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!!!
This hurricane has been the talk of our town for the past week and a half (feels like longer). By Wednesday every thing was being bought out of the stores. Water bottles were gone, bread was disappearing, and low and behold all the eggs and milk seemed to be flying off the shelves. We all joke that everyone was going to have a French toast party, but in all reality everyone was preparing for the hurricane.
We live slightly north of Charlotte, in driving distance it is about a half hour (with no traffic). Charlotte is roughly 3-4 hrs from the coast depending on where on the coast you are going, so we knew we weren't going to get the worst of it. My sisters (Dana and Rachel who are also identical twin girls) go to college at the University of North Carolina in Wilmington. They were evacuated and all classes were cancelled until further notice since Monday. It's been tough for them to watch the town they've lived in for the past few years being torn apart by this storm. We are hoping and praying that their apartment and all their stuff is still safe and dry. They aren't sure when school will start back up and they are worried since it is their last semester before they graduate. One of them is student teaching, while the other is doing an internship. So we are praying that UNCW is able to get back up and running without having the school year all messed up.
Here where we live we are getting the worst of it as I type. It is super super rainy. There is more rain than NC has seen in a very very long time if ever and it is still coming down strong and is supposed to keep coming down strong for another couple of days. Luckily we are far enough from Lake Norman that we don't have to worry about the lake flooding and we are living in a high area. So the flood risk to our home is very very low thank the Lord. The thing everyone here is most worried about is the power. Luckily we still have power, but we can't say the same for most of the rest of our town. We are the only ones in our family who have power right now (the rest of my family lives within 5-45 min from us and none of them have power). So we are very lucky and blessed and know that God is watching out for us and our precious girls. As more rain comes and the ground gets even more wet the threat of down tree gets greater and greater so hopefully the power stays on, but if it doesn't we are well prepared.
The girls are doing well! We have been seeming to battle change of season colds, along with 2 year old molars (I hate those things). So some of the nights are long and feel like they are never ending, but then the morning comes and we try and start afresh. Erins crawling is becoming amazing. She goes everywhere and anywhere and we are working hard to babyproof everything in our house. The newest addition we have is a baby gate that she hates. We put it up in a place that she can't get to the kitchen or the stairs and there are days that she will just sit in front of the gate and whine. It's pretty cool to see her coming out of her shell and becoming little miss independent. She explores and loves finding things under the couch that didn't realize were lost. And little miss Abby is starting to sit up on her own. She is so close to being able to sit herself up on her own but when you put her in the sitting up position she can sit there for a few minutes. We are so proud of her and how far she has come. We are so excited to see how well these girls are thriving.
One thing we ask for prayer on is the girls eating. There are many days I start to feel very defeated. They're making tiny steps forward but not as many as I was expecting. Things haven't changed very much since we came home from the hospital almost a year ago. They both can take things by mouth, can can swallow but they just don't seem to be interested. A lot of times they gag or will reject everything altogether. We've tried so many different foods, textures, sweet savory, crunchy, puree, little pieces, puffs, melts, teething biscuits, and basically everything else you can think of and nothing seems to really get them interested. It's hard for me to not be able to change it, or see big progress. I get the same question all the time of "how long will they have the g-tube". My answer is always we don't know. I was hoping and praying that the girls would all of a sudden just "click" when it came to eating but they just don't want to. They also don't seem to talk much. They will babble and say mama and dada, but they don't know what they're saying and don't associate mama with me or dada with Riley. So I worry about that as well. It's so hard because there is no book to follow on this. I can't read "what to expect" for toddlers because my toddlers are different. I can't go by what a "typical" 2 year old is doing because the girls aren't expected to do that. It's just been hard for me lately.
Because of those things being hard for me coupled along with being with them in the hospital for the majority of the time by myself (with the help of my husband, mom, and other family members visiting) I've been having a hard time letting go. Since the girls have been home the only people that watch them are either Riley, my mom, or my mother-in-law. Other than that they are always with me. I'm so afraid to leave them (Even if just for a few minutes) with anyone else. And not only that but I am having a hard time letting anyone else have a say in anything to do with them, even my husband sometimes.
Being the parent of a medically fragile child is a strange thing. You develop such strength and perseverance that you don't realize that you are also scared and tired. Since I made so many decisions for the girls when I was in Philly (from when to change a diaper all the way up to life saving measures)I've had a hard time letting anyone else have a say. Even if that means deciding whether or not to for-go a nap, or how to handle them girls when they have a temper tantrum, or when to call the pediatrician. I'm not able to be away from them for more than a few hours at a time. And I feel like I'm failing my husband because of it. I'm being very transparent because I feel like there must be others out there that feel the same way as me and are just as afraid to say it as I am. I feel like I worry about the girls so much and it takes up so much of my brain and time that my husband doesn't get the attention from me he not only needs but deserves. And it all stems back to this need of not being able to let go. When you watch your child clinging to life and you are needing to be strong for them and make decisions that affect every aspect of their life you feel like they need you that much even when they are well and happy and thriving. You know in reality they don't but there is a part of you that feel like if you leave too long something will happen, Abby will aspirate because of random reflux that leads to a vomit and no one saw the early signs that I can see, or Erin will have some weird freak out moment and no one will be able to soothe her so she cries till she vomits which may induce a seizure like its done before. It's a constant fear that things will go wrong because someone other than you made a decision for you. And when you've made all the decisions on what you thought was best for your child's health its incredibly difficult to let anyone else have that power because what if they're wrong and you were right.
My husband and I started doing a devotional called the battlefield of the mind and I am praying that the Lord will help release these fears from me. That He will give me a peace and a calm that only he can give when it comes to the girls. I'm praying that he helps me to let my husband have more of a say from things as little as nap time all the way up to the big things. I am praying that I am able to shift my focus not "away" from the girls but onto the things that used to make me happy like spending time with my husband and going out and having fun. It's tough being a mom these days let alone a special needs mom. So hopefully God will keep working on me because He knows I need it!!
