Born Sunday, July 11, 2010

Born Sunday, July 11, 2010

Monday, July 12, 2010

Sullivan Hunter Spay

Hello Family and Friends,

I first want to announce the birth of Sullivan Hunter Spay, born early Sunday, July 11th of 2010 @ 3:42 am. He weighs 9 lbs. 5 oz. with dark hair and beautiful light infant eyes. He was welcomed immediately into his loving mother's arms (Stephanie Spay) as his father (Casey Spay) cut the cord still connecting him to his prior fetal life. He also has a big brother, Leo (3), who is still awaiting to meet his baby brother.

I am his Aunt Angie who was blessed enough to be invited to be present during Sullivan's delivery (thank you Steph and Casey for including me on this once in a life time I will never forget). I was blessed to watch as my sister made her way through a natural delivery. I was blessed to see my brother-in-law's aw of the miracle of woman and the miracle of new life. And I was blessed to be there when Stephanie and Casey received the life altering news that their perfect baby boy is in fact not perfect. . .

Sully has a cardiac defect called Transposition of the Great Vessels. There is a link at the side that will connect you questions and answers and wonderful diagrams. Very simply put . . . we all have two major arteries in our heart. One carries oxygenated blood to the body and one brings the un-oxygenated blood back to the heart. Sullivan's arteries are reversed. So his sweet little body is not receiving enough oxygenated blood. On Sunday, the day of his birth, Sullivan underwent a heart cath. procedure (Septostomy) to open a passage between his atria. This will allow the two bloods to mix (the oxygenated and un-oxygenated). He made it through wonderfully and is peacefully resting with his parents at his side. He presently is int-abated to get him optimal oxygen and is being giving medication to keep his heart strong and healthy at it's time of need. The procedure he has undergone is a temporary fix. We are all hoping and praying that this will get him the oxygen he needs to soon be able to eat a few meals and breath without inta-bation. As I understand it, this is a goal of the Cardiologists prior to doing an open heart surgery on him at the end of this week. (Date is yet to be determined)

Stephanie and Casey are "hanging in there", but as you can imagine . . . there are no words to describe the heart ache and overwhelming emotions they are experiencing. I have set up this blog site to keep all of Stephanie and Casey's loved ones as informed and close to them as possible. Because they are overcome with emotions and are unable to reach out to all of you, I am going to make every effort to be their messenger. (I must warn you there will be many grammar and spelling mishaps.)

I have received an out pouring of offers to bring food and offer childcare. If you would like to be included on a list to do a meal rotation please let me know. I plan on organizing this by the end of the week. Sullivan will be in the hospital for at least 2 weeks after his surgery and then of course when he comes home meals will also be needed. I also thought gift cards may be helpful. There is a Qudoba, Suddenly Salad, and Noodles & Co. that I noticed on the IUPUI campus. But of course, most of all we need prayers.

I want to thank all of you and especially the AMAZING staff at Community North Hospital (Dr. Beckwith, Dr. Wagner, Dr. Stuhldreher, Sullivan's Neonataologist, Nurse Tracy, Nurse Elizabeth, all of the amazing women who helped Steph deliver on that skinny stretcher in the triage room, and a special thanks from me to Donetta . . . you have many sets of wings my sweet angel)

On a side note to anyone who has or know someone who has had a similar situation, I would love to have Stephanie and Casey hear the uplifting success stories. And I know that Steph is working very hard to be able to nurse her Sullivan when he is healthy and at home . . . so please if you know of anyone who could offer her words of support and strength, I know she needs this.

Thank you again and love to all of you.
It takes a village,
Aunt Angie

20 comments:

  1. Dear Sweet Sullivan, I pray for you a healthy heart so u can feel all the love your family has for you. You have a big brother that I'm sure can't wait to meet you. Be strong little guy & I will see u soon! I♥U! Great Aunt Jean

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  2. Dear Sully Steph and Casey, We pray that you all have the strength to get through this. You have all the support you need at your finger tips say the word and we will get it done! We love you all and can't to meet you precious boy!

    Love your BCB's

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  3. Dear Casey, Steph, Leo and Sully,

    We are praying for your family and for the health of sweet baby Sullivan. Our hearts go out to you and wish you only the best.

    Love and Hugs,
    Stacie and Jon Oliver

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  4. This is from a friend who has a grandson with similar issues. I'm post so everyone can see that Sullivan can & will have a normal childhood.

    My prayers are with them. My 11 year old grandson was born with Tetralogy of Fallot which is Pulmonary Stenosis, overriding aorta, ventricular septal defect and Right ventricular hypertrophy. He has had a shunt, an open heart repair, and is on his 2nd pacemaker. He will have to have the pacemaker replaced every several years because of batteries and when he gets older he will outgrow the valve and need it replaced. To look at him you would never know the health issues he had. The kid is a power house. I know it is not the same thing but just wanted tell you the technology out there is close to being a miracle. Encourage them to read all they can, look for online support groups and to hang in there.

