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.
It's amazing how fast we take being "healthy" for granted.
We have always been super careful when it comes to germs and the girls. While the girls were in the hospital they got several illnesses. The had a round about with RSV and ended up getting rhinovirus 3 times. Abby even ended up with some type of blood infection that made her septic. Almost every sickness would land them in the ICU for at least a week. Needless to say we have seen how easily the girls can head down hill when it comes to sickness, so we have always been super super careful. We have had a few little colds since being home but nothing like what we have going on now.
On Thanksgiving Erin started a little cough. I honestly wasn't sure if it was because we weaned off of one of her reflux medications and reflux was just bothering her, but then the next day I knew she was sick. Since Friday Erin has been battling high fevers, extreme stuffiness, and a horrible horrible cough (which I am imagining means her throat is not very happy) We went to urgent care on Saturday night, and then to the pediatrician on Monday which between the two of them resulted in a steroid (which isn't doing much) and the recommendation of doing some breathing treatments here and there (which also hasn't helped). I was hoping that Abby would make it without getting sick since she was fine the first few days, and then on Sunday night she started a little cough and I knew. When we got to the pediatrician on Monday she had a fever of 103 and was coughing, super stuffy, and wasn't able to tolerate anything in her belly, even Tylenol didn't want to stay down. But I finally get enough Tylenol in her to get her fever down which in turn helped her tummy but it didn't help the cough or stuffiness. So fast forward to today (Wednesday) Abby still has a fever when it is not being controlled with Tylenol/motrin and Erin is the same. On top of all that we (the doctors and myself and Riley) are worried about the girls and their breathing...
When the girls would get these kind of sicknesses in the hospital they would go downhill very quickly (respiratory wise). Sometimes in the course of just a few hours they would be struggling to breathe. So with this sickness we are being super careful. I am so grateful that I have a friend who lives close enough who has some of the same medical supplies for her daughter that we have for the girls. She was able to meet me and get me a few pulse ox stickies since we had only gotten 2 with our pulse-ox over a year ago. Yesterday morning I had texted her about how I was worried about Erin and needed some advice from another mom who deals with the same issues and she found out we needed these and made it happen that we got them that day (along with all of her daily responsibilities with her own medically complex child). It was a godsend and we are so grateful for her and her family!! Erin had been showing some signs of possibly respiratory distress and the only way to know for sure was to hook her up to the pulse ox. Once we got the stickies I hooked her up and she was lower than she normally is for her oxygen levels but not in an area where we needed to get help. So we have just been monitoring her (an Abby) hoping and praying that it doesn't come to that.
Having children that had been in the hospital for so long gave me the chance to see things. You see how fast things change, so see how bad a little cold can get. It's a constant fear that you always carry with you. I thought once the girls weren't "babies" I wouldn't be as worried but man this sickness gave me a pit in my stomach a few times so far. It's weird there are points where I would think "just admit them to the hospital so that they can be taken care of" but I have to remember that home is best and just because I am nervous doesn't mean they need to be there. I never want us to be in a place where they need to be in the hospital because of a sickness but there is a little part of me that wishes we were just so I wouldn't be worrying all the time. I never thought I would think those thoughts....wanting my child to be inpatient, while being in the hospital brings fear, for us it also brings a weird comfort in knowing that the people most qualified to help are right there. I have to get into the mindset that I can do this and that the girls will get through it.
Now on top of the girls having this sickness I have now started feeling under the weather (sore throat, over tired, stuffy, sneezy) and then this morning Riley woke up and was feeling it. So pray that this some how breaks and our family makes it through all this nasty and that we don't get it again. If Erin is still sick come Friday we will go back to the doctor to figure out what to do next.
On another note we had a lovely thanksgiving and hope that you all had one as well. We are now in full Christmas swing despite being sick. I can't wait to see the girls figure out how to open presents and play with some new toys. Lately their eyes light up when they get to play with something new. Before they didn't really notice if a toy was new or not, but now they definitely do and it is so fun to watch their little wheels turning. Erin is beyond curious about the Christmas tree and wants to be under it all the time. Abby LOVES Christmas lights. We decorated the outside of our house and you could see the wonder fill her little face (even though she's sick). I can't wait to do the drive through lights with them this year and see how much they enjoy it. Christmas has always been my favorite holiday. There is so much sparkle and warmth and family time that comes with the Christmas season and I love it. I love that this will be the girls second Christmas at home! We will be able to spend it not only with my family, but also with Riley's family since they are all able to come down for the holidays this year! It is going to be wonderful. We hope and pray that you are able to spend quality time with your friends and family this holiday season. We are trying to take a little step back from the hustle and bustle and enjoy being together and we pray you will too!
Thank you so much for all of your love and support!! We are beyond grateful!!!