We love you all and are so grateful for the wish list items that we have received and the go fund me donations. Life has been pretty tough on us and we are just waiting for a break in the clouds so to speak. We didn't expect it to be this hard because since my husband loosing his job and getting a pretty decent pay cut when starting his new job its been a struggle, but we know God provides! He was seen us through this far and I know He won't stop now! So thank you all again for being our answers to prayer!
I've thought a lot about what I wanted to post about for the girls' second birthday. About how proud of them we are and how amazing they're doing. But I think I want to talk about how grateful we are....
I read a post on facebook about being a medical mom and the struggles you face. And it hit home so hard. There are days where for just a few minutes you feel almost "normal". Feeling like you can take your kids out to story time and grocery shopping like any other mom could. And sometimes that feeling sticks around for a few days, until one of your kids needs to be vented during your grocery shopping because they are coughing and wrenching from the feed they are for some reason not tolerating. For those 2 minutes of crazy (they aren't quiet when they're wretchy) you feel like everyone is staring at you. Wondering what is wrong with your child, why is there a tube coming out from their clothing, why you have a giant syringe in your hand, should someone call 911 because that child is turning all sorts of colors. Thats when you remember you aren't normal. You're not just a mom, you're a medical mom. One who is terrified when a fever pops up because the last fever she had landed her in the PICU with sepsis and they couldn't figure out what was wrong for days. Even when that fever could just be something normal like teething or a small virus. It's a life where every day you walk the line between mother and nurse, caretaker and snuggler. It's a line that you so badly want to stay on just one side of it but are pushed to the other more often than not.
But for the girls second birthday (can you believe it is a week from today!!) I am choosing to be grateful. I am so grateful that I am able to be pushed over that line, that I get to worry about every little thing, that I get to worry about all the silly things other people think. I am so grateful for all the things I hate about being a medical mom. I am grateful because if I wasn't a medical mom I wouldn't be a mom at all. Our girls had barely any chance. The chances of conceiving them are 1 in 2.5 million, their chances of being born alive and well were even less. Then add in the chances of being separated and their chance of any type of survival (let alone thriving) was somewhere around the 5% range of that 1 in 2.5million. Crazy right! Our girls are complete and total miracles.
I rewatched the video that CHOP put together of the girls. Sometimes I watch that video and can't believe all that we as a family have been through. Then other times I watch it and I can feel every single emotion I felt when we were filming. I can remember the conversations had, the electric anticipation waiting for news on separation day, the twisting of my gut when I heard what Abby had been through. I can feel it like I am right back there. When I watched that video tonight all I could think and feel was the immense gratitude we feel for all those that we part of Abby and Erin's care. From Dr. Heuer and Dr. Taylor, all the way to the amazing people who cleaned our room everyday. We made friends everywhere in that hospital. Even the smiling face asking how the girls were every day when I went down to the cafeteria to get my lunch. Each and every person loved our girls like they were part of their family. When something went wrong with the girls you could see the fear in their eyes just as much as you could have seen it in mine because they sincerely loved them. And now being home everyone who works with these girls still loves them! From those who were with me during my pregnancy, their incredible therapists, all the way to the women in the WIC office. It's incredible the amount of love that is poured out on these girls. I sincerely believe that the girls do as well as they do because of how much love surrounds them.
We are so grateful to have had these past two years with these little ladies. There have been ups and downs, back and forths, sideways and every other way you can think of. This past year had some incredibly difficult moments but all 4 of us have moved forward, grown, learned, loved, and thrived through it. I am thrilled to see what this next year holds for us, and at the same time terrified. I know there are surgeries that need to happen and important doctor appointments that need to be had, and that makes me feel like screaming inside, but we are blessed beyond measure, and our God is a God of miracles. I know He has great plans for these incredible girls.
So we will do as we have done for the past 2 years, we WILL move forward, we WILL grow, we WILL learn, we WILL love, and we WILL thrive.
Ya'll this video has over 4 million views! WHAT! That's insane! We pray it gives others hope.
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.
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!
The past few months have been a whirlwind of joy, fear, anxiety, love, sleepless nights, and more growth than I ever imagined.
My wonderful husband decided it was time for me to have something nice of my own and got me a new computer so that I can continue to blog (and of course do other things but blogging is a big plus). I have severely missed this outlet along with all the incredible followers who I get the pleasure of interacting with. So it is because of him and his thoughtfulness I am able to blog and update you all on our journey.
I can't believe it is already almost April and Easter. It amazes me how time flies. the girls are doing fantastic. Everyday is a new learning opportunity not only for them but for myself and Riley as well. We ended up not getting home nursing care because Abby now doesn't qualify because of how much better she is doing! When she left the hospital she was recieving 4 breathing treatments a day (one of which was at 2am ugh! thank God that one is gone) but she is now been off those breathing treatments for a while now, thank the Lord. But that was her main qualifier for home nursing and since it is better we are on our own. So the days are long and busy but we wouldn't trade them for the world!!!
So lets play some catch up...
In January we were able to move into our own place. We are in a quaint little townhouse only 5 minutes from my family. We are loving every second of our little family being together in our own space. The girls are so happy to have their own room and their own space to play. That month of January was all about getting into a routine. When we were living with my parents it was hard to stay in a routine because there were too many people and too much going on all the time. So now the girls have a nap time and a bed time and it is glorious that they know those times and stick to them! We also have gotten into the therapy routine. The girls go to an outpatient therapy facility here in our town. God has truly blessed us that there was this hidden gem that I never knew about till we needed it, and it is only 3 minutes down the road from our house. We go there three days a week for a few hours each time for the girls to receive physical therapy, occupational therapy, speech therapy, and feeding therapy. The therapists are wonderful and very helpful when it comes to getting the girls the equipment they need.
