What the Henkel, Padawan?

During our hospital visit last Monday we met with the doctor who will be observing the progress of Adrienne’s eye. The staff took a blood sample, her blood pressure (both resting and active) and heart rate levels. Since all seemed normal we were set to start the treatment.

At the beginning of the meeting, the doctor read her chart where it said that we should start a steroid treatment and if that didn’t work, we could move on to the beta blockers. I was shocked! I would have been confused if any of the past meetings had been in Swedish, but since I understood everything that had happened I knew it was a mistake. I can’t believe that our doctor would write such a thing! We NEVER talked about steroids, just how lucky we were that this new beta blocker treatment came along when it did. Anyway, we corrected the information with this (very nice!) doctor and went on with the original plan. He even tried to call the other doctor but she was unavailable.

The doctor suggested that we wait for our next visit when a dermatologist colleague (who has a special interest in vascular anomolies) could join us. It would be in a couple of days and we could get started then. When I said we didn’t know (before the appointment) if we were suppose to be starting immediately or not, but were prepared for either, he changed his mind and said we could start right away! I really like him!

We talked about how much supervision would be needed, so he called his friend the cardiologist (this guy seems to have a lot of friends around there! haha) who said that this medicine is used frequently in the cardiology wing and they have never had a problem with it. He suggested that we handle it ourselves, since he didn’t think there would be a problem plus he said they have been getting overloaded with all the extra cases who have to be observed unnecessarily.

Our new doctor was convinced by this and wrote us the prescription that we’ve been waiting on for months. We thought we had made it, until we were told at the pharmacy that the drug was unavailable and had to be special ordered. Our old doctor called today and informed Erik that it was harder to get since our prescription is for the liquid version, older children and adults could have used the regular tablets. That makes sense, no one at the pharmacy had been able to explain why it wasn’t available.

We started last night and I think I can see a difference already. I might be fooling myself or it might have just been a good day, but I think it’s starting to work. She also had to get her second round of vaccination shots today, so she has been crying which usually makes it bigger not smaller…so I’m just saying…maybe it’s working!

Here’s a picture of her from today. I don’t think you can see the progress from it but it sure is cute.

I call it “Whatchoo talkin’ about Willis?!”

Adrienne is 5 months old today. At the hospital they weighed and measured her. She is 6.85kg (15lbs) and 63cm (25in). We’re planning on starting solids in a month, but we won’t push her if she’s not ready. We’ve been using her corrected age to follow the development milestones and she is spot on. The only thing that she hasn’t done so far is roll over and she is so close! We’ll have to keep practicing!

After waiting more than a week, we found out on Thursday that the next doctor’s appointment will be taking place the following Monday - that’s tomorrow! I am so happy that we didn’t have to wait long after receiving the notification, like I thought we would.

I’m expecting to get her started on some sort of treatment regime tomorrow, but also trying not to get my hopes up. Because we have to get the treatment through the oncology department, we might be dealing with a new doctor. It could turn out to be some sort of meet n greet where they just examine her eye and set up another time. I will scream if that happens.

I can’t believe how nervous I’m getting. I have butterflies in my stomach and I don’t think I’ll sleep much tonight. I’m not excited about the fact that we have to be in the hospital two hours before the appointment. Not sure why we have to be there so early, but it was in our instructions from the hospital.

I’ve done a lot of research on other babies who are getting propranolol for their hemangioma and a lot of them have been kept for observation at the beginning. This wasn’t mentioned to us by the doctors we saw a few weeks ago and that’s what makes me feel like tomorrow might turn out to be another preparation day. I wouldn’t mind staying in the hospital to be on the safe side, but I wouldn’t mind jumping in with both feet either. I just don’t know enough about the Swedish medical system to take a guess at which one it will be.

I’m also nervous that we are going to start her on medication that hasn’t been used much for this purpose. It’s only been since June that it was found to help treat hemangiomas, so I don’t have much to research to rely on. The results I have seen have been amazing. Some of the cavernous portions from these studies have disappeared within weeks.

As soon as the treatment starts, we’ll be keeping a journal and taking daily photos to try and keep track of her progress. Hopefully, we’ll be able to post a significant improvement over the next couple of weeks. But, of course, I’m getting ahead of myself again.

Wish us luck!

Well, it looks like our young Padawan will finally be getting treatment for her eye. We met with the panel of doctors from various fields and they decided to try the new beta blocker treatment. They were shocked that we had heard about the new treatment since it was only discovered in June 2008. The great thing about this is that it has far fewer side effects than the steroid treatment.

Now, we wait for them to book an appointment with the children’s hospital who will setting up the treatment schedule. Because it’s such a new treatment, they will have to keep a close watch on her overall health. That means our extended trip to Canada will be postponed for a little bit. We’re not sure for how long until the treatment schedule is established. Disappointing, but very much needed for our little girl.

Here she is enjoying her first time in her new Bumbo chair. It’s suppose to help her strengthen her neck muscles, supplementing her much hated “tummy time”. It’s already helping her digestive system since every time we put her in it the apartment experiences major earthquake tremors.

by Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

“Armstrong, Beth, son. Patron Saint, Matthew. Forrest, Marjorie, daughter. Patron Saint, Celia. Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.” Finally, he passes a name to an angel and smiles.

