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February 25, 2010

It’s been a while since the last update.  A long while.  We’re doing well.  Life continues to be an adventure.  Here is a sample recent week and a half in the life of Callie:

Monday, February 1

                For the past several months, the pad of Callie’s right middle finger had, from time to time, become very enlarged and misshapen. It had happened a few times since coming home from the hospital but had always resolved itself after a few days. The lump would go down and the finger would look more normal.  This time, it had been large and misshapen for a matter of weeks and didn’t seem to be getting better. We were not overly concerned because it had happened before, and because this is the same finger that had been injured during one of her early surgeries in the NICU.  But since the situation didn’t seem to be resolving itself this time, we thought it was time to have it looked at.

So on February 1 we added yet another specialist to Callie’s list of doctors – a hand surgeon. He took a good look at the lump on Callie’s finger but really didn’t know what it was. An x-ray showed that it looked independent of the bone, so he thought maybe it was just a cyst of some sort. The doctor wanted to do some research to see what he could come up with so he sent us home without a clear picture of what it was and what we would do, but told us he would call within the next week.

Wednesday, February 3

                Callie falls down, lands on her finger, and completely changes the look of the growth.  Gross.

Thursday, February 4

                We take a trip back to the hand surgeon so he can see what Callie has done by falling on it. The cyst is more pronounced and he decides it will be best to have surgery to remove it sooner than later. A surgery date is set for Thursday, February 11. He also wants to see us on Monday to get the final plan for surgery.

Sunday, February 7

                Callie’s fingertip gets larger and larger on Friday and Saturday. By Sunday it is very misshapen and kind of gross to look at. Callie, being a typical two year old (that is the only way I can justify this) gets bored of her toys and starts to chew on her finger. Wouldn’t you know, she bites a hole in the puffy cyst-filled fingertip. Gross! She removes it from her mouth and a white substance starts oozing from the finger. Nice. She isn’t bothered by the draining cyst, and with the help of my mom (an RN), we clean the finger and wrap it up. Callie thinks she is something else with a finger all bandaged.

Monday, February 8

                Yet another trip to the hand surgeon with a finger that once again looks completely different from the previous visits. The nurses are humored that my child bit it and the doctor is impressed with how much the size of the fingertip has decreased. He doesn’t know if surgery will be necessary. We are sent home with instructions to keep it wrapped and come back on Wednesday.

Tuesday, February 9

                After being wrapped up for a while, the finger looks pretty goopy so we decide to air it out as she sleeps to see what happens.

Wednesday, February 10

                Callie wakes up with a scabby but otherwise normal looking finger. The doctor takes another x-ray and it has significantly changed from the last one. The cyst is all but gone and there is nothing left to be removed in surgery. There are a few other places in the finger that look slightly abnormal but they would be difficult to remove so surgery is cancelled.

Way to go Callie, the nineteen pound two year old who does her own home surgery.

We went back to the hand surgeon again on February 17 and he was pleased with how everything looks. It seems Callie really did take care of this one on her own. He told us just to call if it ever acts up again, but for now we don’t have to come back anymore.

January 2, 2010

We had a great Christmas and a wonderful beginning to 2010. Our Christmas was spent at home with a lovely blizzard raging outside. We had a little over 17 inches of snow fall in three days. I was very glad we didn’t have any travel plans for Christmas. Our New Year’s Day was spent with family and watching football. We have been indoors a lot lately because it has been really cold outside. The low last night was -33 and as I type this it is -11. Wyatt wants nothing more than to play outside in the snow but it is just too cold for that.

Callie is doing well. The past month we have had a couple of visits to Minneapolis and this Thursday we will head back there for a visit with her pulmonologist. Callie was seen at the Craniofacial Clinic the beginning of December. She had another 3D CT scan of her head that showed no major changes. Most of her sutures in her skull have closed now. The doctors don’t expect the asymmetrical features of her face to get any better. And hopefully they won’t get any worse, either. Right now there is nothing that can be done so we will just continue going down for appointments once a year.

Right before Christmas, Callie had her NICU follow-up visit. She was given a series of tests by an occupational therapist that saw her when she was in the NICU. She did much better with the tests than I was expecting. She is still behind in all areas of development but she has made a lot of progress in a year. She is most behind in her gross motor skills and expressive language – neither of which was a surprise to us. She has only been walking for about a month and she doesn’t try very hard to talk and communicate consistently. I feel like one day it will just click for Callie and she will catch up. But for now we continue to wait.

The doctor that saw Callie was very pleased with her progress. They understand that the tests are for “normal” children and can only test so much. A lot of the test involves having the child pick out photos of various things.  That’s great, but it doesn’t factor in the fact that you can hand Callie a stethoscope and she knows where to put it and she also knows how to work her feeding pump. Granted, she hasn’t a clue what a picture of a bottle looks like, but she could have picked out a photo of a nebulizer machine!

We realize that Callie is special and her own little person. She might be behind according to standardized tests but we see a little girl who is making progress daily. Now that Callie is walking it is fun to just follow her and see what she does and where she goes.

From a medical standpoint, Callie is doing well. She hasn’t been sick this winter which is huge. Her oxygen needs at night continue to be lower so I am curious as to what the pulmonologist will tell us this week. Feedings are going much better. She is not vomiting nearly as much as she was. We still aren’t packing on the pounds, though. We weighed her today and she is only 18.4 pounds. It seems we have been in the 17-18 pound range forever. I would love it if she could get big enough so we could turn her car seat around. Callie hates facing the back of the car. She also hates it when we stop and someone pulls up behind us. Do you know how hard it is to prevent that? I am not really sure how to get her over her fear of looking at other cars.

 

November 3, 2009

Wow. I didn’t realize it had been so long since my last update.

Our house is now officially shut down for winter. This lovely H1N1 stuff is keeping us indoors. Callie just got vaccinated for seasonal flu last week and will hopefully get the H1N1 vaccine this week. It has been a hassle to try to get those shots, though. Because what might go wrong if Callie got sick, we are trying to take as many precautions as possible. Basically, Callie goes nowhere - except for an adventure to the grandparents house. We are even cancelling doctors appointments because it is too risky to take Callie into the clinics. Wyatt and I are getting out as little as possible so we don’t bring germs back into the house. Jason still goes to work but he is addicted to hand sanitizer and changes clothes as soon as he comes home.  It’s going to be long winter.

With all we seem to be doing to keep Callie healthy, we realized a few weeks ago that germs can still get into our house. Callie got the sniffles and very politely passed them on to Wyatt, me and Jason. The boys had it worse and had some lung involvement but thankfully I didn’t get too sick and neither did Callie. We did have to go back to suctioning her nose some and turn her oxygen up a little but she handled it really well and her lungs stayed clear.  But after a few weeks of fighting that, she is back to 100%.

In the last update I wrote about the top part of Callie so this time I will move into the middle part of her still tiny body.

Callie’s last visit with the cardiologist went really well. Her echo looked better than it ever had. Her device that closed the ASD (hole in her heart) is working very nicely. Her heart has almost returned to its correct (normal) size and all of the pressures that were increased when the hole was present, have decreased significantly. The cardiologist was comfortable with Callie being off oxygen during the day and just on at night.

Callie’s lungs are continuing to improve. She still gets nebulizer treatments every day but the fact that she can be off oxygen during the day is HUGE. She hasn’t had any issues being oxygen free. She does still get oxygen at night – 1/16 of a liter. She does not like having the cannula back in her nose at night but she is pretty good about leaving it in. Although, as soon as she wakes up in the morning, it is the first thing she removes. Callie will see her pulmonologist again at the end of this year/beginning of next year. I don’t know if he will recommend trying her off oxygen at night or just leave it alone for a while longer.

Callie’s GI system is still the big puzzle. Callie is proportional height to weight but her numbers are those of your average 9 month old, and she still vomits at least once every day or two.  In the past few weeks we have begun working with a different nutritionist and we are in the process of seeing what Callie will tolerate food wise. She has always been on elemental (read: highly expensive) formulas and we are now brainstorming as to why she may or may not need such specialized formulas. I have never been impressed with her growth on formula so Jason and I are starting to blend some “normal” people food and feed it through her G-tube. We have been told we still need to use formula as a base but introducing food is fine. I guess I don’t have a problem with that because to blend food sufficiently to run through her g-tube you have to use quite a bit of liquid. My favorite thing we have fed her so far is food from our “southern” meal – macaroni and cheese, black eyed peas and fried chicken (fried in bacon grease). We didn’t give her much but she tolerated it well and even licked some off the syringe. And there had to be some lovely calories in that. As far as formula goes, there are too many to choose from. We tried pediasure for a while but I can only handle artificially flavored vanilla and strawberry vomit for so long. It is nasty smelling going in and even worse coming back up. I am hoping we can find something that is unflavored because I really don’t want to have strawberry and vanilla aversions the rest of my life.

** side note: During the pediasure experiment I went to the dentist to have my teeth cleaned. She was buffing my teeth with that lovely gritty stuff and the flavor was just not pleasant. I asked her what flavor it was and she responded, “cinnamon.” I told her it tasted a lot like vanilla. She looked and said, “oh it is vanilla.” Of all the available flavors she had chosen artificially flavored vanilla after I had been spending my days cleaning vanilla puke. Lovely. Bubble gum flavor would have been better than that stuff.

