Our Journey with Conjoined Twins
Abby & Erin
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8:28
Romans 8:28
Tomorrow will mark 300 days that I have been in Philly. Come the end of June it will be a year. Lately the number are getting to me. Counting up the days we are here and counting down the days till surgery. 300 days is too long to be away from home. 274 days is too long for babies to be in the hospital, and the fact that there still is no real idea of when we will be home is so daunting. Yes we have surgery dates, and yes the prognosis is "good", but no one really knows how the girls will be after surgery and how long it will be till they get, or should I say we get to go home.
Having Riley here is so wonderful. Watching him with the girls fills my heart to overflowing. But it also fills me with such a sadness. Knowing the pain he must be feeling since he is missing so much. We try to fit so much in when he is here but it doesn't change the fact that he got pictures of their first smiles, got a video of some of their first giggles, he wasn't there to feed them their first spoonful of baby food, or to help them roll themselves over for the first time. I can see it in his face how much he misses them and wishes he could be here for all those things. I can't imagine what he goes through on a daily basis, and especially on the girls' hard days. The days Abby stopped breathing, the days the girls had horrible procedures, the surgery day that he couldn't be at because it was such short notice. He is one of my heros because he puts his family above his own desires. He knows that if he were to come and stay here, we wouldn't be able to have anything to go home to. And that is so incredibly important. But it doesn't make him having to leave any easier. We miss him every second he is away. Thankfully he is able to take advantage of the Family Medical Leave Act and will be able to be here for over a month starting the end of may so he can be here for the girls separation and few weeks afterwards. Granted FMLA doesn't include being paid, but he will have his job waiting for him when he goes back home once the girls are stable. So that is fantastic news and may 19th can't get here soon enough! The girls are doing well. The skin expansion process is going well. Minor hiccups here and there but nothing crazy, Thank God! Your prayers work and we are so grateful! We spoke with our neurosurgeon while Riley was here last week and he is hopeful that the girls will make it through these next two surgeries and come out on the other side as two little girls who are no longer attached. There will be three teams of neurosurgeons involved along with our plastic surgeons, anesthesiologists, and so many others. We are incredibly nervous, but we are confident in the team. It is such a surreal though that within the next two months the girls will be separated. Like I said 300 days is a long time to be waiting for this. And it is more than 300 days that we have been waiting for this one event. On March 11th 2016 we found out that the girls were conjoined, that was 410 days ago. We have been waiting for this for over a year. So much worry, hope, sleepless nights, tears, and joys are going into this one day. This one day will change not only Abby and Erin's lives but also Riley and mine as well. I have to give it to God every second. There is not a second that goes by that I am not thinking about it. And I know that if I don't give it to God every time I think about it I am not going to make it. Sending your children in for a surgery like this is something I would hope and pray those reading this will never have to do. We don't take this decision lightly. We know the risks, and we know what the benefits could be. But that doesn't make it any easier. These little girls have already been through so much in their little lives. I cannot wait to snuggle them for the first time as their own little self. Holding them is tough. They usually just lay on my lap, or it is uncomfortable to hold them and within 10 minutes its just too much not only for myself and whoever else is helping me, but for the girls as well. It is just not comfortable to be held. The other night as the girls were falling asleep I couldn't help the tears falling down my cheeks. They were fussing like they normally do, but were little more because they are teething and just aren't very happy in the evenings from it, especially Abby this night. And as I watched her fuss every ounce of my being was screaming "pick her up and snuggle her" but I couldn't. I couldn't hug her and rock her to sleep. I couldn't give her that little bit of comfort. And it broke me for the umpteenth time. I am so ready to be able to hold my babies. But getting there is so incredibly hard. It's a constant battle between hope, and fear. And only God can make that battle stop and like I said I try and give it to him every time I think about it. The outcome is already written and there is nothing I can do to stop it from happening. He already knows. I just have to be willing to follow His lead because He knows what He is doing. I know I ask for prayers so often but please keep praying. We need that constant flow of prayers. The girls have a CT scan coming up around the 13th of may. They will make another model of these scans so they can have a very recent 3D model of the girls vascular structure to prepare for surgery not even two weeks after that. Riley will be here on the 19th of May. Thank God he will be here because going into this is very scary. Having him here to sign all the paperwork and sit in on all the meetings will be more helpful to me than anything. The girls are a little stuffy right now, pray that is is just teething and no sickness. Sickness could push our timeline back by months and I am so terrified of that happening. So please please please pray against sickness. I don't know if I could handle an extra 6 weeks because of the girls getting sick. Pray for our surgeons and doctors as they go into this. From what I understand this is the first time CHOP will be separating craniopagus twins. If they have done it before it was a very very long time ago. I can only imagine how our doctors and surgeons feel. They are not only our team, but have become our family. I can tell they truly care about the girls. They are incredibly qualified to do this and I have faith that their hands will be guided by the ultimate physician. So pray for them as this must be an incredible weight to bear, knowing you will be changing lives. Pray for our family that we can make it through these next few months financially. If things end up going a little funny Riley could end up having to be here longer. Like I mentioned before he will not be getting paid for most of the time that he is here so we live off of the generosity of others. God always makes a way and if this is where Riley is supposed to be, God will make it so. We so appreciate all of the support we receive. The notes I receive in the mail lift my spirits so much! I know I have posted the address of the Ronald McDonald House, but if anyone were to want to send Riley an letter please let me know and I would be happy to give you the address where you could send that as well. We are so blessed. Even though this journey and excruciating some days, we know how blessed we are to have two healthy little girls who despite the odds are doing so well. They truly are little miracles and we couldn't be more grateful for them!