We are halfway home from Philly!!! We were up in Philly this past week for a bunch of follow up appointments. It's a long trip but it is always nice to see all the girls primary doctors and surgeons and be able to update them on progress and voice concerns.
We were able to stay at the Ronald McDonald house which is amazing. We absolutely looooove the Philadelphia Ronald McDonald house and all that they do for our family. Every time we go to Philly they welcome us with open arms and do anything that they can to help our family. It really is like going to our home away from home. We even get to see other families that I had been there with when the girls were still in the hospital. Funny thing, when you make friends with other people who have children with special needs, you end up seeing them fairly often since you share the same doctors and use the same hospital. It's so fun to see other little ones who were so sick doing so well and running around and enjoying life. It was also really fun to see the girls interact with other kids at the Ronald McDonald house. We don't go many places where I can put the girls down and let them just explore (mostly because of germs, but RMH is kept very very clean since there are children with compromised immune systems staying there). Erin is so independent now that she is crawling and she would crawl right up to the other kids. And it was so fun to see other kids coming over to Abby to hand her a toy or say hi to her. It made my heart happy to see them be able to be typical little kids playing with new friends!
Our first appointment was CT scans. The girls had to be sedated for these since they don't understand "stay still" yet. Both of them did wonderfully and came out of sedation great. We then had to wait a few days till we were able to see our surgeons to talk about what they saw.
The next day we saw neurology. Mind you we have this specialist also at home in case of emergency, but our primary neurologist is in Philly. They were very impressed with how much progress the girls were making . So much so that they decided to get EEGs done. They suspected that the amount of seizures the girls have had were decreasing and wanted to check it out. So we got EEGs done and amazingly they didn't see any seizures!!! Granted they have some abnormal brain waves but that is to be expected, but the fact that they didn't see any seizure activity was HUGE! So we are going to start weaning them off of some seizure meds!!! God is good!
We then were able to see our plastic surgeon to talk about the CT scans and future plans for reconstruction. The girls CT scans looked great. There really weren't any changes since their last ones in February. Erin's skull is actually trying to heal itself and has a little bit of bone regeneration going on which is really interesting and not expected. And Abbys ventricles look amazing. After surgery I was told that there was a 70% chance that Abby would need a shunt at some point in the near future, but she hasn't had any extra fluid build up and it really is something that can't explain which just proves what miracles these girls are. God just keeps proving himself through these girls over and over again!!!!
We then were able to see our general surgeon and the girls dietician. Unfortunately both girls have lost a little bit of weight (most likely because they are moving more than they were before). Because of that we changed up their diet a little bit to add some more calories. I am blending 70% of their diet now so I am just adding some extra fats and adding a little more of their pre-blended food to up their calories and hopefully get them gaining some weight!
Then today we got to check in with the girls' Rehab doctor. He was impressed with the new things that they are doing and how much has changed in the 6 months since we last saw him. We were worried about Erin showing some signs of being autistic but she has since then changed in the opposite direction and is much more engaged and looks in your eyes much more than she was. So as of right now he really isn't worried about that. Our biggest hurdle right now is getting the girls eating by mouth.....
The girls right now get feeding/speech therapy 3xs a week. Abby has 3 feeding therapy sessions and Erin has 2 feeding therapy sessions and one speech session. They've made progress but as I have mentioned in other blog posts the progress is just incredibly slow. Slower than we would really like to see. Because of that we have been recommended to have the girls involved in CHOP's intensive feeding clinic. This would be intense feeding therapy. The girls would meet with a therapist would will work with them and their eat for 3 meals a day 5 days a week. Because of the intensity we would be staying in Philly again most likely for 4-6 weeks. This is something that I know would benefit the girls but makes my stomach hurt....
We have been home almost a year (Just a few days from now marks a year of being home) and I am just starting to have somewhat of a life outside of the girls and all their "complexities". I'm finally starting to make some friends and do things other than just taking the girls to therapy and dr. appointments. So the thought of having to stop doing all that and go back into the isolating world of living at the Ronald McDonald house without my husband doesn't really appeal to me, but I know it's something the girls really need. The only little snag about all this is trying to make sure that the girls would be able to get their other therapies (PT and OT). So more info to come on all that when I get it, but it looks like that will be something that happens in our near future.
We are so thankful that everything went so well at these appointments. It was fun to see all of the girls doctors, nurses, specialists, and many other people. We also got a chance to see Riley's family for a little bit which was nice. And it is always fun to watch the girls with my mom. My mom comes with me and helps me when Riley needs to stay home and work. Without her I don't think I would be able to travel for these appointments like a do. We are very grateful for her!
Thank you so much for all of your prayers and well wishes! They are definitely felt. We are so excited for the holidays coming up and all the fun that comes along with them! We pray that you and your families have wonderful holidays as well!!!
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!