Anyway, we have ordered some different formulas to try so our next few weeks or months are going to to be spent seeing how Callie will tolerate and digest the formulas. Hopefully we will find a nonflavored formula that she does well with that we can use in addition to real food. And maybe, just maybe, by her third birthday she won’t have to still be riding backwards in her car seat.

 

October 9, 2009

Well, I think winter is upon us. So much for fall. We had our first snowfall tonight. Nothing accumulated but there was definitely white stuff falling from the sky. Wyatt thought it was terrific and had great plans of having a snowball fight with his dad. I think they had to settle for playing baseball in the snow.

Now that the cold weather is here, Wyatt, Callie and I are pretty much staying put in our house. Most days are good. But days like today make me wish we could just get out and go somewhere. Callie had little spitups throughout the day and Wyatt was not the most compliant child. It was just a rough day – and I am glad it is almost bedtime.

Since I haven’t written in much detail about Callie lately, I am going to start at the top of her little head and over the next couple of entries try to cover all of her systems. So tonight, I will start at the head. Callie’s little skull is still misshapen but I am not sure it is as bad as is used to be. We need to schedule a follow-up with the craniofacial clinic in Minneapolis but I haven’t had a chance to do that yet. While we wait for Callie to grow and get stronger and find out if she will need surgery at some point, we have brought in a cranio-sacral integrative medicine person to work with Callie. I really don’t know what her official title is or how to describe with words what she does, and I don’t know how much it is helping. But I do know it is not hurting and Callie loves it. I guess it is along the same lines as having chiropractic work done to help the body operate more efficiently. The lady uses pressure points and energy to work in areas of Callie that are weak (like in her head and GI system). She has amazed me and our nurses at how she can recognize weak areas and make them stronger. Callie loves when she comes. Callie is not a snuggly child and does not like to be held down or really even held for that matter. This person holds Callie for an hour and usually puts her completely asleep while she works on her. I give her a hard time about being able to snuggle for an entire hour when I am lucky to get a full minute. So once a month, Callie gets this service.

The past few days Callie has had a runny nose. This is amazing to me since we are just now entering the cold season and she hasn’t even been anywhere.  Right now it is still clear and not in her lungs. I don’t know if it is the beginning of something or just the change in weather.

Callie is still not a fan of eating. She tries to bite chips and cereal but if a piece gets too far back in her mouth, she gags and vomits. She has also backed off in her interest in drinking, though today she was trying to drink out of the bathtub faucet.  She will put anything other than food in her mouth. She doesn’t seem to mind pieces of waxy crayon stuck to her teeth. And cars and paper and pens are great to chew on.

Callie isn’t saying much. She is pretty fluent in signing all done, more, please, thank you, stop, help, want, eat, bubbles and waving and blowing kisses. She tries to say eat but it comes out as “ea” and she can say “li” for light. She REFUSES to even attempt mommy and smiles coyly when you try to get her to say it. She has learned to say “papa” and thinks that is pretty fun to say. Communication is still a struggle at times. She will look at us and repeatedly sign “want” but we have no clue as to what she wants. And there are times she is just plain stubborn and refuses to sign anything. There are also the times when she is tired of sitting in her booster seat while she eats and she looks at me and signs “want bubbles please.” So we continue to work with her knowing that at some point (probably when she decides) she will sign more or even talk.

 

September 28, 2009

We are still here. Well, actually we were gone for a while but now we are back.

In a moment of brilliance, or insanity, or brilliant insanity, we decided to take Callie on her first ”vacation.” Before the flu/RSV season is in full force, we decided to take a trip to see grandparents, great-grandparents,  and aunts and uncles – some we hadn’t seen in a while and some who had never met Callie before. The vast majority of these relatives live in Alabama, so the first thought would be to hop on a plane, fly down and visit and then fly back. Well, a plane would require Callie to be in close proximity to who knows what kinds of illnesses, so that wouldn’t work.  So what do you do when  you can’t fly 1300 miles? You drive it – with a 4 year old, a 22 month old, grandparents that already live in town and a mommy and daddy. 1300 miles. One way. 25 hours. In a car.

The trip went surprisingly well. Before we made it the one mile out of North Dakota into Minnesota, Callie had tugged on her car seat straps and signed “all done” but thankfully we were able to convince her that we had “just a little bit farther to go.”  Wyatt did incredibly the entire trip. He never once complained and was thrilled to be able to watch movies. We left late into the evening with hopes of driving throughout the night and that plan paid off. Wyatt fell asleep at 9PM and slept until 7 the next morning. (Except from 4-4:30AM when he had A LOT to tell us and was thrilled to see a shooting star). Callie wasn’t as happy to be sleeping in her car seat. At 1AM we had a find a Super Walmart to buy some Tylenol to help her calm down. It was a good stop, though. She got to experience fog the first time and never could figure out why she couldn’t grab any in her hands.  We were able to make the trip only stopping to stretch and eat so we made pretty good time.

Alabama was a blast. We pretty  much only saw family due to the high numbers of H1N1 and other illnesses going around. Neither child seemed to mind the stifling heat and extremely high humidity though Jason and I found it almost unbearable.  The kids were able to zip line, play with marshmallow guns, go for hay rides, pick veggies out of the garden and run free for a week. It was a great time.

The trip back wasn’t too eventful and now we are back in Fargo enjoying the cooler weather (it is supposed to be 34 tonight) and getting back into therapies all throughout the week.

Callie is thriving and doing well . I have a lot to share but I am going to break it up into smaller posts because I don’t have a lot of free time these days just to sit down and write.  

 

August 2, 2009

My lack of blogging means 1. Callie is doing really well and 2. Callie is keeping me very busy.

The girl is quickly turning into a nosy toddler and she is keeping us on our toes. She has now mastered crawling and realizes that the house is hers to roam at will. She not only goes room to room, but on the 14th of July she figured out stairs.  Well, at least the going up part. Coming down we are still working on. But if there is not a baby gate up, she will go up the stairs – usually with her brother cheering her on.

Because of Callie’s active lifestyle, we have been forced to make some changes with her feedings. When Callie wants to go, she goes. And if her feeding doesn’t come with her, then so be it. After a few weeks of finding a feeding pump with no child attached to the other end, I realized something had to change. Random piles of artificially flavored vanilla formula throughout the house were just too much for me.  We have increased the rate that Callie gets fed so she is attached to the pump for shorter periods of time. In fact, we try to get Callie to sit at the table while she “eats” but it takes a lot to keep her occupied for just 10-15 minutes.  We are still working out all the ins and outs of her new feedings, but for the most she is doing well. Our latest feeding challenge, though, is behavioral vomiting. I am not a fan of it. Callie has realized that she can get attention by vomiting. If she gets hurt, mad, frustrated or irritated, she will dry heave until she vomits. It is one of the most irritating things I have ever dealt with. We often know when it is coming and we are helpless to stop it. It is also very counterproductive since Callie is still not gaining much weight. On July 1 she was 17 pounds 15.5 ounces and today she is 18 pounds 1 ounce. We have finally crossed into the 18 pound range but she is just hanging out there for the time being.

July 4, 2009

Two years and one day ago we found out about the girls. I still remember the feeling the day we found out, and the fog I was in July 4, 2007. This was a much better year. The kids had both sets of grandparents in town as well as an aunt and uncle. We had a terrific day.  Callie and Wyatt slept late (which was a blessing for me) while Jason and his brother and sister-in-law participated in a 10K. This afternoon and evening the entire family was together. Wyatt was able to play outside in the sprinkler and Callie looked cute in her swimsuit though she wasn’t fond of the cool water. She had a wonderful day, though. She crawled up a flight of stairs completely unassisted – for the first time ever. (We will have to see if she repeats this for her physical therapist – they have been working on it recently).  It was terrific to watch her interact with everyone. Her personality is starting to show more and more each day. She is inquisitive, funny, charming, and I personally think she is one smart little girl. She is in the phase now where she likes to figure out how things work – how to get food on a fork, how to put pegs in holes, what happens when you hit yourself really hard on the head with a toy car (you get really, really sad, stick your bottom lip out and cry really big crocodile tears). It seems like we often move a snail’s pace with Callie but we are finally seeing signs that we will get there one day.

Callie and her Grandpops July 4, 2009

 

June 25, 2009

Things are going well at the Medders household. I will give you a quick (or not so quick) rundown of Callie’s medical issues then I will get to the fun stuff.

Callie is doing well. The past month we have seen a few different doctors and have received good reports. Callie had a follow-up hearing test and eye exam. Both of those went well and there are no concerns. Since I am nearsighted and preemies are often nearsighted, the chances of Callie needing glasses at some point are pretty good but she doesn’t need them now. (Which I was relieved about since there is no way she would ever keep them on her face.These days she thinks her oxygen is optional).

