There Are No Strings On Me!!! - Homecoming of a Real Boy

17 Days since my last post . . . and I think I am finally ready to post this blog! Sorry for the time lapse . . . I have been enjoying the safety of having my family home and returning to a "new" normalcy. It has been a peaceful chaos to say the least!

Sullivan is AMAZING, as he always has been, but better. He has NO extra parts that are in place to hold him, feed him, medicate him. All of his attachments are those with which he was born. He is blessed from head to toe and his family is wrapped in the warmth of his safety and of his life breathing body.

As Stephanie's day moves in chaotic circles around her, with dishes, diapers, feedings, potty breaks, pumping's, dishes, diapers, feedings, potty breaks, pumping's . . . she stands amidst the cyclone and holds her miracle. She remains in awe he is hers, and he is home, and he is living. Her family unit is whole under one roof. Her baby is thriving and growing. Her child is loving his brother and lifting his spirits and her husband is sighing with thankfulness and beaming with pride.

Sullivan Hunter Spay was born July 11th, 2010 @ 9 lbs 5 oz's. He came home August 17th @ 9 lbs 5 oz's. He came home on a feeding tube resisting to consistently take his bottles and now has had his feeding tube removed and his successfully drinking his bottles. Stephanie is still pumping for the day that he will be able to drink her milk. Life remains one step at a time and there are still moments of grave worry and anticipation, but those moments pale in comparison to the joy and happiness that is levitating this family!

Thank you again to all, for your love and support. This homecoming would not have been as sweet without all of you.

Many Blessings and Much Love,
Aunt Angie

Sullivan Graduated!

Sullivan is now happily resting in the Pediatric Cardiac Unit at Riley, he is movin' on up in the world and hopefully next week he will be movin' on out! YES, Steph and Casey were told that their sweet baby boy could be home as early as next week.

Sully is doing amazing and is amazing! This little man is already smiling! He knows how wonderful life is and he knows how much he is loved. I am beaming with pride. Today, he proved once again what a quick learner he is and drank his first bottle! He is still on a special formula but we all remain hopeful that he will soon be guzzling down the gallons of breast milk awaiting him in the freezer. The health of his thoracic duct is unknown at this time, but will be readdressed after ample healing time has passed. I word Stephanie and Casey have heard too too many times . . . patience. Healing will take patience. Patience and prayer.

Sully's heart rate and breathing rate still remain a little higher than what is expected, but again patience is proving that these numbers are very slowly decreasing daily. Most likely he will still be monitored when he does come home . . . but he IS coming home! And he IS coming home soon! Thank you Lord, thank you to all of you who have loved, and prayed and embraced Stephanie, Casey, Sullivan and Leo from a distance. I know they feel you lifting them up and moving them through each battle, each moment that lasted an hour and each night they must say goodbye and come home to an empty crib.

God is good, even when you think life is "unfair" . . . God is good. This horrible tragedy that is consuming my family . . . and yet I see overflowing blessings as a result of it everyday. I can now see how the stars aligned and the tide rolled in at just the right moment to make this situation survivable for my family . . . to take a child from death and place him back into the light of life. Tragedy will happen with or without God, but the miracles can only happen with Him. And the miracles are what get you through to the other side. Each of you that have read this blog, that have shared this story, that have looked at Sullivan's innocent face are one of these miracles. I thank God for you. And I thank you for carrying Sullivan with you in your hearts throughout you stressful and busy lives. If I could hug each and everyone of you I would and I know Stephanie and Casey would do the same. I apologize for my babbling and "preaching" of miracles . . . I am just so grateful, and so surprised at human kindness.

Love and Blessing to you all, and one HUGE hug that lifts you up to the sky and spins you back round!

Aunt Angie

Another two bite the dust!

Sullivan got both of his chest tubes removed yesterday! He is doing so well! He is off all of his pain medication and is alert and happy. Yesterday I got to go visit him with our good friend Megan and he was all smiles . . . I couldn't take my eyes off of him! Oh, how he LOVES his mommy (and I think he is also a little in love with his Aunt Ang too)!

Stephanie got to hold him and give him a bath! He really enjoyed his bath. Casey got to take Leo to the State Fair with "Uncle Justin" and "cousin Miles". Yesterday was an amazing day for us all.