February turned out to be a little more crazy than was anticipated. We traveled to Philly for the girls to have a few follow-up appointments with Neurosurgery, plastic surgery, general surgery, nutrition, and neurology. Every appointment found stellar results. The girls CT scans showed that their brains are healing better than anticipated (complete answer to prayer). Erin's brain look practically normal and Abby's brain is way better than they thought it would. These girls never cease to amaze us. They are living proof that with God all things are possible, they are living, breathing miracles. The main reason for these appointments were to talk about when to do reconstruction of their skulls. Since the girls were separated they have no bone covering the tops of their skulls, which eventually needs to be fixed. They were thinking of doing it sooner rather than later till they found out the the girls growth sutures had closed. The skull is made of different plates if you will. When a baby is born those bones can overlap so the head can fit through the birth canal, and then babies will also have a soft spot for a while. The pressure from the brain underneath keeps those small little gaps between the bones and makes it so that your skull can grow. Well since the girls brain isn't putting pressure on the bone (remember the top of their head is open) the bones have fused. Because of that they need to go back to the drawing board a little bit and come up with a more tailored plan for these girls. They also said that because the girls are doing so well they don't want to cause any type of set back right now. So as far as reconstruction goes we are going to wait another 6 months (end of summer) go back and get more CT scans and go from there and see where we are.
Our Philly trip was only supposed to be one week. But since the plans for reconstruction changed, so did the plans for getting Erins nissen done. She had been having some horrible issues because of her reflux, she wasn't tolerating feeds, she wasn't gaining weight, she was projectile vomiting all the time (one of which resulted in aspiration, a seizure, and a trip in an ambulance), and was just miserable. So in talking back and forth with our CHOP team they determined Erin would also need some type of fundoplucation just like Abby had already had done (Abby was doing fantastic with her feeds and gains weight like a champ) . So we decided to stay in Philly for some extra time to let Erin get this surgery done. I wasn't anticipating how difficult it was going to be to have her readmitted. We had fought so incredibly hard to get these girls home and here I was signing the papers to have Erin put right back where were fought so hard to get out of. It really messed with me. All the thoughts start running, "what is if she catches the flu or any other anything from being in the hospital?", "What if they have to keep her longer because of complications?", So many what ifs. But we knew it was the right thing to do, so against all my crazy feelings Erin was admitted and had her surgery done. Leaving her overnight while she was in pain and upset was tough for me. If she had been anywhere else in the hospital I wouldn't have left, but she was on the floor that was like our home when the girls were still conjoined. We knew all the staff and knew she was in the best loving hands she could be in. You forget how terribly you sleep when your child is in the hospital. The next morning I woke up feeling like I got hit by a train. Even though you are "asleep" your mind is still racing. Every time you slightly wake up you wonder how your child is, are they cold, are they crying, can they reach their blankie, simple things that you just can't seem to get out of your head. It's a miserable feeling and my heart breaks for my friends who are still in that position because it is one of the worst things in the world. Please join me in praying for those who are still with the children who are in the hospital. I have many friends who are still watching their children fight as hard as their little bodies can handle and the only thing that comforts is prayers.
Erin's surgery went well, she had a few complications when it came to her sugars and her feeds but we have since then figured them out and she and Abby are now on the same feeding schedule for the first time since we have been home!!! It's glorious.
We will have to go back to CHOP for some appointments the end of may/early June and then again at the end of the summer. Traveling back and forth isn't the easiest thing. We can't afford plane tickets so we drive. And taking a 10 hour drive with two little ones isn't easy. But this last time the Ronald McDonald house had a room available which helped tremendously, and also provided us with tickets to bring the girls to the adventure aquarium on one of our free days. We couldn't be more grateful to Ronald McDonald House Charities, they are seriously our home away from home.
A little specifics on the girls and their new abilities :)
Erin is rolling, sitting up, able to get herself sitting up on her own, and able to get on all fours in a crawling position. She is working with her physical therapists and a really cool machine that helps her walk. Its basically a harness that suspends her in the walking position above a treadmill. This way she can learn to walk without her total body weight which makes the learning part a little easier.
Abby is rolling all over. She is very feisty these days and seems to have a strong opinion on everything. she is working on her sitting. She just got a rifton chair which helps stabilize her when she is sitting so she can sit and play and not worry so much about falling over. We also are waiting for her stander to come in which will help her learn how to put weight on her legs. We are also waiting on some knee immobilizers which will help her knees now buckle when she is practicing standing (without the stander). All of her therapists and doctors are so amazed at the progress she has made in such a short amount of time. She is not far behind Erin, which is amazing since she only had a fraction of the rehab time that Erin had.
We are so grateful for the love and support that you all have shown us in these past few months. The prayers, gifts, donations, diapers, handmade gifts, etc have been such an encouragement. We love that our girls have touched so many lives.
It's a funny thing......online and through the media there are so many loving wonderful people who embrace our girls as if they were there own (there are always those who beg to differ but we ignore them :)) But the other day I took the girls to story time for the first time. I was so excited! When I used to nanny I would take the boys to story time and I would sit and imagine what it would be like to bring my own children. I remember being pregnant and wondering if the girls would ever make it to story time and what it would be like. So I guess my expectations were a little high but for a first time mom who has children who she feels deserve the world I guess its kind of normal..? I don't know. But I wasn't expecting to feel like I was on the outside. It was so strange. I haven't really brought the girls to any "children's activities" because of flu season and wanting to be extra careful, but since they go to therapy with a zillion other kids I figured we would try story time. But it is such an interesting dynamic bring children who have "special needs" into an environment of "normal" children. All the moms chat and make small talk, they talk about their kids, and what they're doing for fun with them. But not one of them came to say hi to us. Everyone saw us. I see the looks, the curious eyes. Its so hard. I want people to not be afraid to come and say hi and meet the girls and learn about what miracles they are. I just wish people weren't so scared. Granted I remember being on the other side of things, not knowing what to say, or how to react, but I also never had anyone tell me its ok to ask. Just don't start with that. Come over, introduce yourself, ask how I'm doing, and then sure feel free to ask about the girls. I'd rather you know and feel comfortable, than not come over at all. These are the "new" things for me. It's funny when you are in the hospital all you want is to get out. And then when you are out you realize what a safe space that is. A place where no one thinks you or your children are strange. No one stares at you because you are attaching your child to a tube for their lunch. It's a whole new world. My prayer is that the girls grow up knowing that just because they may be a little different doesn't mean they are any less. That they know they can do or be anything they want, and that people should never feel uncomfortable saying hello to them :)
We love you all so much! And boy does it feel good to be back blogging! You will definitely be hearing from us more often!