Callie’s visit at the Developmental Clinic was good, just very, very long. We left the house at 8:30 AM and returned at 2:15 PM (and we only live 5 blocks from the hospital).  Wyatt went with us to the appointment, but thankfully, we had a nurse that day as well. Wyatt stayed busy with markers and  paper, snacks, cars, playdoh, books and anything else we could think of, while the rest of us met with various doctors and “hospital people” (nutritionist, social worker, etc).  The doctors were pleased with Callie’s progress since the last time we were there. She is physically stronger, though language skills are still lacking. She hasn’t gained much weight in the last few months but her weight and length are still proportional and she has a good amount of body fat. We did get permission to start transitioning to another formula – one more formulated for older children. It will hopefully be the last time we have to switch formulas because this new formula is good through age 10 (and Callie does not have my approval to need the feeding tube that long). We have slowly been trying to introduce the new formula and from a vomiting standpoint, she is doing really well with tolerating it. We are having some issues with how it is coming out on the other end so for a few days we are going back to her old formula to see if that issue resolves. Then we will try again. We are increasing the number of calories she gets so she will hopefully start gaining weight again.

Even though Callie is still small, she is slowly moving in the right direction. At Callie’s two year appointment, if she hasn’t reached the growth curve, we will be referred to an endocrinologist. He will then look into if there is a reason Callie is small and has had a very difficult time gaining weight and growing in length.  Growth hormones have been mentioned so I need to start reading up on them. I am still undecided as far as that goes.

We met the orthotist for the first time at this appointment and Callie LOVED him. She thought he was funny and everything he did was funny. This was pretty surprising since this was the last appointment of the day and she had not had a nap. I really liked him as well and was impressed with his knowledge of Callie. He had studied before he met us and that meant a lot to me. He wants to hold off on foot/leg braces for now. He is happy that she is working on crawling and wants her to focus on that. In four months we will see him again and if she is more stable on her feet, we might do braces then. He doesn’t want to prematurely put something on that she might hate which would then keep her from weight-bearing at all. He wants us to focus on crawling for now.

Which brings us to the fun stuff. I am finally starting to see an end in sight that Callie will outgrow the infant phase. Each day Callie is becoming more “toddler like” even though she is not yet toddling. Her crawling has really taken off in the past week. She started with a really strange “bunny hop” crawl but she is getting the hang of how to move her legs now. And she is starting to learn that she can crawl just to explore. She usually has to be motivated by a toy to crawl but now she is starting to just go. If she gets tired of her therapists, she crawls away from them and finds something else to do. (This is not condoned but it is pretty funny when she does it). Callie is really being hindered by her tubes, though. The times that she is off oxygen are nice but that feeding pump is often attached. I am trying to get a small enough backpack that she could wear her feeding pump but it has to be pretty light for her to be able to manage.  Callie’s latest trick is that she really, really wants to pull up to standing. She will get into tall kneeling (on her knees, tushy off her feet) but she just can’t quite get to the standing position without help. I don’t think it will be long, though.

Callie’s feeding and language skills are still lacking. She understands much more than she can communicate. The other night we were eating dinner, and at the advice of a therapist, we were eating with our mouth open so Callie could see what the tongue does when you are chewing. Well, Callie put a piece of food in her mouth, opened wide and started “talking” to us. I had no idea what she was doing but Jason realized she was mimicking us. Not exactly what we were doing, but pretty clever (and funny).

We are enjoying our summer weather here in Fargo. As long as she doesn’t have to play in the grass, Callie loves the outdoors. She swings for hours on end and likes to watch Wyatt. She has also met some neighborhood dogs and thinks they are the best thing. This weekend we are going to try our hand at camping with both kids. We love camping and really enjoyed it with Wyatt so we will see how it goes with Callie. Granted, there is a lot more to pack – including lots of oxygen. Hopefully Callie will think it is great and it won’t throw her schedule off much. I think it will be fun.

Well, now I need to get back to packing. There is so much to remember to take, even though we are only gone for two days. Thanks for still checking on us. When we get back I will try to update the pictures.

 

May 30, 2009

Oh, the difference one year makes. Today marks the one year anniversary of bringing Callie home from the hospital. One year ago we left Minneapolis with a tiny, frail little girl. Today we celebrate with a still tiny but feisty, not so frail, wanna-be toddler. It has been a year of ups and downs. And we still live with ups and downs but through it all, Callie continues to fight and is not letting anything stop her.

This time last year, Callie was incredibly dependent on supplemental oxygen. When off it for only a few seconds, her oxygen concentration would quickly dip into the 60’s. Today, thanks to a bit of growth and ASD-closure surgery, she is able to play a couple of hours at a time without oxygen and maintain sats of 94-96%.

My days were filled with giving feedings every two hours and medicine multiple times a day. Today I give medicine only in the morning and in the evening and her feedings are a LOT easier to manage.

When Callie came home after 209 days in the hospital, holding her head up and smiling on occasion were the only things she knew how to do. Today she can laugh and play games with her brother, unplug her feeding tube ports and splash in all the milk that pours onto the floor (I am not a huge fan of this pastime), get into sitting position from lying down, get (almost) into four point from sitting position and if there is an incredibly interesting thing in front of her (like a white drier sheet on off-white carpet – who knew that could be so entertaining?), she can be motivated enough to actually try to crawl towards it.

So except for our life-flight back to Minneapolis last August (and the resulting few-week stay there), it has been a great year with Callie and we are excited about all the progress she will make this next year. (Hopefully I will be able to write next year that she is talking and walking).

Thank you to everyone who still reads about us, prays for us, and supports us financially. We are incredibly thankful for each one of you.

 

 

 

 

Callie in May 2008, and May 2009

 

May 26, 2009

We just returned from a short, yet really good trip to Minneapolis. Due to lovely Memorial Day traffic, we didn’t arrive as early as we would have liked, but while I put Callie down for bed last night, Wyatt was able to go swimming at the hotel – one of the most exciting activities a four year old can participate in. This morning after Callie’s appointment with her pulmonologist, Wyatt was again able to go swimming. So that was the highlight of the trip for the boy (he is not impressed with how long it takes to get to Minneapolis and back, though).

Callie’s appointment went well. The doctor thought she looked good and that her lungs sounded good. He has given us permission to take her off oxygen for 2-3 hours/day. (I don’t think I have written that Callie has been weaned to a little below a ¼ liter on her oxygen). He also wants us to get her outside and “do things.” He has given us permission to take her to church (and sit in the very back with her) and to go to restaurants during the off-peak hours. All of this is exciting but makes us very nervous as well. He did tell us this is just for the summer months. When the cold/flu season starts back, we will be inside and secluding ourselves for at least one more winter.

There were some adjustments to Callie’s meds today. We only have to give her a nebulizer treatment one time a day (down from twice daily) and her diuretic every other day (down from daily).

I asked the doctor his feelings on the asymmetry of her head and he didn’t think it looked any better or any worse. So for now we continue watching it and decide later whether it needs to be addressed.

Another topic we discussed was Callie’s growth. If you chart Callie’s length to weight, she is right on proportionally. In other words, she is not too chubby for her height. If you chart her length and weight on a growth chart, though, it shows she is significantly behind. She was making good progress but it seems now she has reached a plateau. I could manipulate her feedings in order to increase her weight gain, but since there is nothing I can do to make my child grow longer, I would just have a chubby child. It has been suggested that Callie be evaluated by an endocrinologist to determine if there is a cause why she is so small. The doctor doesn’t think anything will be found. He thinks it may just be a result of Callie’s life and everything she has been through since birth (and probably genetics since I have never once been told “My, Kelli, you sure are tall.”) It has been mentioned that she might need growth hormones as she gets older. So in the next few weeks we will see about bringing on board another specialist for Callie.

Oh, and speaking of specialists, Callie is finally starting to bear more weight on her feet and even become more interested in possibly, maybe, perhaps walking around furniture. With the increased weightbearing, both her physical therapist and occupational therapist mentioned that they believe she will need braces on her feet. She has “lower-normal” muscle tone and they feel the braces will give her the stability she needs. In the overall scheme of things this is not a big deal at all, but I was a little discouraged when I heard this. It was something I never thought about. Neither of them think she will need the braces forever but they think it will just help her as she starts learning to walk. So there is another specialist we will meet in the next couple of weeks.

Callie still is not a huge fan of eating. She is tasting more food (fancy way of saying she puts something in her mouth then spits it out lest she actually have to swallow something). We are still feeding her in her g-tube (which goes into her stomach). We have made a lot of progress and around 70% of her milk per day goes into the stomach. At night we give the last bit through the j-tube (into her intestine). The doctor today encouraged us to keep working on getting to all g-tube feedings and then try to introduce some bolus feedings. We will keep taking it slow and hopefully Callie will keep tolerating it.

Callie now has seven teeth (she is missing her top left lateral incisor) but she is getting some molars. So we will soon see what she thinks of her new teeth.

Last week Callie had her 18 months checkup which went well. The doctor informed me that although Callie is not “toddling” she is still a toddler. She was pleased with Callie’s progress and I was able to run some questions by her (such as “Why are boys so much easier than girls?”) Callie is the queen of staring you down if you reprimand her and then cutting her eyes to try to get you to break and then smirking, if all else fails. It is the craziest thing to see a tiny girl do this.

My last thought for now, Callie and Wyatt’s grandparents came to town this last weekend and built them a wonderful playset. So now we can get Callie outside and she can play freely on the slide and swings and not have to worry about germs. We have found out that Callie loves to swing and sit up like a big girl in the swing. She thinks sliding is pretty fun, as well, as long as someone is holding onto her.  So as the weather warms up, we plan to spend a lot of time outdoors.