“Give her a preemie.” The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a premature baby a mother who knows no laughter? That would be cruel.”
“But does she have the patience?” asks the angel.
“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I’m going to give her has a world of its own. She has to make it live in her world, and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you.”
God smiles. “No matter, I can fix that. This one is perfect. She has just the right amount of selfishness.”

The angel gasps, “Selfishness?! Is that a virtue?” God nods. “If she can’t separate herself from the child occasionally,she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see– ignorance, cruelty, prejudice– and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her Patron Saint?” asks the angel, his pen poised in the air. God smiles.
“A mirror will suffice.”

We didn’t get the answers that we wanted to hear at the doctor’s today. The so-called “vascular malformation specialist” said that she thought that it is more of a hemangioma. That’s it. She took one look at her and wanted to move on, basically dissing her. I guess we won’t be her pet project after all. She did call Erik later in the day and schedule a meeting with a radiologist who will use an ultrasound to make sure that it actually is a hemangioma. Now, we have to wait until next week for that appointment, then the week after that we meet back up with her to hear the verdict.

I brought in all my notes and questions. She wasn’t impressed with that, stating that the information that I brought was from America where they “tell patients what they want to hear to make money”. I didn’t realize until after we left that the stats that I was using were from Australia. Why couldn’t I have looked down at the paper earlier? When I asked about the cortizone treatments (which I read should be administered as soon as possible for optimal results) she said that is only the very rare cases that receive treatment and doubted that Adrienne would be eligible for that. Then, when I asked my next question about the risks of flying with a hemangioma, she looked at me like I was crazy. She said that I couldn’t take her out of the country since she might be in treatment. WHAT!?!? You just said that she most likely wouldn’t get the treatment. Argh! When Erik asked if we would have to come into the hospital to get the treatment (if we would be so lucky), she said (shocked): “of course not! you could give it to her orally at home!” What!?!?! Why wouldn’t I be able to do that from Canada? Idiot!

So, we have to wait some more. In the meantime, I’ll be researching more on cavernous hemangiomas since that seems to be what the “doctor” thinks it is. At least, she didn’t just say: “let’s wait and see until next month”. I think I really would have lost it then.

Here is a picture of my supergirl after our appointment today. You can see that she isn’t pleased either. All this and she’s fighting a cold and having extreme tummy pain. She really is a superhero.

Since the last doctor’s visit, we have known that Adrienne’s eye could be caused by one of two problems: a benign tumor, called hemangioma or a vascular malformation which is basically when blood vessels and arteries have grown together incorrectly. I think it’s more likely that it’s the latter one since it seems to get bigger when she gets angry (which indicates that blood vessels are involved). The only thing that doesn’t point to it being a vascular malformation is that they are usually present at birth. Hers only showed up when she was about 8 weeks old. Although, it could be that it was small enough to go undetected.
I’m comforted by the fact that they are leaning towards a vascular malformation since the things I’m finding about hemangiomas on the internet are pretty scary. I found the following quote in a document that is trying to inform parents how to get insurance coverage for treatment since most companies will not cover it:

“Waner and Suen (1999) further stated, “Only 40% of hemangiomas involute with an acceptable result. Therefore, 60% of all patients with hemangiomas will require some form of corrective surgery” (p. 27). Williams, et al. (2003) also noted that “If these often disfiguring vascular lesions do not involute early, they may have profound psychosocial effects on the child and family” (p. 229).

I’m not saying that it doesn’t happen with vascular malformation cases but, from what I have read, it just seems like the hemangiomas grow quicker and can become a lot larger in size. The worst thing about the chance that it’s actually is a vascular malformation, is that it’s harder to get rid of. They can keep growing for life.

I’m hoping to find out more on at our next appointment on September 5th. They took pictures of her last time we were there, so they should be able to see for themselves how much it has grown and maybe be able to predict how much it will grow in the near future. I don’t want to put her through an operation, but if it’s an option to get rid of it as soon as possible, I will consider it.

I’ve been trying to limit how much research I do on this since I could easily drive myself crazy. But, I can’t just sit here and wait. I need to know what is going on with my little baby girl.

The biopsy went on as planned yesterday but we were told that the results won’t be in until next Friday. I guess all there is to do is wait…and make videos! Today, while we were getting ready to go meet Erik’s parents for fika, Adrienne started to smile at him. I grabbed the camera and captured a couple smiles but also some other fun facial expressions. My personal favourite is the one at the end where she looks bored and ready to move on “anyway!”

You can also see her eye a little better in the video. Some more bruising occurred during the procedure but I think it is from the doctors trying to take a better look at her eye or by holding it open while they worked on it.

I apologize for the sound of my voice. I really need to stay quiet while filming!

For as long as I can remember, I promised myself that I wasn’t going to be one of those mothers who runs into the emergency room every time my baby coughed or got a slight rash. So, when we saw that Adrienne had some puffiness around her eye, we decided not to panic. We kept speculating about what it might be - a blocked tear duct? a fingernail scratch? a bop on the eye with her tiny fist?

