Esio Trot

According to Dr. R's scale, LillyAnna has gained a whole .3 ounce in the last month and a half!  Does not sound like a lot but we are on the gaining end and that is a good thing.  She is eating like crazy and getting mad when she has to wait for her food.  I just cannot understand the swing.  How she goes from not putting one piece of food in her mouth for almost two months and vomiting every night to yelling at me (no matter how cute she looks) from her high chair because I put the kids' food in front of them before giving something to her.  It blows my mind. 
The other thing that blows my mind is that this kid is the healthiest immuno-compromised kid I know.  I know more of those kids in this life than in my former life.  Nettie had a terrible stomach virus, little Chris now has strep throat and LillyAnna is the happiest I have seen her in a long time... a very long time.  She is continuing to vomit but not as frequently and in smaller amounts since her Humira injection Friday.  I gave her the last dose of steroids yesterday.  Her bloodwork last week looked great.  Unfortunately, for some wild and crazy reason, she developed some papules and a pustule today.  I will NOT be pushing on them:)

I know these do not look that bad especially comapred to the pictures of her original lesions at their worst but to me they mean that we do not have her disease under control and if this medicine does not work, we are running out of options.  And the bottom line is her body is attacking her skin and who knows what else.  Every time I think I understand what is happening or I think I see a patterm, something happens to throw it off.  Dr. R and I suspect that her disease will act up whenever her immune system has to work hard, for example when she is fighting off possible strep or when she is cutting teeth (four coming in right now).  I am very happy she is pleasant.  Even though she gets mad whenever I touch her 'boo-boos' and she is saying that they hurt (she points to them and says owie), she has been very happy and it only takes advil to make her feel a little better.  I can handle that. 

Cloudy with a Chance of Meatballs

If meatballs started falling from the sky I would not be surprised right now.  LillyAnna's blood work looked very good this week.  She is all cleaned out according to her latest x-ray and we can do maintenance support for her bowels.  We saw Dr. R this week and are able to stop Lil's current dose of steroids after tomorrow.  We had two whole nights where Lil did not vomit and slept through the night for the first time in months.  On Tuesday, which was ten days from her last Humira shot, she began throwing up again at bedtime.  Since the Humira Friday, she has not vomited.  Yesterday she had probably the best day I have seen in a very long time.  Other than cutting a couple of teeth and needing a dose of advil, she was happy and hungry.  Last night she happily munched on a plate of spaghetti and meatballs for about an hour and then had a cookie!  Again, it is obvious to me that she has starting eating in earnest even though none of her medications have changed but her disease is in control for the most part.  I spoke to Dr. R about this and he agrees that her vomiting is related to her disease somehow but we do not know how.  It is not worth putting her through any tests (not that there is really much we have not done) because our course of treatment would not change at this point.  He said he really wants to see what happens as we remove the medications she is taking and see what happens but rhuematology was adamant that she stay on the Humira for a whole year after we see no disease activity.  Because she is eating and drinking so well I have stopped giving her the Periactin.  This way, when we need it again it will have the affect we will need it to have. 

 

Of course, the two nights LillyAnna slept Nettie was up most of the night and as many of you know ended up staying in the hospital for a few days.  Antoinette has always complained of stomach upset/pain.  Due to this and her slow weight gain, her pediatrician and I are getting some tests done to figure out what is happening.  In the midst of this, Nettie got a stomach virus which exacerbated whatever is going on and she quickly became dehydrated.  Needless to say, she was not happy about it but I think it helped that we were able to stay on 3F where she knows most of the nurses and doctors.  They are just so wonderful there.  





 

While I was there I had a chance to talk to the ChildLife Therapist with whom Chis and Nettie work.  We discussed how life for siblings of chronically ill kids is just different.  While most kids play house, mine play 'sick babies' and half of the doctors kit they own is made of actual medical supplies.  But that is only half of it.  Little Chris takes on so much worry about LillyAnna.  While Nettie was in the hospital, she and Chris slept apart for the first time since they were born.  Then he had the pleasure of coming down with the virus Nettie had and was up about nine times last night.  Being Chris his fever was gone, he ate and was up playing all morning.  Two down, three to go! 