May 12, 2009

In the past week and a half, I have returned from paradise (leaving the swine flu in Mexico), made signs and t-shirts and cheered for Jason as he ran 26.2 miles, and celebrated with a belated party for our four year old. And now I will attempt to settle back into a routine, or maybe even make a up a new, improved routine while also dealing with the “not-so-fun-adult-stuff” (such as the water we discovered leaking in through my child’s ceiling fan when it rained today). I am ready to go back to Mexico.

Mexico was incredible. Jason and I had a great time just being together. I didn’t have to think about anything while I was gone and it was delightful. We did some sightseeing and some rappelling and some zip-lining through the mountains but mainly we did a whole bunch of nothing.  We sat by the pool, ate by the pool, napped by the pool and floated in the lazy river when we got too hot. Oh, I can’t even begin to describe how wonderful it was. And the food was amazing. I had salsa every day. And I am still craving more salsa – and they had the best limes.  And for those of you who are/were worried about our health, we were nowhere near the swine flu and really weren’t even concerned about it.

Callie and Wyatt did wonderfully while we were gone. The grandparents did a great job taking care of them. I do think the little miss is a little concerned that we are going to go off and leave her again for a really long time. She has been pretty protective of her parents lately and quite emotional when she can’t see us. Hopefully she will soon realize we aren’t going away again.

The girl is still medically stable. Her oxygen needs are still coming down. She is at ¼ of a liter most of the time now. She is tired of her oxygen cannula and removes it many times throughout the day. She then avoids eye contact because she knows she is supposed to keep it on. We are once again trying g-tube feedings (into the stomach) instead of j-tube feedings (into the intestine). We can be a lot more flexible with the g-feedings and we had not tried it in a while so we thought it would be worth a shot. So far, Callie has done surprisingly well with them. She has spit up a few times but nothing like the projectile vomit she was doing before. We are slowly increasing the rate of the feedings to see how quickly she can tolerate being fed. Our goal would be to get back to a few bolus feeds during the day so she is not always hooked up to her feeding pump.

Callie’s progress with gross motor skills is still very slow. She is getting stronger and is closer to crawling. We are still working with her to get into sitting position and from sitting to crawling position. She gets tired of sitting in one place but isn’t quite motivated enough to do anything about it.

Callie is still getting occupational therapy but she really hasn’t been a stellar student lately. Her latest game consists of throwing all the toys she can get her hands on and she refuses to put toys “in” anything. She’s great at taking them out but will never put them in. It is very much a battle of the wills and right now Callie seems to be winning. I have yet to come up with a creative way to trick, I mean, inspire her to obey the OT and play with her toys correctly.

So that is an update about us. Callie will be seeing two doctors at the end of the month so we will see what they are thinking about her progress.

May 4, 2009

 

We had a MARVELOUS vacation!  No worries with the swine flu, either, despite what folks on CNN would lead you to believe.  Things are busy here at home (of course) so we'll try to give a more in-depth update in the coming days.  For now, though, know that the trip was GREAT for both of us, and that the kids and the grandparents all had a good time together as well.

 

April 23, 2009

I am leaving on a jet plane.

Early last year, when we were having constant trials with Callie and I was living the NICU life, there were periods of time when I had to consciously make the effort to remember that at some point I would go back to a “normal” way of life. I didn’t know when or how and I didn’t know if that would be with or without Callie here on earth, but I knew that we would make it through. I had to remind myself that I would again grocery shop, fix meals (also called “prepare” meals for you non-southerners), go shopping, decide what Wyatt would wear for the day, etc. I also had to remind myself that one day again I would be happy, less exhausted, and less focused on so many life/death situations.  

It was also during this time I asked Jason if we could go on a trip at some point when life was back to “normal.” He agreed and now that Callie is the most stable she has ever been, we are going on a trip.

So early tomorrow morning, Jason and I are leaving Fargo, and heading for another country. Thanks to a time-share donation from my parents and some long-saved frequent flyer miles, we get to spend a week in sunny Mexico! For the week we are gone, Jason’s parents will be taking care of Wyatt and Callie. We will still have nurses come a few days to help with Callie.

Jason and I plan to do a whole bunch of nothing and enjoy ourselves immensely.  Wyatt is planning on having a blast with is grandparents. And Callie doesn’t have a clue about what is going on, but I am sure she will continue being her feisty self in our absence.

Her latest tricks include rolling to where she wants to go and pulling her feeding bag with her. She has also found it great fun to pull all of the slack in her oxygen tubing to her. So the other day when I saw the tubing taut and two feet off the floor, I was sure Wyatt was up to something. He simply informed me it was Callie and he was right. She pulled all the tubing as tight as she could and then sat upon rolls and rolls of tubing and chewed on part of it. She was so proud of her accomplishments.  Here's what it looked like:

So, it will be a while before I write again (not that that is anything new). But while we are away we would appreciate prayers for a safe trip and fun just being together again, strength and patience for the grandparents, obedience for the boy, and medical stability for the girl.

**Oh, I should probably mention that keeping the girl is not an easy task. For this trip she comes with her own 17-typed-page “How To” guide. It is some great reading, if I do say so myself!

April 12, 2009

Happy Easter! We had a great day at church yesterday and then an afternoon spent with grandparents. Wyatt enjoyed Easter egg hunting and Callie just enjoyed watching him. She was a great girl all day and I think she really enjoyed her first Easter at home. She was awake at 7 yesterday, proclaiming as loudly as possible “He is risen! He is risen!” Actually it sounded more like a very forceful “Gah, Geh, Gah, Geh” but man, she really had a lot to say first thing in the morning.

Often, Callie’s progress is so painfully slow. Nurses who don’t see her often think she changes each week. But I look at pictures from October and think she looks exactly the same. Granted, she can do quite a few more things now but overall, progress feels so slow. Anyway, we were comparing some pictures this weekend and if you look back 365 days, Callie has grown in amazing ways. She was a much more fun participant this Easter weekend – and she is much healthier than she was last year. God is good!

Easter 2009 (left) Easter 2008 (right)

 

April 1, 2009

Well, we are returning to a little bit more “normal” state of life here in Fargo. The river is slowly coming down even though we still remain in the major flood stage. The past two days we got a ridiculous amount of snow so the thought is when all this new stuff melts we might be dealing with flood issues again. Lovely.

With the help of Jason wading through flooded/frozen fields last Sunday, my parents were able to get the leak in their basement under control.  And as of today, they are no longer snowed/flooded in.

We are finally starting to unplug our drains downstairs, which means I can wash clothes again. And a lot of clothes to wash, have I. We had a nurse yesterday so Wyatt and I were able to get outside and play in the snow. You know you have a lot of snow when you can make a pretty fun sledding hill in your front yard – which is usually nice and flat. We had a really good time with that.

Callie still has the sniffles but it seems to be getting better. We had respite care tonight, so Wyatt, Jason and I were able to spend some time together while Callie got one on one attention.

Thank you for praying us through this flood.

March 28, 2009

 

It was a relatively calm night in the Fargo-Moorhead area. When I posted yesterday Jason was sandbagging a leak in a neighborhood north of us and then he stopped to help reinforce the dike 1/2 block north of us. It was eerie seeing police cars and big trucks of dirt going by our house and not know what was going on. It was just a precautionary reinforcement so all is fine here.

 

My parents are doing well (given the circumstances). All they can do is wait. There is not much more they can do in the basement of their house but it doesn't seem to have taken on any more water since last night.

 

Callie has had a lot of nasal drainage the past few days. She is still satting fine but we are having to suction her nose quite a bit. Please pray she doesn't get any worse and quickly starts to get better.

 

I added another post that I meant to put up earlier yesterday but for some reason never did. There are now two posts for the 27th.

 

 

March 27, 2009

 

Just a quick update. Jason is 1/2 block north of us sandbagging as I type this. I do not know what is going on but Wyatt and I are praying.

 

My parents are in a mess. Their basement started leaking late this morning - mainly river water but they did get some sewer water in from a sink. They have currently moved everything out of the basement and are doing all they can. Their neighbors are in the same mess as they are - some more than others. Some of the houses a few doors down have water right in the backyard. To make things worse, due to the basement leaking, the city had to decide to cut water to their area tonight. So my parents will be without water until the waters recede (keep in mind the river has not even crested yet). So now it is up to my parents to decide how long they want to stay. The National Guard came by this morning and gave them instructions in case they needed to be rescued.

 

There are numerous prayer requests here so just pray however you are led.

 

March 27, 2009

 

We don’t own a television, but there are two times it would be really nice/helpful/useful to own one. 1. SEC football. 2. When your city and your parent’s city is flooding.

I am rather addicted to any online information I can receive. Jason and I are still doing well. Jason was actually at work today making preparations in case NDSU students need to be evacuated and also in case NDSU needs to take in evacuees. The boy, the girl and I are just trying to keep sane.  Sidenote: Callie started the morning with a MASSIVE blowout and since we are conserving water and choosing not to wash clothes until the flood is over, I was not the happiest mommy in the world. Anyway, the rest of day has gone better than the morning. We are still doing well water speaking. I keep checking our basement and so far we are completely dry. I am hearing an unusually large number of helicopters flying overhead so that is pretty eerie. So for now we continue to be fine.

