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.
Sorry it has been a little while since my last blog update. My computer has been abnormally slow so anything getting done on it has taken quite a bit of patience (and usually by the end of the day I have used up much of what I have). But at the moment it is working so I am going to do as much as I can before it freezes on me.
The girls are doing well! Their skin expanders are getting very very large and they are starting to be annoyed with them, but they have been doing so incredibly well! They are still doing physical and occupational therapies throughout the week although it is getting harder and harder for them to hold their heads up and turn them in any way because of how heavy the expanders are. And the girls are at the age now where they just want to start exploring and I can see the frustration in their eyes when they want to grab a toy or are trying to roll. It is tough but they are troopers. I just keep telling them that so soon they will be able to try and do these things on their own and it will be so much easier! The girls only have a few more expander fills before surgery happens and that blows my mind.
Riley is here (I am trying to get him to post a blog update on here so you can all hear from him, hopefully I can encourage him enough to do so)!! He was able to come and surprise me for mothers day and have some time to enjoy the girls before surgery. He always comes when the girls are having procedures of surgeries so it is really nice for him to be able to be here and just enjoy some time with three of us before all the crazy happens. He was granted FMLA leave which is wonderful! But we did just receive his last paycheck and that is a little unnerving. We are trying to be so careful because we also need to try and save since when Riley goes home we will be trying to buy a house. We don't have much of a down payment saved up but we are hoping and praying for a miracle. God hasn't let us down yet!!!! Everything just has to happen in HIS timing. But keep that aspect of our lives in your prayers as we so badly want to give our girls the very best that we can. I dream of the day that I can put their room together and have a happy warm place that they can call theirs. I've been dreaming that since the day I found out I was pregnant (I think every mothers dreams about that when they know a baby is on the way). I long for the day when we are in a home back in North Carolina, away from the pokes and the prods and the millions upon millions of vitals.
With surgery this close Riley and I are experiencing so many emotions. It is a terrifying thing to send your very well developed and normal seeming children, through the OR doors, now knowing if they will come out the same or if they will be completely different. I think that is what scares me the most about all of this. The doctors seem to be confident that the girls will make it through surgery, I just know that the brain is a complex thing and there are so many things that can go wrong during and after surgery. We are enjoying soaking up all the giggles and smiles we can as we know they will be gone for a while. We are loving hearing all the little sounds and the "dada's" that they have just discovered. Even the miserable teething is something that I am so thankful for because it is "normal" for a baby to be cranky when they teethe (Erin has her first tooth!!!!) All these little things that sometimes people take for grated or would frustrate or annoy some we are trying so hard to enjoy and soak up because the girls will be gone for a while and we know that during that time we need to have something to hold onto.
I am also having a difficult time dealing with the fact that they are going to be "normal". And now I KNOW that sounds crazy to some of you. But I have gotten so used to them as they are and how special they are. I am so beyond proud of them for overcoming all the obstacles that they've faced. Yes, some people will stare as we walk down the hallways, but most look in wonder and say what amazing little girls! I am going to miss that fact that people aren't going to be able to straight out see how incredibly special and strong these little girls are. Once they are separated they will look almost "normal". Yes they may have scars and such but nothing that will make people say "wow those girls were conjoined and now they're not that's amazing". It is such a weird thing to process and deal with. We love those little girls so incredibly much! And if it wasn't necessary for them to be separated (if they weren't they would be bedridden the rest of their lives) we wouldn't. Because to us they are perfect. I don't expect many of you to understand (some I know will) but it is just another thing that I am going through as the surgery days draw near.
We wanted to thank everyone that has been sending us things off of our Amazon registry for the girls. We never had the chance to have a baby shower and since there are quite a few things we need before we are able to have one we really appreciate the help this way. It would be overwhelming to try and get everything we need to get these girls home on our own. You all have been so generous and we will never be able to thank you enough! We seriously cannot wait till the day that we are able to help out another family in a situation like ours. To make someone else feel that way that you all make our family feel is something that I literally cannot wait to do!!!
I may not be updating as much in the near future because things are going to be getting crazy. I will try my very best, but we are also trying to be so careful because we are generating some media attention. We want to be able to focus on our girls and therefore we haven't posted dates or anything like that in fear or being bombarded as they days get closer. If you are involved with any type of media outlet that is interested in our story please contact Ashley Moore in the CHOP PR department. She has been helping us since day one and is our go to when it comes to this. She will be able to answer your questions regarding our plans with the media. Thank you so much for understanding!! Her information is as follows...
Senior Public Relations Specialist
Riley and I are also so overwhelmed that our facebook page has over 10,000 likes on it. Because we have so many people liking the page daily I will post the links to the other pages that we have, to keep everyone in the know. We so appreciate each and every one of you. We appreciate the thoughts, the prayers, the cards, the gifts, the donations, etc. We are so incredibly blessed and you all figure out ways to make our day that go above and beyond what we ever thought! Thank you again so much!!!
-For the girls surgeries to go smooth and to have a smooth separation
-For the surgeons, doctors, and teams to have wisdom in how to care for our girls
-For Riley and I as we are about to face some of the hardest times in this journey
-For our finances are we are starting to get ready to start the process of looking for a place to live
-For our families as they process and deal with the girls being separated as well (they are such a wonderful support system who all love the girls so much!
-For sleep for myself and I and having a harder time getting some now-a-days
-For the girls skin to stay healthy and stretched until it's needed
-For the girls to have a quick and speedy recovery, that the pain they feel will be lost in their memories and they will be back to themselves quicker than we are anticipating.
-For Riley and I as the girls will be transferred to yet another floor with a new team of doctors and nurses after surgery. I have a hard time when it comes to change in this place and am very nervous about being under incredible amounts of stress and in a new environment with a team that I am not familiar with and who are not quite familiar with the girls.
THANK YOU SO MUCH FOR YOUR PRAYERS! THEY ARE FELT AND THEY MAKE THE DIFFERENCE!
My 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!