First of all we want to wish each and every one of you a very merry Christmas, and a very happy New Year!!! We cannot believe that the holidays are here but are loving every single second of it!!
This past month has been one of LOTS of adjustments. We have feed changes, med schedule changes, sleep habit changes, and so much more. It's like bringing home a new baby times two, plus add in all the weird medical stuff and your in for quite the transition.
We had all the girls therapy evaluations done this past month and will start up therapy in the beginning of January. Needless to say that having two kids who require 3 types of therapies, means we will be there every day of the week. It's a little overwhelming to think about but I know we will get the hang of it and figure out the new schedule once we are doing it.
The girls are growing in leaps and bounds! They are doing new things every day. Erin is crazy and gets where she wants to go by rolling. If you turn around for just 10 seconds she gets to the other side of the room. The other day I found her under the Christmas tree pulling the lights off. So that is a fun new things to get used to. Abby is soooo close to fulling rolling over. She can roll from her back to her belly but can't get her arm out from underneath. Once she figures that out she will be on the move! She also has just in the past few days become so much more vocal! She used to be very quiet and would only make noise when she was upset, but she has started to babble and make noise when she wants attention which is a huge improvement for her. It is so wonderful to see them at home and getting comfortable.
Riley and I are also doing well. It has been difficult to adjust I am not going to lie. We didn't realize how hard it would be to get back up on our feet after getting home. We are realizing his job doesn't pay enough for us to live on so living with my parents is seeming to be the only option for the moment. We so badly want to get into our own space and let the girls have their own space. Right now all four of us are in one room. And let me tell you...it's tight. Don't get me wrong we are so grateful but it's still so difficult as new parents to share your space with not only your new kids, but also your parents (inlaws) and siblings (sister-in-laws). We are not ones to ask for help but in this season of our lives we have to. We need to figure out a way to be able to get into a two bedroom apartment and still have enough money to buy food and pay for utilities and we just can't. If you all could help us get on our feet we would be forever grateful. Our gofundme account says we have "x amount of dollars" when in reality that was what sustained us throughout the past year and now we are struggling. The money that was already donated covered all the time that Riley had to take off of work, it covered my lunch at the hospital every day, it covered parking at the hospital everyday. There were a lot of expenses we didn't realize we would have. And we are so grateful for those who donated and helped us through that time. But right now we need help. We need to get on our feet and give these girls what they deserve. If you feel in your heart that you want to help us we would be ever so grateful, but please don't feel obligated. This is the most humbling thing to have to do. You want to think that you can do it all on your own, but there is no book to go by for this kind of thing. And in this season of giving we know God is going to take care of us.
Things are different than I expected them to be being back in the "normal" world. I am so so grateful for the girls and that they are healthy and growing and thriving! But that doesn't mean it still doesn't hurt my heart some days. The other day my mom sister and I took the girls to see some lights that blink to Christmas music. It was so fun to see the girls watching the lights and kicking their feet and smiling. I was really enjoying myself. We were seeing lots of other families doing the same thing when I heard the mom behind us talking about her little guy who was bopping around us. I heard her say how old he was and found out he was the same exact age as the girls. My heart sank a bit. Since I have been home I haven't really had any one to compare the girls to. You don't ask a random stranger in the store how old their kid is so you can see if they're the same age as your children unless you've been chatting with them for a little bit. So to hear her say that and then watch her son made my heart sink just a little bit. He was so happy and full of life. Running around, dancing, chasing his sister, and calling his mama. He looked eons older than the girls, when in reality they are the same age. It hurt my heart because of all the things the girls could be doing and what they're missing. I know they're happy and that they don't know what they're missing but my mama heart knows. There are days I still wonder if they'll ever walk, or fully talk. We just don't know. I can't let myself go there because there is nothing I can do to change it, but I really hope that they have all the opportunities as any of their peers. I know it will get easier the longer we are home and the more used to having "medically complex" kids I get. Being in Philly everyone has medically complex kids, so everyone understands. Here it's just different and not the easiest.
Our days are different than most. They consist of multiple trips to the pharmacy a month, tons of syringe washing, lots of formula mixing, lots of puking, lots of fussiness, sleepless night because of giving medications, and and endless cycle of beeps from the feed pumps. We wouldn't trade our girls for the world, but we are still adjusting and getting used to our normal.
God has given us two miracles. And this Christmas season we look back to where we were last year and see how far we come and are so so grateful. We still have many challenges ahead but are willing to take them head on if it means making a life for our girls!! We are so grateful for each and every one of you! And pray that you are richly blessed this new year!
This Thanksgiving has brought a whole new meaning for our family this year. If you haven't seen the posts of the articles, this past monday, November 20th, Abigial was finally discharged from CHOP after 485 days!
As I look back at those 485 days I really don't know how we made it through. It took so many prayers and well wishes to get us through each and every day. When we found out almost two years ago that Riley and I were expecting conjoined twins, we didn't know if we would be able to meet our children, let alone bring them home. Then in June once the girls were separated we didn't know if we were going to make it home with both of them. Now fast forward to this past Monday, we were able to walk out the Hopsital doors with two healthy little girls!!
We are beyond blessed to have come out the other side of the journey and still have both of our children. being thankful doesn't even sound like a strong enough word for it. We are so grateful that God decided to give these little girls to us and that we have the privilege of caring for and loving them every single day.
Walking out those doors and putting the girls into the car was one of the most surreal and happy moments of my life. To know that they were going home was something I had only dreamed of! The emotions that you go through in the moment, there is nothing to compare to them. You are BEYOND excited and happy and grateful, and at the same time you are terrified and worried and stressed. All I could do was cry. As we pulled away in the car Riley and I looked at each other and said we finally did it! Through tears we looked at each other and said we are finally going home as a family!!!