I did check on my parents a few hours ago and it was a frantic conversation. Apparently, they have a leak in their basement floor. Whether it is Red River water or backup sewer water, I don’t know but please pray they can find the source and contain it. The river has yet to crest and once it does, it is expected to stay quite high on into the middle of next week. Jason and I are not able to get to them so there is nothing we can do to help.

Thanks for your prayers for our family and for the entire Fargo-Moorhead area.

March 26, 2009

Just in case you 1. Realize we live in Fargo and 2. Realize that Fargo is facing a major, historical flood, I thought I would let you know that we are fine. Our home is not (currently) in any imminent danger from the Red River, though we live just a few blocks from it. We have stocked up on water and oxygen for Callie and have tried to prepare our house for possible basement flooding.

The conditions are not so positive elsewhere in the city. We have been out sandbagging a few times and there are houses where the only thing keeping the house standing is a sandbag dike. It is pretty eerie to be only separated from the river by some sandbags and plastic. Please pray for the safety of everyone in Fargo and the surrounding area . We have seen many American Red Cross emergency vehicles and quite a few National Guardsman and military vehicles. It is quite intimidating.

So for the next few days we will be staying put. And I will try to update on how we are faring.

Oh, and I have learned I will not be quitting my day job to become a professional sandbagger. Those suckers are heavy (and I dropped my fair share). I did excel in sweeping snow off already placed bags in order to make the dike larger. Flood + snow = a crazy week in Fargo.

 

March 17, 2009

I am writing from Minneapolis where we are finishing out our business/medical/vacation trip. Jason has been working from the Cities for a few days now and Callie had a couple of doctors appointments today and Wyatt is away from home so for him it is a vacation, especially since hotels have pools. 

It has been a good trip. Callie’s appointments today went well. The pulmonologist was pleased with her progress. Even though we have been unsuccessful at weaning any lower than ½ liter, he still thinks Callie is moving in the right direction. Her work of breathing is so much less than what it was when we brought Callie home from the hospital. She is growing weight wise and length wise, which is key to her continued improvement. Callie’s echocardiogram looks much improved from her last one, which is great to hear. Her pulmonary hypertension is the lowest it has ever been and her heart function is improved. So for now we wait and try to be patient. With more time, the doctor is optimistic about Callie’s future with regards to her lung function.  

Callie’s appointment at the Feeding Clinic was fine. We learned a few more techniques that we can use to try to interest Callie in eating. And we have been given the go ahead to try cup drinking – both sippy cup and open cup. I am interested in seeing how she does with that. So far, she hasn’t tried anything but a little water lately so I am wondering how she will do with flavor. So while waiting for lungs to heal, we will try to encourage Callie to want to eat without pushing her too hard that she gets turned off from it. Basically, we will give Callie food to eat and if she wants to try it, great, if not, we will try again next meal. 

So that pretty much sums up our last few days. Oh, Callie weighs 17 pounds 11 ounces and is 26 inches long – still not on the charts, but getting close.  

** I don’t think I ever updated that Callie did end up with the family cold. While it stayed out of her lungs, we had to do a lot of nose suctioning and turn her oxygen up to ¾ liter but she maintained her saturations well with that, and now she is doing well. She is back to ½ liter and we haven’t had to suction in a few days. She is still quite the snorer at night but in all other ways, she seems to be back to her normal self.  

Well, I am off to finish my business/medical/vacation trip – pack the family to come back home.

 

March 8, 2009 

Hip-hip-hooray. Guess who has a tooth today?

So I cracked myself up with that thought at 10:45 last night but it is not nearly as funny now. But anyway, the little girl has her first tooth (partially). I felt it last night while trying to apply chapstick to her constantly-chapped lips. It is on the bottom. You will probably never see a picture of her tooth because she won’t let anyone look at it. So it goes with severe oral aversions.

The little girl either has every I’m-getting-a-tooth symptom known to mankind or she is has a cold. So far her oxygen saturation has been fine even though we have had to turn her oxygen up just a bit. Her nose is quite yucky so we are having to do quite a bit of suctioning. Her lungs sound clear, though, so that is good news.

Callie is still gaining weight a little too quickly. In 6 days she gained 11 ounces so we are backing off on her feeding schedule a little more. I just bought her some new clothes and at the rate she is growing she will be out of them in another week or two so we really need to get her to slow down some. It’s odd she’s now gaining so fast considering all the months we prayed and prayed she would gain weight.

The Medders family has decided it is time for spring. Even Wyatt will ask people if they are ready for spring and declare that he is. Well, a few days ago it was a balmy 35 degrees so we went for a family walk. Callie had a blast all cozy in her stroller. She “talked” nonstop for the first part of the walk. Wyatt had fun “skating” on the icy parts of the sidewalk. It was very refreshing to get outside and breathe some fresh air. We are hoping to be able to be outside much more this summer than we were last. Hopefully the little princess will love the outdoors like the rest of her family.

March 4, 2009

Callie has had a good week. We had a cardiology appointment Tuesday and it could not have gone better. Callie had an echocardiogram and it showed her heart is continuing to decrease in size (which is a good thing). There is also no sign of blood shunting across the device used to close her ASD. The device is still where it is supposed to be and it looks good. Her pressures that relate to the pulmonary hypertension are also lower than they have ever been. And now that we are 6 months post-op, Callie no longer has to take aspirin. It was an appointment of good news. Typically, Callie wouldn’t be seen again for another two years but since Callie is the smallest patient that this doctor has ever performed an ASD closure on, he would like to see her in another 6 months just to keep tracking her closely.

The same day of the appointment, Callie started physical therapy. She took to her therapist quickly and seemed to work really hard the entire time. She was either working hard or she has already figured out that if you grunt loudly, people think you are working hard. I am excited to learn new ways to work with Callie that will hopefully help with her gross motor skills.

After PT and a very short nap, Callie had speech. She did amazingly well. She chewed on a pickle and licked the juice off and she chewed and licked Gerber cheese puffs. She even put an entire one in her mouth and never gagged on it. It was the most promising session we have had in a long time. I think the girl knows there are better things than baby food and she isn’t going to give baby food the time of day anymore.  Unfortunately, if you are toothless I don’t think you can skip right to things that require chewing.

So that is our quick update. Jason and I are now over our colds but Wyatt has one. So we still need prayers that Callie won’t get sick. Wyatt got sick right after returning from his trip south so he and Callie haven’t been able to play together yet and it is driving him crazy. Please pray for a quick recovery for him.

 

February 28, 2009
Callie finally got her first….

Hairbow! (One that actually clips into real live hair, and doesn’t just depend on a dab of something sticky to keep it in place).  And for those of you who were thinking we have our first tooth, nope, still waiting on that. The doctor saw four teeth buds, so you take the normal time it takes to get teeth, add in Callie time, and I feel pretty confident she will have her first tooth by the time she is three!

Things are going well in the Medders household. The boy has been out of town for 10 days now, visiting family down south. He has had a great time playing outside and letting me know how “really hot” it is outside. He is not ready to come back; he thinks we all should just join him there. Hopefully he will enjoy being home once again.

I had great plans to thoroughly clean the house from top to bottom while he was away but I struggled with a cold and then a lovely sinus infection for the past week and a half. I am now feeling better but Jason is starting to feel under the weather. Thankfully, Callie still remains sickness free.

Callie had her 15 month appointment last week and the doctor was pleased with her progress. We changed a few meds around but other than that everything is pretty much the same. We did have to decrease Callie’s feedings some because she was gaining weight too quickly. For a couple of weeks she was gaining an ounce a day which is what a newborn should gain, not a one year old. The girl is now 16 pounds 12 ounces, so she is getting bigger.

Our biggest, hugest praise (redundant, I know but wait until you see what it is). Callie has been sleeping through the night for the past week! She doesn’t wake up to vomit. She actually only vomits maybe two or three times during the day. It is wonderful! I don’t know if it her new reflux medicine or her getting older or just the answer to many prayers but Jason and I are desperately praying it continues. For the first time in months, we feel rested in the morning and Callie is in a great mood in the morning. It is so wonderful. The little girl is opting out of long afternoon naps which I am not thrilled about, but I would much rather her sleep at night. So, thank you to everyone who has been praying for us.

So, that is our news for now. We will be making a trip to the Cities in a few weeks for Feeding Clinic and pulmonology. Callie will also be starting physical therapy two days a week which will hopefully help inspire her to want to crawl and in general, move around more.

February 14, 2009

We have not had the best week. Callie has continued spitting up/vomiting/retching many times a day. Today is was over fifteen times.  It is not formula she vomits, but it is thick boogery/mucousy/stomach-acidy junk (sounds lovely, huh?) Needless to say, my patience for constant puke is growing very, very thin. Callie is also not sleeping well at night (not that that is anything new) It, too, is just getting very old. Wyatt was sleeping through the night at 3 months and now after having Callie home for 8 months we still are as sleepless as ever. She doesn’t wake up to play – she just wakes up to throw up and if she gets choked, she gets really mad and it takes a while to settle her back down.  So right now, I am just feeling very worn. I have brainstormed until my brain hurts on what could be causing this and what we could do to change it, but I haven’t come up with anything that works for more than one night. She has an appointment with her pediatrician this week so maybe she will have some ideas.

