erikimay11

[erikimay11]

Happy 3 MONTH birthday, baby Cooper! You love: mimicking laughter with your cute giggles, your play-mat, swatting at/grabbing things, sucking your fingers, sleeping on your side, and having one-on-one talks/face to face time with anyone who is lucky enough to do so. You are very social and love to watch your brother/other kids play. You can track side to side/up and down, can roll from belly to back, and swat/grab at things. You continue to amaze us with your calm spirit, intelligent mind, and adorable face. We love you! 14 lbs, size 2 diapers, size 3-6month clothes #cooperjamesgrowsup #toofast #3monthsold

[erikimay11]

Happy 2 MONTH birthday, baby Cooper! You are an affordable little manly grunting, hand chomping, side sleeping, sweet smiling, sound mimicking, yoga music loving, back pat relaxing, staring contest winning, hungry hungry little hippo. Each day you teach us the importance of being present and there is no present we could ever want more. We love you so much, our little miracle man! #cooperjamesgrowsup #2monthsold

[erikimay11]

Fist bump for the 2nd week in a row of stable labs! We feel so excited and grateful that it seems we've really turned a corner with his health and that his little body has fully kicked into gear! Hooray! #coopertrooper

[erikimay11]

*insert witty caption* #thatsabooger #coopsfacethough #classicfamilypic

[erikimay11]

We are so feeling this right now.. Hilarious! Worst roommate ever.. Good thing babies are magical. #parentalmustwatch

[erikimay11]

Long day but everything went well! It was so rewarding to see him go from anxious/lethargic to relaxed/bright-eyed. Amazing what a little blood can do and not a moment too soon as his already low 8.0 yesterday dropped to a 6.8 today - phew! (ideal is 18) #coopertrooper #transfusion

[erikimay11]

On the month mark from when we were discharged from this special place, it was nice to be back to visit some of our favorite people at the McKay NICU. Grateful for more of their help today with labs and IV placement in preparation for transfusion #4 tomorrow.

[erikimay11]

Our little bright-eyed, strong-hearted boy! Grateful for lots of good news this week: hearing normal, liver improving, no transfusion-at least not this week, and light at the end of the tunnel that when you are 2 months your bone marrow should fully kick into gear and the antibodies should be gone. In the mean time, his little heart is compensating incredibly well considering he is running on half a tank with just half the blood volume he should have. Rock on, #coopertrooper, we are so proud of you!

[erikimay11]

Audiology diagnostic follow up time on that adorable little ear. He failed a portion of his screening in the NICU. They have previously attributed neural hearing loss to kiddos who receive exchange transfusions. We don't feel like there is a loss but looking forward to getting confirmation. Bonus: I'm soaking up this uninterrupted cuddle time since I get to hold him for the whole test! 😍 (at Primary Children's Hospital)

[erikimay11]

Truly our Father knows us and hears the pleadings of our hearts. He accomplishes His miracles one prayer at a time, one person at a time. We can trust that He will help us, not necessarily in the way we want but in the way that will best help us to grow. Submitting our will to His may be difficult, but it is essential to becoming like Him and finding the peace He offers us.

Jean A. Stevens

[erikimay11]

Spent most of the day at our old stomping grounds and I must say it feels like a second home. Cooper and I walked the halls together I so often walked alone those terrifying and miraculous days and nights. We haven't had the greatest experiences with Primary children's so far and so we're that much more grateful for this wonderful facility that saved Cooper's life and continues to be a resource in his healing.

[erikimay11]

Happy 1-month birthday, baby Cooper! 3 hospital admissions, 2 transfusions, 1 exchange transfusion, countless IV and blood draws, etc - you've been thru more than most go thru in a lifetime and it his has been the longest month of our lives! (LOL) You are such a miracle. You LOVE being held, bathtime, looking around, music, tummy time, and your brother. You DISLIKE hiccups (unfortunately guaranteed after every big burp), diaper changes, the cold, and waiting for food. We love all 8lbs 14oz of you with all we've got. Celebrating today with your improved hemoglobin level, grateful for priesthood blessings and especially grateful for YOU! #miracles Here's to many more happy healthy months to come! #supercooper

[erikimay11]

The face of apprehension.. and cuteness 😍.. As we are back for more lab work since his color, behavior, and oxygen has been a bit off. Hoping for good news though- we're probably paranoid at this point but can't be too careful with a little guy this precious!

[erikimay11]

"I could get used to this..." Look who lost his bellybutton stump and is seriously loving his baths! #babysfirstbath As you can see, he has one less attachment as we are doing some oxygen weaning and it's going well so far, indicating the theory that his oxygenation was damaged from bilirubin neurotoxicity isn't legit-hooray! His blood levels today are stabilized and though we'd like to see more improvement, we're grateful they're not getting worse. Loving our sweet little guy! 

[erikimay11]

"I'm back!!" Transfusion went well, numbers back where they should be, and we are settled back at home - thank goodness! Cooper, as usual, was a trooper through a very long day and overnight stay. We stayed in the oncology wing and seeing all those poor kids with cancer made me grateful for this trial. It isn't fun but it's something we can handle and there are those much less lucky than us. The main prognosis we've heard is once Coop's body figures everything out (anywhere between 2-6 months, barring complications) he will be just like any other healthy baby. We are blessed and will continue to take one step at a time. #blessed #coopertrooper

[erikimay11]

2 steps forward, 1 step back.. But still moving. Liver numbers seem to be improving but hemoglobin is low again. Right now, we're here at Primary children's hospital waiting what feels like an eternity for another batch of super specialized blood for transfusion. Turns out he continues to hemolyze but his bone marrow isn't keeping up with new blood cell production, so the need for ongoing transfusions is our new reality for a bit. Very grateful to my inspired hubby for checking the labs online early this morning (we weren't notified yesterday when the results were back initially.. Grr😠) so we could get this ball rolling before levels got *too* low. #miracles

[erikimay11]

Cooper is such a sweet, calm baby. Unless he's eating, asking to eat, or sleeping, this video shows his usual disposition. After all the nightmarish things he's been thru, it is so tender to see how content and secure he feels at home. It's a place he isn't poked, prodded, tested, or isolated. We love him so much. Prepping our spirits for more specialists and testing tomorrow, grateful for these peaceful moments this Sabbath afternoon.