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.
So I am learning that with every new milestone there comes new challenges. The girls have been doing really well. As of today they are 8 weeks and 1 day old (38 weeks and 5 days corrected) so they are right around the corner from being term. Being "term" means that they are going to be able to start to meet some milestones, which has been long awaited for me. I was getting very bored of having babies who slept all day and didn't interact very much. And now I find myself on certain days almost wishing to be back there.
They are definitely becoming babies now rather than just sleeping skin and bones. They are gaining weight fantastically and are chunking up. They are getting cute pudgy cheeks, and little tiny thighs. It is amazing that when I am out at the store I look at the baby clothes and will think something newborn size will fit them because it looks so small compared to everything else. But I will bring it back to the girls and they will be swimming in it. But they already seem to be so big to me.
They are now beginning to develop their little personalities which is so fun. They each have their diva moments, but for the most part seem to be pretty well mannered little girls. Although there are definitely times where all I do is stand next to the bed and hold pacifiers all day long as they ping pong back and forth who is going to be awake and cranky, and who is going to be happy and asleep. As soon as I think they are both happy and asleep, the other wakes up, and on and on it goes. But their sweet little faces and coos make everything worth the while.
I miss them terribly at night. I am really struggling on how much to be at the hospital and how to reschedule my time now that Erin is able to nurse, and that Abby will soon also be able to nurse. I feel like it is so important for me to be there as much as possible to have that bond with them. But at the same time it is tough. Some of you who read this may not quite understand this problem, but trying to keep my pumping schedule the same as the girls eating schedule is really difficult. When I am there and able to nurse I will be on their times which is great. But Erin doesn't eat all the milk I produce so therefore I need to pump after I feed her which makes me not "full" by the time she is ready to eat again making it harder for her to get milk. And since she is still a preemie she gets tuckered out pretty quick. And then other times I will be fully ready to feed her and she won't wake up for her feed, and to keep things on schedule they will feed her through her NG tube, therefore I have to pump again. So it is just this whole ring around the rosie deal right now and it is very hard for me.
I didn't realize how emotional I would be about breast feeding my girls. I was so incredibly thrilled when I was told this past Thursday that we were going to try. And that Erin actually latched and was seeming to be a little pro. It was like there was a little bit of normal in this whole crazy cloud of not normal. I was told to keep doing the same thing through the weekend, that if she was showing cues, to breast feed. And so that was what I did. Saturday was great. I fed her twice and she was really seeming to get it. And then on sunday I got there and was all ready to breast feed when all of a sudden I was told no. They said I couldn't do it because there was no way of telling how much she was getting and that they didn't want to feed her too much (since she was still getting her NG feeds on top of breast feeding). And unfortunatley because of the girls issue of being conjoined they are too big to fit on the normal scale they use for pre and post breast feeding weights. So all of a sudden I hit a brick wall and I cried. Right there in the middle of the NICU on a Sunday morning I cried. I have been able to hold it together fairly well for the past two months but this was just something I couldn't handle. They wanted to take away the one little bit of normal that I had. The one thing that made me feel like a mom being able to bond with her baby. It was just so special to me and they all of a sudden were telling me no. So needless to say the attending came to talk to with me and explain what was going on. And my nurse figured out that another "larger" scale was able to make the same measurements as the normal scale and that I would be able to breast feed. So needless to say today went way better. I was able to breast feed miss Erin and she took 18mls, which is a little less than half of what she gets per feed every three hours, which is fantastic for her. It is such a great feeling knowing that I can provide everything my baby needs to live. It gives me new purpose.
Now here is where things get complicated. Not only is my pump schedule all crazy now, but so is my daily schedule. Trying to figure out what feeds I can be there for and which feeds she will be awake and ready to breast feed for. The shuttle for the house only runs between 9:15am-8:30pm which means I just miss the 9am feed and the 9pm feed. And then there is her 6pm feed which is right when dinner is at the house. So I am just all knotted and torn up about when I should be there. You get people who tell you to get out of the NICU and do other things, but then at the same time if my child were here with me I would be feeding her at all those feeds and so it feels selfish for me to not work around their schedule. And I could easily be up and there at 9am for her feed, but then I would have to drive (same with the 9pm) and when I drive I have to pay for parking, and doing that everyday adds up really quickly.
Being a NICU parent is hard. So hard. And I would never wish it on my worst enemy. Even something so simple and natural as breast feeding turns into something crazy. I can't wait until the day that my sweet little girls get to go home, see the sun, and smell the fresh air. That will be one of the absolute greatest days of my life! Our family will be whole again and back together. The girls definitely miss their daddy, and I miss my husband. The days move slow, but times moves fast. And I am trying so hard to soak in these sweet infant days because I know they will be gone way to fast!
Please keep us in your prayers. The girls will have an MRI coming up in a little over two weeks, and then they have surgery scheduled for the end of October. Please keep praying for wisdom and guidance for these incredible doctors and surgeons. I know that they are being used as the hands of God to work on my little girls. He has a great plan for them and we are trusting in Him to bring that to completion. Thank you so much for your continued support! And thank you to all of you who ordered tshirts! I know that Riley and I can't wait to get ours!
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!