Hello. Yep, I’m still here and yep, I am totally cognizant of the fact that I haven’t written in months and months, and for that I truly do apologize! In my head I still have a blog and write blog posts, but I just can’t seem to sit down and DO it. So, for that I am sincerely sorry and who knows if anyone is even reading this right now, but I just had to get it out on paper.
But first of all, the twins are 18 months old now which is crazy. Thankfully, all is well and I finally feel like I am getting my groove. When I think back to the first year I had no flipping clue what I was doing, plus I really didn’t want to do it because I just didn’t “get” it (what is so great about parenting?!), it was hard, blah blah blah. I wish I could go back and be a mom to the twins those early months with the attitude that I have now about them. I would have appreciated them so much more, and probably even enjoyed them. But I suppose this all just part of learning to be a mother and how to navigate your own personal way. Each mom parents differently and looks at things differently, and I think a key is to surround yourself with other moms who parent similar to you. I’ve found that most twin moms are like me and I think it’s for the basic fact that you HAVE to be. You simply can’t always be fussing over your baby because there are two of them, it’s a simple mathematical equation. So, I definitely vibe more with multiples moms and a few singleton moms who happen to be laid back so we get along. But I simply don’t have the time to be friends with a singleton mother who is all over their kid, 24/7, like a helicopter mom. Additionally, I don’t think it’s healthy for the child for a number of reasons but no point in going through all that here.
I had a moment the other day when I was changing Princess into her pajamas and DH was playing with Peanut and I looked up at him, and said THANK THE LORD we had twins, as effing hard as this is, because if we didn’t then right now we’d be in the midst of FETs and fresh cycles and donor egg agencies and all that crap and the thought of going down that road AGAIN after 11 IVFs was horrible, and I was so so grateful that two embryos stuck and made it and I never have to think about that again. I mean, talk about a moment of gratefulness.
Speaking of gratefulness, boy do I have a doozie for you. I want to preface this story by saying Princess is 99.5% fine, per the doctor yesterday. I didn’t even tell anyone IRL what was happening, I just wanted to get through it, get information and then talk about it if need be. But I need to write it out to get it out of my head, to declare my gratefulness for having a healthy child, to say how much my heart hurts for every single one of those parents and children I saw at the hospital this week, and man I wish I knew a way to really show my gratefulness for all the good things in life. If anyone has any ideas on how to do this (besides a gratitude journal), I’m all ears. I do little things to help people all day long, and I will probably give a little donation to the hospital, but I just wish I could do MORE and help MORE people. Anyway, here’s what happened:
We noticed a very slight limp on Princess eight days ago, but we didn’t think anything of it because she is always playing with movement and learning new things and trying them out. Over the weekend I saw she was still limping, and Monday it was still there. Tuesday the twins her their physical therapy and occupational therapy (only two more weeks and we are done with all that!) and both therapists were concerned, the main part being Princess was not in any pain, nothing was sensitive to the touch, so we couldn’t isolate which joint was bothering her. To me, I wanted something to be sore so I knew it was an orthopedic issue that would heal but nothing hurt her. The physical therapist didn’t want to alarm me but she mentioned that Juvenile Rheumatoid Arthritis often presents in one stiff joint all of a sudden and I should take her to the Pedi. I was beginning to get alarmed because I’m aware that diseases can present in odd ways, plus the fact that she has my Celiac gene which could possibly trigger other auto-immune diseases I wanted to get this looked at immediately.
I called the Pedi and got in later that day. He also could not find any areas of pain or any reason why she would be limping (she was dragging her right foot.) It wasn’t stopping her from playing, walking over and around toys, being her normal happy self, etc. He was stumped. He suggested a visit to an orthopedist right away and in fact called one in his group from the exam room and got us an appointment for Thursday (this was Tuesday.) Later that night he called me and said he was thinking about it and if the ortho doesn’t find anything to come back for a Lyme disease test, as that could also present in a stiff joint. Now I have no clue what to think and I had the entire day of Wednesday to make myself crazy. But, I’m proud of myself- I stayed off the internet and did no Googling. I didn’t want to make my thoughts any worse.
