Thursday, July 30, 2009

From this moment on our lives have changed forever….

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I have been sitting here staring at the screen wondering how I am going to word this post and even what to title it….

After nearly a year of searching and wondering, we finally have our answer.  This is the first time that I have ever written this… Lucy has been diagnosed with mitochondrial disease.

We are feeling all sorts of emotions and  need some time to figure things out.  I  will post more later.  Please keep our family in your thoughts and prayers are we begin to grasp what getting this diagnosis means for Lucy and our family.

Monday, July 27, 2009

Weight Check

I am happy to report that Lucy is gaining not losing weight, albeit every so slowly .  I wish someone would tell me I’m not gaining weight  fast enough!  Lucy did lose weight post surgery, but has gained back what she lost plus an ounce or two!  Nonetheless, we need to get Lucy gaining a little faster.  Lucy has  moments during some days where she tolerates a higher feeding rate and moments where you just need to  slow down the rate or shut off her pump and give her a break.  In the beginning when we started all of this enteral feeding stuff it was not always easy to know when she has had too much.   Now, months of experience has allowed me to pick up on her “I’m too full, my belly really hurts me” cues.  Lucy can’t verbally tell us that her belly really hurts her, but can express herself quite clearly without words.  When she is full she has a very distinct cry/scream, she will often slow down and lay on her back, and or lay on me and just plain be miserable.  She can get fitful(no pun intended) when she feels full,  it is difficult to find ways to comfort her when she gets like this.  I wish we could avoid these moments all together, but unfortunately we need to try and push the rate on Lucy’s feeds to see is we can’t get her gaining a little faster.  We are going to give it another month and see what we can do about her feeding rate.  If this doesn’t work then I think that we are going to discuss converting her G tube into a J tube.   Lucy is unable to tolerate bolus feeds, this is where you push several ounces of food with a syringe into her tube every few hours, so she is on continuous feeds with her pump approximately 22 hours a day.  The down side to J tube feeds is that you can only do continuous feeds, but since that is all we are currently doing with Lucy than I think that this might be an easier option for her.

Friday, July 24, 2009

A long overdue update…

I know, I know I have been slacking in the blogging department.  I plead the fourth, that is four kids that are keeping me busy with camps, activities, medical appointments, and just life in general. 

I’ll start by updating on Lucy since her life is weighing the heaviest on my brain right now.  On Tuesday we had our repeat swallow study at DuPont with one of their senior speech pathologists who has experience with aspirations and breastfeeding.  I’ll just cut to the chase, the results from this study were the same, possibly a little worse than the first swallow study.  We confirmed again that Lucy silently aspirates all thin liquids even thickened liquids.  She did do better when lying down at a 45 degree angle which is similar to the position that she nurses, but she still aspirated after forty swallows from a Haberman bottle.  We learned that Lucy has a delayed swallow, she does not swallow until she has too much in the back of her mouth, which is contributing to her aspirating. We were told that this combined with her hypotonia are contributing to her swallowing issues.  Here’s the kicker, this speech pathologist advised us to stop breastfeeding as well.  Her fear is that Lucy could possibly be aspirating small amounts of breast milk every time she nurses, thus compromising her lungs and putting her at risk of having another aspiration pneumonia. Her fear is that kids with low tone who have repeated aspiration pneumonias are at greater risk of not recovering from the illness, possibly requiring a trach.  Yikes!    

We are disappointed, to say the least, with the results and recommendations from this study.   Lucy is a breastfeeding addict, because of this we have been modifying her nursing since we were given the results from the first study.  I have been pumping and then bringing Lucy to nurse on an empty breast. This way she is receiving the comfort and security she longs for but not the milk.  She does not seem to mind that there is little to no milk flowing when she is nursing, again another plus to her lack of appetite.  Very often Lucy comes to me to nurse for just a few seconds at a time when she is in a stressful situation, it’s her way of asserting her power and finding comfort when she knows she has very little.   I had the speech pathologist listen to Lucy when she was nursing to hear for any changes in her breathing and swallowing, thankfully she did not notice any problems. She observed that Lucy does very little swallowing when she is nursing, indicating that she is receiving very little milk.   Still there is really no good way of knowing if she is in fact aspirating when she is nursing.  We are going to need to work very hard with Lucy to find alternative ways of comforting her, this is NOT going to be easy, but hopefully she and I will learn.  I am feeling very defeated, but I will of course continue to pump and provide Lucy with as much breast milk as possible through her tube.   Got breast milk?  I am on a mission to find some lactating mamas' who are interested in donating any of their extra milk.

