A Pilgrimage, An Offering

Amelia and I made a trek to The Children's Hospital on Wednesday to drop off some toys as a Christmas donation. Instead of exchanging gifts, our (very generous and wonderful) playgroup donated gifts for the hospital at a little playgroup holiday party Amelia and I hosted on Tuesday. We ended up with four big bags of toys, books, art supplies, DVDs and even a mini-DVD player to donate. While we were there, I also wanted to buy some Wagon Blend coffee to give as gifts this year.

I was a little worried about returning to Children's. If you don't know the story of our experience there, you can read about it here (scroll down to "Hospital Story Part 1 to start from the beginning). I woke up at 4:30 in the morning on Wednesday reliving a lot of the experience; then I wondered why I had it on my mind--funny. I was thinking it was kind of crazy to voluntarily return to the hospital. But I wanted to make an offering, however small, to the hospital for Christmas, in honor of all the great care Amelia received while she was there.


Amelia on her last day in the hospital

Amelia and I loaded up and left for Aurora around noon. She happily ate a special treat--a Wendy's Kids meal--on the way. The girl loves her hamburgers. When we arrived, we parked and walked into the lobby.

It's hard to describe how I felt. I did of course remember being in that lobby was a worried parent, and I could see the worry (and exhaustion) in several other parents' faces as soon as I walked in. But mainly I felt like what I was--a visitor. Amelia and I found the room where there were collecting donations, then found a little red wagon to take back out to the car and return with the rest of the gifts. Amelia enjoyed the wagon ride, the sticker she got, and the little toys they have in the lobby. After we dropped off the toys, we took the elevator to the 9th floor with a basket of chocolates and candy for the wonderful nurses who took care of Amelia. As I had expected, we didn't get to see any of them, but we left it in the hands of a kind hospital worker who promised to find the right people. On the way off the elevator, Amelia got her fingers caught and smooshed in the opening door. As she cried (mostly with rage) and I comforted her, it really hit me how much of a visitor to the hospital I really was. My perfectly healthy and stubborn child, who tried again to touch the elevator doors the very next time we got on the elevator, is just that--wonderfully, blessedly, healthy. And the primary emotion I felt throughout our pilgrimage to the hospital was gratitude. I feel so incredibly lucky that my and Dean's experience with a very sick child was so short. I am infinitely grateful for Amelia's health and infinitely grateful for Amelia.


Our happy, healthy 2-year-old

There is something that happened while we were in the hospital that I have not mentioned to many people, and never to anyone in full. It's a very small moment but also a very big one. While we where there, they were doing one of those radio fundraisers for the hospital. The lobby was often full of DJs and music and parents and patients telling their stories on the air. Once when I was leaving the hospital for some reason, a mother was with talking to the DJ. She was telling the story of her child's illness. It was an illness her child did not recover from, and she was describing the moment the doctor's told her that there was nothing more they could do for the child. I can't tell the whole story because I pretty much ran from the lobby in tears, but what I remember, what was hard to comprehend at the time and honestly, still is, is that she was speaking about how grateful she was--for all that the doctors and nurses did do for her child, for the time she had left with her child, and for the person her child still was. I am sorry to be writing about this stuff--it's brutal. But I will always remember that mother's voice, and her gratitude.

One of the scariest things to me about parenthood--and life--is that we don't know what's going to happen next. For now, I have a beautiful, healthy, vibrant, fun-loving daughter. Having her is the most challenging, the most interesting, the most wonder-full thing I have ever experienced. This Christmas season, I offer a heart filled with love and gratitude to all of the other wonderful people my life, to the friends and family and neighbors who make my rich life even better. I love you all, and I hope your holiday season and new year are as filled with blessings as my own life has been so far.


Merry Christmas from all of us

Hospital Story, Part 2

So Dean and I left Amelia with the surgeons. We walked back up to our room where Dean's parents were waiting with dinner. It was hard to leave Amelia and I was scared but I also knew that she definitely was not going to get better without surgery. And we felt very good about the care she was getting at The Children's Hospital.

On yet another side note I want to say how amazing this hospital is. You should take some time to look at their virtual tour. It is a beautiful place and remarkably cheerful considering the fact that it is filled with sick kids. Every detail seems designed to engage children. It is filled with toys and sculptures and aquariums to play with and look at. Even the floors are beautiful--the main lobby floor is a collage of colorful birds and butterflies, and the floors in the elevator are studded with beads and glittery squiggles. And they have all these little red wagons for the kids to ride around in. There are playrooms and a library. There is a free daycare for siblings. There is a fabulous omelet bar in the cafeteria, and they make great pancakes too.