The drive was a little crazy to be completely honest. Abby had never been in the car before so after about a half hour of our 10 hour drive, she started to get cranky and fussy and almost scared seeming. So Riley ended up having to sit in the back seat. But the view in my rear view mirror was one that I will treasure forever. As long as Abby could see her Daddy she was happy. So would just stare at him and when he would look back at her she would smile. It was almost like she was saying thank you for getting me out of there and don't ever leave me again. She was giving him those total lovey dovey eyes that just melt my heart. She was beyond happy to have her daddy there with her.
We ended up having to stop every hour or so to give meds, change dipaers, do nebulizing treatments, but at 10:30 PM we made it home to North Carolina.
Now when I say home I mean my parents house. We are so grateful that my parents opened their doors to us. Over the past 16 months Riley and I had given up our apartment because we could not afford to keep it due to the circumstances, all the travel expenses, going down to one income, and all the time Riley had to take off work to be with me and the girls. Our plan was to try and save some money and buy a house when we were ready to come home. Little did with know that mortgage companies frown upon FMLA leave and don't seem to really consider it a thing. So because Riley spent a total a few months over the past year with the girls and I and not working, we were denied a mortgage. Which leaves us in a tough spot because rent in our area is more than we can handle right now given the circumstances. So my parents have graciously opened their doors to us. They even lent us their minivan to drive home in because my car we found out is just too small for our family and everything we need to take with us even for a trip to the grocery store. So we are also trying to figure out how to get a larger vehicle.
Sometimes life can be a total crazy mix of good and bad. Even though things are tough we are still so grateful for what we do have. We have family, our girls, friends, and followers who have supported us from the begining and we are so grateful for each one of you!
These past few days at home have been glorious! The girls seem to come out of their shell more and more every day. Watching my sisters spend time with the girls is also something that makes my heart melt. They were only able to visit a few times while we were at CHOP because they all go to school here in NC. So to watch them get to know the girls is incredible.
I also have loved watching my husband turn more and more into a daddy. The love that comes from him for his little girls is something that makes me fall more in love with him everyday. Between diaper changes, putting feeds up, cleaning feed bags, giving meds, waking up at 2am to give a half hour breathing treatment....he does it all and does it all in love. I couldn't be more grateful for the man that he is and the daddy that he has become.
Please still keep us in your prayers. Being home comes with a whole new slew of challenges along with the happiness. There is ALOT to keep up with. The girls still have issues with different things are require lots of meds. We have to give meds every other hour during the day. And its exhausting. We also have the stress of trying to figure out some sort of living situation. My parents are wonderful offering up their home to us, but we really do want to have our own place and a place the girls can call their own. Right the girls have their own room but their share it with my sisters when they are home from college. We so badly want to give the girls all that they deserve and to have their own safe space is something I want so badly for them. We are just a little tight here right now and don't really have any options. Pray that the Lord opens a door of some sort and gives us wisdom in how walk through those doors. Pray that we also can find a new vehicle. Neither my car or Riley's car really works for having the girls. We can fit their car sets but their stroller alone takes up my entire trunk and leaves no room for anything else. So a different car is a must. Especially with so many different appointments for the girls all the time. And on top of everything else we found out that now that the girls are out of the hospital they are not qualifying for the health insurance they've had. Insurance has been the most difficult thing I have ever dealt with. So at the end of November the girls will be bumped off the insurance they are on. Please pray that we qualify for the new insurance we are trying to get for them. If this doesn't work I am not sure what we are going to do because we cannot afford the amount of copays the girls would have with the amount of appointments they'll have along with surgeries and trips back the Philadelphia. We know that God has provided for our family in so many ways and we know He will continue to do so moving forward.
Thank you so much for all the well wishes in us going home! We had a wonderful Thanksgiving and are so excited to start the Christmas season. Starting to day with going out to get a Christmas Tree! We pray that all your families are truly blessed this Holiday season! We cannot wait to share this season with the girls and our families!
,These past few months have been filled with every emotion I could think of. There have been many times that I wanted to sit and write but both Riley and I had decided it was better to keep things quiet with the girls till we felt that they were doing well and were comfortable having everyone see us again.
So back to June.
The weeks after the girls separation were filled with many terrifying moments. I know that when you see stories of conjoined twins being separated its so exciting and everyone is so happy. I wasn't able to have that moment for a while. When dealing with the brain things can change in an instant and because of that I lived at the hospital for the first almost month after the girls were separated. I slept in what is called a sleep room on the floor above the girls and could actually see their window from the hallway that led to the sleep rooms. Being there gave me the opportunity to be close, God forbid anything were to happen in the middle of the night. Those weeks were the most intense of my life. Being told your children are the sickest kids in the entire hospital (when people from all over the world come to this hospital to have the most rare things treated) you know things are going to be rocky for a little while.
Both girls did have bleeds in the brain. Abby had more than Erin since Erin was the one who received the saggital sinus. Both girls were intubated and basically in an induced coma for a few weeks. They lifted Erin's coma first. She would wake up and look around but that was about it. She would squeeze her one hand but wouldn't do much else. Because she wasn't used to having a breathing tube, she was very angry about it. So angry that she would bear down and make herself not breathe and would desat, meaning her heart rate and oxygen would drop. There were a few times she did it when her heart rate would drop to zero for a few seconds, which would literally feel like an eternity. When you see your child's heart rate on a monitor and it reads zero your knees go week. You can't hear or feel anything. Everything in your entire being is willing her to "come back". When she would finally pop back up I felt like I was going to puke. I knew she needed to get the tube out so she would stop doing this but because her meds were still too high she wasn't able to breathe on her own. So this went on for a few days before they were finally able to extubate her.
