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.
Well it is officially turning into fall here in Philadelphia. The air is becoming crisp, everyone is back in school, and pumpkin spice has made its return! I recently found out that my new favorite thing is a pumpkin spice latte from Starbucks, which is terrible since Starbucks is right across the street from the hospital, meaning I will be finding myself there more than I should!
Along with the fall showing up, means new things for the girls as well. They will most likely be having two surgeries for their separation. Their first surgery will be taking place at the end of October and then 2-3 months later they will have another surgery that will fully separate them. I am becoming more and more nervous with each passing minute, but at the same time there is a weird sense of excitement and anticipation for what is to come. The day when I will be able to hold our girls like normal little babies will be a day that will go down in history for our family. I know there are always so many risks when it comes to surgery in general, let alone one that is being done on infants, but I have a sense of calm. They have beat the odds thus far and have passed tests with flying colors. I know that they will be able to pull through this and continue to be the little rockstars that they already are.
With the start of October, things will begin rolling. They have an MRI coming up next week along with a CT. Then the week after that we have a meeting with some people involved with the girls separation, and then before I know it the day of surgery will be here. I am trusting that God has all of this already planned out and that he IS going to work this all out for good. This is going to be a very very busy month. We have family coming to visit and see them before their surgery, as well as Riley (my husband) for our ONE year anniversary!
I just want to say how incredibly grateful I am for my husband. I feel like a lot of the time he gets lost in the background with all of this because he is home and not physically here at the hospital. But that couldn't be farther from the truth. He is doing one of the hardest things, and that is being away from his family in one of the hardest times. He doesn't get to snuggle the girls when they are having an off day like I get to. He can't swoop in and say "Daddy is here to save you", because he is at home making a life for us to come home to. He is planning for our future so that when the girls finally have their discharge day we are able to go home to a place where there is room for the girls, and they will have everything they need. When I married him a year ago I never anticipated this. I never anticipated what is supposedly the hardest year of marriage to have this situation which could potentially make is 50x's harder. But Riley has been my rock though all of this. He has my encouragement when I don't think I can do this anymore. My cheerleader when days are hard. He is my sounding board when I don't know what to do. He is my best friend in the whole entire world, and I am beyond grateful that God gave him to me. That I am allowed to share my life with him. He is the most wonderful daddy and love his girls with all his heart! And I know it tears him up inside that he can't be here with us all the time.
" Riley I love you with all my heart and am so blessed to be your wife! This year has had many ups and many downs and lots and lots of twists and turn, but you have stuck by me through it all. I couldn't ask for anyone better to be "doing life" with. I can't wait for all the exciting events that this next year holds as we have begun to build our family. The three of us can't wait to see you this weekend! I love you"
Now back to business. Besides the girls upcoming surgery they are doing well. They needed a blood transfusion today for the second time, because their hemoglobin levels have been low again. But they are little troopers and are doing well through it. They both did well getting their IV's and didn't have nearly as many issues getting them as they did the last time, THANK GOD! They are definitely becoming scoochy little babies. But I am loving every second of it, and watching their little personalities form. They are getting much better at taking the bottle, and Erin is doing well nursing. It just depends on how awake they each are at each feed. So it is still quite frustrating for me because we will go through everything and then they will fall asleep and barely take anything. But I figure if I keep on trying eventually they will get it. I tried nursing Abby once, but she didn't quite get it. She was trying to latch but just got really frustrated. So we are letting her get a little more used to the bottle (which is still not the easiest for her) and then we will be trying again with nursing. There isn't a huge rush since her feeds aren't condensed yet, so she still has a little time to figure things out. My goal is that when they are able to come home they will be exclusively breast fed. And if worse comes to worse, I just have to keep pumping...ugh.
But overall things are good and we just keep persevering. I am reminded of the verse in James 1:2-4 that says "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." And let me tell you, this is a trial but I know Riley and I will be all the better for it.
*Another Side Note*
We restarted the T-shirt fundraiser since I had a few people who were still interested that missed a chance to order one before. I will post the link at the end of the post if anyone is interested in ordering one, or maybe another one ;)
We also are asking that all those who have ordered a shirt take a picture of themselves in the shirt and send it to us. And if you aren't able to order a shirt you can take a picture of yourselves supporting the girls in some other way (either with a sign, or a picture, be creative!) and send it to us as well. I am wanting to make a collage with all the pictures and put it in the girls room. This way we have a visual of all the wonderful people who are loving, supporting, and praying for our sweet girls.
Please remember to keep us in your prayers as we go into the month of October. We have a lot of scary changes happening and all the prayers you guys say really give us peace. We know God has a plan and will turn everything out for his good!
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!