When it didn’t go away after a few days we started to wonder if it was an infection. We decided we would wait and talk to the pediatrician at our first appointment that was happening in a few days. We were relieved to hear that she thought the same things that we did, but she decided to send us to the hospital just to make sure.

The first hospital said that they didn’t have an eye specialist, so they sent us to a special eye hospital (I didn’t even know those existed!) in the city. There, we were told that they weren’t equipped to handle such a tiny patient, so we were told to go to the children’s hospital the following day. We finally got in to get a head scan. It showed that there is a mass of something behind her eye that is pushing it forward. It doesn’t sound as scary as it looks. In the x-ray, she looks like Quasimodo! Does this look like Quasimodo to you?!?

The doctors from both the eye hospital (is there a special word for those?) and the children’s hospital will be working together on our case. That makes me feel better, but it also makes for a lot of waiting time. We were finally called back in for today but were bumped at the last minute on account of emergency case that came in while we were being prepped. She even had a local anaesthetic cream already applied to her skin to help them insert the IV. I hate waiting, but it’s good to know that this isn’t a crisis and isn’t seen as something that can’t wait.

We will try again on Friday. In the meantime, we have an appointment with the eye specialist tomorrow morning. I hope he has some good news for us.

From now on, I think I’ll be one of those mothers who runs to the emergency room for every little sneeze, just to be on the safe side. Stay tuned for more of Adrienne’s eye adventures…

I can believe that Adrienne is 8 weeks old, but when I think that she is 2 months old - it just doesn’t sound right! I think it has to do with the fact that I compare her to all the milestones in the baby books/websites with her “corrected” age. If we treat her as if she was really born at the end of June, then she should technically be only 1 month old. Really, she’s 2 months old.

She’s been developing dramatically over the last couple of weeks. She is having more and more awake time, as well as more and more fussy periods. One of the things that she’s done that is completely amazing is how any time that I’ve laid her down for a nap with me (on my pillow), she falls asleep right away or stays there calmly looking around the room. Of course, I’ve only tried that when all else has failed. I never believe that it’s going to work, but it does! I really don’t want to wear that one out since it’s a wonderful way to get her to sleep and I will need it when I’m taking care of her all on my own.

We’ve just started taking Adrienne out to social gatherings and she has done well so far. We have joined some new mommies from Stockholm group for fika, had lunch with the girls and for supper over at Heather and Måns’s. During all of these visits, she’s slept through most of the time - so I hope that keeps happening. When my father was here, she was a wonderful sightseeing tourist . She’s such a natural!

Just look at the fun we can have while she is sleeping

She’s also becoming more interactive with us. Here she is having a conversation with her grandmother. I’m not sure who was doing most of the talking at the time, but they both seem quite involved.

This concludes the baby preparation portion of our blog!

We were very surprised to have our little girl arrive a month earlier than expected. Adrienne Shand was born at 10:46am on May 23rd. My water broke shortly after 11pm on the 22nd when I was brushing my teeth, getting ready for bed. I called my sister to find out if what I was experiencing was just poor bladder control or the real deal. It kept happening about every 2 minutes, so Erik rushed around getting a bag ready and drove me to the hospital. The strange thing was, I wasn’t in pain at all. No pain, no contractions. Come to find out later, that the extreme back pain that I had been experiencing during the week was actually an indication of premature labour. Everyone (including my midwife) just thought it was regular back pain since I’ve had a bad back since junior high. Once there, they told us that they would not release me and the baby would have to be born within 48 hours no matter what. They hooked me up to some monitors and an antibiotic IV, just because there was an increased risk of infection for the baby. No one ever told me why I went into premature labour, just telling me that she was ready to come out.

The staff of Danderyds sjukhus was amazing! Everyone made a point of speaking English to me and were all super supportive. We were suppose to have a doula with us during the birth, but because everything happened so fast, we had to do it without her. I’m actually happy that we didn’t have a doula since it gave Erik and I some down time to process what was happening. I was able to give birth naturally with some help of massage, a birthing ball, changing positions often and some beloved laughing gas. The pain was not at all what I expected. I thought that I was going to need the epidural, morphine, etc. (whatever they were offering, I was open to taking as long as I needed it) but no one mentioned further pain meds and I kept waiting for the next level of pain but the only part of labour that I thought was unbearable was the pressure during the pushing part (which is way too late for additional medication!)

People kept warning me that I could have the baby as early as 2 weeks early, and I took their advice seriously by moving my maternity leave/vacation earlier but I was not at all ready for what happened.
We spent her first 6 days in the hospital since she had some high jaundice levels. She was born at 2575 grams (5 pounds 7 ounces) and was able to reach her birth weight after just 10 days. It’s normal for babies to lose about 10% of their birth weight during the first few days after birth. Now, three and a half weeks later, she has reached 3155 grams (6 pounds 15 ounces).

We are blessed that she is here and are glad that she didn’t need any extra support that preemies usually need before they are released from the hospital. She’s adorable and so much a part of the family already. Her personality is already starting to shine through. I love motherhood so far!