Monday, March 31, 2008

"Normal" Life

This weekend life started to feel a little bit more like our normal family life. It was just us four and we went to an estate sale Saturday morning which are always fun for Michael and I. After lunch we spent the day outside. It was so beautiful and the fresh air felt so good. As you can see the fresh air did these three in! After a good late afternoon rest they all had a good evening.


This week Addie is on spring break so us girls will be going home to Indiana to visit family at the end of the week. We are looking forward to seeing everyone and letting them meet Margaret for the first time. It should be a lot of fun.

Friday, March 28, 2008

Margaret's Knee Update

Today the pathology report came in. Good news, but different results then what was originally thought. First off, it is benign! Praise God... Huge relief for all of us.

We were told after surgery that the tumor was AVM. However, the pathology report came back saying that the biopsy showed that it was actually a vascular capillary congental hemangioma. I'm sure you have the same "huh" response I had when the nurse told me that. Luckily, CCH had some good info on their website. The doctor also told me that they have one of the largest and best Hemangioma and Vascular Malformation Centers in the country. He did refer us to them and we will hopefully have an appointment soon. He also said that this could come back and would need to be monitored. I don't have any details other then the above right now. I do have lots of questions right now that will hopefully be answered at the next appointment. If you have questions feel free to ask me. I might not have an answer but if it's not on the question list it might be added to it.

Michael and I would like to thank everyone for their prayers. We never felt alone through all of this. The power of prayer is just amazing!

God Bless all of you!

Monday, March 24, 2008

Margaret's Knee

We have some information on Margaret's condition that we would like to share. If you didn't know anything was wrong, then the explanation below is for you. For the very, very few of you who were in the loop, you can skip ahead to the picture below for the diagnosis.

The Backstory
First off - If you didn't know anything about this, don't feel bad. You didn't miss anything, and we didn't intend to alienate anyone. We just didn't want to get everyone worrying over something that could turn out to be nothing at all. Also, we know how news travels, and how, though unintentionally, incorrect information can get passed on and cause issues. this way, we could control the information, and people would be informed once there was actually something to share. Only a handful of people were in the loop on this.

Just a week or two after Margaret was born, we noticed a lump. An extra bump on her left shin, just below the knee. Babies are round and chubby and lumpy - we really didn't think much of it at first. Then we noticed that it was still there a week later, and that there was no corresponding bump on her right leg. It was soft - not bone - noticeably raised, and it would move a little bit. Later we found that it was causing her great pain if it were bumped or pressed to hard, and at times warm to the touch - warmer than the rest of her leg. It was time to get it in front of a doctor.

Margaret's doctor agreed that it was concerning and should not be ignored, but had no diagnosis. She consulted with the other doctor's at the practice and also spoke with some specialists. Though they had no conclusions, they did agree that Margaret needed to see a specialist in pediatric dermatology. The doctor's first recommendation was at DeVoss Children's Hospital in Grand Rapids. The hospital is highly rated, the doctors well recommended, and we had both friends and family in GR that we could stay with. Unfortunately, they are not covered by our insurance. The second choice was considerably less attractive despite being in Kalamazoo and covered by our insurance. We were not going to take something this important somewhere we were not comfortable with. So the search began.

Our insurance provider was less than helpful in finding children's hospitals in a reasonable area that would be considered 'in-network'. "The system doesn't really work that way". Thanks for nothing. Emily went to work finding the top rated children's hospitals for dermatology. Once she had a list that were within driving distance (which included some excellent hospitals), she called the insurance company once again to find which ones were covered. Motts at UofM - No. Riley's in Indy - No. Cincinnati Children's - Yes.

Cincinnati was covered and also happened to be one of the best on the list. They also happened to be 6 hours away. Emily called to make an appointment with the blessing of our doctor. Their first opening would be "in July". - - - - it nearly broke Emily's heart. Once she pressed, they found that they could get her in on March 18 at a satellite campus. It was 3-4 weeks away, but much better than 3-4 months. Even better, the appointment was with the head of the department who was very highly regarded herself. God was with us that day.

We knew it would be hard, but we made the decision that until we knew something, it wouldn't be right to get everyone worried about it. Maybe it was just a pocket of fat or fluid that could be drained on the spot. Maybe it was nothing and would go away with time. Maybe it was much worse and needed surgery. It was bad enough that we had to fret and worry over the unknown for all this time. We appreciate everyones prayers, love and support, but we couldn't put everyone else through that.