Thursday finally comes and I take her to the ortho. A doctor and a nurse practioner both exam her and again, nothing could come up so they sent her for an x-ray of the hips and both legs. We were pretty sure nothing was wrong with her hips because she was squatting and playing and she wouldn’t be able to do that. Finally, the films come back and the doctor can’t see anything, can’t see a fracture, nothing. But then he picks up the phone and calls another doctor and says something about a shadow on her fibula (the skinny bone in your lower leg) and the NP said she saw it too. After the three of them discussing (and me alone trying to get Princess not to play around on the gross floor) the doctor said that it could be a periosteal reaction which is what happens when there is trauma to the bone, it’s how the bone heals itself. What was worrying to them was that they could not see any trauma, and there was no history of her falling or whatever. The NP suggested an MRI in a few weeks, and it takes forever to get an appointment because a baby needs to be sedated and the appointments book up pretty quickly, but that she will work with her secretary on getting one for Princess and will call me. So, that was the first red flag for me- why was she so adamant and why was she going to work on this for me? It just didn’t…sit well. The only thing that made me feel better was maybe she could tell I was an educated and informed patient that doesn’t wait around and she thought perhaps I’d be calling for one? Not sure.
So I pack everything up and shlep all the way to the other side of the medical campus back to the parking garage, and as I’m putting her into the car seat my cell phones rings and it was the area code of the medical complex so I grabbed it right away. It was the NP again, she was very calm and sweet but asked me if I was still in the area could I please come up? She had sent Princess’ films to a colleague and not only him but another doctor would like to take a look at Princess- immediately. The receptionists were expecting me and I had to go across the street to the third floor. “Across the street” meant the children’s hospital. W.T.F?
So, off I go again, trying to remain calm. I shlep back over and into the children’s hospital and get off on the third floor. Right away I see the sign to tell me where I am: Oncology. I’m in the cancer wing of a children’s hospital. Again, I kept it together and just walked right up to the desk, said my daughter’s name and the receptionist replied with, “Oh yes – Smith, the doctors are waiting for you.” What? The doctors are waiting for ME? Isn’t it supposed to be the other way around, especially if it’s something that was just scheduled? Red flag, again. So, she calls the two doctors and they say they will be “right down.” Jesus.
I was told to go wait in the waiting room which is THE LAST place I wanted to wait. The waiting room was exactly what you imagine a pediatric oncology waiting room would look like. All those children, all those parents. The room itself was bright and cheery but I just had to look down and not see these other children, of which I was certain my daughter would be one soon. This was the one time all day I broke down and silently started to cry- I didn’t know what the hell was going on and I was all alone. I started the day going to a regular orthopedist and now I’m sitting in the children’s cancer wing with two doctors “on their way.” I called DH to give him an update and it was tough.
Thankfully I probably only waited about seven minutes in total but it felt like an eternity. A very nice young woman called our name and she started to take Princess’ vitals which was a huge feat. The woman told me that she is actually an NP and doesn’t do vitals but wanted to get us started right away. Red Flag for me.
She took a history and watched Princess walk and could see the limp right away. The next thing I know the exam room door swings open and in walk two men. I started feeling tingly and I felt like I was in a tunnel. I also felt…familiar. This is where the five years of being a “professional patient” started to kick in. This was all familiar so I was able to harness my anxiety, be in the moment as much as possible and be ready to take any information that was going to be said. I also knew I had to rely on my inner strength for as long as this scenario was going to play out and to have the attitude like “we can do this” instead of automatically being defeatist. I didn’t learn that skill until about two or three years in to my five year IF journey, but I knew I would just take whatever was about to come and not break down.
The two men were young, good looking and my first thought was they could have been in DH’s fraternity, it was the same age range. I liked them right away. They could also tell I was educated and informed and I gave them a 30 second run down on how I know my way around medical jargon and it was ok to tell me like it is. They were both about to give me their business cards and I declined and said I don’t even want to know what your specialties are, I’m painfully aware of where I am right now so I can probably figure it out, but right now I’m on a need to know basis. I was actually shocked at those words coming out of my mouth, usually I have a million questions, but I realized that in this situation there is no reason to know more then I need to because I don’t want to get horrible thoughts in my head. They totally understood and said they actually prefer an educated patient and I had to chuckle at that because I feel like REs HATE patients like me/us. I remember bringing a study in for Spandorfer to look at it and he lambasted me for being on the internet and to just listen to what he said. Hmm, that doesn’t work for people like me (and you, as I assume my readers are also go getters.)
Basically, they said they saw an area of concern on her bone, there is definitely some growth but they just don’t know what it is. They weren’t keeping anything from me, they just didn’t know, and they want her to have stat MRI to get more information. One of the doctors was trying to get her in for today (!) but she had eaten four hours earlier so he was trying for first thing tomorrow morning but she may have to be admitted to the hospital and stay overnight to get that slot. Holy shit.