We had left Amelia for surgery at 6:20 PM, and the nurse said she would give us a call at 7:30 to let us know how things were going. As 7:30 approached and then passed, I got that nervous, faint-y feeling again. On the one hand, as I mentioned before, hospital time is not like real time. On the other hand, she had said "at" 7:30, not "around" or "close to" or something like that. She had said she would call us on the surgery waiting room phone if she couldn't reach Dean's cell, so I left Dean and his parents in the room and went back down to the waiting room. Then I was even more nervous there, so I called Luli and the nurse had just called Dean. When I got back up Dean relayed the nurse's report that Dr. Bruny had done everything she wanted to do, and we could meet the surgeons down in the waiting room in about twenty minutes.

So we went down and waited. When Dr. Bruny came out she said the surgery had gone well. Amelia's bowels had kind of rearranged themselves to block in her abscess so they were able to find and clean out the infection pretty easily, and they found and removed her appendix too. The only strange thing was that her appendix did not actually look perforated (aka burst). So they were not sure, if the appendix was in good shape, what would have caused the infection. But the doctor didn't seem concerned about it. I, however, immediately wondered if there was some sort of mystery disease Amelia could have that caused random weird infection in her body. But the doctor, again, didn't seem concerned. She said sometimes the appendix is perforated and you just can't see it, and sometimes you just never know what caused the problem.

I am going to fast forward here and say that we still really don't know what caused all this. Dr. Staetz told us that the germ that caused the abscess was a strep germ that usually abscesses in the brain, but the a surgeon told us it lived in the gut. (In any case it was not the same as the strep throat I was to get the following day.) The pathology report on Amelia's appendix showed that everything was consistent with appendicitis, although the pathologists did not see a perforation either. Picture a team of surgeons shrugging their shoulders here. Anyway, they fixed it.

So. Amelia was out of surgery and on morphine for pain and some other meds (an antibiotic, an anti-nausea drug, and maybe one more). The next day she mostly slept and was still very out of it. We were waiting and hoping for her to talk. But she still had this NG tube in (it goes from nose to belly and releases fluid and gas from the stomach), and she had to have these long braces on her arms so she wouldn't pull it out, so overall it was best that she was kind of in a morphine haze. The following day, Friday, I woke up feeling terrible, even for someone who had slept maybe 7 hours in the last 3 days. My throat was killing me and I thought I was going to collapse. The nurse checked my temperature and I had a fever, so Jim drove me home to rest for awhile. We got back to the hospital around 5 PM, and honestly I don't remember Amelia's state exactly. I know had already removed the NG tube and that we were waiting for her to start passing gas to relieve her swollen belly so they would not have to put the tube back in. I think sometime that day she started saying a few words and saying her animal sounds. Overall she was improving and already in much better shape.

Friday night was fairly peaceful for Amelia but horrible for me because of my sore throat. An angelic nurse gave me her own personal numbing cough drops, which go me through the night. First thing Saturday morning I drove to a nearby Urgent Care center and got a strep test, which was positive, so I got some penicillin. After I got that in my system, I started feeling better pretty quickly. However we were still worried about Amelia's distended belly. The doctors were saying that if she didn't start passing gas soon they would have to put back in the NG tube. Since Amelia was very aware of what was going on at this point, we all really wanted to avoid that. It would have made her totally miserable. She can't stand it when something is touching her face or stuck to her hands. She doesn't even like to wear a hat. So a tube taped to her face and itching her throat and nose would have been quite a trial. Plus putting the thing in is no picnic and having witnessed it once I was planning on being very vocal about not wanting the tube unless it was totally dire. Luckily, Amelia gradually got gassy. We were infinitely relieved.