About a week after the girls were separated Erin's nurse came to me and asked if I was ready to hold her. The emotions that welled up inside me at that moment I can't even describe. She was offering to give me the moment I had always dreamed of since the moment I found out I was pregnant. To be able to hold my child, all on her own. She was still intubated at the time but the nurses thought that maybe if I held her she would calm down enough that she wouldn't do these crazy "zero heartrate" episodes. So they got me a rocking chair and the team came together to help get her out of bed. The amount of tubes, lines, wires, and drains was insane. We needed several nurses and a respiratory therapist to get the job done. As I sat in that rocking chair watching them get ready to make the transfer my heart was in my throat, I was about to hold one of my daughters. They put her in my lap and all I could do was cry. She settled in and within a minute her heart rate settled and she completely relaxed. So much so that she fell asleep, something she didn't seem to be able to do until she couldn't be awake anymore. I sat there with her rocking her for hours not wanting to move. They finally told me after holding her for about 3 hours that I needed to put her back, what I didn't realize was that they wanted me to put her back so that I would also have the chance to hold Abby that same day. Talk about feeling like your heart could explode. So they put Erin back and got me all set up to hold Abby. The same process of lots of people, lots of tubes, lines, wires, and drains, but the moment she settled into my lap complete peace. She melded into me, she knew I was her mom. Even though she could barely open her eyes I knew she knew she was with me.
Both girls ended up needing to go back to the OR for a washout of their heads a week after surgery. So the both went back (at different times). It felt like such a long day because it was one after the other. Each baby only took two hours or so but it felt so much longer since we had to do it twice. A week later Abby needed to go back for yet another wash out. These were done more as a preventative measure. The first washout showed that the girls had some bacteria, and since Abby's white cell count wouldn't go down they wanted to go back and make sure that she was still clean in there. Thankfully the girls didn't get any infection from the surgery, God was really in the midst of every single step of the girls recovery. Infection was one of the surgeons' biggest worries. And the girls never had any issues.
Erin was extubated successfully a little while after her washout, but its never a fun process to watch. They turn a lot of the meds down to make sure that she is awake and angry enough that she will breathe when they pull the tube out. And she was angry! She was so angry that she was gulping air since they have deflated the cuff so she could get a little air in and out on her own. Because of the gulped air, her belly got really big and distended. It was big and hard and looked so so painful. They had to put another tube down her nose to pull some of the air out because if they extubated her with the air in her belly, it would put pressure on her lungs and make it harder for her to breathe when the tube came out. But, like I said, thankfully she was extubated successfully and the gulped air didn't cause a huge problem.
A few days after Erin was extubated, was fathers day. Up until this point I had been living at the hospital and Riley was going back and forth to the Ronald McDonald House. He would bring me fresh clothes and snacks everyday. So I decided that Riley deserved a night out since it was fathers day. During the day he came in and was able to hold Abby for the first time. I fell in love all over again watching that moment. It's nerve wracking being handed your child who is so fragile and frail. It's incredibly intimidating have five people hovering over you because that's how many hands it takes to get her out of bed. I was so proud of him for wanting to hold her despite all those things. I watched him beam as he looked at Abby's puffy little face. Later that night we decided we would go out to dinner. Not far, only 10 blocks or so from the hospital, and only one block from the Ronald McDonald House. It was nice to get out and be able to breathe for a few minutes. Little did I know that this dinner would be the most terrifying dinner of my entire life.
In the middle of our dinner, right about the time the waiter brought our dinner, I received a text from a good friend who was also a parent in the PICU at the time. She was at the hospital and texted asking if I was there and if everything was alright. The feeling at that moment left my body. She went on to say that the code bell was going off for the girls' room (a code blue means that they need extra hands because something bad has happened/is happening). The tears instantly started to flow and I told Riley to get the check and I ran outside to call the hospital. As soon as I got the nurse on the phone the Nurse practitioners were trying to call me. They explained to me that Abby's pupils were different sizes and not reacting well, and that that could mean that something is very wrong and they were ordering a STAT CT scan. I couldn't believe that the one time I left the hospital this was happening. And I was 10 blocks away on the hottest day of the summer without my car. So needless to say Riley and I ran. I cried the entire time I ran. All I could think was I know everything that happens with the girls, and I didn't know what was going on. I wasn't there when she needed me. My lungs burned and I felt my face burning as well. My entire body was sweating. I was just trying to remember to breathe. Your mind instantly goes to the worst case scenario in these situations. I hope and pray that those of you who are reading this NEVER have to experience that feeling. A feeling of such helplessness, that your child could be bleeding inside their brain and not only can you not stop it, but you aren't even there to hold her hand and tell her you are right there for her. I don't think I have ever prayed so hard in my entire life. I wanted to scream, God please don't take her from me.
We finally made it to the hospital. It was the longest 15 minutes of my life. When we walked in they had just gotten her ready to make the trip down to CT. A nurse grabbed me a cup of water, Riley stayed back with Erin, and I followed the parade of drs, nurses, nurse practitioners, respiratory therapists, and aids who took Abby. We got down to CT and I am usually allowed to go in, but since Abby was so critical at that moment they wouldn't let me go in. There were too many people that needed to be in there as it was. So i was put into a small waiting room. It was around 8-9pm at night on fathers day, so needless to say there was no one else in the waiting room. All I could do was sit pray and cry. I sat in the waiting room for a few minutes and started to feel like I was going stir crazy, so I actually went into the hallway and sat on the floor outside the CT scanner room so at least I could hear if anything went wrong. After what seemed like an eternity they came back out. Thank God she didn't have any more bleeds in her brain. Everything was stable, and actually looked better than it did on her last CT scan. I really do believe it was a miracle. To this day they still can't figure out why their (both girls) pupils change sizes, and it doesn't affect them. God is good!
A few days after that, Riley had to go home. We are so incredibly grateful for all of you who donated to our gofundme. It was because of you that Riley was able to stay as long as he did. He was here for almost two months. He came a few weeks before the girls' surgery to help me with all the meetings and prep and to just enjoy the girls. It was a huge strain on us financially because we already have been living paycheck to paycheck, so to go two months without any paycheck required nothing short of a miracle, and God provided for us. And we are so incredibly grateful for that!