They said it was good I brought her in right away, that god forbid there is something to treat it’s probably very early (they never said the cancer word or the tumor word, it was always “something else.), and they don’t take the “wait and see approach” which as you know, neither do I. Other options were that it was a bone infection and she needed bloodwork to check that out and then possibly a biopsy to figure out which kind of infection, or the last option was a fracture that couldn’t be detected on an x-ray for some reason. When one of the doctors examined her leg she did finally recoil a bit to a specific spot, which in my mind was a good thing.
So they sent me upstairs for blood and it was a zoo, a huge ass waiting room filled with kids of all ages. At this point Princess was done and just wanted to run around and do whatever so I let her and I just followed her around, trying to keep my eyes to myself. All of a sudden I see one of the two doctors, Dr. G, come hurrying towards me and I groaned inside- now what? He said that happily we could go home, sleep at home, and be back first thing tomorrow for an MRI. I asked him how would we get the results and he said, “Oh, I’LL find YOU after the MRI films are forwarded to my office, don’t worry about that.” Again, I didn’t like that tone. So urgent, everything so urgent.
Obviously it was nightmare getting bloodwork done but it was finally done and I was able to get back to my car and drive home. I was very sedate and didn’t break down, I’m actually very proud of myself on how I handled everything. I just kept running the scenarios in my head – it’s either NOTHING or it’s SOMETHING. Oy. So I decided that she was going to have an infection, we’d treat with IV antibiotics which would suck, but that would be the end of it. At this point I was wishing it was just stupid Lyme disease!!
I couldn’t be alone so I went to my aunt’s house who was watching Peanut and filled her in. I also spoke to the pedi and I asked him why he thought the urgency? He said because there was no history of her falling and they couldn’t see a fracture. He said an infection is unlikely and rare, but try not to jump to extreme conclusions and to try and sleep that night. Sure, no problem, there is a chance my daughter has bone cancer but I’ll try and sleep!
We get up the next morning and poor Princess isn’t allowed to eat or drink anything, but she seemed ok. We get to the 3rd floor of the hospital and the receptionist says, “Smith?” I’m like..”yesssss..?” She said Dr. G had been pacing and waiting for us and she’ll call him right away. Yet another red fucking flag for me.
He appeared right away and he showed us where to go. I asked about the bloodwork and he said everything was normal and I was like- crap- that means no infection, right? He said probably not, but let’s just wait and see what the MRI says. My stomach just kept falling and falling….
Princess had to get an IV and I knew that would be tough. I think physically that was the worst part of the day. She fought everything and when they finally did it they had to put her arm in a splint thing covered in bandages so she wouldn’t pull it out. She couldn’t bend her arm so she couldn’t suck her thumb and I felt so bad! No matter how many Elmos I had, or the cartoon tv in front of her, or singing songs, she just wasn’t having it. Loud horrible echoing cries. Terrible. And I was just silently thinking- Holy cow, what if this is just the start of experiences just like this? I tried to push those thoughts away, but how can you….
No one could fully explain how to get down to the MRI suite so a nice nurse took us down to the basement and we hung out in this tiny, windowless waiting room where we were told it would be at least an hour because of course they were running late. Princess was in a hospital gown and had her arm in a splint and we didn’t want her walking around so we took turns carrying her and walking up and down this busy hallway. She is such a trooper, she really didn’t get too crazy. It was DH and I that were nervous and our backs were really starting to hurt because she weighs 25 pounds now and we were doing dances, going up and down, etc with her. Finally finally someone comes to get us and we are in another hallway but private, and you could hear the MRI machine going in the room next door. There was not one, not two but three sedation specialists for her, and the main guy happened to mention that they don’t do sedation MRIs on Friday but they got this call last night so in they came. Yet another red flag for me. But, later on someone mentioned that they had another child later that day so at least I know we weren’t the only one, you know? They had no answers as to what the issue could be, all they know is sedation and watching the baby during the procedure. Turns out, the meds they gave her are exactly what we women get for egg retrievals- Versed to calm you down followed by Propofol (the white milky stuff) to make you go to sleep. So I was reassured it was something I knew. At this point someone else came in and said it’s going to be at least another 20 minutes until the machine is freed up so we just had to keep waiting and waiting and trying to get Princess occupied, but by now she hadn’t eaten, drank anything or napped and it was 10AM, poor baby.
