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Sunday, November 30, 2014

Two Months of Knowing Heaven on Earth- Mallie Lynn


The past month has been anything but easy.  We watched you fight your body every moment you were awake as we tried to find answers and some way to make you feel better.  We didn't leave the house unless it was for a doctors appointment or a rare walk outside.  We learned that you are so loved by so many as friends and family covered you in prayer.  Thankfully God answered us quickly.  This past week we made a trip to an allergist and then to a GI specialist at Cinncinati Children's Hospital to confirm a food protein intolerance.  We are now cutting dairy, soy, oatmeal, rice, and eggs out of our diet and hoping this is the final answer in your journey to a happy baby.  Over the past few days we have seen you sleep more and scream less.  We are hopeful that we are on the right path and will soon see the real Mallie Lynn.  It will take 3-4 weeks for your intestines to heal itself and so in the mean time we will hang in there, hold you tight when your hurting, and rejoice in the growing calm moments. 

Weight: 10lb 8oz
Height: 21.5in long
Feeding: average every 3-4 hours
Sleep: Well at night, feeding every 4-6 hours
Awake:  Large chunks of awake time during the day, usually mid morning, afternoon, and early evening. 
Loves: sound of the vacuum cleaner, being held over our shoulder with pressure on your belly,  holding your head up, nursing, being swaddled, Rockn'Play, bath time (while in the water), gas drops, sleeping, Henry's voice, squeaky floors.
Dislikes: hiccups, gassy belly, being cold.
Temperament: Colic/Fussy when awake, usually in pain.  In the last week we began seeing more calm awake time and learned how relaxed and observant you are.
Diaper Size: 1
Clothing Size: 0-3months  at the beginning of the month, ending in 3 months!
New Milestones: After a dozen doctor's appointments, tears, and prescriptions, we finally have an answer for all of your pain, Food Protein Induced Enterocolitis FPIE Smiles!!!  You have started smiling upon seeing us after waking up or when we talk to you and it is the sweetest sight!

Cheers to more smiles ahead and watching your pains fade away.  We love you darling girl. 

Wednesday, November 19, 2014

Henry the Great

 I could hang out with you in a tree for ages dear boy.  I've said it before and I'll say it a million more, you just get better every day.  Your truly a little boy now and seem to be going on 20 instead of 3.  You have stepped into the role of big brother with such grace I can hardly believe it.  You are loving and affectionate, patient and thoughtful when it comes to your little "Malla" as you affectionately call her.
 You are a little comedian and keep us laughing every day.  As your vocabulary and understanding of the world grows the more we see your personality shine.  Your adore sports of all kinds and have spent the last few months in our new home playing golf on your "golf course", running football plays around our living room, and hitting balls out of the park as you slide on the floor for a home run.  You tend to be obsessed with whatever sport is in season.  You pretend to be Rory Mckilroy, Jordan Speith, Joey Votto, Tony Romo, and now with the start of basketball season you have about 10 personalities that come out while swishing the net.  From Karl Anthony Townes to Dominique Hawkins there isn't a player you don't know and love. 
You've grown into a little love bug and your unsolicited affection brings joy to our hearts.  We enjoy you immensley and you are a bright spot in every day. I love to have you catch me off guard with the clever little lines you come up with.  Bringing your banana to me and singing "peel it up, peel it up" to the tune of Taylor Swifts Shake it off I can't help but chuckle on the daily. 
 Life has been so busy lately as we moved into a new home and welcomed your sister into the world.  It makes me a bit sad that I haven't had the time to document moments with you. 
I love the big brother you've become.  I love your gentle heart, your sensitive soul, your independence, and imagination. 
You love music and pretend to play every instrument under the sun.  After attending a football game you became obsessed with the band and can often be found marching and playing a drum, trumpet, or cymbals. 
One of your favorite activities is listening to music and you request your special playlist at LEAST once a day.  Your list of loves lately include: Thomas the Train soundtrack, Tomorrow, Hard Knock Life (yeah not the Jay-z version), Ring of Fire, Walk the Line,  Hall of Fame (a song you heard on a commercial with Rory McKilroy), and your all time favorite (listen to it 8 times in a row kinda fave) Jolly Mon by Jimmy Buffet.  Jolly Mon also happens to be your favorite book, and we read this lengthy tale of pirates and islands so often that you have literally memorized almost every word.  This has sparked a fascination with pirates, guitars, and the ocean.