A week after Erin was extubated it was Abbys turn to be extubated. She didn't have any belly issues when she was extubated and did so wonderfully and uneventfully. It wasn't until a few hours after Abby was extubated things went south. During one of Abby's hourly neuro checks the nurse noticed that Abby's one pupil was blown and not reacting. Again, panic. The room filled with people within a matter of minutes. No code bell, but was basically the same deal. The only problem was that they needed to take Abby down to CT, although moving her was precarious at best. So they did an emergency reintubation at the bedside while she was wide awake. I stood in the back of the room and watched, cried, and prayed. Feeling helpless was the new normal and I hated it. I wanted to do something, anything but I couldn't. And the worst part is everyone keeps asking if you are ok. Thats when you know things aren't good. When you have person after person asking if you're ok, if they can get you anything, trying to hug you or pat you on the back to offer some support. It's moments like that were you just want everyone to go away and leave you alone. All you want to do is will your child to get better because that is all you can do.
There are times in your life when you lean on God more than others. I have never leaned more on God than in those moments. The moments when there was nothing I could do but stand helplessly in the background and watch as a massive amount of people were working on your child right in front of you. Just thinking about it brings me to tears and its been a few months. I have had different people tell me that I just need to lean on God, that if I did that more I wouldn't be so worried, or upset sometimes. But let me tell you, He is the one that kept me standing in those moments. The moments where I felt like I would crumble into a million pieces. I could have had anyone standing next to me telling me anything and it wouldn't have helped. I have never known that kind of dependency until I literally felt like I couldn't stand. Like my heart was outside my body and I just turned into a shell. But God is good, and he keeps me standing every day.
They got Abby reintubated and down for yet another STAT head CT. They gave her meds to paralyze her and knock her out so she wouldn't move or know what was going on (another thing I hope you never have to watch, my friends here who have children at CHOP who have seen their kids vexxed know how horrible it is to see your child unable to move even if they wanted to). Again, another CT scan where I sat in the hallway and waited for them to come out. I sat in the hallway and cried, prayed, and just waited. She came out and yet again another miracle. Everything was fine and again looked better than the last time. She was extubated the next afternoon and stayed extubated after that.
About a month after the girls were separated they were transferred out of the PICU. To say I was amazed was an understatement. They were both awake and could move all four of their limbs. Granted they each have a weaker side of their body, but were able to move everything, something we didn't know would happen or not. They were getting physical therapy, occupational therapy, and speech therapy 5-7 days a week. They both were on full NG feeds and Erin was starting to try to take things by mouth. They were ready to be out of the ICU!
They were moved back to the floor they were on before they were separated. We even went back to the same room. It felt like we were back home. The PICU was amazing. The doctors and nurses there were INCREDIBLE! There are so many I will never forget. They kept our children alive. They nursed them back to life. The surgeons do a huge part, but the rest of the team is so important as well. I watched the ICU teams work like a well oiled machine. When things were unstable, they stayed calm and made things happen and got things done and got answers. We will be forever grateful to them. But going back to the 4th floor was like a big family reunion. Everyone couldn't wait to see the girls and "relearn" them. They weren't the same little girls that left that room. They were independent of each other. They were still recovering, and had many issues. Both girls have what are called "subclinical" seizures, meaning that you can't see when they are happening unless they are hooked up to EEG. They were still being weaned off some sedation meds, and they were going through slight withdrawls, Abby was still getting the hang of breathing on her own and getting rid of the secreations that had accumulated from having the breathing tube, and they were both still in a little bit of pain. So, it wasn't the easiest transition for me. I was used to the ICU where everything happens fast. You need portable Xray and it is there within the half hour, on the other floors it could be a few hours. But I had to remind myself they were ready to be there. They were ready to be out of the ICU and needed some time to rest and gain back their strength. Not too long after we moved back down to the 4th floor Abby started having some issues.
During PT one day Abby seemed to be obviously seizing. Her whole body was tremoring. My mind instantly went back into ICU mode, but things weren't moving at the ICU pace that I was expecting. Everything seemed to take forever. Every few minutes her whole body would start shaking and she would start screaming and there was nothing I could do but sit and rock her and pray that these episodes would stop. Finally after talking with lots of people, they agreed to get a CT to make sure that everything was ok in her brain. I felt in my gut that this was the right thing to do and had been pushing for it all day. Not even an hour after she got the CT our neurosurgeon was at our door. When the doctor shows up that soon after a scan it is never good news. My heart sank as I went into the hallway for him to show me the scan. When he pulled it up I could see a white spot right away. Abby had had another bleed (thankfully it was in a place that had already had damage so it didn't do any further damage than what had been done during surgery). The bleed was most likely something that happened because she was going through what they called autonomic storming. Basically her brain was trying to heal and was having trouble doing so, and because of that, it was getting agitated causing these tremors and fevers. Because of that we think she got this new bleed. So, back up to the PICU Abby went while Erin stayed down on the 4th floor.
This was the first time the girls were split up. And by split up I mean 3 floors between them. I cried some tears that day and then told myself it was time to put my big girl pants on and keep moving forward. Erin needed me because she was healing and becoming more and more aware everyday, and Abby needed me because she was still sick and needed some extra loving. It was tough bouncing between to places. Trying to decide who needs my attention more and why. My heart was torn in two. Being a mom of twins is a challenge that I wasn't fully aware of yet. When the girls were conjoined they were always in the same place, when I saw Abby, I saw Erin, and vice-versa. So having them not only in two separate beds, but on totally different floors, that was a HUGE adjustment for me.
Thankfully Abby was only in the PICU for about a week. She got the right combination of meds and was a new baby. She was better than she was before the bleed and she looked like she was ready to take on the world. So thankfully she was able to go right back down to the room with her sister and every day they seemed to get a little bit better.
During this time they had their birthday. What a day. These little girls have been through so much, to say I was proud on that day was an understatement. Riley and I couldn't be more proud of these incredible little girls. They have such fighting spirits and yet they are so sweet and happy and willing to love anyone who gives them a smile.