Sunday was a day of waiting for poop. She was allowed to breastfeed again, and she was very happy about that. (I had requested a hospital pump and was pumping for maybe 5 minutes a night. I was too tired to do any more. Honestly I had come to terms with the idea that this might be the end of breastfeeding, but it all worked out okay.) Once Amelia had some milk, she started having more bowel sounds and finally some poop. Monday she ate some solid foods--Cheerios, rice and noodles Luli made and brought, some crackers. We had high hopes for going home on Tuesday. However, it was not to be. A blood test Tuesday morning showed that Amelia's white blood cell count was still slightly too high for the doctors' comfort. Dean and I were very frustrated because they told us that to go home, Amelia needed to be eating and pooping, and she was doing that. After several conversations with the surgeons we got the message that their decision might have more to do with medical liability than Amelia herself. Dean and I were frustrated because not only were we both tired of living in the hospital, we could tell that Amelia was just getting worn out. It was very hard for her to get much rest with nurses and doctors and who knows who else coming in and out of her room all the time. She looked exhausted and when we brought her back to our floor from a wagon ride, she would whimper when she saw where we were. And at lunch, when Amelia was sitting in my lap holding chicken finger in one hand and a cheese quesadilla in the other, it seemed plain silly to be in the hospital. But we made ourselves get over the frustration and tell ourselves that if out biggest problem with Amelia's doctors was that they were too careful, we were in good shape. (It turns out you can be frustrated and grateful at the same time. It was a spiritually interesting moment for me to realize that.)

Tuesday night was happy in that we had high hopes for getting out of the hospital the next day, and I even had hopes for a good night because the doctors had agreed that Amelia did not have to have her vitals checked while she was sleeping. Dean brought Thai food and the gratefulness in us had overcome the frustration. I have always tried to be grateful about Amelia's health, reminding myself when I am tired or frustrated how lucky I am to have a healthy baby. But I don't think I ever really appreciated it until we went through this. The truth is that what we went through, while obviously stressful, is nothing compared to what so many of the kids and parents in that hospital were and are going through. What was wrong with Amelia was not chronic and it is fixable. It is fixed. We are so grateful that she does not have cancer or a million other things that she just as easily could have. I still am thinking about those parents and kids many times a day, wishing them peace and strength. We are so, so lucky.

And I also want to thank everyone out there who sent us thoughts of healing and of love, who prayed for Amelia, who offered to help us with anything we needed, who called and texted and brought food and magazines and sent Amelia toys and crayons and balloons and cards. Each of those things really was so helpful. I knew I had good friends in Denver, but I didn't know how good they were until this! And we were especially lucky to have Dean's parents around. It will not go down as their best vacation ever, but their presence made it so much easier for Dean and me to get through the week. And even with so many of our friends and family members so far away, it was so helpful for me just to know how many people were thinking about Amelia, sending her support.

Wednesday morning, I woke up to a surgeon entering the room. He walked over to my air mattress and said, "Do you feel like going home today?"

Yes! And, although I was prepared to wait around most of the day for the discharge ball to get rolling, we ended up getting out of there pretty quickly because the hospital was totally full and they needed our room. Amelia got her last tube removed (note to surgeon: quietly singing "Twinkle Twinkle Little Star" while removing a main line from a screaming child is more sinister than comforting) and we got our instructions and off we went.

So we have been home two nights now. Amelia is getting better and better. She was wary at first, kind of looking around wondering where we had been for so long. You can tell her incision hurts when she squats down and tries to stand back up, and she is definitely not as agile or quick as she was before the surgery, but she already moving more and seems to be in less pain. Also, she is still a little overly poopy from her antibiotics. However, I just talked to a nurse and she said the poop sounds like a normal side effect. So I think we are in good shape.

I am very glad to have told this story and put it behind us. Look for some Amelia pictures to be posted soon--live from Denver, now appendix-free.

Hospital Story, Part One

As you may or may not know, Amelia was in the hospital from Tuesday, February 15, through yesterday (Wednesday, February 23). A lot of friends and family have gotten the story in bits and pieces through texts and interrupted phone calls, or not at all, so this post should fill you in. Plus I am hoping it will be therapeutic to write this down.

Amelia was sick with a cold at the end of January and then with what we thought was a stomach virus after that. You can read about the "stomach virus" below. Last Monday afternoon and evening, Amelia felt very bad and spent about 3 hours just dozing my my arms. When Dean came home, we noticed that Amelia's stomach was distended, so I called the pediatrician on call (for the 6th or 7th time). She said that that could be part of the diarrhea but to call if it was stil going on on Wednesday. Monday night was rough; Amelia was waking up at a lot with a fever and diarrhea. Tuesday morning, she seemed a little better. Her fever was lower, and when she saw our leftover pasta in the frig, she said, "num num num" and "nooo-dle".

She ate some nooo-dles and some toast. Then she slept and we played a bit. The diarrhea stopped for awhile. But then she started fussing again, so I soothed her to sleep in my arms on our bed. When she woke up, she was kind of whimpering and her fever was a little higher, so I called the doctor. I had just decided I could not go through any more time not having her checked out, and if they told me it was a stomach virus and to come back tomorrow, so be it.