My favorite, don't wanna forget Henry moments and sayings of late:
  • "Breaksfist" for breakfast
  • "Gouwls" for girls
  • "When I grow up"...........I'll fly a jet and go very high in the sky, I'll get to have bubblegum, I'll get to use a big boy fork.  
  • Raising your shirt to show us where your food has gone, no matter if we are in public or at home.  
  • "Daddy, is your food in your hairy belly?  "  
  • "So......, So it goes like this" as you precede to give us a detailed story on how to do something.  
  • "This is my favorite ____ of all"
  • The oldie but goodie "Let me show you.'
  • "When I was a little boy".......I use to play with that toy, drink chocolate milk, sit in that chair.
  • "Come here guys, come here" as you bring your arms around your daddy and I for a group hug. 
  • Your need for routine and the fact that your nightly ritual now includes having me tickle your back and sing to you.  My heart melts to hear you make the request each and every night.  
  • Lately I've been checking on you in the middle of the night as I get up with your sister to make sure your covered and snuggly.  I have on occassion found you sleeping like you did as a baby, curled up like a ball with your rump in the air.  *ahhhh I swoon.  

Oh the places you'll go sweet boy, and I want to be there for all of it. 

Thursday, November 13, 2014

Hope.

There's really nothing that can hurt your heart like seeing your baby in pain.  It breaks you in two and leaves you feeling an unimaginable amount of helpless.  After 7 appointments to the doctor in two weeks you'd think we would have answers.  
But you have stumped not just your mommy but three pediatricians as well.  We are fairly certain you have a dairy intolerance.  So as of two Sunday's ago,  Nov. 2 I began cutting ALL dairy out of my diet and was directed to pump and freeze my milk while feeding you Nutramigen formula, one of the few formulas without dairy protein in it.  Pumping and bottle feeding feels as close to feeding twins as I ever want to get.  Not nursing you at all was a bit emotional for both of us.  (maybe more me than you).  Which was all fine and dandy because the thought of you being better was so delightful it made it worth it.  We were hopeful.
Nutramigen gave us the slightest improvement in the amount of crying you did during the day but it was not the answer as we continued to see crying associated with gagging and hiccups.  So on Friday Nov. 7 we were told we could reintroduce breast milk and started you back on Zantac for possible reflux issues, and we were hopeful.  Friday night = muy miserable.  Heart breaking and tear filled by us both. 

Then came Saturday.
All of a sudden a new baby appeared.  Out of nowhere you were alert and happy, awake and not crying!?  We naively thought we had turned a corner.  Then Sunday reared it's ugly head our way and bam.....right back to it.   This presented even more of a mystery both to us and our pediatricians as to what might be causing your pain.  This week you began a compounded dose of Prilosec hoping you were just not responding well to the Zantac and needing a different drug.  Again, I let hope creep in....

Each day this week I feel I've watched you get worse.  The screams have been here more than the crying. As for the awake and calm times.....a 10 minute stretch feels like heaven.  You continue to sleep very little during the day 2-3 hrs has been as good as it gets, and we work oh so hard to get there.  You are calmed by the sound of a vaccum, and so we try it often leaving us with the cleanest carpet in town.  :)  
Today our doctors consulted with a GI specialist at UK.  By his recommendation we are to start an elimination diet, taking all the high allergen foods away from your system including wheat, soy, dairy, eggs, fish/shellfish, and nuts.  We are also having appointments set up with an allergist here in town to consult us on further reccomendations.  It's all not enough.  Not a good enough answer.  So for the first time on this journey, I'm not feeling hopeful with our solutions.  
 I plan to take our advice one step further with the Dr. Sears Total Elimination Diet.  For the next two weeks we will eat potatoes, range fed turkey and lamb, pears, pear juice, green/yellow squash, and rice.  I consider myself a bit of a foodie so to say this is going to be hard is an understatement, but Puhhhhleaze nothing can be harder than watching your newborn baby girl in this much pain.
Those fleeting moments with you on our one good day were so refreshing and wonderful and I'm craving the day when we get to see that from you again.  I have spent so much time in prayer the last month I fee like I should be wearing a habit.  Through this journey we have felt lots of love for you as people have reached out to give us advice, listen, and offer support, but most of all prayer.  Though God has not yet healed you into the happy healthy baby I want you to be I know he is here.  I have felt broken, lost, and knocked down many times a day yet have somehow been able to rely on him and hear him say let me be your strength.  So for those prayers that have been said I am so thankful.  I can say without question I would be 7 states of depressed right now if he weren't carrying us through it all.  