49 Comments
Anne Lippincott
4/24/2017 10:29:05 pm
My thoughts and prayers are with you all. I pray for your strength and the girls continuing wellness. For God to bless and keep the girls continuing growth and wellness for the ultimate separation success. For God to give the strength, knowledge, etc to the surgeons, doctors, nurses and all the team for an outstanding successful surgery. I admire yours and Riley's strength and faith in our Lord and Savior!!!!
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3/2/2020 04:47:18 pm
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6/29/2020 05:10:32 am
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7/1/2020 02:34:44 pm
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Sarah
4/24/2017 11:05:15 pm
Though I cannot exactly relate to your circumstances, I can relate to some of the feelings. I can relate to the feels of hope and fear that are constantly at battle. I pray that God's peace will guard your hearts and your minds. I pray that God will guide the surgeons hands and that the doctors will have wisdom in caring for your babies. I pray that sickness will stay away and that you will soon be able to take your babies home healthy and well. The wait is hard but He operates outside of time itself, and He is so very faithful.
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Linda Bruins
4/24/2017 11:24:58 pm
Thank you for the updates, will keep the girls in prayer for good health and of course for all as the surgery approaches. Grateful for your beautiful posts!
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Becca
4/25/2017 07:40:24 am
You, Riley & the girls are always on my mind... we were in the NICU 283 days and the last two months dragged on and on. I can only imagine how terrible it must be for you, especially with the uncertainty of what lies ahead. May 13 is the twins 1 year so I'm hoping that that is a good sign for your girls. We are going to be at CHOP Friday & Saturday (Logan has surgery with Dr. Taylor actually...) and would love to see you. Stay strong Heather, you are so inspiring and so amazing. XOXOX
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Annie Green
4/25/2017 09:42:46 am
Dearest Heather, we were so blessed to meet Riley at your grandpa's funeral; he is a lovely young man, and such a gift. We have, as you know, kept the girls in our constant prayers and continue to do so. We love your family, and we are here for all of you. Please know that your loving papa, and God have gone before you all in this; and we have reached out to others faithful in prayer for the girls. Love to you all. Annie & Jim
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Auntie Debbie Tuit
4/25/2017 12:41:22 pm
Love you all. The prayers go up daily. You are all so brace and amazing. Yes. What a journey. What a long road. We are in awe of you all. Looking forward to you all going home. 🏠
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Patricia
4/29/2017 07:04:03 pm
Your family will be in my thoughts and prayers as these two beautiful babies gets their surgrey.may god bless uou all in many ways. Hugs.
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5/1/2017 11:31:43 am
I know you don't know me, I work with Riley at Madvapes though, and I FEEL like I know you, as he talks about you and the girls all the time. I really enjoy reading your blog (as I am a blogger myself - the link I provided is for the more wholesome of the two blogs I have, haha). You and your girls are always in my thoughts & prayers and I hope one day to have the pleasure of meeting all three of you when you make it home safely!
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Beth
5/3/2017 10:08:25 pm
It would be great if you could publish the address at the RMH again. You are in our prayers as the day approaches. God's got this!