In the meantime, we've done a lot of praying. We took Margaret to the annual "Healing Mass" one evening at St. Bernard's (our parish here in Benton Harbor). With most of the parishioners in attendance over the age of 70, we stuck out like a sore thumb. As Father was making the rounds, Margaret was getting fussy. We were about 45 minutes in and she was likely hungry and needing a diaper change. When Father came to us, I stood and held her out to him. He blessed her and prayed for healing. She immediately calmed down and relaxed, falling asleep as I sat down. We literally put her illness in God's hands that night, and His presence was felt.

Emily took Addie and Margaret to stay with Margaret's Godparents (Emily's sister Anne and her husband Ryan) in Ohio - only a couple of hours from the hospital. Emily and Anne took Margaret to the appointment in the morning, and Addie spent the day with Uncle Ryan, decorating Easter eggs. I made the very difficult decision not to go to the appointment. We knew that if it was something serious, we would likely be in for any number of trips to Cincinnati or who knows where else. I would take the time off of work for any needed procedures, but forgo the initial visit. It was not an easy decision. And I still don't know if it was the right one. Emily was comfortable either way, and we knew she would not be alone.


The Diagnosis
The Lord doesn't promise to stop suffering, but He will always walk with you through it. The initial visit, last Tuesday ,with the pediatric dermatologist yielded little info other than that it was not a dermatology issue. They determined this after an x-ray of it showed a "blurry" spot. She was, however, able to get us in with a pediatric orthopedist as well as schedule an MRI. And she was able to get us in on Thursday of that week for both.

Emily and the girls returned home on Tuesday night. Tom drove up on Wednesday afternoon to pick up Addie, and after work, Emily and I were on our way back to Ohio with Margaret. It's a good thing she sleeps well in the car right now.

On Thursday morning, we made our way to the CCH main campus for our morning MRI and afternoon appt. with the specialist. Being understanding of our situation - 6 hours from home and prepping a 9-week-old for an MRI, they got us in right away. For Margaret's age, we had to stop breast milk 4 hours prior and sugar-water 2 hours prior. Marg was not a happy camper that morning. After the MRI, she came out of sedation fairly quickly and was holding milk down. When we told them that our next appt. wasn't until 4:30, they offered to try to get us in sooner. After a call, they sent us over right away. It was right around noon. They took us back around 1:30 and we saw the doctor around 3pm. He reviewed the MRI and gave us some broad conclusions. It was well defined, and free of the joint and tendon. It was soft tissue - no bone - and would require a biopsy to know more. But we were looking at a tumor of some sort. Then when they went to schedule the biopsy with the recommended bone and muscular tumor specialist, their "soonest possible appointment" was the following Tuesday. I kindly explained, for what seemed like the hundredth time that day, that we live 6 hours away, and can't just pop in and out for these appointments. Knowing full well that it was 4pm, I asked to do it that same day (Thursday). The nurse went back armed with information and came back with a better answer. She put us in as an "add-on" for Friday. This meant that we didn't have an actual appointment, but that we would have to call first thing in the morning to find out when they would 'work us in'. "Could be 7:30 AM, could be 7:30 PM". We met with the nurses who assist the specialist doing the biopsy to go over the details of what we would need to do. This, of course,would require another fasting on Margaret's part. Then again it was Holy Week. Speaking of fasting, we made hotel arrangements through the hospital concierge and decided that despite being 4:30 PM, maybe we should eat lunch.

The next day, our 6 AM inquiry yielded a 6:15 call back saying, "Come in now". As soon as we got to Same Day Surgery, they took us in and got the process started. Weigh in, measurements, paperwork, meeting with the nurses, anesthesiologists, and ultimately the specialist, and before we knew it, we were handing her off outside the operating room. After about 45 minutes they called us back to speak with the doctor. Since we were an add-on, the specialist had to go on to the next surgery right away, but we met with the surgical chief-resident who assisted. She informed us that while performing the surgery for biopsy (removing a small amount of the mass to use for testing and diagnosis), they found that it was a very well-defined avascular malformation or AVM. Knowing that, they chose to remove the entire mass right then instead of drawing it out longer. The results of the biopsy will be available in one week. Until then, this is what we were told after surgery:
  • The entire mass was removed
  • They are typically benign, but not always
  • They can come back
  • These manifest during fetal development
  • The precise cause is unknown, but there is no evidence that they are caused by any environmental exposures during pregnancy
We have a long list of questions for the doctors that we hope to have some answers to soon. Until then, we are just glad to be home, together, sans-tumor. We'll post more info when available. We do have some after surgery photos that we will not post here but can email to those who want to see them.

