Hoppy Saturday

20130831-110132.jpgGood morning heart family!

I LOVE Saturdays cuz’ nobody pokes me and I don’t have any field trips to go on for any tests! I just get to hang out with my mommy and daddy all day! I was so excited that it was Saturday I woke up every hour last night to tell mommy about it. She didn’t think it was necessary but I just couldn’t help it! I had really bad toots last night too so those woke me up anyways. But, I got most of them out and feeling much better this morning. Dr. Stanley in IR put my feeding tube in the right place yesterday and I finally started eating again last night! Man was I starving. I think Dr. Stanley wants me to be the spokesperson for Hypafix cuz’ he put a lot on my face! Can’t wait for my gjtube surgery so I never have to have tape on my face again! They’re going to wean me off the oxygen today and hopefully we an go outside again tomorrow. Mommy and daddy said they are going to push me in this cool stroller carseat thingy and they said that I am gonna love it! I also heard a mumble from them saying that I’d better love it cuz I’d be spending a lot of time in it, especially during a 2 1/2 hour car ride to that H place they sometimes talk about. They pray to Jesus every night that we’ll all go there really soon! I can’t wait!

I love all of you and hoppy Saturday!

Xoxo Stinky man

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Fantasy Football

20130831-104618.jpgWho needs morphine when you have Fantasy Football with Daddy?!?!? Owen was throwing himself into quite a fit and I was getting scared. I looked at Jeff and said “Hurry!!! Talk to him about your Fantasy Football team!” Owen instantly calmed down and focused on his Daddy. Phew! That was a close one!

My boys

20130830-000358.jpgAs I lay in Owen’s room and reflect upon the last year, I hear my husband in my head telling me to be raw. This journey we are on is not all butterflies and rainbows. However, our strong faith in God allows us to see the butterflies and rainbows everyday in the midst of pain and fear. Daily we meet with specialists that tell us the worst and best case scenarios for our son. We work together in each meeting and ask as many questions as we know, try to understand all that is being thrown at us, then I usually say some awkward sarcastic thing because that’s what I do when I am stressed, everyone laughs, and then they leave our room and go on to the next until they can go home at the end of their work day. All the while we are left with swollen hearts, tear filled eyes and prayers that one day soon we will get to take our precious son and go home too. Being Owen’s parents is not a job that we can clock out of at the end of the day. Saying it is hard would not even begin to cover it. Saying it is worth it would only begin to scratch the surface of how we truly feel.

September 3, 2012 we found out that I was pregnant. We were elated. We got to be parents. I got to raise a tiny human with my best friend. I never could have imagined what God’s definition of parenting looked like in our lives. I thank God everyday that he chose Jeff to be my husband and my partner in this long journey. I am daily in awe of his strength, wisdom and faith. He is selfless and would do anything for Owen and me at the drop of a hat. He is the best role model for our son. My daily highlight is watching Owen smile up at his Daddy and witnessing the bond they have as father and son. My heart overflows with love for him and I have never respected anyone more. With God as our center, we have created a solid foundation and nothing can stand in our way. I am blessed beyond words by the man God has chosen for me to do life with.

As for my #2, Owen, he had a rough day and could use all the prayers that you can send. He did not sleep well and this morning sent himself into a tizzy. He was crying for quite sometime and became tachypnic (breathing too fast) and had severe retractions. They thought about sending him back to CTICU. He was not going in the right direction. The nurse practitioner was incredible and was very quick to order whatever was necessary to help Owen. She ordered additional diuretics, some morphine and ultimately our lil’ lion needed some oxygen support. It took most of the day to calm him down but he eventually recovered and is now sound asleep, hopefully for the whole night. He is receiving 2 liters of oxygen support that we will wean once he is comfortable breathing. They had to stop his feeds again as well because of the work it takes to digest his feeds. We will be meeting with GI tomorrow to schedule Owen’s stomach surgery for sometime next week.

As for my #3 main squeeze, Jaxon. I miss our furry first born so much and hope that he will remember us when we finally return home. We thank Jeff’s parents tremendously for taking care of our boy so we can focus on Owen. Our faith and knowing that someday soon I will be home with all of my boys is what gets us through the day.

Please pray that Owen can get off the additional oxygen support quickly, that we can restart feeds, that his veins do not scar anymore and that the perfect diuretic cocktail can be prescribed. We love you heart family and thank you for being by our side every step of the way.

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Echo Update

20130828-224552.jpgIt’s been a day… If we could sum it up in a word I’d chose EXHAUSTING! Emotionally exhausting for us and physically exhausting for our sweet lion heart. I know everyone is anxious to hear how the echo went today. We are happy to report the pulmonary vein flow gradient is UNCHANGED!!! We will be having a follow up echo to check the veins every week. I promise to write more tomorrow. As for tonight we ask you to thank God for the gift of another day with Owen and we ask that you pray for continued miracles of healing in his precious little body.

