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.
The weather here in NC is finally feeling like spring and turning into summer. Today it was 80 degrees and it's filling my heart with so much joy and excitement for the girls first summer being home.
This past month has been yet another trying month for our family as Riley lost his job. He had been thinking about looking for a new job but wasn't prepared to loose the one he had. There were a few very stressful weeks trying to figure out what to do, but thankfully an opportunity arose for Riley to work at a restaurant very close to home. So he started working there last week. He will be working there until he figures out what he wants to do and it gives him some time to figure out without worrying about not having money coming it. We are so grateful that they offered him the position without any hesitation. That being said we aren't quite used to the new hours. He went from working a 9-5 job and having the weekends off to now working late nights and weekends. It makes things harder on me because bed time in not the easiest. By that time of day I'm wiped out and so are the girls, so it was really nice to have an extra set of hands, but now it's just myself and the girls. We manage but it is definitely a huge transition for us and are asking for prayers to manage it. Riley feelings like he is missing out because he has to work weekends now and I feel like I'm burning the candle at both ends being on my own with the girls so much. But God gives strength to weak, and this too shall pass. I just keep reminding myself that this is only for a season.
A wonferful thing that happened this past month is we finally found a church that we are going to call our "home" church. We have really been struggling with this. And coming from being very involved in our church up north it was a piece that was missing. We stumbled upon CFA through a flyer that was sent to us in the mail when we had first moved into our new place. Turns out the Campus Pastor has ties to close friends up north and it just felt like God ordained it all. We have been struggling trying to find a church. What a lot of people don't realize is that when you have a child with special needs you don't want to make anyone feel uncomfortable by having them care for your children. So going to church was a struggle in general because we didn't want to put the girls into a nursery. It's something I never even thought of and I went to school for ministry. Being parents to children who have special medical needs has really opened Riley and mines eyes to a whole different world. Thankfully the church we are going to now is incredibly willing to help us in any way possible including having the girls be able to be in the nursery so Riley and I can enjoy church without the stress of the girls being loud or cranky. So this past weekend was the first time ever we were able to bring the girls and have them have fun in the nursery while we sat and enjoyed church! God is good!
The girls are doing so well! They've deal with nasty allergies and also food allergies and are still doing well. We have to take Erin to see an allergist since she seemed to have a reaction to one of the blends I made for her. We are worried about any reactions getting worse so we have put the blends on hold until she can see an allergist and we can get some answers as to what may be bothering her. I can't wait to get back to blended feeds! The girls tolerated the real food wonderfully and it made me happy knowing they have natural nutrients going into them instead of just pediatric formula (not that there is anything wrong with those who just do formula, it's just personal preference).
The girls just keep progressing and it is so fun to watch. I know I have said this before but it is such a privilege to be the girls' parents. Riley and I talk about it all the time. How we get this front row seat watching such an incredibly miracle unfold. Erin is so so close to crawling. She gets up on her hands and knees and rocks back and forth. I think she will be crawling around before the month is over. Abby is so close to being able to sit. When you sit her up you can hold her at her hips and she can hold the rest of herself. The girls also have been able to try out some gait trainers (almost like a large walker for those who don't know what that is) so that they can learn to start taking steps. The girls don't have anything that they can sit it at the right height for them to start playing with their feet and standing themselves up. Most walkers or seats are too short and require too much effort for the girls to put any weight on their feet, so it was really neat to see them in something that gave them that opportunity. I love watching their little faces light up with they realize something. Erin just today started waving! I almost fell over when she waved to one of her speech therapists this morning at therapy! And she did it again to her OT. She also is shaking her head no at things and knowing what that means. It is so fun to see her interacting and able to express herself. And Abby is becoming more and more of a little spitfire. That little girl has an opinion on EVERYTHING and will let you know when she isn't happy. Her little piggy tails make her look so mischievous as she rolls around getting into anything her little hands can reach, but I'm loving every second of her exploring and learning the world around her.
We have also added a new member to our family this month. We adopted our puppy Maggie about two weeks ago. She is the sweetest girl. She is a lab mix and was the runt of her litter. Riley has been wanting a dog for what seems like forever and we thought that since the girls are doing so well there is no better time than the present. Our house is a little more chaotic that it was before but there is also a whole lot of cuteness going on too. We are hoping the girls and Maggie grow up to be very best friends. Riley and I both grew up with dogs and are so excited for the girls to be able to have the same experience!
At the end of this month we are headed back up to Philly to have more follow ups. We will be meeting with the girls Rehab doctor to see their progress, we will meet with the girls neonatologist to see how their development is doing, and we will also be meeting with our general surgeon and nutritionist to check up on Erin since her surgery and both the girls on how their gaining weight and growing. We were hoping to be able to stay long enough to go to the Fetal Reunion at CHOP to see the doctors that delivered the girls and all the different doctors involved in the girls care but hotels in Philly are not cheap and it would require us staying 4 extra days and we just can't afford that right now. But we will be able to see Riley's family in-between appointments which will be wonderful. We miss them like crazy and can't wait for them to be able to have some quality time with the girls. We are hoping for all good reports!!! We aren't looking forward to the drive but we do what we need to. We will also be making appointments for the end of the summer to get more scans to make decisions as to when the girls should get their reconstruction done.
Reconstruction is something that feels like it is always looming in the back of my mind. Part of me feels like I can never fully settle in at home and get into a routine because not only are we going back and forth for appointments all the time, but there are more lengthy hospital stays in our future and the thought of them makes my stomach hurt. They're expecting the length of hospital stay for the girls to be around 1 month for their reconstruction meaning Riley will be home working while we are up in Philly again. These are all things that need to happen that are good things, but they are not easy to go through. The girls will need this surgery done a few times in their lives and it's not an easy pill to swallow. Something I would never wish another parent to have to deal with.
As summer approaches we are so excited to do some fun family outings! We went to the park yesterday and loved every second. The girls had such a fun time and so did Riley and I. We are so excited for the warmer weather and swimming!! The girls had aquatic therapy when they were in Rehab a CHOP but we weren't able to find a place to do that here in NC. So we can't wait to get the girls back into the pool to gain so more strength in their little bodies. It helped them so much that I'm excited to see how well they're doing at the end of the summer because of all the excursive they'll be getting from being in the pool. Our community has a pool in it, and let me tell you we will be there everyday that we can!
We are so grateful for this season where we can be a family and not worry about much other than watching the joy on the girls faces as the have new experiences. We are also so so grateful for each of you who follow our family and support us. You are all truly answers to prayer!!! They say it takes a village to raise a child, but in our case it's taken villages from all over the world!
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!