Does anyone know what day of the week it is?

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. 

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.  

(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!

 

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.

Looking on the bright side…

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!

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!

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 ;)

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.

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”

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.

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.

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!

Home Sweet Home

After a very frustrating and exhausting stay at CHOP we are so grateful to be back home!   We were discharged very late last night after a long conversation with Lucy’s doctors about what we are going to do next. ..

Lucy’s swallow study results confirmed what we feared the most, she silently aspirates with all liquids even thickened liquids.  She had difficulties with almost everything we tried, with the exception of one Cheerio at a time.  When she ate more than one at a time she coughed and that was not a good sign.   So what does all this mean?  Her CHOP doctors are extremely concerned that Lucy is at risk of aspirating anything that goes in her mouth, and because she is a silent aspirator ,which means she does not give any indications of chocking,  this is very dangerous.  They advised me to stop breastfeeding.  Lucy is currently 100% tube fed.  We are devastated by these results!  This is not what we want for our baby girl!  We suddenly feel that we are moving in the opposite direction. 

Swallow studies are a snapshot in time according to our pediatrician and speech therapist(ST).  We are going to do a repeat swallow study in a few weeks when Lucy is back to her “baseline”.  She has been through a big ordeal this past week and is doing better, but is still not back to her norm.   Our hope is that we will get a second opinion that will allow us to breastfed once again.  Breastfeeding is the only normal feeding activity that we have.  Equally as important, it is a means of comfort and bonding for Lucy and I.   We have been advised by our ST and pediatrician that there is a speech pathologist at Du Pont who specializes in aspirations and breastfeeding.  Our pediatrician once again has gone above and beyond and spoke with this speech pathologist earlier today.  We are looking at repeating the study hopefully at the end of next week.  In the mean time I am pumping to keep up my supply.     

These findings have been very difficult to accept!  We feel so blessed to have so many people in our lives who love and support us and who understand how important breastfeeding is to us.  Thank you so much for all your thoughts and prayers.

P.S. Her feeding pump is in the little backpack she is wearing.  We don’t make her carry it on her back, she tips over or falls backwards with it on. 

Monday

Lucy is sleeping and I am just sitting here contemplating the last few hours, days, week, month, year…

Lucy had a pretty good nights sleep, she woke only twice which is considered a good night in our book.  Drew and I have a ratings scale by which we judge what constitutes a good night.  Waking  only once in the night is considered an awesome nights sleep, 2-3 times is a good night, 4-6  times is a bad night, 7 or more is a sh**y night!  After typing this I just realized that it can go from good to bad pretty quickly.

We are waiting to have our swallow study done at 2:30pm.  This morning when the GI team made their rounds they told me that they wanted to wait for the results of the study before talking about letting us go home.  This is so not what I wanted to hear.  From what I understand, they need to asses Lucy’s swallowing issues in order to determine if she can take in liquids by mouth without the risk of aspiration.  This is what I also understand, it is next to impossible to determine if Lucy aspirates breast milk when she is nursing because you can’t fill my breast with barium and have her swallow.  They are going to try their best to simulate the suck and position of breastfeeding  by using  a Haberman  feeder (a special kind of bottle that resembles the flow of breastfeeding).  Here’s what I have an issue with, Lucy has never had an aspiration pneumonia before having the PEG procedure and upper GI, and she has been nursing for 15+ months.  It seems too coincidental that she had this occur immediately after her procedures on Thursday.  According to our ST,  she told me that because of the high antibody content in breast milk it is not likely that a baby can get an aspiration pneumonia from breast milk.   We know that she has aspiration issues when drinking from a cup, I have no problems changing her cup drinking, but to not breastfeed will be an issue.  I have been following the doctors orders, Lucy is currently 100% tube fed, the exact opposite of what we want for her.   If they find she is indeed aspirating all thin liquids than we will need to formulate a plan.  Right now, my plan is to think positive and trust that everything will work out for Lucy’s best interests!

Happy Father’s Day

Today was pretty uneventful as far as medical needs go. We were fever free all day, hooray!   Lucy is on 22 hour continuous feeds until her NPO status gets lifted.  She is tolerating her feeds for the most part.  She does have moments where we know she is too full because she gets  fussy, irritable, spits up, and generally doesn’t move all that much due to her belly being hard and full.  Her doctors agree that she needs a break from the feeds every now and then to allow her body time to digest, hence 22 hour continuous feeds and not 24 hour continuous feeds.   Their was some discussion from the GI team about putting Lucy on Erythromycin to help her with her motility, I’m not convinced that this is the way to go with her.  I think that we need to give this new tube some time.  By the end of the day today Lucy was behaving more like the Lucy we know and love.  Her tone is improving and she is now sitting and pulling up to stand, oddly though she still has a head lag when you go to pick her up.  I think that this is because she is not using her core muscles at all, they were weak to begin with but now she has a hole in her belly so forget about her using them now.   Her IV called it quits on her this morning which caused her a lot of discomfort.  When I asked her what hurts she held up her hand, I was so impressed that she did that!  Thankfully we pulled it out and did not have to place a new one!  We switched her to an oral antibiotic which we can push right into her PEG.  Tomorrow we may have to place another IV in the morning because she needs to fast for at least four hours prior to the swallow study.  Maybe we can figure something out, it seems torturous to have to place another IV, frankly she has no veins left to access.

Today we were able to get a six hour leave pass to get a break from this place.  Drew and the kids came around lunch time.  We had lunch in the cafeteria which the kids think is fantastic, actually it’s not too bad they have a sushi bar.  After lunch we headed to the Please Touch Museum for the  rest of the afternoon.  We all had a blast doing whatever we wanted at the museum. We closed the place down as usual, we were literally the last family to leave.   When we were leaving we bought ice cream for the ice cream truck that just so happened to be strategically parked right outside the museum at closing.  The kids kept saying over and over what a great day they were having.  That was the best father’s day gift Drew could have gotten.

Tomorrow’s plan is to do the swallow study at 2:30pm, I think  she needs to have a repeat chest x-ray done as well, and then go home!   Again, thanks for all your thoughts and prayers!