Finally finally the room was free and then everything happened quite fast. I was told to lay on the stretcher with her in my arms and they would start pushing the Versed. There were three doctors surrounding me and DH to my left who was playing with an Elmo doll for her. Within a minute of the meds hitting her system she started giggling and then giggling some more- it was the only light part of the day for me. She LOVED the Versed, just laughing and giggling away! I told DH to put Elmo away in case she starts seeing ten of them and it scares her! After a minute or two they started pushing the Propofol and it took awhile for it to hit her, it’s almost like she was fighting it. She didn’t like the warm feeling it creates at the entry sight and she was trying to move the bandages so I had to hold her down. Eventually her eyes started rolling back a little so they picked her up off my lap and placed her down in the stretcher, but her legs were still going so she wasn’t fully asleep. I made sure to ask if they had enough and they reassured me they did, and they put the heart monitor stickers on her chest, a blood pressure cuff and a pulse ox meter on her toe. And that was it, they wheeled her inside and DH and I were told to be back in the waiting room in 40 minutes.
We went to the cafeteria and got some coffee and then went back to that tiny windowless room where all I could do was pace and pace. No one was there and DH was watching CNN on the tv (or a least pretending to.) After 55 minutes I was really starting to get nervous but then the nurse came in and said the baby is doing just fine, it’s just that the radiologists upstairs are requesting more images and that’s what’s taking long, but it should be done soon.
Red flag- why do they need additional images, or different angles, or whatever they are looking for? I was ok for ten minutes but then I hit my limit. I left the waiting room and started pacing in front of the big double doors that lead to the actual MRI room. There was a little window so I kept pressing my head against it wishing to see the MRI door open so I knew it was over. It’s not that I was worried that Princess was in pain or anything, to me I was worried that every minute that ticked by was another image they needed to get a better look at something bad. This went on for another 10 minutes, and then someone actually exited these double doors and I took it upon myself to sneak right on in and literally stand outside the MRI room to see if I could hear any conversations. I couldn’t, of course, and then I got in trouble was asked to walk back to the waiting area. It was then I started to cry and this poor nurse had to console me, and I didn’t want DH to see me upset so I waited until I looked better and went back to the waiting room. Nope, I couldn’t do it, I went back to entrance and just began to pace and pace; random doctors were asking if they could help me, if I was lost, etc and I’m just like- leave me the fuck alone! I’m going to find out very soon if my daughter is sick and I need to fucking pace!!! UGH!
The same nurse came out of the MRI room and saw my head plastered against the window and she finally came to rescue me and told me it was over, go get DH, the baby did great. Princess was rolling around in the bed and pretty much wide awake. Turns out she is just like her mother- she has an incredible tolerance to meds! They had to give her double the amount of Propofol and she still woke up in the middle of the MRI! (Not sure if you guys remember, but for my Celiac endoscopy they had to keep pushing the meds and I was still awake for it. They told me afterwards that they gave me enough meds for an obese man and what was the legal limit for someone my height and weight!) The doctor said that as soon as they turned off the IV drip her eyes popped open, and that was that.
I was told to sit back in the stretcher with her on my lap and they were going to wheel us back to that god dammned 3rd floor. We didn’t even get onto the elevator when all of a sudden I see both Dr. G’s just standing there, waiting for us. Are you fucking kidding me right now? These are two incredibly busy men with busy practices, and here they both are, immediately after the MRI, literally waiting for us? I knew it was bad, I just knew.
To top it off, the nice nurse who was pushing the bed right behind me said to Dr. G, “So, are you going to be the attending physician?” And he replied, “Yep.” I just knew Princess was going to be admitted to the hospital and who the hell knows what after.
Oddly, I was calm. I was calm getting into the elevator with all of them, even cracking a stupid joke about how cute Princess was on the meds. I felt like I was back in the ER after I lost DIJ- calm, methodological, ready for something I already knew I was going to hear. I knew I’d keep it together and lose it later in private. I was ready.
They bring us into some pediatric recovery area where again, I chose not to look around. All of these people descended onto the bed but I couldn’t see DH. The other doctor (not the first Dr. G, the other Dr. G) came right up to my bed and said: “NOTHING BAD.” NOTHING BAD! That’s it, I didn’t hear the rest.
Then I saw DH coming up to the bed with Dr. G #1 and I could tell he already knew (they had ridden the elevator together.) I vaguely recall asking questions, but I think the gist of it was they are pretty sure it’s not a tumor or cancer, so by process of elimination they are calling it a fracture that can’t be seen on the films. He said she has the symptoms of a fracture but with no fracture, so it’s probably that. This was the BEST option out of any. He also said that kids get these all the time and half the time we don’t even know it, so there is nothing to do. Come back in two weeks for a follow up x-ray and to see him specifically, not the other ortho. In my head all I heard was “not cancer.” We could go home. HOME.