 

She picked this outfit out herself!

 

Whoever You Are

I realized something today.  A phenomenally large group of people separately mentioned to me all in the past three or four days that I do so much for other people.  When people you love, respect and know you well all say something to you that is similar in such a short period of time you should pay attention.  The funny thing is I feel like I am not doing enough for other people.  I did not get my best friend a birthday present, I forgot to call someone who just had surgery, someone I love  just lost someone very close to them and I did not even think to call them for three days in a row.  I could make this list go on and on.  Probably the most difficult is that I feel like I am neglecting my husband.  I seems as if I just don't have any emotion left.  Having to watch your baby go through something so painful and actually be a part of that pain kills something inside of you.  One of the reasons I started this blog was to write about LillyAnna's dressing changes.  You may want to stop reading here if you have a weak stomach.

 

 

You have seen the pictures of LillyAnna's lesions.  They went all the way down to her muscle.  I once asked the dermatologist how painful they were; I began by stating that the most painful thing I could imagine is a serious burn.  She said this was much, MUCH worse than a burn.  By the time we left the hospital Lil had had a total of 30 lesions.  The biggest was her leg.  Every other day, we would have to change her dressings.  Finding dressings that will stay in place, prevent infection and provide some kind of comfort was not easy.  The dressings we ended up using were slightly sticky.  Every other day, I would spend an hour or more preparing for the dressing changes; getting out and cutting various sized bandages, sterile water, gauze pads, any ointments we were using, extra blankets in which to wrap her to hold her down, and more.  Most importantly I would line up the things we hoped might soothe her: pink and green soft blanket, pink diamond ring rattle, cell phone with video of Poppop and Mommom singing, Monsters Inc. ready on the hospital TV... Even though she was already on Morphine every four hours we had to prep her with extra medications.  I am not even sure any of it mattered because it did not stop her screaming.  Timing this was sometimes difficult because the amount of people who attended these sessions numbered anywhere from six to twenty.  It took at least six of us to do it.  She was 9 months old when it started.


We would start with the PICC line lesion because the IV team had to be there (this was something they had never dealt with before).  The PICC actually caused the lesion and made it worse.  PICC lines go straight to the heart and are so sensitive to infections that can kill.  Because of the risk and the pain of having a tube going into and laying on this lesion, we did this first. 

We started by papoosing her.  She hated it and this is when the screaming would began and the little door that allows feeling into and out of my heart would have to slam shut.  As the nurses held her down, my job was to ineffectually try to soothe her.  After about a month I would sometimes help with the actual changes.  We held her tiny squirming body still while we peeled off this slightly sticky bandage and shot sterile water at her completely open wound with a huge syringe.  It was important to peel very very very slowly so that new skin would not detach.  We were not always successful.  Once they were off, we all examined them and take pictures.  In the beginning we did each one individually because the air hitting them added to the pain but after awhile we did them in groups.  Then back to holding her down to replace bandages and rewrap, cover with babylegs and clean up the bloody mess.  The whole process (excluding set up and clean up) took anywhere from one to two hours.

Everyone involved fell in love with Lil and did an absolutely amazing job, I have never seen anything like it.   Tom would even warm up the sterile water so it would be less of a shock to her skin.  Afterwards they would hand her to me so quickly.  And rush to get me anything that would make her feel better.  They almost tripped over themselves to settle her and me in.  But sometimes I felt like, why are you giving her to me?  I can't fix it?  I can't take away her pain?  You did this and I helped.  She does not want me either.  Sometimes in the middle of it she would simply fall asleep for a few minutes.  I think she was possibly passing out.  I was terrified that she was going to develop post traumatic stress disorder. 

