Understanding

A lot of people ask me how Carter is doing, so I thought an update was needed. I would describe our situation as understanding...we are starting to understand Carter and what helps and doesn't help him. He hasn't changed his breathing issues, still turns blue and pants like a dog almost always (so sweet, a little friend was listening to him and asked me when he was going to stop running), and he is just never seeming to be comfortable (most likely due to breathing, oxygen stuff). But we feel like things have changed a bit because I'm just getting used to him, I'm understanding Carter better and that makes a world of difference in our home. What we've learned...

• When he started sleeping 9-10 hours a night our life changed and mommy found her happy place again.
• The apnea monitor has brought such peace in our situation and is not going off unless a disconnect is happening (which is about 5 times a night) and we pray it continues to only be disconnects.
• Carter is comfortable on his tummy and stops panting when on it. He sleeps calmer on it and his breathing is more controlled. His pulmonologist says to go ahead and let him be a tummy sleeper for oxygen sake and keep the apnea monitor on to prevent SIDS.
• He will only stay calm in his stroller when on his tummy, therefore a new stroller that reclined all the way was sought after.

We had to ditch the infant car seat and put him right away in the larger one because his sphincter was getting too much pressure on it by his large tummy which made him vomit the entire ride and scream...mommy was much happier when we figured this out.

• The doctors have told us to prioritize where we take him because in their words "He cannot get sick". Because Carter already struggles to breath at times, a cold will only shut things down more and cause concern and A LOT of blue.
• Our insurance approved RSV shots at $2100 a piece times 5 shots...YIKES thanks for insurance, thankful Obama Care hasn't started yet (oops, did I let that slip, sorry:)
• McKenzie sticks her finger in his mouth whenever I'm not around, which produces a anger in me unknown to even me, since my entire goal is to keep this baby healthy! I have not cut the finger off yet, because that would just show her something else she could use her scissor on.
• Mommy should not have been the first to cut his hair, woops.
• That the phrase "That is typical of Down Syndrome" haunts me in my sleep, and makes me question if the docs just use that as a cop out so they don't have to actually think.
• That spending $50.00 a week on Alimintum formula stops his crying.
• Make that an extra $10 to add the Gripe water in so he will produce a burp or two.
• Carter has large amounts of gas in him and when it comes out...the burp makes my hair move...powerfully painful I'd imagine.
• He must have a high pain tolerance.

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• That Carter's Bear needed to lose some bandaids.
• Carter's smiles are open mouth and melt my heart and helped me tremendously when I needed it most.
• Coffee has been consumed more in the past 2 months than in the 12 years of our marriage.
• A barium swallow has been scheduled because we believe Carter is aspirating. A laryngoscopy has been scheduled to look into his panting and retracting of his throat. A bronchoscopy will most likely follow that.
• Carter has developed pectus excavatum which makes me sad for him.
• He had a botched circumcision which makes his daddy even sadder for him .
• He is huge! 13 pounds already. There is a different growth chart for DS and he is 90th for height and 64th for weight. Within in months he will weigh more than Kenzie (kidding...well not really)

• He has developed a cyst on his neck, which will need to be surgically removed.
• We've been told it is just a minor surgery over 8 times which equals 8 minor surgeries coming up in the future and makes me want to shake the docs that say "It is just..." obviously they have never been a mommy to say "It is just". He faces a major heart surgery in his future as well...that never gets the "It is just" added on.
• We are getting a schedule closer to being established. He eats every 3 1/2 hours about 4 ounces now. He sleeps an hour after until his next feeding. That is how it is "suppose" to go in my mind, but God is always working on my need for control, and my thoughts often go out the window, but a schedule is getting there.
• Having somebody bring McKenzie to school in the mornings has saved my mental life. (Oh I never mentioned that my daughter was in school did I? That is a post I need to get going!)
• Zachary still loves his little brother. Just today brought him a baby size gun to hold... I tried not to yank it out of his little hands and scream "Germs", "Calm down Kristen" are words I tell myself often when thinking about germs.
• McKenzie loves her little brother in ways that grind my nerves. period.
• When the doctors told me to keep Carter isolated, I cried because I know that life, walked it, and just took my first breath out of it, and am now slowly hanging my head and walking back into it. Overwhelming.
• When they mentioned he was most likely aspirating, tears came because I know a little girl who aspirated and pneumonia clung to her like a terrorizing demon. Overwhelming.
• That his hair still rocks!
• That I REALLY feel I deserve a new camera since mine it so stinking unpredictable and I have an adorable red head screaming to be photographed. Uugh.
• I miss pregnancy intensely at times (although it was close to the worst 9 months ever) and mourn over not nursing Carter. Don't know when the sadness will shake itself off.
• Stretch marks are something beautiful when pregnant but when not, they are something a word just really can't describe and I see why people spend a ton of money to prevent them now!
• He loves his bath time. It seems to really calm him. And yes, his stomach is unusually large...say it with me "Typical of Down Syndrome" He lacks the muscle tone to hold it all in like we can. Plus he is FULL of gas.
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• He "sings" while he sleeps. Sounds cute, but red flag for respiratory issues.That when you see my baby I need to get brave and tell you not to touch him. Sorry. Conflict. Difficult.
• That perspective is still my friend, has been for a few years now. Carter is alive and each pant reminds me of that, and each struggle means I have a baby to struggle with.
• That God is still good...all the time.