Yesterday and today we were at DuPont again to find Lucy some adaptive equipment that will hopefully make her life and ours a little easier.  I have been initiated into the world of special needs equipment, holy moley I had no idea that they had so many options available to us!  I was equally amazed and overwhelmed with what insurance will cover and all the restrictions and limitations that go along with that.  After weighing the pros and cons of  several systems, we are going to be getting Lucy a seating device that will support her trunk better when she sits thus allowing her to use both of her arms without using one arm for stabilization.  This seat has a combination hi/low base for indoor use as well as a pretty cool looking stroller attachment for use when we are out and about.   Lucy is small and still fits in most of her baby equipment, but despite her size she is growing up and wants to be more independent and interact more with her surroundings.   That being said, today we fit Lucy for a teeny tiny walker which will help her to get up and moving as much as her little heart desires!  I was not sure how she would react to using a walker and was VERY pleasantly surprised when she grabbed on and put one foot in front of the other.  We trialed both posterior(a walker that you pull behind you) and anterior (a walker that you push in front of you) types.  For Lucy it was more natural for her to use an anterior walker, she kept trying to turn around and push the posterior walker.   Lucy took to walking with a walker fairly quickly, she would walk a few steps than sit down to take a break.  At one point she pushed a walker out of the door of the therapy room and part way down the hall before she wore herself out.  She was so darn proud of herself and she smiled so big that her binky fell onto the floor.  After weighing the pros and cons of the three different walkers we trialed today we decided that the anterior walker with two wheels on the front and stoppers(now tennis balls) on the back was the best option for Lucy.  Unlike her adaptive seating system we ordered yesterday that will take three to four months to get, we were able to bring home her new walker today.  Now that it is in our home, she is not as interested in it as she was at DuPont.  Perhaps she saw the walker as a means of high tailing it out of the hospital and that is why she took to it as well as she did.

Today we have an appointment with Lucy’s GI nutritionist,  I am not expecting any surprises from this appointment it should be a routine weight check and eval.  We have had a whirlwind of appointments this week, we are going to take a break from all the appointments for the next month as we are “officially” taking a summer vacation!  We have a lot of things to cross off our summer fun list.  Of course if  Lucy or one of the other kids gets sick we will address the issue, but hopefully we don’t get sick of vacation.

Jack, Megan and Sophie have all been busy with various morning camps the last two weeks.  I organized a very complicated schedule of who’s going where on what afternoon this week with several of our friends.  Without the love, support, and hours of babysitting these friends have offered us we would be more insane than we already are!

P.S. I will post a slew of pictures just as soon as I charge the battery on our camera.

Tuesday, July 14, 2009

Does anyone know what day of the week it is?

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Sounds ridiculous, right?  In my sleep deprived state I admit that I have had to ask this question to my husband upon waking on way too many mornings this past year.  He has just gotten in the habit of announcing  the day of the week to me when he wakes, and sometimes even  throws in the date and the year just in case.  Ha ha very funny, but seriously I am having a tough time keeping everything straight these days, can you blame me?   I remember when Lucy was born we had an OB nurse who was also the mother of four, her best advice to me was to get a notebook and write stuff down,  because as the mother of four your memory will be tested.  She was not kidding!  My head has been full of carpool schedules, camp schedules, play dates, doctors appointments, phone calls, insurance issues, more doctors appointments, therapy appointments, swimming lessons, dance classes, grocery lists, Target lists, Costco lists, who wears what shoe size now, how much did Lucy get feed/how much food does Lucy have left, when did I last change Lucy’s diaper and Sophie’s for that matter, how long has Lucy been sleeping, is she running another fever, who wants what for breakfast, lunch and dinner for that matter, when did daddy say he was coming home, and oh yeah more doctors appointments…. and the list goes on and on. 