So I had a weird moment today. I was scrolling through Facebook and started seeing all of the first day of school pictures. I love seeing pictures like this, either the first day of school, christmas, easter, etc. Where it seems like everyone is taking the same picture with different people in it.
The thing that was weird was that I realized that there is still life going on outside of what I am doing. Being here in Philadelphia feels almost like time is frozen. I have my routine, I wake up, pump, get ready, eat breakfast, go to the hospital, pump, eat lunch, hold the girls, pump again, go back to the house for dinner, pump again, watch some tv, pump again, and go to bed. This is my day literally every day. It's hard to realize that life is still going on. That my friends are still living their lives, and having fun and I am stuck in this loop that just keeps repeating itself.
Now I know it sounds kind of bad, especially since people say "you need to get out", "you need to do other things than just sit at the hospital". But if you've every had a child or, in my case, children in the hospital you feel incredibly guilty doing anything other than being with them. Yes I go to the store and shop sometimes, and yes when my husband visits we do things, or when I have visitors we go out to eat. But doing anything other than being with them feel just wrong. They are my children, I should be the one taking care of them, the one changing all their diapers, the on who calms them when they are upset, the one who feeds them, the one who wakes up with them at 3am. It's just so hard to hand all that over to people that you don't even know. And you have to put your full trust in them to basically not only be their nurse, but to also "play" the "mothering" role for you while you are gone. It is just such a weird feeling knowing that you are a new mom, but not fully feeling like you are.
One thing that super bugs me is when talking to people about having my babies in the NICU, they say, "oh....well at least you can catch up on your sleep". That one makes me almost want to jump out of my skin (no offense if you have said it to me before, I know it is meant in a nice way). But what I haven't really written about on here is all about exclusively pumping. The reason that statement drives me crazy is because I wake up every three hours during the night to pump for a half hour, and when you add in the time it takes me to set everything up, and then put everything away, and label the bottles, you're looking at a good 45 minutes every 3 hours. Which in my opinion is harder that waking up with your baby. At least when you wake up with your baby, you get those warm baby snuggles, and get to look at that super cute little face, and even though you are exhausted, you know its worth it because of those sweet eyes that look at you so lovingly. When you wake up to pump it isn't like that at all. You attach to a machine and try to stay awake are you are milked dry like a cow. Waking up to an alarm takes a lot more self control than waking up to a screaming baby. When you have the baby you have no choice, but when it's your alarm it is so easy to just turn it off. So to those who say you get to catch up on your sleep, it makes me chuckle because I am just as tired and a new mom who has their baby at home, if not maybe more because I don't nap with my babies since I am at the hospital.
Anyways enough of my "rants". The girls are doing well! They are, believe it or not, 3lbs 15.5oz each already! I can't believe it! They are growing so fast. It is really amazing. Their events (heart rate dropping, and O2 levels dropping) have gone way down, to the point where Erin hasn't had one in about 3 days, and Abby only had around 1 today. They are starting to get a little baby chunk going on, where their cheeks, legs, and arms are starting to plump up and gosh do they look so sweet. Riley and I talk very frequently about just how darn cute they are! We also had a meeting this past friday about the way the girls are going to be separated and at one point there were 18 people at the girls bedside. That was a great meeting, we learned a lot, but it was also a little overwhelming for me at least. It was a lot of really really smart people staring at us. At least that is what it felt like. They wanted to look at the girls and be able to visualize how everything was going to go, but they keep asking what Riley and I think, and if we have any questions. And at points you are just overwhelmed with so much information your brain is just trying to process, let alone think of questions. But overall it was a really good, informative, and encouraging meeting. Their surgery that will start the separation process will most likely be sooner rather than later!
I just wanted to throw a quick shout out to those who have purchased T-Shirts to support the girls! We really appreciate it, and all the donations that are being made on top of buying shirts. I know that Riley and I cannot wait to get ours so that we can wear them all the time! But please if you are still interested in getting one, purchase it soon. They are only going to be available for another 8 days. So please don't forget to order yours asap!
A little background on the shirt and the meaning of the design. Obviously the word entwined plays into the girls conjoined factor. The infinity symbol also stands for conjoined twins even though most people don't realize that conjoined twins is one of its meanings. Also purple is the color of preemie awareness. So the shirt ties in the fact that the girls are twins, conjoined, and were born premature. This way you can explain to others if they ever ask when you are wearing yours. All you have to do is go to the post before this one, and you can click on the photo of the shirt and it will bring you right to the website!
Again thank you to all of those who are supporting and following our family. We are completely humbled by the outpouring of love we have received!! You have all been such an answer to prayer! Every time we think we aren't going to be able to keep going, God provides, and it a lot because of all your prayers! Our God is good, and He knows what we need, and when we need it! And he has been using all of you to meet our needs, more than you all realize.
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!