McKenzie's Importants

While I was feeding Carter the other day, Kenz got ahold of a camera and began her own photo session. It was fun to see what was important to her.

Dear Carter

Carter,

I've sat down to write this letter multiple times in the past 10 months. When I found out I was pregnant, I sat down to write you, then before our ultra sound I thought surely I'd find the right words...then after I found out I might lose you I desperately wanted to tell you some things, and while waiting for amnio results, I figured surely you needed to be told...but perhaps there are no words to accurately describe what my heart needs you to know.

My sweet Carter, immediately tears fill my eyes with just the beginnings of a simple letter to my youngest son. You have changed my life in ways that a word could never describe adequately. You have touched the world, you have wiggled your sweet way into the hearts of strangers, and as your big brother has said...you have told more people about Jesus than any of us ever have.

When I was just a young girl with blonde pig tails bopping around, I never imagined my life would be as it is today. If I had been told the breathtaking journey I would be taken on, I would not have been able to comprehend it, that God would use me to bring Him glory in such incredible ways. I would have never understood the feeling His grace can do to me...the unworthiness I often feel when given it, and I would have been terrified with the overwhelmingness of the hurt and fear the journey takes. Carter, my journey to you has been incredibly terrifying...I feel as though I waded snake infested waters, dodged arrows, was pulled out of quick sand, and was beaten down over and over again to get to you. Today I wonder why I'm so tired, and I'm positive it has much much more to do with than just feeding you in the night. I feel as though I fought with every ounce of my body to have you, funny, I did nothing really, but I feel as though I ache from fighting for you. I wanted you so bad, from the moment I spoke my first prayer that pregnancy would work, I wanted you desperately.

Our journey with you, although breathtaking and rough, yet more beautiful than one could ever know, has only just begun...I can hardly believe that. When it is you and I, just us sitting in our chair, when there is time to just study you without your brother or sister around to take you away from me...when it's us I can hardly believe God's grace. Carter, I got to keep you, can you believe that? Because I sit here in tears still baffled that you are mine and I get to be yours. As I sit and look at you, I marvel at the work God must have for you...you were created for such a purpose, that I am sure of. You have proven all doctors wrong, you have surprised us all and God has revealed miracles here on earth while He handed us tickets for the front row seats. The Grace is breathtaking, mind blogging, and humbling.

Yesterday, while we sat and Mama talked to you softly. You saw me, really saw me...we connected. Although the smiles are slow to come, no soft coo, your face showed me you loved me and needed me. I saw in your eyes expression for your mom, softness on your face...your brain told your body that we share a deep love.

Love, from the very beginning we shared a different kind of love. I would assume not many mommys know this love...it is unusual but I call it a fighting love. From the very first day, I had to fight to keep you and a love grew that seemed desperate at times, desperate to hold onto you, to fight to know you like other mommys get to know their babies. The funny thing was, there was absolutely nothing I could do to change the situation we were in, no amount of "fight" would gain me control. I learned to let you go, which was and still is the most excruciating pain I've ever experienced. I think that a fighting love means letting go and that is the most disgustingly beautiful feeling in the world, yet the most devastating at the same time.

I remember sitting on the beach asking God to let me tell you the story of Carter. I knew that He would be the perfect one to tell you, I knew He would be the perfect Daddy for you, but I asked Him to let me keep you. I can't wait to whisper your story to you Carter, to introduce you to the God, the one and only God, the one who whispered breath into you, the one who is all powerful and all knowing. He is quite something Carter. He let me be your mommy, can you believe that? Because I still cannot quite grasp that thought at times.