We all love you so dearly sweet girl, and are anxiously awaiting the days when we can all laugh, smile, and stare into your eyes as a family.  Happy 7 weeks to you darling, may the next 7 be super bright and cheery and filled with giggles from your growing belly rolls.  Get well soon my angel.  

Love, 
Mommy

Sunday, November 2, 2014

Our struggle

It started with noticing your lack of sleep.  Though 2.5 years had past since experiencing a newborns habits, something told me that you were awake far too much.  Then came the sudden awareness that you were working far too hard to make your belly feel better.  After every feeding followed grunts, screams, and pulling or tightening of the legs.  For the first two weeks I thought it was normal, every newborn is gassy and every newborn needs gas drops, every mom calls the lactation room and nursery multiple times a night to get answers.....  I expressed concern at your two week appt and was encouraged to hear that you were likely experiencing the pangs of an immature digestive system.  "Watch what you eat, no gassy broccoli or onions" etc. etc. I was told.  Yet it continued on.  Eager to nurse every 2-3 hrs your weight shot up and showed in your growing cheeks and rolls.  The only time you have ever really been happy is when you nursed or were sleeping.  So the vicious cycle became, nurse, burp, scream/cry...........I would try gas drops, walking, rocking, colic hold, bicycling legs, paci, singing, shhhhshing, swaddle but nothing made you happy.  Until finally we would nurse again to fall asleep or you would exhaust yourself into a doze. 
You're nights have been our peace.  A time when you would actually lay down to sleep without being held and would generally eat without much of a fuss, and fall back to sleep. 

Thus creating a mystery; why is my baby never happy?

I cut out dairy hoping it might make a difference, yet little change occurred.  I had made several phone calls into the nurses line at our pediatrician expressing my concern as your screams/cries became more frequent, and sounded more painful.  I heard the usual routine of tricks to try that had all been done here before, and it all had been chalked up to being nothing more than a bout of colic.

Our moment of awakening came when I noted one calm 30 min moment of blissful awake time with you as we ventured out to see some friends.  The first moment of it's kind.   Then two days later a moment of awake time where you actually calmed enough to sit and observe your world without crying, screaming or being held and we talked to you and watched as you took it all in.  It lasted 15 minutes.  Then the screams came back like a bolt of lighting.  Your Daddy and I decided, at 5 weeks old, this was not normal, this was not OK, and something had to change.

Friday we visited the doctor who decided you were battling a form of silent reflux and having lower esophageal issues.  I was told I could reintroduce dairy to my diet since we had not seen much of a change after a week of cutting it out.  We gave two doses of Zantac that day and were hopeful and praying for a change.  The next day brought more tears, screams, and agony from you than ever before.  It was non stop, sleeping for a TOTAL of 3.5 hours all day, the rest of your time was spent trying to tell us something is wrong.  After seeing blood in your diaper we made a call to the Dr. who told us it was time to come in that night, but after all of the days events you had finally fallen asleep.  We were told to keep an eye on you and come in to the office the next day.   So we are once again battling it out, testing the doctors theories and remedies, and now back to a possible dairy allergy; praying for a noticeable change, a happier baby, and a chance to get to know you. 
My darling girl, I long for you to be happy.  I know that things could be worse, and I know that we are so blessed to have you here as healthy as you are.  Nothing can quite break your heart like seeing your child in pain.  I'm sad for you on a daily basis and want to find a way to make it all go away.  It can all wear one down pretty easily but, I'm thankful that I am able to hold you, that you're not a child feeling sick and lying in a hospital but one who gets to be comforted and rocked by your mommy and daddy. 
But this is still a struggle, and it's hard not to be frustrated with it all.  I've already experienced just how quickly time passes watching a child grow up, I didn't know it could be thrown into warp speed.  These past five weeks have been too fast to take in.  I"m ready for an answer and I know you are too.  I'm ready for normal and the chance to look in your eyes and know you are happy.  I'm ready to have a second in a day to write down your little milestones, to take more pictures, to read to you, for your big brother and I to find ways to make you smile and show off that dimple.  I'm ready to watch you discover your world.  So I pray that our latest efforts are the right ones and that we're on the road to discovering life with a blissful baby girl.

Love,
Mommy
 
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