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  5. Congratulations on the birth of Sullivan. Our prayers are with you during this time and know you are in excellent hands at Riley.
    Love, Chris & Jim Mercier

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  6. Angie, please send my love to Everyone, and thank you for keeping everyone posted..Please tell Stef, that my prayers are w/ them, and that I know that feeling of hoplessness.. my son didnt have the extent of Baby Sullivans.. but he we were told many different things when he was born, and as a mother, its very scary to hear there isnt anything you can do. I would love to do some sort of meal for them.. I was thinking of the time, Stef's appendix burst and how i made my mom drive me to the hospital to see her.. and now i would love to do the same, but i havent seen her in years, and dont want to intrude on family/and close friends that she needs now.. So please let me know when i can bring some food... ill make a frozen chicken lasagna, that they can freeze and heat when needed. Love you guys.. all my prayers and heart,
    Kelley Lacy Parvis

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  7. We love you all so very much!!
    We are praying so hard for Sullivan..!!
    We believe he will persevere!!!
    The grace of God will sustain him in his most time of need.
    Blessing to Steph, Casey, Leo, and our new family member Sullivan..
    We are there no matter what the need.
    Love,
    Aunt Donna, Uncle Brian, Matt and Anni

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  8. O angie its a wonderful thing you are doing...i can sympathize..brian my oldest brothers 4th ..yea 4th... was born [7-7-7} with out lungs fully developed and rushed right out of the delievery room and to the childrens hospital and melissa my brothers wife didnt get to see her baby boy {jaxon} for a few days it was agony for everybody brian was with jax and back to melissa it was rough. I can gladly say that the strengh and prayers pulled that lil guy right on through ...But i will tell you FAMILY is the only thing that makes sense out of any of this...I hope your sis ad casey will stay strong and with faith ...you aswell..You have a big role in this..and as your figuring out it jus comes to you when you are put in a situation like this..jus stay strong be the rock...I will be praying for your whole family....

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  9. Angie,I have reached out to my friends to see if anyone could give us any wisdom in this situation.
    I think you are a great Sister and a Great Aunt.
    I know by experience with Donna and Brian when the twins were born and Donna's personal fight how your heart feels right now. You are doing great. I am also here for you. Let me know what I can do. We are praying and thinking about Sullivan and the family every minute of the day.
    We love all of you. Dina

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  10. Angie,
    Thanks for providing this venue for those of us who are far away to send our prayers and hopeful thoughts your way. Your heartache is our heartache. Having my own son go through surgery and many emergency rooms visits, I understand the fear and hurt, but I also know the wonderful capabilities of hospitals and doctors. Your family is wonderful and I have no doubt that Sully will come through this and a year from now you will witness the miracle of a healthy child. We love all of you. Debbie and Randy

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  11. Angie,

    What a wonderful blog you've started here. Being the brother and sister-in-law, Rob and I only have the best interests in mind for Casey, Stephanie, Leo and our new Sullivan. Please let us know what we can do to help, and when. We're here for the entire family.

    Amy & Rob Spay

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  12. Team Hill is committed to prayer for the Spay (and extended) family. Please know Ellie would LOVE a Leo play date any time! [Angie, here is a webiste raved about in a recent Guideposts magazine. It allows for the family needs to be posted and volunteers to just log in, see what needs done, and make it happen without all the phone calls and confusion. Also know that Miles and Ace are also welcome any time!]
    http://www.lotsahelpinghands.com/how/
    Looking forward to how we can help. Love, Jason, Christi, Ellie, and Josiah

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  13. Angie: I solicitied experiences from a mom's group at work. I'll share as they come in...would you like them here or directly? I can provide contact #s when appropriate. The main thing to find comfort in, they are not alone! Also, I have a high quality double Medela pump that I am happy to give to her and I can pick up new personal parts (shields/valves). Just let me know.

    Hi Christi please share this with your friend.

    I know how difficult this situation can be for a new mom, you are scared and stressed and exhausted and then you have postpartum hormones to deal with on top of it. You are no doubt overwhelmed, and nothing is more difficult than watching your new baby face life threatening issues and major surgery.

    My son was born with several medical issues including feeding problems and a cardiac defect (which will need to be repaired in a few years). He has had several hospitalizations and we went through 3 different kinds of feeding tubes, multiple medications and formulas, and countless feeding regimens using a pump. After 2 months of failing to advance his feeding regimen and nearly resorting to surgery for severe reflux, I decided to go back to feeding him straight breastmilk, and miraculously his feedings became easier and we finally started to make small progress.

    I can't tell you how many hours I hooked myself up to that stupid pump. It wasn't anything heroic in the end, I finally had to give it up (and I am glad I did, I desperately needed the rest and there were more important things I needed to spend my hours doing for my son, like physical therapy and managing all his medical needs). But we have about a month's worth in the freezer and we are using it. Breastmilk isn't magic but it happened to work for him right now.

