy
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FEBRUARY: TOO FULL

Feb 01, 2008 12:29pm (EST)

Last week as I was writing yet another event on the calendar for February, I noticed that the month was filling up with events, too many for me to keep track of. This morning when I flipped the calendar to February, the history of events this moth holds starred me in the face.

Kai's water broke and we held our breath....four days later he arrived at 25 weeks. Two days later London then Boston came in emergency fashion. A day and a half later I heard the term IVH and learned what devastating effect it could have a on 26 weeker. Hours later Boston was gone, a decision that while deemed best for him, my husband will forever struggle with. With two boys and a wife still in the hospital, all very sick, he quietly agreed to hold a memorial service at a later date.

Two days later I held Kai for the first time, the next day when it was Mike's turn, our baby was pronounced too sick to be held. On Valentine's Day London had the first of two intestinal surgeries. At 1.8 pounds, we sat in the waiting room not saying a word, wondering how he might survive, yet he did. A week later Kai's little body had battled enough, we watched our second son pass on.

I'm tired of February, tired of the feelings it brings...yet it seems to come every year, like clockwork. What should be a happy birthday for us and London, will also always have Boston's should-be-birthday attached to it. Why couldn't he have had his own day, like Kai? February holds so many dates of emotion, surly it could handle one more.

Every year we build up with three birth dates, then fall down with two passing anniversaries. While I think it is important to remember and honor Kai and Boston, their short lives here.......sometimes I think it would be easier to flip from January to March.

Shonda
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