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5/4/2017 07:14:34 am
Hi! The address is
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Melanie Case
8/28/2021 03:49:03 pm
Hello Everyone out there,I am here to give my testimony about a Herbalist doctor who helped me . I was infected with HERPES SIMPLEX VIRUS in 2011, i went to many hospitals for cure but there was no solution, so I was thinking how can I get a solution out so that my body can be okay. One day I was in the river side thinking where I can go to get solution. so a lady walked to me telling me why am I so sad and i open up all to her telling her my problem, she told me that she can help me out, she introduce me to a doctor who uses herbal medication to cure HERPES SIMPLEX VIRUS and gave me his email, so i mail him. He told me all the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after two weeks the HERPES SIMPLEX VIRUS that was in my body got vanished . so if you are also heart broken and also need a help, you can also email him at {[email protected]}
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2/6/2022 02:47:47 am
Getting rid of cold sore, one has to make use of the right medicine that will get rid of the virus permanently , that causes the cold sore , its not just to apply something that will dried up the sore, cause if you that, it will still come back again after sometimes, cause i have experience it in the past, until i made use of herbal remedy from @the.greatherbalhealinghome i found on instagram , indeed his medicine works perfectly well. Believe me or not.... I have to say the truth , there is no other medicine that has treated herpes simplex virus and other diseases and infections without reversals... Only herbal medication that has been proven right to have successfully cured herpes simplex virus and other diseases and infections without any reversal, am a living testimony to this and as such I will recommend Dr Ofua Ofure of thegreatherbalhealinghome whose herbal medicine product I make use of to get rid of the virus from my body totally to anyone out here reading this comment as looking for a lasting solution to his of her health problem should please get in contact with him ([email protected]) its safe and work perfectly with no side effects, I have used it and the virus was eradicated from my body within three weeks , contact Dr ofua ofure on call/whatsapp +2347059497969 you can look him up on (https://dr-ofua-ofure-herbal-healing-home.business.site)
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ally jose
2/14/2022 08:03:03 am
I trusted Dr Ogedegbe totally from the time I spoke with him during the period my husband Left me after 7 years of our marriage, He started the spell work on my husband, and gave me so much assurance, and guaranteed me that he was going to bring my husband back to my feet in just 48 hours of the spell casting. I have so much confidence in his work and just as he said in the beginning, my husband is finally back to me again, yes he is back with all his heart, Love, care, emotions and flowers, and things are better now. I would have no hesitation to recommend this powerful spell caster to anybody who is in need of help. Email this great spell caster today via [email protected] or via whatsapp +2348109374702
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GLORIA WILLIAMS
2/15/2022 04:21:48 am
Gloria Williams,is my name, form Ohio ,United State Of America,living with bad breath just like living in hell, is really disgusting & embarrassment,this has big problem to my social life well there is say that "never give up know matter what you been to just keep pushing, suffering from bad breath in several years,i tried some mouthwash, home remedies, twice day brushing, this has be for very long time i try all the best i know, but my best never work for good, till got multiple comment about this doc called Dr Ose Odiagbe, i mail he & told he about my bad breath, he told me he has solution to my bad breath just as he has cured other persons,i place an order for his herbal drugs within 4 days i got the herbal drugs via; DHL he gave the instruction which i did as he rightly said, took it for just 3 weeks morning and night guess what? i got cure of bad breath, just like miracle this is what i have been fighting for over years an finally, Dr OSE, get rid of my bad breath with his herbal drugs please help thank the greatest doc, Dr OSE, for help and solution to your bad breath contract Dr OSE on his email address: [email protected], droseodiagbeherbalcenter.wordpress.com or whatsapp him on his mobile line +2349060666954, once again thanks doc OSE ODIAGBE
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Isabella Lucas
11/10/2022 05:07:42 am
My ex-husband and I had always managed to stay friendly after our divorce in February 2017. But I always wanted to get back together with him, All it took was a visit to this spell casters website last December, because my dream was to start a new year with my husband, and live happily with him.. This spell caster requested a specific love spell for me and my husband, and I accepted it. And this powerful spell caster began to work his magic. And 48 hours after this spell caster worked for me, my husband called me back for us to be together again, and he was remorseful for all his wrong deeds. My spell is working because guess what: My “husband” is back and we are making preparations on how to go to court and withdraw our divorce papers ASAP. This is nothing short of a miracle. Thank you Dr Emu for your powerful spells. Words are not enough.
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AuthorMy name is Heather Delaney. I married the love of my life Riley on 10/02/15 and we now have two beautiful girls Abby & Erin, who are conjoined twins, that were born 07/24/16. We are trusting that God is going to work all this out for his good! Archives
March 2021
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