They made her stay in recovery for a bit but she would have nothing to do with the bed so I gave up and let her walk around the recovery area where she promptly started making friends and going past the privacy curtains of other patients. No one minded, in fact everyone loved it and kept giving her stickers. I just wanted to get the HELL out of there.
I did get my shit together enough to go up and thank Dr. G for his time, for getting her the MRI so quickly, and his support. I said I thought he was great but I never want to see him again, and he said that’s right, I only want to see patients once and that’s it. I finally asked what he was and he is a pediatric oncologist, and the other doctor is a pediatric orthopedist oncologist.
Ok, if you are still with me- now for the mental debriefing. Ok, I went three days not knowing if something was really quite wrong with my little girl. How do parents DO this? How do parents handle getting news that is not good? I guess you just DO and keep on and do what you need to do. Yesterday I was just thinking about my happy little life, and I’ve never been one to take ANYthing for granted, but I was just thinking and praying and hoping that next week will be a week like all the others with my boring little schedule, and arguing with DH over who gets to go to the gym that day.
I’ve been INCREDIBILY lucky in my life in that up until the age of 30 I never experienced a personal tragedy. I feel that is so rare. I was raised in a healthy nuclear family with loving and supportive parents. I excelled in school, college and graduate school and was given the support to pursue my career which is a bit random and certainly not lucrative. Both my parents are still with us and I am close to my younger brother and sister. No one has been seriously sick (lots of medical conditions with my sister and mom, but nothing that can be fatal.) It wasn’t until we started trying to have a baby that I had “legitimate” problems, culminating with the loss of our son. Then other bad stuff started to happen with people around me dying of cancer.
DH can not say he had a tragedy free childhood. His father died when he was 13 of colon cancer. From what I gather, his father was one of the most jovial and giving men on this earth and it’s such a shame neither I or his twin grandchildren will meet him. DH had a rough go of it but I’m so proud of him and his mother because he is such a well balanced person today, even with living through watching his father die at home. In fact, he has taught me so many lessons on how to deal with situations and I am so grateful to him for that.
The past three days has brought up all these kind of thoughts- how lucky I am, and maybe it’s now my turn to have some unluckiness, as I guess I deserve it. Like I said above, I am so so grateful for what I have, that all my loved ones are healthy, that I have the ability to be a full time mom yet take a few days off each week for time to myself. Lucky, lucky, lucky. So I figured, I was due.
And I’m sure everyone thinks this way about their children, but I’m going to write it anyway. The world needs a Princess. She is so fun loving, charming, sweet, kind, happy. She literally brightens a room when she walks into it. Strangers comment on her smile and her beauty. The world needs more people like this in it, and it would be a damn shame if she was taken from it. (I can say the same for Peanut, but not as much, as he is more introverted and will sit and figure something out, whereas Princess will just start dancing in the middle of the crowd and bring smiles to people.) She plays hard, she sleeps hard, she eats hard, she wakes up laughing and talking in her crib (vs Peanut who wakes up crying), she is pure sugar. This Earth NEEDS happy-go-lucky people to cheer up others. She is one of these people, and I am still stunned that she is MINE. (Again, how did I get so lucky?)
I’m still trying to figure out why we got such personalized and immediate attention, all those things that became red flags for me. Could it be that this is just the level of service at this particular hospital? But I feel medicine is just not like that these days, you don’t have two doctors waiting for YOU, and at two separate times either. Or maybe…you do? Could it be that they knew I was an informed patient and wouldn’t just go with the flow and thus they gave me more attention? I don’t know, I can’t figure it out. A few people have said that this is the nature of the field they are in- if they suspect cancer they act immediately and this is the type of service any child would have gotten. I just don’t know. (Oh, and I told the nurse who wheeled us into recovery how I overheard her talking about Dr. G being the attending physician and how sure I was that she was talking about my baby and she apologized and said no, no- it was the next patient.) I don’t feel there is any big lesson here, meaning not to read into anything because I feel like all my red flags were pretty legitimate, so I don’t have any words of wisdom. Again, I’m proud of DH and I and how we handled this, we didn’t fly off the handle and call everyone. I took the attitude of that I will tell people something when there is something to tell, once we have MRI results, good or bad. I didn’t want to unnecessarily worry other people. But it was so odd getting emails these past few days and how silly all of it seemed, how unimportant. Life kept on going even though we were biting our nails.
So there you have it. What a whirlwind. All I want to do this weekend is be a family unit and appreciate every single millisecond that I am not one of those families sitting in the waiting room of a children’s hospital, for whatever reason. I know I have more to hash out in my brain and probably here, but this is already so long. Thanks for listening and reading, if you made it this far. Now, go give someone a hug and tell them you love them!