Shortly after their birthday Erin went over to rehab, and then only about a week later Abby was able to join her. Rehab is such a wonderful place. We were sad to leave the friends we had made on the surgical floor but we were so excited to embark on this new part of our journey! The last step to going home!!
In rehab the girls had about 4 hours of therapy a day. 1.5 hours of Physical therapy, 1.5 hours of Occupational therapy, and 1 hour of Speech therapy. All of the girls therapists have been incredible. They are literally angels who are helping our girls grow and learn and blossom. We have seen the girls change right before our very eyes. Everyday they are doing new and exciting things. Watching their eyes light up as they relearn a skill or learn a brand new skill. Watching them sit up to play with toys, learning to roll over to their belly and lift their head up. It has been so amazing. Its watching a miracle unfold right in front of your eyes. They are working so hard and it shows!!!
During our rehab stay (which started around mid August) the girls have gotten sick quite a few times. How do they get sick you ask. Well the girls weren't really used to being up and about. Yes we would take them on walks when they were still conjoined but now they go all over the place. They take walks, they go down to the PT, OT gyms. They get snuggled by lots of nurses and aids (they weren't able to be snuggled before). So even though everyone is really careful they just aren't used to being exposed to everything like they are now. So their little bodies are getting colds and sicknesses. It hasn't been easy. Abby has been transferred out of rehab a few times because of it. Each time it is heart wrenching because I know it is a setback. Whenever they aren't in rehab getting their therapies it is a set back as to when we can go home. And poor Abby just can't seem to catch a break. She has had a respiratory virus 3 times (Erin twice, me once), Erin had the flu (Abby and I escaped that one thank God), and then just this past week Abby got a weird blood infection that caused her to go into septic shock, landing her yet another stay in the ICU. This last one scared me I am not going to lie. She was really really sick for a few days there. She got 2 CTs, an MRI, a bunch of spinal taps, and every type of blood test in the book, and they still don't know where in her body the infection was coming from or how she picked it up. Thankfully it had nothing to do with the fact that she had been conjoined. It was just a random fluke that could happen to anyone. But go figure it had to happen to miss Abby.
On another wonderful note.....on
October 1st 2017 after 435 days Erin Christine Delaney
She is now staying with me at the Ronald Mcdonald House and LOVING it! It has been quite the transition that has had its scary moments, but thankfully I have wonderful family members who are super encouraging and helpful. My mom has been staying with us to help me get Erin to all her appointments and therapies (since Erin still has to do all of that while Abby is in inpatient). And she takes Erin for walks and such so I can spend some one on one time with Abby. I also have some wonderful friends at the Ronald McDonald house who are there if I need another set of eyes of some encouragement. The first few days I was by myself (Riley is at home trying to find us a house and isn't able to take the time off work right now because we are still working out mortgage stuff) and they were just a phone call away and so incredibly helpful.
Abby still has a little ways to go till she is able to be discharged. She has a little trouble managing her secretions so she can have a little trouble breathing sometimes, but it is getting better every day (we will have home nursing when she is discharged). And she also had surgery on Thursday to get her gtube placed (Erin got hers right before she was discharged) and will hopefully be headed back to rehab very soon. She is recovering well, but surgery is never fun. We found out some of her anatomy wasn't in the correct spots so her surgeon moved things around a bit and did a tupet fundoplication. Hopefully only a few more days till she can head back to rehab. She then needs a few more weeks of rehab and then hopefully, God willing, we will be headed home for the holidays!!! We will hopefully be able to spend Thanksgiving and Christmas at home this year and we are beyond thrilled about it! Granted things happen and I can't say for sure that that will happen but Erin is already discharged and that's half the battle. So now all we need to do is get Abby discharged and we will be headed back to good ole' North Carolina!!!
Thank you so much for those of you who stuck with us through this time. I know we took a while to share pictures and share more of the girls story. We just wanted them to be well, and the stress to calm down before we let the world back into our lives. It's been tough sitting at their bedsides hoping and praying that they would make it. There were many moments where we just needed to be a family without any outside input (and let me tell you, everyone has something to say about everything). So we appreciate your patience and understanding. We were just trying to do what was right for our family. And there were several times we were just a day or two away from releasing pictures and Abby would get really sick, or Erin got the flu, or I was in the middle of an insurance disaster. We wanted to be ready and able to answer questions and do interviews and share our girls with you once everything had calmed down with their health. You all have been wonderful! From now on I will be updating my blog frequently as I was before so that you can all watch these incredibly wonderful girls grow and thrive. Our family has been blessed more than we could have ever imagined. God gave us the right hospital, the right surgeons, and the right hospital staff to make sure that these little girls had the best chance. And we couldn't be more grateful to Him for that!
So many people have asked how they could help. Below the pictures I posted a link to our gofundme page. Those who have donated have helped fund my stay here in Philadelphia. Yes, the Ronald McDonald House is wonderful! But there is still parking at the hospital, lunch, and all other necessities that I need. It has also helped make it possible for Riley to visit. Since the girls have been in the hospital, Riley has taken quite a few months off of work altogether which makes fiances incredibly hard. But because of you all we have been able to keep up with the bills and still have Riley visit. Now we are working on trying to buy a house and give these girls all the things they deserve. They still have a long road ahead of them with more surgery to happen most likely in the spring. And we will be back in Philadelphia for a month or so. So thank you for all that you have given to help our family make it through this. We can't wait to be in a place someday to help a family on a journey like ours.
There is also an Amazon Baby registry link there as well. Everything that has been purchased from that has been so helpful and provided many smiles. We never had a baby shower because the doctors had told us they weren't sure how things were going to end up. So the amazon registry has been like the baby shower we were never able to have and we so appreciate it!!! We are seriously so humbled at how generous you all are. I know I have said it before but God has blessed up with such wonderful generous followers and we are so grateful for it! You all have made such a difference in our lives!!
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!