Amelia's pediatrician, Dr. Staerz, is a great doctor who has a solo practice. She shares calls with another doctor a little farther away from us, and sometimes their patients go to the other's office. We ended up going to the partner's office because they had an earlier appointment. On the way, Amelia was talking to herself and had perked up.

However, when we got to the doctor's office, Amelia took another turn for the worse. She began vomit ting while we were trying to get a urine sample. Both of us were covered in partially digested penne. Luckily had I had some extra clothes for Amelia, but not for myself. The doctor decided to draw some blood to run some tests, but when her nurse tried to find a vein, she was nervous that Amelia was too dehydrated and asked me if I would mind going to Dr. Staerz's office so that she could do it. I did not mind because I wanted Dr. Staerz to see Amelia anyway, so we packed up and headed to the other office.

In the meantime, the nagging worry I had felt all week had become acute. I was just starting to feel like something was very very wrong. Amelia slept on the way to the second doctor's office, and she slept in my arms while we waited for her blood to be drawn. She woke up and started vomiting again, so I rushed her to the bathroom. Most of it got on me. At that point I was pretty much in for a penny, in for a pound vomit-wise. When Dr. Staerx saw Amelia, she said, "She isn't well." Indeed. She drew the blood, and then told me that she wanted to me to stay and have Amelia sip some melted Popsicle or Pedialyte. If she couldn't keep in down, she wanted to me to take Amelia to an emergency room for fluids.

It was almost a relief to hear that, because I just wanted Amelia to be better. We got some melted green Popsicle down Amelia by giving it to her with a syringe, but she threw it back up. So with the doctor called the local ER to let them know we were on the way, and I called Dean, and off we went.

Amelia again slept on the way to the ER. There was valet parking so I could take her right in, and it was very calm when we got there, so we were taken right back to a room. While I was talking to the ER pediatrician, Dean and his mom arrived. (Dean's parents has just arrived for a week's visit. Great timing.)

Then began the process of getting an IV in Amelia's tiny veins. She was much more dehydrated than we had realized, and it took the doctors and nurses at least 10 or 12 tries before they got one in (in her foot). It was awful. Amelia was scared and in pain and being stuck repeatedly with a needle. Plus every so often she would throw up, and her vomit was taking on a rusty color, looking more and more bloody each time. All I could think was "something is very wrong," but I kept trying to soothe Amelia and tell her everything was okay.

Just a side note to say I almost feel like I somehow became a real mother sometime during our experience in that emergency room. Despite all that was still to come, I think our time in the first ER was the worst part of this whole experience because Amelia was in so much pain and we had no idea what was wrong. She was so upset and we were so scared. It was truly the worst part of the worst night of the worst week of my life. I felt like I was going to faint. All I wanted to do when they were trying to get the IV in her, and later when they were drawing spinal fluid to test for meningitis, was to leave the room so I didn't have to watch these things happen to my baby. But I couldn't. And there was no way I actually would have. I realized that my job was to stand there and tell Amelia that she was brave and strong and that everything was going to be okay. And for that to happen I could not be upset. I had to be calm and strong myself. And so I was--or I tried very hard to be.

Anyway they finally got the IV in. They did the spinal tap. (Random memory--after the procedure the ER doctor was taking the tape off Amelia's back and he said, "I think getting the tape off is the worst part." Um, no, I think the part where you stuck a huge long needle into my baby's spine was the worst part.)

It's hard to remember the timing of things after that but we got the good news that Amelia did not have meningitis and then they told us that they had gotten the results from her earlier blood tests. Her white cell count was very very high. The ER doctor told us Dr. Staerz wanted up to go to the nearby Children's Hospital so they could do more evaluation. Then he told us one of the things that they would be looking into was leukemia.

That might have in fact been the worst moment in all of this. It was the most terrifying thing I have ever heard. The ER doctor kind of wound his speech back around to saying that odds were she had a stomach virus, but it was too late for that kind of talk. We were in a black hole of terror and Amelia was still throwing up blood.

We must have waited quite awhile for a team of ambulance people to come move Amelia. In the meantime the ER doctor had talked to an oncologist at Children's, who told him that based on what she could see of the blood test and what we were describing, it was likely not leukemia. So that was reassuring but in the way that pouring a teaspoon of hot water into an icy bathtub might be warming. Finally the ambulance people arrived, got Amelia strapped into to a stretcher, and off we went.