When you were born I was scared to death to meet you, yet a huge part of me needed so badly to know you, to touch you, to be your mom. When they brought you to the NICU and I left you there, the love fought harder, that fighting love.

When they explained your heart issues, when your little chin turns blue, when you try to catch your breath, when we seek help from the specialists, the fighting grows, a love quite unusual and unsettling at times. There has not been much calm.

You smiled at me 7 days ago. You smiled...at me. The fight left for a moment and I loved sweetly and softly, a love a mother is quite familiar with took over and pride filled my heart. You are breathtaking Carter, always have been, from the very beginning. I smile as I still cannot get over your red...the red eyelashes, red eyebrows, and shocking red hair. I bet God chuckled when he designed and created your genetic makeup. My very favorite part of you are your chubby hands, the hands I and the rest of the world prayed for. Those tiny hands that just would not open, forcing me to look above and stay focused on the One. Now, I smile as those hands open often, and when they clench I see a couple of those fingers overlap almost every time, making me wonder just what kind of miracles took place inside my womb before I ever met you. And there are those tiny feet, the feet that a radiologist just the morning you were born confirmed that indeed were clubbed. Doesn't God blow you away son?

Carter, your verse is "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and he will make your paths straight." I marvel at those words and how they were picked for you, well for me really. I know we've just begun 10 weeks ago, but you, my little man have changed my life and I cannot wait to walk the journey with you, as scary as it may seem at times, we serve a Big God, one that tells us to lean on Him and that he will make the paths on the journey straight.

Love,

Mommy

Lord, again, i am in awe of you. Thank you for allowing life; for picking me to teach him You. Equip me, because so often I feel inadequate. Sustain me on the journey, help me to keep my eyes open to see you each day, to expect you because frankly, You're always there. Guide Carter to you. Open his mind to comprehend your death, burial, and resurrenction and what that has given him. Instill in him a sweet passion for you, a connection with you. Keep his eyes focused on your things, your character Lord. Direct him with your discernment and wisdom and bring sweet friends to come along him and show him your love, a love that is nurturing, patient, blind to the differences. Thank you for choosing me, for knowing that I can do this. Thank you for the support I feel already from a few special friends, for allowing people to fall in love with a boy named Carter, teaching them to pray with a fighting love for him, which has now left us with a team already loving our son. Thank you for how you work, even though it stings and sometimes sting is such a puny word to describe the pain; but thank you that the sting brings me closer to you.

Significant

This plastic mug is significant to me. It was June that we decided that we needed to show Carter our favorite things...we jumped waves together and experienced Sea World with him. That was before we knew he would live. I remember walking through a store at the Sea World playland...my eyes automatically were drawn to the plastic mugs; if you have been reading for a time, you know our family has coffee time every Saturday morning and each kiddo has a plastic mug that has meaning behind it for them. There was a bright, obnoxious Elmo mug and it happened to have Carter's name on it. Immediately I began to sob into Kirk's shoulder, kids looking petrified and strangers puzzled. We were in our family place, Sea World, and here was the mug Carter should have and I was begging God to let me keep him.

Kirk surprised us last week by packing up the car and throwing us in for a trip to Irvine to see our good friends who just moved there. We needed a break from life and it was so sweet. On our way home, we stopped at Sea World for a bit. Carter was there, in my arms this time. I cannot tell you how amazing that was. I marched right to that Elmo store, found the obnoxious Elmo mug with Carter's name on it and bought it proudly for my newest son. Significant.

A few months ago, I sat on a beach tears streaming down, asking God to allow Carter to jump the waves with his daddy, but surrendering to Him that He may be the DADDY he gets to jump with. Last week, Carter slept in my arms, bundled up while his sister and brother screamed as they ran from the waves with their daddy. Significant.

This was Carter at the Shamu show in June. The last picture is Carter at the Shamu show last week...in my arms, where he should be. Significant.

Christmas Photo Sessions

I have already had several inquiries about Christmas photo sessions. I am amazed at how on the ball you people are! Yes, I am doing sessions again this year. If you are interested you can email me at kristenplamondon@q.com for pricing and details. Looking forward to capturing your moments this coming season...can you believe it's almost here? Gulp!