I recently went to a funeral and met a psychologist who worked in a NICU.  She was asking me about Lil's disease and at one point mentioned dressing changes, she simply said it must have been terrible.  That is not usually a topic people think about.  I looked up at her and met her eyes.  She leaned over, put her hand on my arm and said, "I am so sorry."

These memories haunt me.  I remember every second of it.  I will never forget what it felt like to hold her down and cause her so much pain.  I replay it in my mind when I cannot sleep at night or when I am rocking her before bed and she is so peaceful.  I want her to know how very sorry I am for hurting her. 

I think that maybe I have been putting so much pressure on myself to do things for others because I have to prove how strong I am.  I have to prove it to myself, I have to prove it to you, I have to prove it to that baby.  If that strength falters, if I show weakness, then maybe a weakness will actually appear.  If that happens, it will grow and that strength which I have used as a shield around my aching soul will crack and crumble in on itself.  I will be exposed as a fraud.  I am weak.  I hurt my own baby.  I hurt her and I held her down while others hurt her.  I am a piece of shit and I don't deserve your respect, kind words, actions or even thoughts.  This strength is not real.  I am a fraud. 

I Love You Stinky Face

The past couple of days has been pretty awful.  Not to sound like too much of a Wendy Whiner but it just does not seem fair.  For almost a week, LillyAnna has been vomiting at least five times a day.  Now that we have begun 'cleaning her out' she is also pooping.  I am glad we are getting it all out but stinky does not even begin to describe it!

And of course, through all of this I offered to make my sister her birthday dinner.  I know you might think that is absolutely insane but let me explain.  My sister, who turned 31 years old today actually, has been in a nursing home for years.  She is my only sibling and my mother passed away three weeks before the twins were born.  My sister just recently left the nursing home in the hopes if creating a better life for herself.  Because peoples' problems still exist even when you have a chronically ill child, I want to support her as much as I can.  And so, because the only thing more difficult than taking three kids out to dinner (one of which is puking, pooping and has to take six vials of medication on Friday nights) is cooking dinner, I offered to do it.  I offered before the poop fest began and it probably wasn't a good idea.  I told myself that all morning while I was running around trying to find pediatric enemas and waterproof pads to protect my carpets, holding a screaming fussy baby and cleaning up any number of messes all the while trying to hold back my own tears, anger and frustration.  As any good hostess knows, you never leave everything until that day so almost everything was already made which helped.  In the end, it turned out beautifully.  The food was delicious, my cake was awesome and the company was more than pleasant.  Lil perked up and the twins were so exhausted by the end they happily went to sleep. Everyone who came was a huge help too.  My aunt came early to occupy and dress kids, my cousin and sisters ran them around and loved them to death, I had a dishwasher and cleaner uppers... It all worked out so well.

I just felt so helpless, frustrated and alone watching her go through this mess.  She would choke, gag and finally vomit, squirm around and sit up (it reminded me of mornings during my college years) when I knew all she needed to do was throw up, watching her try to push and push to get it out or try to drink only to vomit in her mouth each time.  And on top of it all she was miserable.  As I have said before, that is what gets to me the most.  This baby has been through so much and again I have to mention that I know there are babies and kids who have been through worse but this is my baby and her reality and it has not been pretty. 
She is still not cleaned out as well as Dr. R would like so we are going to continue with the Miralax.  I did have to give her an enema yesterday (boy that was fun).   However, last night she did not throw up and seemed to be feeling much better and this morning she ate some breakfast potatoes and was blowing kisses (see video below).  I am not sure if it was the Zofran (which is an anti-nausea medicine that she gets on the nights she gets her Methotrexate) or the cleaning out but she did not throw up!  She went right to sleep and I was able to lay her in her crib peacefully for the first time in weeks.  I wish I could describe the relief that washed over me.  My strong desire to shove Ben and Jerry's into my mouth each night after being so careful about what I ate all day was one clue that I was slightly stressed after getting her to bed.  When I was able to lay her down with her body relaxed and quiet, walk out of her room and feel confident that she was going to stay quiet I felt like I could finally take a deep breath. As it turns out, those breakfast potatoes are the only things she ate today. Oh, and one tiny bite of meatballs. But she drank and was happy and is now sleeping.