I rode in the ambulance with Amelia while Dean drove the car. When we got to Children's Hospital they had a room in the ER waiting for us. A doctor came right in and the first thing he said was, "So what did you hear at [the first hospital]? A lot of people come in from there freaked out."

I said we were had heard leukemia as well as some other horrible-sounding diseases. After telling us that leukemia was a scary word but that the survival rate for it was over 95% these days, he went over the reasons he did not think that Amelia had it. He did the same for the other diseases they had thrown out at the other hospital. He also drew some more blood so that he could have a very good hematologist there take a look at the blood just to be sure.

Another side note--this experience has shown us how subjective a lot of medicine is. For example different doctors might read a high count of white blood cells in different ways depending on how the cells look and how old they are. Dean and I both realized we tended to think of medical diagnoses and treatment as very exact and scientific but that is not always the case. It underscored in my mind how hard it must be to be a doctor. I am a million times more impressed with doctors than I already was.

Again, I can't remember the timing, but we were in the Children's ER from about midnight to 6AM. A kind nurse brought in a cot for Dean and me to share. I also spent some time lying with Amelia on her bed. Every now and then she was still waking up, looking miserable, and throwing up blood. Her little lips were parched and rimmed with red. The hematologist came in and confirmed that Amelia's blood looked nothing like leukemia. The ER doctors kept coming in and checking. Finally he told us he wanted to admit her but he was not sure whether to send her to a room or to get a CT scan. He eventually decided that because her symptoms where not really in line with appendicitis and because it is so very rare for such a young child to get it, he would send us up to a room to let the hospital doctors continue to evaluate Amelia. Dean and I agreed that that seemed like the best thing to do at that point.

As we were wheeled up the our room, the sun was rising. It was the first time ever that I have stayed awake all night.

When we got to our room, we were greeted my our kind nurse Leesa, who would actually be our nurse for 5 of the 7 nights we would be there. Again, my memory is fuzzy at this point. Doctors came in and out. Amelia kept throwing up. The took a stool sample. Everyone was still leaning toward virus at this point. Apparently Dr. Staerz called around 8 or 9 AM and ordered an x-ray, and that's when things began to move along.

The x-ray showed that there were some issues with Amelia's bowels being blocked and I think they also showed that she had an infection in her abdomen as well. We were told the surgeons would come up and look at Amelia and either order a CT scan or do surgery right away. The surgeons came up. They said it was not a case in which we needed to rush to do surgery and ordered the CT scan. We got the CT scan. It confirmed what the x-rays showed: obstructed bowel, infection, possible ruptured appendix. She was going to need surgery to fix it.

By the time all this happened it was maybe 1 or 2 in the afternoon. Amelia was clearly in pain. We fully expected her surgery to happen very soon, but at that point the doctors began to speak of putting in a catheter and seeing how she did. I began to be suspicious that they were thinking of not doing the surgery that day. The doctor we were talking to, who was not a surgeon, was being vague on what the plans actually were. The fact that some emergency surgeries had come up was mentioned. At this point, trying hard not to be tearful, I made it very clear to everyone that I wanted Amelia's surgery to be done that day. Maybe she wasn't a life-threatening emergency, but she was in pain and we had already spend more than half the day waiting for decisions and test results and doctors to arrive and etc. Hospital time is very slow.

After that things started to move along. A surgeon came up to tell us she was scheduled for 6 PM. He talked about the surgery, the procedure, benefits and risks. We signed some papers.

We were still scared but relieved that things were moving in the right direction as far as fixing poor Amelia. I really don't know what we did all afternoon, but at 5 PM, a nurse came and told us they were ready for Amelia. Some people came and wheeled her crib to the surgery floor. We waited awhile and then talked to some anesthesiologists, then to Amelia's surgeon, Dr. Bruny. She was extremely reassuring. She seemed very calm, cool and collected, which was the case with most of the surgeons we spoke too, but she was also plain nice. Not that the other surgeons were mean--they were just direct to the point of being curt. I am not criticizing them--they have a very intense job. But Dr. Bruny made us feel very good. She told us her plan was to do the incision, clear out the infection and then remove the appendix. She answered our questions, and then wet to get ready for the surgery. They gave Amelia the first medicine that would put her to sleep, we kissed and told her we loved her, and the nurses, while playing with the stuffed animals in Amelia's crib, wheeled her away.

Whew. That's all I can do at this point. Spoiler alert: Amelia is home now, happy and playing, so don't worry about the ending. But I will have to write about the surgery and the days after ASAP.