Sullivan has had a minor set back as far as his feedings. His first feedings were through a small tube going from his nose to his belly using Steph's milk. But as it turns out . . . during Sullivan's heart surgery a small tear was created in his thoracic duct. Because of this tear, all of the breast milk was going into his lungs. As of right now, Sully is on a special formula with little to no protein in it (as this formula will not cross the duct tear). The tear should heel on its own, but there is a small chance that surgery will be required to fix it (please say your prayers!).

Stephanie is still pumping and keeping hopeful. The freezers are filling! So, let all just keep praying that this minor setback doesn't keep Sully from getting what is best for him nutrition wise.

Thank you for all of your kind words and wonderful emails to me . . . I am completely humbled. This blog is the least I can do, and like all of you . . . I wish I could do more.

God Bless and MANY thanks,
Aunt Angie

One Down . . .

Sullivan lost one of his tubes yesterday . . . his breathing tube!!!!! Go Sully! Moving on to the next round Ladie's and Gentleman, he just keeps knockin' 'em down - what a CHAMP!

I saw Stephanie yesterday evening and it was the best I have seen her for SO long! I don't think she even had the same spark in her when she was still pregnant. Nothing beams brighter than a mother's pride.

So, our little guy's next adventure is feeding through a feeding tube today. I have yet to hear how that has gone, but will keep you posted. He is working on learning how to suck again, and he is getting Vapotherm treatment through nasal cannula's. But, I believe and hope and pray that I will be able to visit my nephew in the warmth of his home within the month (please, please Lord!)

Love to all!
Aunt Angie

Visted with Sullivan and Steph

Today I was lucky enough to be able to go to Riley and see my sweet nephew and my stronger than strong sister (thank you Mom for watching my boys!!!) with the company of Steph and my good friends, Ann and Kamy. Our visit was wonderful!!! Sullivan looks so wonderful . . . I know from this picture he may look a little "intimidating" with all of his power cords, but as you know . . . he is one powerful baby!

He is doing fantastic and continuing his journey to make it home. When we arrived he had one chest tube (to drain fluid off his left lung) and as we were leaving Dr. Turrentine was preparing to place a second in the left lung. All of your prayers for pee have been working though, Steph said he has been filling diapers left and right since last night. He just needs to keep it up. His O2 Saturation level also remain 100 and Stephanie said they have is supplemental O2 down to 40 (very good). Keep it up Sull. Love you so much little guy. And love you too Steph and Casey.

Good Night and God Bless,
Aunt Angie

The Boring Baby

Today Stephanie and Casey were told that they had the "boring baby" of the PICU . . . I believe this is the best thing they have heard in a LONG time! Sullivan maybe boring but he is a total ROCK STAR in my book!

He was completely weaned from his nitric oxide and his oxygen sat. was in the 100's!!! This is a FIRST for Sullivan! Cartwheels people!!!! I literally wanted to do cartwheels when Stephanie told me this today!!!!! I was so worried that the Pulmonary Hypertension was going to rear it's ugly head again . . . but this is a great sign that he is functioning so well without the nitric oxide. Hoot hoot for Sullivan!!! And one of his Cardiologist said he was over the mountain . . . and oh what a view it is on the other side. Almost home Sully, just keep on fighting.

So our concerns remain to be his swelling and they still need to wean him off the oxygen. Stephanie and Casey were hoping he would be exta-bated tomorrow, but that doesn't look like it will happen until his swelling decreases. So everyone . . . PRAY FOR PEEING! Fill those diapers Sully, put Pampers to the tesst, and the waste bins overflowing!

God Bless and Good Night,
Aunt Angie

Mended Heart

Super Sullivan passed through with flying colors!!! Everything went smoothly and he came out of anesthesia just fine. He still has quite a bit of swelling that needs to decrease and I believe the Dr.'s and nurses will begin to wean him from supplemental oxygen (then they can ext-abate him) and his nitric oxide (this is helping with his Pulmonary Hypertension) soon. So after the next 24-48 hours you may hear me singing to the heavens! (Although, you may hear me doing that now!)

We are still unsure as to when he will be home in his Mommy and Daddy's arms . . . but we are getting so close everyone is smiles! Today was a good day!

Good Night,
Aunt Angie