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.
A lot of times people don't understand what goes into the day when you have children who have "medical complexities" whatever that may look like. There is a lot of joy, but also a lot of sweat and tears. So what does our normal day look like....
Usually we are up between 7:30 and 8 am, and this is after waiting up till midnight to put up the girls' last feed, and then usually up at least 2-3 times during the night since Abby likes to wake up screaming for reasons we can't figure out (teeth, dreams, waking herself up by peeing, we have no clue). Anyways so after around 5 hours of sleep I am up and running. I usually try to let Riley sleep a little since he works at night and is up later than I am most nights. Our morning consists of Turing off the girls' feeds at 7:30, then depending on the day they will maybe sleep a little longer or just yell until I get them out of bed. A lot of morning when I go in at 7:30 I will find that either they pulled their feeding tube apart and there is formula all over the bed, or they peed through their diaper, or pooped through their diaper. I would say at least 3-4 days a week require a sheet change for some random reason. I will get them out of bed, change two diapers, change them into their day clothes, head up and down the stairs twice to bring them to the living room. Usually around this time Riley is awake and will keep the girls occupied while I draw up 11 medications (and Riley will do this too some morning when he is home). The girls will get their respective medications and then I move on to making formula for the day (I want so badly to be doing blended feeds I just have to figure out how to get it into the schedule). I make up two different batches of formula because of course the girls are on different formulas. Once there is a new formula I fill their feed bags, change the settings on the feed pump, grab new icepacks, and pack their feeds up for the day. By 9-9:30 the girls both have to start their first feeds. Now you would think...oh not too bad you hook them up and they eat and you can get stuff done.....wrong....since the girls are more mobile (rolling, sitting up, almost crawling) they get SO TANGLED to the point where every 5-10 minutes someone is yelling because they can't move their legs because they are twisted up. Either that or because they play with the tubing they have gotten the extension pulled out, or pulled the tube out of the extension and are soaked with formula which then requires another outfit change and diaper change. Which a lot of times is pretty frustrating because I love to have them match or coordinate and to have to change an outfit before 10am is so frustrating. Then depending on the day of the week we either have to be at therapy or have therapy come to the house. To go to therapy it requires new diapers, shoes, hair done, diaper bag packed, toy bag packed, food for speech packed, both feed bags packed, both girls brought out to the car, everything packed in the car, and getting out of the door on time without something happening or going wrong. We then head to therapy for anywhere from an hour and a half to three hours. And this a lot of times all happens before 1pm. And usually at some point in the morning the puppy has to be brought out 3 times, and usually destroys one of her toys which requires vacuuming so the girls don't choke on a piece of fluff or plastic. After therapy is nap and then whatever errands need to be run or doctor appointments that have been scheduled. Thankfully Friday-sunday the girls don't have therapy and we are able to "relax" but those are the days that Riley works basically 12 hour shifts and is gone right after the girls are awake till well after they're in bed. And right now his car is broken, and so are his glasses (he can't drive because he can't see) so I have been getting him to work and hoping someone can bring him home because I can't wake the girls up to go pick him him.
Needless to say our days are insanely busy and there is usually something going on that likes to make the days longer and harder (sick babies, broken cars, broken glasses, waiting for medical supplies to be delivered, specific phone calls that need to be made). But there really is a lot of joy. Therapy for the girls is serious hard work that usually involves a few tears, but it is amazing to see their progress. To see them trying to do things that we didn't know if they would ever be able to do. Both girls are working on standing (assisted of course) but Erin has started holding her balance fairly well and just need someone to stabilize her and she can stand for a little over a minute! Abby can stand with help for a few minutes as well. It is so amazing to watch their skills unfold. With so much uncertainty its so comforting to see them doing things. We recently went to visit CHOP for some appointments, one of which was the girls developmental appointment.
I always struggle when it comes to developmental stuff because I know how behind the girls are. I know that the girls don't know any different and they are happy where they are but it hurts my mama heart knowing they can't do what others their age can. And to have it confirmed to me and talking about just makes my stomach feel like it is in knots. We found out at this appointment that the girls developmental level is around that of an 8 month old. Which is decent considering they were separated a little over a year ago and had to start over from that point. They also are a little ahead in some areas and a little behind in others when it comes to that 8 month mark. They also think Erin may have some precursors of autism but cannot test for it until her developmental age is old enough. I know that the girls are happy and don't know any different but my heart sunk at that appointment. On the ride home that day I shed a few tears. I knew they were behind but to hear them tell me that they think my almost 2 year old girls are acting like 8 month olds. I know they've been through so much and they really are doing well, but during this journey of having children with special needs its a roller coaster of triumph and grief. Somedays are full of triumph and excitement and goals met, while other days are full of helplessness and grief of the life that could have been. It's an exhausting ride of emotions that never seems to end. But the amount of joy is also so amazing. Seeing the smiles, hearing the giggles, and rejoicing in the milestones that others may take for granted is so special. Everything means so much more because it is so much more.
Since the last time I blogged I have been working my Thirty-One business and I really love it! (There is a huge sale going on right now if anyone is interested!!! go to mythirtyone.com/heatherdelaney1 and shop the jump into July party) I love the products and I really enjoying meeting new friends, and interacting with other people during the days where I don't get much interaction. They paychecks are also helpful since we have really been struggling since Riley lost his job. We just can't seem to catch up. Thank God for the girls SSI because if it wasn't for that we wouldn't be able to stay in our townhome. Riley has a new job but it was a bit of a paycut, plus we had a trip to Philly so Riley has missed work and is not making as much as he was before and so it has really thrown things off. Between the bills, the girls medications, and not having health insurance ourselves anymore every month just seems to get more expensive. And on top of everything our tax returns got lost in the mail so we are still waiting on those which we filed months ago , go figure. It's hard because right before Riley lost his job we were finally "stable" and could get everything paid for and not have to worry. It's amazing how quickly things change.
On another note the girls turn 2 this month!!! I can't believe it!! There was a time where we didn't know if they would ever celebrate their first birthday let alone their 2nd. They really are such sweet little girls. I wish each one of you could get the chance to hug and meet these little girls. Erin is such a little snuggle bug who is so persistent and independent where as Abby is a little spit fire who is always full of giggles and smiles and loves to play. They are so unique and so special and wonderful all wrapped into a little package. I can't wait to watch them grow into little girls who enjoy life to its fullest. We can't wait to celebrate this milestone for them. Birthdays have such a special meaning when you didn't know if they'd be there for it!
We still are so grateful for all of your prayers and well wishes. This life is not easy but because of your prayers and encouragement we are able to walk it with joy despite any circumstances we endure. We will have more appointments for the girls come the fall and will be finding out more information regarding reconstruction (they still have no bone of the top of their skulls) and upkeep of the girls meds and feeds. Our lives have been heavily impacted by each and every one of you, we are so grateful for you.
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!