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In the next few weeks our schedules are chock full of all the things I just mentioned and then some.  Lucy’s repeat swallow study has finally been scheduled for next week Tuesday.  I have spoken with the speech pathologist who will be doing the study, she gave me hope and that’s all I need right now!  We have an appointment with the seating clinic at DuPont next Wednesday to see if we can’t get Lucy some adaptive equipment that will allow her to sit and bring her hands to midline without tipping over.  Well just have to see what they have to offer us.  On Thursday of next week we have an appointment at DuPont again, this time with the PT department to get Lucy fitted for a posterior walker.   Lucy is not able to walk yet, but we are hopeful that with time and the right equipment we will be able to help her learn to walk.  She wants so badly to be able to walk, but is physically unable to hold up her upper body without support, if you can imagine her frustration level is through the roof!  Finally on Friday of next week we end our week with a follow up appointment with Lucy’s nutritionist, this gives us eleven days to get some weight on this girl.  

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(In case your wondering, she has a mouth full of sand!)

Jack, Megan, and Sophie are all busy with camps, sports, dance class, swimming lessons, play dates, library activities, and  just plain being kids!  This summer has been flying by, which makes us all kind of sad, we love spending time together as family.    We love not having to stick to a strict schedule, but don’t get me wrong a loose schedule is still necessary.  Our hope as parents is to enjoy the kids for who they are right now and not wait until they are this or that to do things with them.  We say this  about every age, “I love this age”, the truth is every age has its advantages and opportunities, so we try and seize the moments.  I am hoping that we will can take a mini break for all the madness sometime in the near future.  Our hopes of traveling back to our home state of Wisconsin will not be possible this summer, but we are hoping to take a vacation at home, like I’ve said the accommodations just can’t be beat!   Every summer we make a list of all the activities we want to do over the summer, I took a look at this list just the other day and boy do we have a lot to get to!

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P.S . All of these pictures were taken  at the beach the weekend before Lucy’s PEG tube surgery.  Just thought I’d share a few more, enjoy.

Sunday, July 12, 2009

Looking on the bright side…

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It happened again, the medical world completely sucked the happiness right out of me!  I know I would not be normal if I did not feel the things I have been feeling recently, but it is not in my nature to be so glum.  It has taken time to adjust to our new normal, and I am proud to say that we have established some sort of a routine once again.  I have been busy trying to establish this routine and have not been ignoring all of you, I  just needed some time to put things back together in our life.  In an effort to stay positive today I am going to look on the bright side of things!

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We have met the most amazing families this year!  I am in awe at the dedication that all of these families have to their medically complex children and their families.  I have been comforted, inspired, supported, educated, and truly blessed by these remarkable people.  We have been welcomed into a world that we knew existed by never had to live in until Lucy brought us there.  All who live in this world can relate to what we have or are experiencing and for that we are so grateful for being a part of this world.  Finding others who can truly relate to some of what we have been going through has been priceless, I bet Master Card would love to make a commercial out of our experience.  I can see it now-recent hospital bill $25,000.00,  special infant formula $65.00 a can, laboratory charges and medical tests somewhere in the hundreds of thousands of dollars, life experiences…priceless!

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Staying true to my word, I have been uplifted by many e-mails, phone calls, and the occasional greeting card mixed amongst the medical bills and insurance statements recently.  In the last few months I have had the honor of speaking with some long lost friends as well as some not so long or lost friends.  All of your words of wisdom, encouragement,  and kindness have helped us to get through some pretty difficult times recently!  We love hearing from you!  I know it may not be easy to talk to us at times, some of you have expressed concern that you don’t know what to say to us.   I’ m not sure I would know what to say to somebody in our position either, your love and support is all that matters, the rest is just semantics.

The world works in mysterious ways and no matter what, I love that we are living in this world.  I recently read a poem that struck a chord, thought I’d just post it here for all to read:

Heaven’s Very Special Child

A meeting was held quite far from earth
It's time again for another birth
Said the angel to the Lord above
This special child will need much love
His progress may be very slow
Accomplishments he may not show
And he'll require extra care
from the folks he meets down there
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped
So let's be careful where he's sent
We want his life to be content
Please Lord, find the parents who
Will do a special job for you
They'll not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon they'll know the privileges given
In caring for their gift from heaven
Their precious charge, so meek and mild
Is "HEAVEN'S VERY SPECIAL CHILD"

- Author Unknown

 

Maybe we’d be a better Hallmark commercial ;)

Saturday, July 4, 2009

How’s it going…

It’s going…that’s my typically response to this question.  Not really sure how to respond, if I’m in the mood I might elaborate if not I just smile and move on.  I would be lying if I told you things are back to normal in the Marlett household, we now have a new normal that is not quite normal.