The Giving Tree

Enough said

Full, Full, Full of Love

Well although Lillyanna is certainly full of love, she is also full of something else right now. We ended up having to go over to AI today for bloodowork and X-rays. Lil bowels show "Nonobstructed, moderate to marked amount of stool." Which basically means she is full of poop. I looked at the X-ray and could see that she was backed up to her stomach. I would be vomiting a lot too! So we need to clean her out. We can try to do it at home (thank you God) but Dr. R said "cover everything in plastic".  Well, we have been drowning in vomit for so long; same thing different medium! My biggest concern is making sure she drinks all of the laxative, she is not really big on ingesting. 

Her blood work looks good so we can continue to decrease the steroids and begin to take her off of them. This is very good news. She has been on steroids almost constantly for about 9 months. No one really knows what that is doing to her little developing body. 

So that will be my weekend:) I will keep everyone updated (but not too many details).

Good Morning!

A Bad Day for Voodoo

I just have no idea what is happening right now. Lil's vomiting has increased tenfold. I mean literally, she has vomited 10 times today and I am just now putting her to bed
so who knows how that number will grow. To follow suit, Lil is not following suit. With all this vomiting, she is trying to eat and drink, something that was a joke last month. Chris said she was throwing up while trying to put food in her mouth at dinner. Stomach virus? Possibly. Just too easy an answer if you ask me especially with the constipation issues we have been having and her history. Her lesions look good but she keeps saying they hurt. For now, we wait and see. Oh...and clean up a ton of vomit.

PS- for Jason: Good-bye Maamaa. You were a special lady who helped to raise a very special man. We love you Jason.

Love That Dog

I have such a love/hate relationship with my iPhone. 

I hate that it sucks me in when I should be paying more attention to my kids.  I love that it helps me stay connected with people who are important to me.  I love that I can take pictures of virtually anything I want to whenever I want to.  I hate that I am tempted to post them to facebook.  I  hate having to make sure the thing is charged.  I love that I can answer just about any question those twins can think of in seconds. 



I hate that I now bring it in the bathroom with me instead of a book for my 'private time'.  I love that as I sit in Lil's room for hours at night waiting for her to throw up or waiting for her not to throw up I can do just about anything I want: shop, play Angry Birds,talk to friends and family via text, research information.... For the past few nights, I have been in there until about nine or ten o'clock at night as LillyAnna's vomiting has increased.  I wish I knew why.  I thought the Humira would help.  Her lesions look pretty good (they have their swollen and red periods but no pustules).  She has been extremely constipated so that could be part of the problem, her stomach is like a slow draining sink and any back up will require some special talent.  Thanks to Dr. R I think we have unclogged the pipes so maybe tonight will get better.  I wonder if God is getting tired of hearing that prayer every day.  Maybe I should switch it up.  I do thank him that we are not in-patient, that I no longer have to do dressing changes, that I have a happy baby and healthy family; but my washing machine and I are hoping for a vomit break too.

 

This is how she fell asleep last night.

Quick Update 2

So many things happened this weekend; some wonderful and some awful so I will make this brief in the hopes of getting some sleep!  LillyAnna is still throwing up each night.  Until today her lesions looked great.  For some reason, God only knows, they looked slightly puffy and red today.  I was expecting the Humira to give us about a week of calm lesions and maybe even a vomit break but no such luck.  She is also having some serious constipation issues (think of Thing from Fantastic Four trying to escape through her butt- poor Lil!) despite an increase in Miralax.  I have no idea what that is about but I am wondering if it is contributing to the continued vomit.  Hoping to see Dr. R if this continues but if nothing else just to check in.  He is good like that, he supports me in my "enthusiasm" when it comes to Lil:)

The True Story of the Three Little Pigs

It is all about perspective.