    After cardiac surgery infants can sometimes have feeding difficulties and they may have to use a feeding tube until he gets strong enough to eat on his own. What I would simply recommend to your friend is to pump while she can, they can give her one to use in the hospital and she can freeze it there and then take it home for storage. Given the complexity of feeding challenges that might occur, they may or may not end up being able to use it. So just as importantly, I would also recommend that if it gets to be too much, then it is ok to let the pumping go too - the pressure of pumping can get to be too much in stressful situations like these, and knowing when to stop pumping is just as important as doing it :)

    My only other advice is to make sure to talk through all the fears, stress and emotions with her husband and to ask for additional support (counseling) if she needs it. These situations can become much bigger than we can handle, and getting help earlier rather than later is wise.

    I'm writing this at 3am as I warm up the next batch of breastmilk for my son. I don't know your friend and I'm sure she has many resources but if it would help I am happy to talk to her.

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  14. Christi- Thank you SO very much, these are the kind of stories that I know will keep Stephanie sane and feel validated with all of her efforts, trials and emotions. Thank you for the website too . . . another friend of mine recommended a different site that I happened to set up last night and I will be posting that information soon.

    Many Thanks,
    Angie

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  15. Hi Angie,
    I am a friend of a friend of a friend of Stephanie & Casey. My Daughter Clara just turned 3 months old. She had/has a very similar heart defect to what Sullivan has. She had her surgery when she was 1 week old. We also have a 3 year old to go along with everything else. I totally know what they are going through but the good news is that our daughter is doing great. With out going into too many details ..she has had a few very minor complications but she is gaining weight & developing very well - far better than we imagined!
    About the nursing - I have been pumping since she was diagnosed. We haven't been very successful with actual nursing so pumping is what I am still doing. We have to add calories to my breast milk anyway - that is pretty standard. It isn't fun but Clara has had such a wonderful recovery & is doing so well I hate to stop now.
    My e-mail is amclose@yahoo.com is anyone needs to talk & I have my cell number to our mutual friend. Talking with others who have been through this helped us so much so we would be happy to hear from you all.
    We are praying like crazy for Sullivan & your family.
    -Mandy

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  16. Dear Sully Steph and Casey and family -
    I cannot imagine the tension you feel at this time but know by reading the blog and the messages that you have many praying for a full and complete recovery by Sully. I know the care he is receiving is the best there is and I am sure he will grow into a healthy, happy little guy. Jan and I will be praying for all of you and appreciate so much the work done by Angie to keep us all informed. We love you very much and look forward to reading the news that everything went as planned and Sully is doing well.

    God Bless You.

    The Meyers

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  18. I raised the prayer request at my men's group this morning and one of the guys said that they had house guests last weekend and one of them was a 21-year old woman who was be born with the same condition...she's 100% healthy now.

    If you've ever played the ice-breaker game, '3-lies-and-a-truth.' I can only imagine one of Sully's items being 'I had open-heart surgery as a baby.' Everyone will undoubtedly dismiss it as completely false since he'll be a strapping, healthy Hoosier!

    It's often hard to understand why God puts us in these situations. I'm sure that Casey, Stephanie and Sully will be an enormous encouragement to others sharing their story of a very scary time when Sully was sick, but healing happens, prayer works, and God is faithful. Jeremiah 29:11-13. It's true. I'm sure of it.

    Please let us know if you need anything.

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  19. Hi Angie, Stephanie is so lucky to have you! I can only imagine the stress you are under but continue to keep everyone updated & also make sure Sully's mommy & daddy eat & have only little Sullivan's recovery to worry about. I love you sweetheart. Me & Redd took our walk this morning & I prayed for "Strength", for Sullivan's tiny heart & for the family. A beautiful butterfly was flying all around us & I felt a calming sence of knowing He was listening. Give my love to Steph & Casey.
    Love, Aunt Jean

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  20. Casey and Steph
    I hope you guys are getting through this ok, I know it is hard. You guys have been in my prayers. Reading your story I started re-living mine and my heart just cries for you guys. I would not wish this experience on anyone. My daughter Maddy has transposition too, along with 4 other heart defects. She had her first surgery at 7days old and another at 10 days old. Finally, I was able to bring her home at a month old. It was the happiest day of my life. It was not without challenges such as meds and tube feedings but all worth it. Maddy was such a happy and sweet baby, well still is. She has had 3 open heart surgies since, and a pacemaker to come. Maddy is now 8years old and doing great. She is a straight A student and a great help to me and her 4 month old sister. Maddy has been through more than most adults will expierence medical in their whole lives, and I truely it believe that it makes these special needs children like Maddy and others, truely remarkable little people. It is amazing what kids can bounce back from. I have taken care of adults who have gone through open heart and have taken care of my daughter, and kids do soooo much better. I hope my story with my daughter gives you confidence that everything will be ok, and that children can tolerate more than we usually think they can and I am truely sorry you have to go through this. If you guys need any advice or someone to talk to, Im here. I wish when I went through this I would have had someone that understood or went through something similar to look too.
    You guys are in my prayers
    Lindsey Farrell Watts

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