Callie is still gaining weight – actually a little too well. For the past few weeks she has been gaining an ounce a day – which is what a newborn should gain. We have made some slight adjustments to her feeding to slow her down a little. We don’t need her to get too fat because that would make lung issues even more difficult. Callie hasn’t been able to be weaned on her oxygen in quite a while so that is frustrating as well.

Overall, I am just frustrated that progress is so slow. I will get over it, but this week has been really hard. I want to see that she is getting better and learning more and improving but I just don’t see that right now.

Prayers for patience and endurance (and sleep, if you want to throw that in there) would be great.

On the other hand, Wyatt has become quite the little theologian. This week he informed me that we needed to stop praising God. When I inquired as to why we should do that, he told me that he wanted to see what the rocks would do. (He had heard the Bible verse – Luke 19:40 – that states that if we do not praise God that rocks will cry out.) I did inform him that we were the ones made to do that, so we wouldn’t quite praising God just to hear the rocks do it.

Then, we were leaving our house the other night Wyatt commented on the moon. When we arrived at our destination he was pleasantly surprised that God had moved the moon so we could see it there, too. He then asked if we knew how God moved the moon. I didn’t know so he told me. Apparently, Wyatt thinks God used a forklift, a piece of paper and a bungee cord. He took the moon down with the forklift (not sure what the paper was for). He then moved it and hung it back up in the sky with the bungee cord. Not sure where that is scripturally, but at least the rocks are still silent.

So, there you have it.  Wyatt continues to be my comic relief.

 

February 7, 2009

A long awaited update (for those of you who still patiently check this blog).

Jason, Callie and I had an uneventful trip to Minneapolis. It was actually one of Callie’s better trips. She slept most of the way and then was content when she woke up. We arrived in the Cities in time to order wings and have a mini-Super Bowl party (with just the three of us). Callie thought she was the biggest girl getting to sit on the bed and watch television.  It was a nice relaxing evening.

Callie’s appointment went well, I suppose. Jason and I went into the appointment hoping for some answers. Was it possible Callie had increased pressure on her brain due to the fused suture, thus causing all of her projectile vomiting? The neurosurgeon didn’t have much to say. He did tell us she has two sutures that are fused but her brain looks normal (there is no increased pressure). He did think she has a slightly quizzical look on her face due to the fusion but it is not severe at this time. Basically he told us that even if we wanted it, he would not operate on Callie right now. She has other pressing issues (lungs and GI) and this surgery would set her back too much. It is possible, though, that as she grows, her facial features will become distorted to the point where intervention in the form of surgery will be necessary. So I am just kind of confused about where we sit now. The thought of waiting for Callie to grow and see how drastically her face distorts is unnerving. I also don’t quite understand how her brain will grow correctly with two fused sutures. In the coming weeks we will be meeting with some of our other doctors so I hope to ask more questions and get a more clear answer about Callie’s head.

January 29, 2009

I talked with craniofacial nurse practitioner today and she has already talked with the neurosurgeon who will be seeing us Monday. As of now, he knows Callie’s diagnosis but he doesn’t know for sure if surgery will be necessary or if she will be a candidate for surgery. I was told that he might know right after he examines her on Monday or he might need to consult with others to come up with the best plan.  I guess I am sharing these uncertainties just so y’all can be in prayer for us and the doctors. Up until now Callie’s brain has been the one huge thing that has been in her favor. She never had brain bleeds of any type and the nurses caring for her have commented that she is smart and knows what is going on. It is nervewracking to now be dealing with a head issue that has the potential to compromise her healthy brain. Please pray for the doctor that will be examining Callie on Monday. Pray that he will know what kind of treatment Callie needs. Pray for Jason and me as we listen to what the doctor says and as we try to ask pertinent questions. I have shared with a couple of people that one of the last things I want to hear is we are just going to have to wait and see what happens. I would really like a definite clear-cut answer as to what is happening with Callie’s head, how it is going to affect her, and if there is anything we need to do about.

January 28, 2009

 

Callie has an appointment with a neurosurgeon in Minneapolis on Monday, February 2. We have been told he will be the one making the decision on what treatment Callie needs.

 

January 27, 2009

Wow, multiple updates from me in the same week. It is like the old days.

Callie’s GJ-tube replacement went wonderfully well. The receptionist was accommodating in that the waiting room was full of people (germs) so she roomed us in a private waiting room. The people performing the procedure seemed very experienced and knowledgeable and once they took Callie back, she was returned to us within 10 minutes, new tube in place. They asked me what they needed to know about Callie so I told them about her vomiting, especially when she gets mad, such as when she is being held down for a feeding tube placement. Wouldn’t you know, the little girl hardly cried while they did the procedure, just to prove me wrong.

I talked to the craniofacial nurse practitioner and I don’t have a wealth of new information. My internet diagnosis was correct and Callie has fusion of her right coronal suture. I did find out that this is an unusual diagnosis, which has been concerning to the craniofacial team. We still do not know if Callie will need surgery. We are waiting on a call from a neurosurgeon’s office to set up an appointment for him to see Callie in person. He will make the decision on which route we go with Callie. I was hoping to hear from that office today but it looks like the earliest it will be is tomorrow. The nurse practitioner is also going to be reviewing the information with a geneticist to see if any further testing should be done on Callie.

So, that is all the information I know. We are trying to think ahead of planning for surgery if it is needed, but at the same time, not get too worked up in case surgery is not needed. So for now we wait and pray a lot.

January 26, 2009

Drama, drama, drama. Oh, when will it end? We were removing the feeding tube from Callie’s Mic-Key button today to give her a bath, and the feeding port came out of the silicone casing. Now, I have been prepared for the whole button to potentially come out at some point but I never expected this to happen. I am actually not sure how often it happens. It was not one of the Frequently Asked Questions on the makers of Mic-Key website. Leave it to my little outlier to try something new. So, after numerous phone calls to various doctors we have come up with “occasionally the silicone gasket wears out and the port falls out. You can put it back in (which we did) but it will only last one or two more days.” Lovely. I should mention these things are not cheap to replace and we haven’t even had it for two months.  So, tomorrow at 10:30 AM, Callie will be going to radiology here in Fargo to have a new feeding tube placed. Wyatt informed me that it was ok if it didn’t work, because we could just feed her a bottle. If only it was that easy.

 

January 23, 2009

I got a call from the craniofacial office today. They basically wanted me to know they had not forgotten us. The nurse practitioner we met with Tuesday is out of the office until next Tuesday, and she will call me then. All I learned was the results from the CT scan are not normal and the neurosurgeon is discussing with others the best plan of action. I am a little more uptight today. I hope the “not normal” still just means a fused suture and it is nothing more involved and more difficult. Oh, I must also share, just the term “neurosurgeon” intimidates me.

January 21, 2009

Jason, Callie and I got back home last night after two days of appointments in Minneapolis. I think the easiest way to get you caught up is just to go in order by appointments.  Disclaimer: This one is pretty long, so it may take a while.

Our appointment on Monday afternoon was the Feeding Clinic. It was a 1 ½ hour appointment involving a speech therapist, occupational therapist, dietician and nurse practitioner. The appointment began by getting Callie’s weight and measurements and by discussing her feeding regimen and any concerns with her development. Callie weighs 14 pounds 10 ounces and is 25.5 inches long. She is finally starting to put weight on which is wonderful and for now she remains on her own Callie growth chart – far below the third percentile for growth in all areas. The rest of the appointment involved discussing Callie’s aversion to having anyone touch her face, watching her play, and trying different foods with her to see what she would do.

I knew there would not be a quick fix to her feeding situation but I think it is going to take longer than I realized to get Callie eating. I mentioned that I would love for her to be off the feeding tube by age three and they pretty much told me not to get my hopes up.  So it sounds like we will have a long way to go with that.  Since she doesn’t eat by mouth, her cheek muscles are really tight and we need to work on loosening that up. We have face (cheek) stretches to do and can hopefully get Wyatt involved with them since she thinks he can do no wrong. She pretty much hates having her face touched (part of her oral aversions) but she has already let us start stretching her cheeks a bit, so that has been encouraging. We were also instructed to try feeding by mouth three times a day (at our meal times) just long enough until she shows disinterest and then be finished. This morning she sat with us for breakfast and played with baby food oatmeal. She got a little in her mouth (mostly by accident) and seemed to not mind it too much. So, that is what we will do a few times each day and hopefully Callie will learn that eating can be fun and enjoyable.

When I made a comment about not understanding how you can dislike food, Jason and I were reminded that if we were throwing up 20 times a day, we probably wouldn’t want to eat either. Good point. If we could get Callie’s vomiting under control, eating might be an easier task but since we don’t know why she is throwing up, there is not much we can do about it. This clinic gave us some things to try to focus on and basically reminded us that eating for Callie is going to involve much perseverance and patience. I hope I am up to the task.