Conversations with the Z-Man

I made the family cookies this weekend. Pool Zac was sick with double ear infections and pink eye. So, cookies were in order as long as he kept his germs away from my kitchen. Well, I burned a batch, I suppose that happens when a newborn is in the house. Zac saw the burnt bottoms on the cookies and got a huge grin and said "Wow! Mom, you even got the chocolate to go on the bottom!" I love being the hero...shhhhh, we don't need to tell!

ramblings from a sleep deprived mom

I'd love to say life is falling into an easy pattern in our home, but it aint so. I am a Baby Wise mom...you know, the book that teaches you how to get your child to sleep through the night, get on a schedule, make life fall into place. I thrive off books like that, if you've read this blog at all, perhaps you've come to the realization that I am simply a control freak.

Carter is not a Baby Wise baby and this baffles me, but I am accepting it (not well, but trying). The feeding schedule is pretty good, the nap, wake time stuff is just crazy in the air. When Carter is awake, he is restless and a bit wild...we think it is from his difficult time just getting breath and enough oxygen. He pants wildly while he is awake, indicating a small airway and him fighting it and the end result looks like a panicked pant. It is enough to drive me over the edge by lunch time. Throughout his sleep periods he gasps for breath and makes incredibly scary noises which leave one to think surely he will not survive the night or nap. Carter's low muscle tone inside contributes to his breathing issues and noise as well. So, life has been, let's just say overwhelmingly not easy. And after a few years of that, I have been known to get a bit upset over the past week.

A sleep apnea monitor was delivered to our house this week, and I slept for the first time in 7 weeks. My exhaustion wasn't from waking to feed a baby, it was from standing over a chest and willing it to rise and fall. Well, now there is a little machine that will keep track for me. (it just now literally went off as I'm typing these words, sending my heart to my toes...uugh!) The alarm on that thing is louder than our fire alarm...crazy! If his heart goes too slow or fast the alarm will sound and if he stops breathing the alarm will sound.

We've already seen pulmonologists, cardiologists, geneticists, and the regular doc (5 times)...this kid has McKenzie beat. It took her 2 years to gain a bunch of friends, Carter accomplished it in weeks. Carter has two minor heart defects, which we knew about in the NICU, but had explained better to us. He has a cleft mitral valve and an Anomalous origin of the right coronary artery left sina of valsalver. Whatever huh? Basically the latter one can be an issue when Carter gets more active (this is the common disorder that high school athletes drop dead when running hard). So, we are looking at surgery probably within 7 years. But now that Carter has been turning blue, we'll see what the cardiologist has to say.

McKenzie cut her hair down to a half an inch in many splotchy spots, I tried not to kill her when I saw her hair all over the floor...I succeeded. Seriously, can we say her life has been turned upside down this year and she is paying for it big, as are we.

I started crying last week when I couldn't remember the last time I really told Zachary I loved him. So, I'm trying to slow down here, force myself to remember why I'm here. I'm trying to do more than survive, I want to do this well. I find myself staring at Carter hunting for traces of blue on his face and forgetting to "see" him. I am praying that the stress I feel will not rob me of the moments here. I was so stressed about McKenzie's stuff when she was a baby that I cannot recall a lot about that time, I am determined to not let that happen now.

Kirk and Zac are home for two weeks...music to my ears! I asked Kirk what he wanted his break to look like, he said he didn't know, so I said "Let me tell you want I want it to look like...I want to sleep, start working out, and dust off my Bible." So, we'll see! Tomorrow starts it all! Yeah!

Been thinking and praying a lot for a little guy named Paxon. Paxon is on the Plamondon's mind. Hope you're praying too, one thing I've learned over the past year is that prayer is a super big deal! Pray people!

Halloween costumes are on my mind lately. Zac...Darth Vader, Kenzie...wavers between Commander Cody and Princess Belle (????????I Know), and Carter will be the pumpkin his brother and sister were. Halloween is always an interesting time in our home. I grew up dressing up and eating candy, Kirk grew up not celebrating it. So, makes for some interesting times. After 12 years of some steaming discussions, I think we've reached a great agreement, the kids "do" halloween, as long as we show the Light to the neighborhood. We pass out the LARGE candy bars with Jesus "stuff" taped on, and we make it a point to have our home welcoming to get to know our neighbors better and make relationships deeper. Win win I suppose. So, if you're itchin' for a good candy bar, stop by and see an adorable pumpkin with red hair!

Well, my little man and BIG man are asleep on the couch, have no idea what Kenzie is doing (NOT GOOD MAMA!) and I'm sure Zac is playing star wars. Loads of laundry are pumping through my machine...I'm off!

Sometimes you catch a moment!