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We are trying to get used to Lucy’s new hardware.  In some ways it is way easier than the NG and in others it is way more challenging!   I love that we no longer have to check for placement every time we go to use it. I love that we no longer have to pin her down and put a tube up her nose several times a week.  I love that she no longer needs to have a yellow tube taped across her face with adhesive that eats away at her skin.   As for the PEG I love that it is ready to go when you need it, but it leaks so much!  Her ports on the end of her tube were stretched from being used so often that her feeding sets kept coming unplugged and leaking everywhere!  She can also unplug her feeding set from her tube all by herself, augggggh!  I was looking forward to receiving our monthly shipment from our health care company on Tuesday only to learn  that they mailed us the wrong Y-ports for her tube.  After many phone calls I was able to get things straighten out with our order, but we still had to wait for our new order to arrive.  Needless to say, Lucy lost a lot of her feeds this week on account of a loose connection, how very frustrating and disgusting!  I now have measures in place to ensure that we will always have a supply of whatever we need when we need it! I’ve said before the learning curve is steep!  We are working daily at trying to get Lucy on some sort of a feeding schedule, some days she does alright and other days are down right awful.  Some days she tolerates the rate at which she is fed and then you have those days where she doesn’t.  What’s a mama to do?  We are trying to take this one day at a time, but I am frustrated and I know she is too.

What do you call this…our new “normal”

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Our new normal is difficult to get used to!  All of Lucy’s life has been focused on getting her to eat more and now we are trying to take the focus off of eating orally.   In some ways her lack of appetite has been a blessing, she is not interested in eating a variety of foods, in fact she is only really interested in nursing or eating Cheerios.  It amazes us how she has no interest in eating the foods we eat.  When we sit down as a family for meal time we always put Lucy in her  highchair and offer her Cheerios.  She used to eat them by the fist full, but now she eats one at a time very often using her binky to suck them down.   At first she was mad at us for only giving her one at a time, she wanted to shove them in her mouth the way she was used to, but she quickly learned that she could not swallow even two at a time.  We are not sure why she has so suddenly declined, regression is something that we have seen in Lucy at times when she was dealing with some sort of illness, but she always seemed to come back to “baseline” soon after feeling better.  In many ways she is back to the Lucy we know and love so much, but  there are several things that we have noticed that are not better; her swallowing issues are one, and her balance is another.  She has been tipping over a lot recently, she has also been spending a lot more time laying on her back, I think that these two go hand in hand.

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We had an appointment last Friday with her GI doctor and nutritionist.  It was difficult hearing the new plan for Lucy, I just haven’t accepted the fact that she is now 100% tube fed.   Lucy’s nutritionist understands how difficult this change is on us, she sat and cried with me while we witnessed Lucy have a total meltdown because she wanted to nurse so badly.  Not being able to nurse her when she seeks it out for comfort is the most heart breaking, it goes against my mothering instinct.   We are experiencing several obstacles in regards to feeding her.  Lucy’s rate at which she is fed needs to increase in order to meet her calorie needs, we are having a he** of a time getting her to tolerate an increase  in her feeding rate.  We are moving very slowly with this, even so we are noticing that she is burping, gagging, and even throwing up.  These are all things we do not want her to do, throwing up is very bad because of her aspiration issues.  Her GI doctor believes that Lucy suffers from acid reflux, and now that her upper GI has ruled out any sort of  food allergy issues he has prescribed meds for her reflux.  All of us are hoping that if we can control her reflux then maybe this might help her rate issues, although her delayed gastric emptying is still a major issue.  There is talk of converting her G tube to a GJ tube.  This means that instead of her tube going into her stomach we would instead place the tube into the opening of the intestine.   Doing this might allow us to increase the rate at which she is fed and decreasing the risk of her vomiting and aspirating.  I think we all feel that we need to give Lucy some time to adjust to her new hardware and than reevaluate in a few weeks to see how she is doing.  I am not ready to make a decision about this just yet, but knowing we have these options is strangely comforting.

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As for repeating a swallow study we are still waiting to schedule this.  I spoke with a speech pathologist at DuPont on Thursday about Lucy.  She was kind and compassionate but not quite as optimistic as I was hoping she would be. 

P.S. The last photo is of Lucy signing “MORE”!  We are so proud of her!