FIFTEEN WEEKS

20130828-112322.jpgGood morning everybody! I’m 15 weeks today. It’s been a very busy morning. The X-ray tech came thrashing in this morning and woke me up on the wrong side of the bed. I recovered but then the GI doctors came by to check on me. They are happy with the amount of feeds I have been able to handle NG and are going to do one more test before scheduling my surgery. The test determines how much I reflux and how long it stays in my esophagus. Then I was just about to start relaxing and the echo tech showed up. I tried to be good for her but she took too long and I was just about done. She finished up and I was thrilled till mom decided I couldn’t go another day without a bath. She said I was way too cute to be the stinky kid on the floor. I’m all fresh and clean now and mommy wanted me to smile for my photo op but I told her she was pushing her luck and fell asleep. Not sure when my cardiologist will read the echo but I’m dreaming that my veins are being nice to me and show a lower or unchanged gradient. Thanks for all of your prayers and sweet messages. Love you!

Sleepy head

20130827-104432.jpgOur little lion is still far away in dreamland. He was awake for about 14 hours straight yesterday so I’m glad he’s getting caught up on his zzzzz’s. Sleep is the best medicine! We spoke with the Cardiologist this morning and they decided to do the echo tomorrow. Our lil’ man has shown some increase work in breathing and he is having some moderate retractions so we are keeping a real close eye on him today. His hematocrit is low as well so he will be getting a blood transfusion this afternoon. Hopefully that will help everything and make him feel a little better! Please continue to pray for our lion heart! We will keep you posted on today’s first as soon as sleepy head decides to wake up and try one. Thank you for all of the blood donors out there. Your selfless acts are making a difference everyday! If you are not a donor, please consider it! You have the power to save a life!

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Old Guy Named Elvis?

20130826-203422.jpgHey heart family… Stinky cheese man here… Mommy keeps calling me that and I laugh when she does it and Daddy rolls his eyes. We’ve been having lots of fun lately. Everyday they make me do this thing called “Baby O’s Firsts”. It’s so cool! I am doing all this new stuff. Today I surprised them and I tried a first on my own for my day 103 birthday. I got my hand all the way to my mouth and then I tasted it! It was so weird. Mom said I made this face that looked like some old guy named Elvis. I’m so excited to try some first things tomorrow. I have an echo tomorrow to check on my veins though. Please pray that they’re playing nice. Mommy and Daddy get pretty sad on echo days and it makes me worried.

We all love you lots and can’t wait to update you with good news tomorrow!

Smooches!!!

Chosen Mothers

20130825-215341.jpgGod had a much different plan for me when it came to being a Mommy. My vision of being a Mom was so much different. But isn’t that what is so beautiful about our God? He choreographs the most beautiful dance with such highs and lows all the while strengthening you, humbling you, and perfecting you into the beautiful masterpiece he has planned. Then he takes such an imperfect woman and trusts her with such a precious, tiny, warrior. I will never understand why God chose me to be Owen’s Mom but I will for ever thank him that he did. On May 15th I walked through the doors of this hospital a much different woman and since then I have been forever changed. I can see things so much clearer. I will forever be thankful for the village that he has surrounded us with. We have angels praying for us and cheering us on from every corner of the planet! Thank you for being our constant and reminding us of God’s promise. Jeff found the following poem and I had to share it. Good night heart family. Looking forward to sharing a lot more firsts with all of you!

The Chosen Mothers

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”

Finally, He passes a name to an angel and says, “Give her a child with an illness.” The angel is curious. “Why this one God? She’s so happy.”

“Exactly” smiles God, “Could I give a child with an illness to a mother who does not know laughter? That would be cruel.”
“But, does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has it’s own world. She has to make it live in her world an that’s not going to be easy.”

“But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.” The angel gasps -“Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side.”

“And what about her patron Saint?” asks the angel. His pen poised in mid-air. God smiles, “A mirror will suffice.”

Fresh LA Air… Another First

20130824-215726.jpg1 nurse, 1 Daddy, 1 Mommy, 1 transport monitor, 1 IV pole, and 101 days later, Owen had another huge first! The NP and his Cardiologist agreed that Owen could go outside today! We were so excited! He had a long day of reflux and short cat naps and was pretty fussy! We thought that the change of scenery might do him good. It took him 10 minutes to open his eyes once we walked outside and entered the healing garden. We all held our breath as he took in the outside for the first time! He was not so sure about it though and I think we have a lot more practicing to do before we get out of here for good! It was so incredible to watch another first through Owen’s eyes. Hoping the vitamin D and fresh LA air was medicine for his soul. I know it was for ours. Good night sweet heart family and thank you from the bottom of our hearts for all of your prayers and support! We are in this struggle together and we’re so glad that God has chosen all of you to be the warriors by our side!

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