FYI- We were not able to find a lot of relevant info on-line, so don't expect too much out of a Google search. Some of the best info came from searching specifically on a hospital's website, such as the above links to the Cincinnati Children's Hospital.

Sunday, March 16, 2008

Sweatin'

It was a busy weekend in Benton Harbor. We had finally made the decision to pull the trigger on replacing the water softener. Nothing stays clean, soaps won't suds, and we go through water filters way too fast. During the week, I had unhooked and drained the old water softener (via a new 1/2 inch drain hold near the bottom). With it pulled away, we decided to take advantage of having one less appliance on that wall.

On Saturday, Mom and Dad came up for a visit / work day. Dad and I worked on prepping and sealing the basement wall, while Mom spent some quality time with the girls. This gave Emily a great opportunity to get a few things done. By the end of the day, we had two coats on the wall and the new water softener in the basement. The only hang up was that the existing plumbing was about 3 inches too long to work with the new, larger bypass valve.
On Sunday, Tom and Patty came up for a visit / work day. Neither of us had much copper plumbing experience, but how hard could it be? Not very. YouTube was a big help.


We picked up some supplies at Lowes, and then it was time to do some SWEATIN'. Tank tops, short-shorts, and afro haircuts!

Ok, not really, but the pipes and fittings we definitely oldies. We removed the old fittings, cut 3 inches off of each pipe, and then re-sweat the old fittings back on. A short time later, the new softener was up and running.

One more coat of Dungeon-B-Gone on the walls and that project will be done. What a weekend!

Friday, March 14, 2008

Happy Two Months Margaret!

Margaret turned two months old yesterday. Hard to believe how fast time flies. We did not do much celebrating though because all three of us girls are fighting off some sort of bug. We have runny noses and congestion. More Margaret is having a hard time with having her nose suctioned clean and has not been able to sleep well. I'm hoping that this will pass soon for her.

Today at her well baby check-up she weighed in at 12lbs 2ozs and 24 inches tall! The doctor was impressed with her good growth and beautiful skin. I've included some pictures of her here but there are a lot more on the flickr site. I had issues with downloading our photos but now have it fixed so there is a little bit of a back log of photos on there.

The coyote den search was not as sucessful as the guys had hoped. The deer leg we had seen her carrying across our yard ended up in our neighbor's yard three houses down because their dog dragged it up out of the ravine. So the one clue we had was moved... it was also hard for them to follow tracks because of all the fallen leaves and snow melting. They did find one den enterance but it did not appear to be in use. They marked it and we are going to keep our eyes open for any other activity. The guys might also check again in a week or so.

Wednesday, March 12, 2008

Spring is almost here!

Nature is telling us spring is right around the corner. The bulbs are pushing up, the woodpeckers are hard at work, and other critters are coming out of their winter homes. It's normal for us to see deer going through our yard usually 6-12 at a time. We have also noticed lots of geese making their way back north. In the morning you can hear them in the house even with the windows closed. I took the girls for walk down by the river on Monday and we saw at least 40 geese there.

Then that night when Michael pulled into our drive way he saw a red fox in our yard. I was excited to hear that! Hopefully I'll be able to see him soon. When Michael was telling me about the fox while I made dinner he looked out the window to show me where the fox was and right then we saw a coyote walking through our front yard with a deer leg! He was only 4 ft from our front door as he cut through our yard and then went down in the ravine behind our house. This evening Michael and one our of neighbors are going to go down in the ravine to see if they can find the den. Hopefully we can trap the coyote(s) before some pet or child gets hurt.

So spring is just around the bend here in SW Michigan and we can't wait for it!

Wednesday, March 5, 2008

Guardian Angels

Margaret has more then a guardian angel looking out for her. She has guardian puppies too. Here is a picture of Roxy with Margaret. Roxy is more protective of her then Oscar is. I guess Oscar is Addie's dog and Roxy is Margaret's dog. Or at least that is what the dogs have decided. Too cute...


We are all doing good but keeping busy. I've been busy sewing diapers and trying to keep up with the girls. Work is going good for Michael and keeping him busy (but not to busy).

Monday, March 3, 2008

Margaret's Growing

This weekend was tough for me. Margaret has been growing so much lately that she has outgrown her 0-3 month clothes and all her newborn diapers. The tough part was pulling her clothes out of her room knowing that she will never be a tiny baby again. We put her in 3-6 month sleeper pjs and they fit her great. She is so long that she can actually fill them out length wise. With all this growing her diapers don't fit either! I did have a few of the next size up ready so I'm doing laundry once a day until I can get some more sewn. Speaking of which, I should probably get sewing while sleeping beauty sleeps and Addie is busy playing.