When LillyAnna will only eat one slice of American Cheese in a twenty four hour period, I remind myself that she can eat unlike my cousin who up until two months ago only used a feeding tube. 
When LillyAnna throws up at night I think of the many kids at AI who throw up all day.
When LillyAnna takes this medicine as one of her doses per day, I remind myself of a friend of ours whose IV tower has about 10 pumps attached to it on a daily basis and on bad days needs two IV towers.
When LillyAnna cries out and grabs her 'booboo' as she is walking, I think about the kids I see who are in wheelchairs and will never walk.

When I think about the idea that this could have happened to my daughter Antoinette (AKA Cybil, Drama Queen, The Princess and the Pea...), I am thankful for LillyAnna's high tolerance for pain, ridiculously positive attitude and infectious energy. 

I am very hard on myself sometimes.  Last night when I finally sat down to dinner at 10pm after starting her bedtime routine at 7pm because LillyAnna was choking and gagging for two hours and then finally threw up, I felt so awful.  I just don't know how else to describe it.  I remind myself of all of these things but it just does not get me out of the doldrums.  Then I feel guilty because I have so much for which to be thankful.  Like that fact that I get to hear my baby's laughter when so many children's laughter has died right along with them.  I would think that almost everyone has these nights.  The nights you yell at your kids and then feel awful or when you saw your ex and said something you know you shouldn't have or when you experienced something that is laying across your soul like the heaviest blanket and you just can't wait to fall asleep simply so that you do not have to think about it anymore.  And you know your blessings but they are buried under your sadness and exhaustion.  It is good to keep things in perspective but it is also ok to feel sorry for yourself sometimes.  An old friend of mine, Mary, once told me that she allows a ten minute 'feel sorry for myself' period a day.  When that 10 minutes is up, that is all you get.  No matter what is happening in your life, it is real and difficult to deal with even if it is not as bad as what someone else is dealing with.  So I follow a simple mantra; as Dorey says, "Just keep swimming..."

 

 

  LillyAnna helping me clean up her vomit last night.

After the Great Pustule Popping Incident, that darn pustule went away.  Imagine that! It is my opinion that Lil is cutting two teeth this week and her disease is acting up in repsonse to that.  Before lapsing on the Humira for two weeks over a month ago, Lil was following a pattern of her disease acting up on day 10 and then calming down again with the Humira.  We will have to wait and see if that happens again.  Today's blood work looked almost exactly as it did last week which is good enough for Dr. R to say we could wean the steroids a little more (to 0.6).  I would love to know what it looked like in the beginning of the week when her lesions did not look so good but it is what it is. 

No, David!

I am a little obsessive about Lil's lesions. I look at them more often than necessary noting size, color, shape, and even feeling. I rub them with lotion and Aquaphor. Sometimes I poke them to see if they hurt. In my defense I have two things to say. One: the plastic surgeon told me to massage them five times a day with Aquaphor, that requires some finesse! And two: I feel like an idiot if I do end up having to visit the ED or the good doc and they ask me questions (they ask specific questions) and I can't answer them! So....today I was investigating and that big pustule popped. I was so shocked, I just stared at it. When I told Mee-maw and my husband, the expression on their faces was enough to wither an spring flower. When I told Dr. R, he very bluntly put me in my place by saying "stop pushing  pustules that can get infected." Good point. Looks like David and I are in the same boat.

