Naomi's Feeding Tube Placement and MRI

Naomi had her MRI and her feeding tube placed a week ago tomorrow.  The whole procedure went very smoothly.  We packed the car Monday night so everything was ready to go Tuesday morning.  We got up early and got out the door with no trouble.  Naomi had no more incidents of stomach flu and her fever was gone.  Everything ran like clockwork. The drive to Pittsburgh was uneventful.  Traffic kept moving even though we were coming in during rush hour.

We checked in and waited only briefly until they called us back to prepare Naomi for anesthesia.  Naomi was in a good mood.  Rob's parents came to the hospital to help with Lydia so we were able to stay with Naomi until she was asleep.  She had her MRI first and then went directly up to the OR to have her feeding tube placed.  The feeding tube placement went perfectly.  We were able to get lunch while she was under, which helped pass the time.  They called us back when they got Naomi in to the PACU and we were there when she opened her eyes, at which point they transferred us to her room.

 She had a lovely corner room with beautiful views of the city and the 40th Street bridge that was right next to a little sunroom.  We were on the sixth floor, which has a playroom with a large koi fish tank, a large outdoor balcony garden and a beautiful library.  As soon as she got awake in her room I was able to crawl in her bed with her and we snuggled for about two hours while she got awake.  She awoke easily and with no crying.  Then we snuggled more and watched shows.  By 630pm Lydia had had it so she and I went to Auntie Sarah's house to stay the night.  Rob stayed in the hospital with Naomi.  He took he for a walk around the sixth floor that evening and out to the balcony garden, which she loved.  She slept well that night and was up at about her usual time.  She and Daddy went for another little walk around the hospital and got Daddy some coffee.  She also pulled her IV out of her hand.  Not purposefully, but Naomi plays with her hands alot and it came out in the process of her playing with her hands while she watched more shows.  She watched a lot of shows in the hospital.  In fact, she told me with her flashcards when we got home that she liked being in the hospital and wanted to stay because she got to watch a lot of shows and she thinks she should get to watch that many shows at home too.

They started running pedialyte through her tube that morning to make sure it was working and that she tolerated its use.  It went really well.  Lydia and I got to the hospital around 930am.  Naomi was glad to see us, or at least me.   Lydia brought her a little pink and white stuffed cat named Duchess that Naomi really likes.  (She says kitties are her favorite animal.)  We were able to give her some juice bubbas and a Splash (her formula drink) bubba too. They ran a formula feed through her tube later that day and that also went swimmingly.  The process of placing and beginning to use a feeding tube is usually complex and drawn out but Naomi did so well that they accelerated all of it.  Jenn, Naomi's nanny, sent balloons and a little yellow bear. My parents came for a few hours in the early afternoon, then Rob's parents came in the late afternoon.  Rob and I were able to leave (with Lydia) for dinner, which was nice.  Then Auntie Sarah, Uncle Brent, Grace and Margot came to visit in the evening and brought Naomi two more ballons, a heart ballon and a My Little Pony balloon which Margot had to keep reminding herself was not for her.  Lydia and I got back to Sarah's house around 8pm and Rob stayed with Naomi again in the hospital.  She had another good night and woke up happy and like her usual self.  There were more walks around the hospital, Lydia got back down there around 10am and we continued to progress rapidly through the feeding tube protocol.  Rob's parents came again to entertain Lydia.  We were ready to be discharged by early afternoon and would have been home by 4pm except for a major SNAFU with the medical equipment company that was supposed to come to the hospital to deliver her feeding pump and other supplies.  As it was, we got home at 730pm, all drained and exhausted and the medical supply company had someone drive over the equipment the next morning.

It was very good to be home.  There were flowers and a unicorn pillow pet on the kitchen table to greet us from our lovely housekeeper Lisa.  We enjoyed our regular evening routine, other than Naomi's bath, and were all in bed at our usual time.  Unfortunately, all the time in the hospital and poor naps, etc, has both children off of their schedules so they are both waking up too early, but hopefully that will resolve in the next week or so.  Naomi still has some restrictions, she can't take a tub bath for another week, but after that she will be able to do all of the things she normally does.  We have been working on getting a routine in place for cleaning and maintaining her tube.

We spent yesterday over at Grandma and Poppa with all of Naomi's cousins and she took a long nap so she was off her usual eating and drinking schedule by last evening.  Normally we would have been stressed at how we were going to get all of those calories and all of that fluid in to her by bed time, but instead we just hooked her up to her feeding pump while she watched a show and she got everything she needed easily and without incident.  It was so completely not stressful at all.  We do need to be careful the next two months that it doesn't get pulled out and that the stoma heals well, so that produces a little anxiety, for me at least.  If it comes out within the first two months we have to go back to Children's Hospital Pittsburgh to have it replaced.  After that, we will be taught how to change and replace her tube so it will be less of an issue then.  We also have to wait two months to start the blenderized diet, at which point I will meet with a dietician to work out a plan.  So all in all, it went as well, or even better than we could have possible hoped.  And, we got good news Friday morning about Naomi's MRI results.  Her MRI is unchanged from the last one she had in July 2010, which was unchanged from the first one she had in February 2009.  So her brain remains healthy!  No atrophy yet, which we hope means we will have a lot more time to enjoy our beautiful Naomi just as she is and always has been.