Our first appointment Tuesday morning at 9 AM was with the NICU follow-up clinic. This was a really fun clinic where tiny NICU babies are followed for many years to see how they are doing in growth and development. We met with an occupational therapist that worked with Callie some in the NICU and she reevaluated Callie with the Bayley Scales of Infant Development. Jason and I had a really good time watching Callie during the test. You could see her little brain trying to problem solve. One of the funniest moments was when they were trying to see if Callie could turn the pages of a book (she can’t). The OT tried really hard to get her to turn the page and would kind of lift the next page up, in an attempt to get Callie to reach for it to turn. Callie was really interested in the book but didn’t want to turn the page, so she leaned over and looked around to the next page so she could see what was on it. I don’t think that is the task they wanted her to accomplish, but I think she should have received bonus points for problem solving. Callie tested better than I expected her to. She tested at 10 months cognitively, which is her corrected age. She was at 9 months with expressive language and 6 months with receptive language. Her fine motor skills tested at 8 months and gross at 6. We knew she was significantly behind with gross motor – mainly due to all the issues we have had with lack of growth the past few months. We have a lot of ground to make up but Callie has also come a long way since being discharged from the NICU. The OT said Callie preformed better than she was expecting her to.

After the evaluation with OT we met with one of Callie’s NICU doctors. He thought Callie looked good and he said he had never heard her lungs sound so good. He does think her excessive vomiting is an issue that needs to be fixed but no one knows of a solution. We talked for a while and didn’t come up with any clear cut answers on how to help Callie with that but now he is all up to date on the struggles we are having.

Our next appointment was with the pulmonologist. The NICU doctor called and talked to the pulmonologist before we arrived so when we saw him, everyone was on the same page. From a lung standpoint, Callie is doing okay. Her lungs sounded good and we are able to maintain her oxygen saturation above 95% on ½ liter. I would love to get her down to ¼ liter but for now she drops to 93-94% when we do that. So for now we wait on the weaning and we keep trying periodically and hopefully one day she will like ¼ liter.  

During our appointment with the pulmonologist, we found out that we would also be having an appointment with the craniofacial specialists. There was concern from various doctors about a flat spot on the back of Callie’s head. I had noticed the flat area for quite a while and also knew that one eye always looked a little more open than the other but no one seemed to express much concern over it until now.  And since it’s the way Callie has looked to us for several weeks/months now, we haven’t thought much of it.  So, because the doctors were concerned enough, and because we were already in Minneapolis, we were worked into the schedule to see the specialists. It was a little intimidating to walk into a room with a nurse practitioner, a physical therapist, and a certified orthotist and begin discussing Callie’s stiff neck muscles and the flat area on her head and what is causing those things and whether or not it can be fixed or even if it should be fixed.

There was discussion that the flattened area was not where they typically see it and a neurosurgeon was brought in to see what he thought. So, after several head measurements and discussion and a few questions by us (remember, a little overwhelming, didn’t really know what to ask) we then found out that radiology had also worked us in and Callie was going to be having a 3-D CT scan of her skull later in the day. On the way to radiology, Jason and I discussed what was happening and neither of us really knew where we stood on the issue. Part of us didn’t care that she has a flat spot and her face was slightly a-symmetrical (isn’t everyone’s?) but at the same time, we didn’t know if it was severe enough to cause issues in the future, aesthetically or developmentally. 

So, at some time around 1:15 PM we arrived at radiology for the scan. I should probably mention here that Callie had been up since 7:45 AM and was absolutely, utterly exhausted. She had no time for a nap and had about all she can take. Well, we were taken back for the CT scan and Callie was, very much against her will, strapped to a table. Her arms were immobilized with a swaddling blanket and then her body was strapped down with a large sheet of Velcro. Her legs were held down with a bag of lead and then her head was cushioned on either side with blankets and then velcroed into place. I don’t think I can sufficiently describe the absolutely furious child we had. The humor in it all was that Callie was determined to break out of it all and she came pretty close. As soon as the tech left the room to begin, she had to turn around and come back because Callie was getting loose. She was quite impressed with Callie’s strength. So, through singing and pacifier holding and finally the little friend giving up and drifting in and out of sleep, we had a successful scan.

And at 3:00 PM we pulled out of the parking deck of the hospital, heading home and waiting for word on the scan and trying to process everything we had learned in the day. I think all three of us were exhausted and overwhelmed.

So, first thing this morning, I received a call from our pulmonologist asking me if I knew the results of the scan. I didn’t but he did. The scan showed that two of Callie’s sutures in her skull have closed prematurely, resulting in no further growth of that area of the skull, causing the flat part of her head. This closing means Callie is not a candidate to wear a helmet to round out her head. (This is a relatively new thing that is being done for babies.  An internet search can fill you in on the details.) Instead, it means she needs surgical correction. (You might remember many months back we said we were done with surgeries. Well, we were wrong). I haven’t talked with the craniofacial specialists but the pulmonologist and I talked for a while.

Basically,Callie needs a surgery to open up the sutures that have fused in her skull. I asked if it is something we can ignore and not fix and he said it wasn’t. As Callie grew, her cranial/facial abnormalities would become more pronounced and we can’t do that to the little girl. Also, there are other issues that could occur with brain development, vision, jaw alignment, etc.  so it is something we have to do. The tricky part now is the timeline in which to do it. The doctor let us know that he will be talking with the neurosurgeons to come up with timing that is best for Callie, mainly from a pulmonary standpoint. She has been so stable with her lung issues, that we want the least setback possible. Being on a ventilator for surgery and recovery is a step back, but it has to be done. 

So, that is all I know for now. I don’t know if the timeline is weeks or months away. I hope in the next week or so we will know more. I have been trying to do a little research on my own and from pictures I have seen and what I have read, Callie’s condition is called unilateral coronal craniosynostosis. I am not concerned about there being any underlying syndromes that go along with this because Callie had a full genetic screening performed while in the NICU. I think it is just one more thing that has happened, one more hurdle we have to jump and I don’t know why.

So, with all that said, please continue praying for Callie, praising God for all the progress she has made and asking him to be with us in the next weeks and months as we enter yet another surgery with the little girl.

 

January 16, 2009

The little girl has been able to fight off the cold on her own. She is pretty much over it all. We are still just dealing with some think stuff that she spits up every now and then. For a few days she was up to ¾ liter oxygen, but she is back down to ½ and is satting well.

We will be going to Minneapolis this Monday for three appointments – one being pulmonolgy. I am sure they will look her over from head to toe to see how she is doing.

Weight gain is finally coming! Callie was 14 pounds 2 ounces last Friday and today she is 14 pounds 9 ounces. Now we need some linear growth to go with that, and we might be good. She is starting to look bigger and finally, she is starting to outgrow some clothes.

I really don’t have much new to add other than it seems the new formula is working out well and she seems be getting some much needed calories to grow.

January 6, 2009

Callie decided to end 2008 and bring in 2009 with some kind of viral infection and gastrointestinal difficulties. It has been lovely. Shortly after Christmas, Callie started having trouble with her nighttime drip feed. She would be really gassy and would throw up multiple (sometimes as many as 10) times a night. This was incredibly exhausting for Jason and Callie and me. The only thing different about her night feeding was that we were all out of the liquid formula that we had been using so we were using powdered formula and water. I wouldn’t think there would be much difference but the little girl’s body thought so. It almost seemed as if formula turned to gas as it digested and all she had in her body was gas. You could pick her up and hear (and feel) the gas shifting and rumbling about in her tummy.  After a few nights of this, we could not handle anymore and Callie’s body was getting worn out. (Her spitups were tinged with blood due to her volatile throwing up). We had a prescription for a new formula (called Pregestimil) but we could not find a store in the Fargo-Moorhead area that carried it, and very few that could even special order it. After an hour and half of phone calls, we found a pharmacy that could order the new formula for us and have it by the next day. So, after a few days of straight breastmilk (thawed) and a transition to her new formula, Callie’s GI issues seem to be under control. She is not as gassy and this new formula seems to move more easily through her system and we haven’t had any bloody spitups in a while.

So, around the time we had to make immediate changes to Callie’s formula, she started having increased mucous spitups and her resting heartrate was increased. We initially didn’t know if it was all just due to the intolerance of her formula but after a few days it became clear Callie had a cold. Our primary doctor was on vacation but we found a doctor willing to work with us over the phone which prevented us from having to bring Callie in. Through increased nebs, suctioning and nose drops, we have thus far been able to manage Callie from home. The infection isn’t really in her lungs which is wonderful. It is more of a nasal congestion but that becomes tricky since she depends on oxygen being blown into her nose. We have had a few sleepless nights and several sleepy days but it seems Callie’s body is beginning to recover. It has just been more hectic and a little more high-stress around the house.

The little miss is still convinced that 13 pounds is the best weight for a 14 month old baby. She is 13 pounds 14 ounces as of today. I have given her to the end of the week to make it to 14 pounds. I will let you know how that goes.  It’s hard to understand why she isn’t gaining weight.  Jason calculated the number of calories she is fed each day with her 24-hour drip feedings and fortified formula.  Proportionally, her caloric intake is equivalent to a 180 pound man consuming over 9100 calories per day.  That would be like Jason eating 17 BigMacs every day of the week without gaining any weight.

Callie had a really good visit with speech today. She ate more baby food than she has eaten in a long time – almost one and a half tablespoons total. Over the holidays, we discovered she loves (or shows some interest in) chocolate covered spoons and candy canes but you can’t really make a diet of that. Today she ate chicken and apple baby food and didn’t gag much. She seemed more interested than I have ever seen. It was quite encouraging.

In a few weeks we will still be going Minneapolis for the feeding clinic and a few other appointments. I am hopeful we will find out some good information from these visits.

And for a random thought – Callie finally has a favorite toy (as far as I can tell). An old-school metal Jack-in-the-Box. She can’t work it on her own but she thinks it is terrific!