A Week In The Woods

Or I should say a week out of the woods only to go right back in...  Last Thursday (before we left for the ski trip) was the first night LillyAnna did not vomit in months.  The next day her eating and drinking picked up dramatically and I was able to go away for a few days without worry.  Unfortunately, this Thursday she began her bedtime vomit ritual once again.  Not surprisingly, over the last two days her intake has decreased.  For example, in the last 12 hours she has only had 6 ounces of milk, two slices of American Cheese and half a strawberry.  She has a large pustule in the large lesion that is very sore.  I know this becuase when I do Dr. R's finger dance across it, she cries out.  A couple other lesions have small papules.  This is especially frustrating because last week's blood work looked good.  The sed rate was down from 9 to 7 and CRPs stayed below 0.5.  Her white blood cell count was up from 9.7 to 11.5 but his marker is generally the least informative for us because (from my crude understanding), your white blood cell count can rise for something as innocuous as fighting off a cold or cutting a tooth.  For us, it is also the usually the first marker to rise when there is trouble on the horizon.

In this picture you can see the two very small papules above the big lesion and the large, swollen, red bump on the side closest to the purple pants. She would not sit still for this pic so it is hard to see!

The good news is that she has been VERY pleasant.  This is my saving grace.  I can deal with some dry diapers, I can give her medicine for the pain, coffee gets me through the days after sleepless nights, and I can even clean up vomit every night without getting too worked up.  But when she is miserable, it turns my world upside down.  It is always frustrated to deal with a fussy baby no matter how loved but the helplessness and frustration that accompanies a fussy sick baby can put anyone over the edge.  You know this if you have ever dealt with a baby that has a cold, the stomach bug or (God forbid) colic.  It is torable for the ten to fourteen days of a cold, the few months colic can last will put you on the edge of the cliff but the amount of time we have been dealing with this in conjunction with amount of unknowns involved is getting us closer and closer to going over. 

Being close to family and friends is what keeps us on solid ground.  Sometimes it is in the seemingly mundane time spent with people that can be most precious.  One Sunday we loaded into the family truckster and trekked acoss the bridge to my Aunt Tina's house.  The girls spent some time in her bedroom trying on dresses for an upcoming event my aunt is attending talking about whether it is necessary to wear hose for a formal event, if chunky shoes are ok to wear with a strapless dress and a few other topics that are best kept between females.  At some point a long-time friend of the family stopped by and joined us.  Later, we stood in the kitchen snacking on leftover pizza and sharing ideas and thoughts on my cousin's upcoming wedding and bridal shower.  Nothing of note happened or was discussed but I could not help but reflect on the connection women have that is almost tangible.  I am sure there are men who could speak to a similar feeling they may get on, say, a golf course or at a sporting event.  For me though, there is a kinship between women that ebbs through space and time; the way women can connect with strangers, understand each other's hurts and trimphs without a word.  I felt the power of it that day. 

Last night we continued our journey of growing through getting to know my adopted husband's birth family.  Having a get together at my house was the only way to do it although it caused me no small amount of anxiety.  I am pretty comfortable with hostessing at this point in my life but I really wanted this get together to be special.  At one point, I took a minute to stop and take in what was happening around me.  I looked up and saw small groups of family who had not met until that night sitting together, laughing, playing with the kids and having a genuinely good time. 

Lastly, we said good-bye to a great friend of my grandmother's this week.  As I have mentioned before, my grandmother and I were not just family, she was also my best friend.  Having spent so much time with her when I was a child, her friends became my friends or at least the group of people I spent a lot of time with and thoroughly enjoyed.  This could explain my addiction to The Golden Girls (possibly obsession) but I think it also explains my appreciation for people of all ages and backgrounds.  Zizi Joanne was one of these people and I loved her to pieces.  She was eccentric and fun and brazen.  I brought LillyAnna to her funeral and was able to share my beautiful baby with people I have not seen since I was a child myself.  They remembered my grandmother as she was to them and it broke my heart in much the same way as when we lost her. 

It has been an overwhelming but wonderful couple of weeks.  It seems too obvious to say that going through all of this with LillyAnna has opened my eyes and that I have a new appreciation for how to enjoy this life in its awkward stages as well as the beautiful.