 

December 27, 2008

Merry Christmas from the Medders family! Christmas day was great. It was calm, relaxing, low key and lovely. It was wonderful just to be home as a family. There were many remembrances of our great Christmas last year and the generosity of the Ronald McDonald House. Callie was so tiny and sick this time last year and it was so special to have her home and smiling and trying to take in this thing called Christmas.  

Callie got a few new toys including a new doll she likes to “talk” to. I found it difficult to buy toys for my 13 month old child. Most of her toys are in the 3-6 month category because that is where she is developmentally. Her tiny hands also make it difficult for her to grasp some toys so we had to think about that as well. Wyatt got a new sled and his first thought was “Momma, a sled! A sled for me and Callie!” I hope when it warms up a little, we can get Callie outside and pull her and Wyatt together.  Wyatt also got a bedspread for his bed so he thinks he is pretty special now.

Callie continues to be…Callie. Not making progress at breakneck speed. It is somewhat discouraging to read up on other babies who were in the NICU with Callie and see how they are thriving and doing so well developmentally and I just feel that each day we get farther and farther behind.

Here is a summary of Callie just so maybe you can get an idea of how small she still is and where we are. She is 13 ½ months old (will be 14 months January 4). She is 10 months old, adjusted. If a shoe is to fit her foot, it is a size 0 crib shoe. 0-3 month clothes still fit. Though, as she receives more clothes, we put them in her closet so we do dress her in 6-9 month occasionally. She can still wear size 1 diapers (though we buy size 2 in hopes of a huge growth spurt). Callie is sitting well but she doesn’t want to branch out from there. She will reach for toys immediately around her but she won’t do anything else and risk falling over. She cannot pull herself up (or push herself up) and is nowhere close to crawling. She just recently started putting pressure on her feet so we can at least get her to push up with her feet for a few seconds at a time. She also started reaching up for us when she wants to be picked up. She has found her toes and enjoys chewing on them. Mentally she still seems all there. She has a sense of humor and loves Pat-a-cake and Peek-a-Boo. She enjoys sitting next to the kitchen cabinets and hitting them with toys. We have been having some work done to our house and she hates the sound of drills and saws.  

Callie will be on oxygen for quite a while longer. I haven’t even asked the doctor when she might be able to come off. She is tired of having something constantly in her nose. She can look at you innocently and then pull her cannula out of her nose and stick it in her mouth to chew on, smiling the entire time. Callie is being followed less frequently by her pulmonologist because growth, time, and staying healthy are what she needs to get better. None of the doctors have been very pleased with her growth. Now that she has the j-tube she has had some growth, but it is still slow. She was 13 pounds 12 ounces on Monday. More than just gaining weight, though, Callie needs to grow in length which is where she is really lacking. It has already been mentioned that some doctors are thinking she will need growth hormones in the future. This will not be done until she is two, so I haven’t found out a lot of information about it. I do know that while no one is really expecting Callie to ever be on the growth chart, she needs to be at least following the general curve of it, which she is not doing. The past couple of months with little to no growth have hindered that greatly.

Next month we will be traveling to Minneapolis for two days of appointments – Feeding Clinic, Pulmonolgy, and NICU Follow-up. I am hopeful we can get some more insight into what they have seen from other preemies and maybe they will be hopeful that we are still moving in the right direction with Callie and it is still possible for her to catch up.

Jason and I are still happy with the j-tube. She no longer spits up milk so her nutrition has to be better now. In the next week or two we will run out of all the milk I had frozen for Callie so we will be changing to all formula and it will be a new formula for Callie. Hopefully, the transition will go well and she will tolerate it. We are still having issues with Callie spitting up in the middle of the night. It usually starts around three or four in the morning and continues every hour until around 8.  Jason and I are confused by it. She doesn’t throw up much from her stomach but she has so much air that comes up. We cannot figure out where all the air comes from and why she only gets air at night. But sleeping soundly only until 3 AM is not really a schedule I am enjoying.

So there is a summary of Callie. I suppose it is an end-of-the-year summary in which I am ready for a fresh start in 2009.  Thank you all for your tremendous support of our family during the past year.  It was full of ups and downs, but God was (and continues to be) faithful.

December 13, 2008

Where to begin? Since winter is well underway here in Fargo, the Medders clan is spending day after day in the house away from everyone. When we do get out (without Callie) we change clothes and wash hands and arms as soon as we get back home. We feel it is the least we can do to try to keep all possible germs from the little friend even if it results in lots of clothes needing to be washed.  Of course, we still use hand sanitizer several times a day – to the point that our hands are dry and cracked and bleeding all the time – to keep Callie from getting a cold or the flu.

Speaking of lots of laundry, Callie might fall into the category of going through way too many items of clothing in one day – and not for a good reason. For some reason, since her Mic-Key button placement, her spitting up has increased significantly in occurrence and volume. She can range anywhere from 5 to 14 spit ups a day. Jason thinks “spit up” is not the correct term. It is actually more of a projectile vomit (pretty much as lovely as it sounds). If Callie was spitting (vomiting) and still growing, I might not be as uptight, but since October 23, she has failed to gain any weight at all. (Not even an ounce). She might go up an ounce or two and then a day later be back down. She is 13 months old and holding steady at 13 pounds. It is extremely frustrating.

To try to get a grasp on why or for what reason she spits, we have changed the rate of her feeds, changed the volume, changed the mixtures, changed the temperature and any other idea that might come to mind. Nothing consistently helps. It might work for three days and then she starts vomiting again. We have also changed medicines to see if maybe her body just wasn’t responding to the current meds. And like everything else, they seem to work for a few days and then are no longer effective.** For some reason my child can tolerate anything for three days and then it no longer works. It is the oddest thing** 

Callie went to a developmental evaluation here in Fargo on Tuesday of this week. My biggest concern I wanted to address was eating. Yes, I know she is behind developmentally in every way imaginable but when her growth and nutrition is suffering, it seems to me to be the most important issue to address. Callie performed wonderfully for all the right people so they could see how often and volatile her vomiting is. We discussed a few different options and it was decided to try thickening her milk. (I’m up for trying anything at this point).

On Thursday, Callie had an appointment in Minneapolis with her pulmonologist. Lung-wise I am very happy with how she is doing. I haven’ t heard crackles in the longest time and her saturation levels have been great. The doctor (who was also one of her NICU doctors) was not happy with her growth of the past month and a half. He decided since we were there, Callie should have a barium contrast study to see if there was anything abnormal with her stomach/intestines and then discuss our possible options. He pulled some strings and Thursday we had the study done. It didn’t show anything unusual that would suggest why she was spitting up so much. The doctor, however, was still concerned with Callie’s lack of growth, especially since she needs to grow in length to grow bigger lungs with hopefully healthy new lung tissue. I quizzed the doctor on all the thoughts of medicine and food adjustments and milk thickening and any ideas I could come up with but he didn’t think any would work (he has never seen them make a dramatic difference before). So, with that being said, Jason and I had to make the decision to convert Callie’s G-tube to a GJ-tube. From the outside, the Mic-Key button looks just the same, but on the inside, it is different.  Instead of having a tube go right into her stomach, the tube runs from her stomach into her jejunum (small intestine) and deposits the food there. This requires us to drip feed Callie all day long instead of giving larger bolus feeds, but it makes it virtually impossible to throw up milk. The conversion was relatively simple. It is not a surgery, but the line does have to be placed in radiology so they can make sure it threads the right way. So, as of Friday, Callie has yet another feeding tube. We are still getting adjusted to it (as is Callie) but the good news is she has not thrown up any milk in the past 24 hours. The bad news is she can still throw up, only it is stomach acid, bile, and dried blood. This is more painful for me to watch and has actually brought tears to my eyes. I was desensitized to the milky spitups but this just seems so miserable. Callie is a champ, though. It is pretty amazing how tough she is. She despises spitting up, especially when it takes her breath away, but has soon as she is done, she will smile at you with teary eyes.

So that is where we are at now. Last night was a pretty crappy night. Callie had been tolerating her night feeds well before all this (it was the only time she did tolerate feedings), but last night she threw up multiple times so we got very little sleep. I am going to give it over the weekend and then call the doctor if things don’t get better. Jason and I are getting used to her new feeding schedule (running constantly all day long) and constantly having a another tube hooked up to Callie. She still isn’t quite up to her full feeds but she is keeping all of it down (just stomach acid and bile are coming back up) so I can’t think we would be doing any harm in increasing slowly rather than quickly.

So, that is the latest update. Our biggest prayers are for Callie to say healthy and to grow. We will be going to the doctor here in Fargo next week so we should be able to see if we have made any progress in the growth category. Also, in January we will be going to Minneapolis to attend a feeding clinic with Callie. She is making little to no progress with her eating by mouth so hopefully this clinic will give us some ideas of what  we can do to encourage her to want to eat by mouth.

Thanks for checking in on us and hopefully next time I update I will have more cheerful news to share.

Oh, I do have some exciting news. I really wanted Callie to be sitting unassisted by Christmas and by the end of November she was. She sits a lot and is learning how to play with toys while sitting and still maintaining her balance. It is fun to see her do something more baby-like, even if it is completely on her own time frame.

Click here for November blog entries.