Waiting to be called back for anesthesia

Relaxing back in pre-op and waiting to be called for her MRI

Naomi fell asleep waiting!

And stayed asleep while we dressed her in her scrubs for her procedures

All done!  Naomi in the PACU

Mommy and Naomi during their two hour post operative snuggle

Naomi out for her walk with Daddy Tuesday night

Enjoying the Pittsburgh skyline with Daddy on the 6th floor balcony garden

Relaxed and watching a show before bed

Asleep for the night with Duchess and Clementine

Nana and Grampy entertaining Lydia at the hospital

Naomi showing off her new feeding tube

Back home Friday morning getting in to our old routines

Naomi having her first home tube feeding Sunday night

Up close on Naomi's feeding tube.  Her cousins were curious.  Still some bandages from the laproscopic entry site and adhesive gunk stuck to her belly

Naomi being silly when I asked her to smile pretty for the camera

Just for fun:  Lydia found the iPad!  She seems to be saying "Ohhh!  What's this?"

Tomorrow is a big day (hopefully)

Tomorrow Naomi is scheduled to have her feeding tube and MRI at Children's Hospital of Pittsburgh.  It has been a rough couple days getting to this point.  Last week, Naomi had a cold that lasted for over a week and was put on antibiotics.  Inexplicably, even during the stuffy nose part of things, she was eating great - better than she has for 3 years.  She would eat her breakfast oats, and then yogurt for lunch, and then would eat a baby food meal (chicken and stars for example) for dinner.  She has not eaten that well in a looong time.   It made us rethink putting the tube in.  

Then the weekend hit.

I (Rob, Naomi's dad) woke up with a stomach flu on Saturday and was incapacitated for 48 hours.  Unfortunately, Naomi began having horrific gas on Saturday as well and then began having what we refer to as "blow outs" Sunday evening.  She has persisted through out the day today and stopped eating and drinking well over the last two days.  I haven't had much appetite either, except I know that I need to drink something even if I don't feel like it. It is hard to convey that to Naomi.  We talked to the hospital and unless she fevers the surgery should still be a go.

 We are obviously nervous, maybe more about what the MRI might show than the feeding tube.  Hopefully, we can get this done.  Nothing is easy.

Not Quite Five Months

 Naomi has biweekly sleepovers at Grandma and Poppa's that she just loves.  She's been going on her sleepovers since she was 19 months old.  Every time I ask her with her cards if she likes sleeping over at Grandma and Poppa's she says yes and she always says she wants to sleep over more.  She has her own room there and her own bed and gets lots of individual attention, which is just what she likes.  The other grandchildren even refer to it as 'Naomi's room' and 'Naomi's bed.'   I call after I think she should be asleep to ask how her evening went, and I call in the morning to see what time she woke up and what her mood is like.  I usually get good reports, which means she is having fun and her grandparents are having fun with her, which I like.  The sleepovers are not only good for Naomi, but they are good for us and for Lydia too.  We get a break from the stress and strain of caring for Naomi, we get to focus on Lydia and Lydia gets to be the center of attention for a while.  It also means we can do things that can be difficult with Naomi, especially with Naomi and her baby sister together, like going out to eat.  We can keep Naomi somewhat happy in a restaurant if she isn't overly tired, has already been fed, has her portable show player for distraction and entertainment, and isn't assaulted by loud or sudden noises.  It can be hard to choose a restaurant.  It has to be loud enough that Naomi's noise won't ruin the ambiance for the other diners, but not so loud that she will be frightened.  With Lydia, we have another variable to consider that we can't control.  If Lydia starts crying, Naomi will most likely start her shrieking, which means we will need to remove her from the restaurant ASAP.  Her shrieking is a lot like an air raid siren.  To describe is as ear piercing makes it sound a lot more pleasant than it really is.  I think we have attempted taking the entire family out to dinner once since Lydia was born and it was a major failure.  So after we dropped Naomi off for her most recent sleepover, we headed over to a restaurant for a dinner out.  Lydia was great the last time we did this, but not so great this time.  As she is getting older she is less and less tolerant of being strapped into her car seat.  She wants to be out and moving around.  So there was some unhappy squealing and we had to take turns eating while holding her and helping her play with her toys.  It was great, really.  It was so just exactly how it should be with a not quite 5 month old baby.  We were eating, playing with her, enjoying her, enjoying each other, laughing at her antics.  I felt quite happy.  Then I realized I felt happy and immediately felt guilty.  I felt guilty because Naomi was not there with us and therefore not a part of our happiness.  I felt guilty because if Naomi had been there we probably would've already had to leave because Lydia was being noisy and then we would have been disappointed and unhappy instead.  And I felt guilty because even if she were there and dealing with the noise well, having to manage a second needy child would have distracted us from enjoying each other.  Right now, in public, we can handle Naomi or Lydia but not Naomi and Lydia.  The next emotion I experienced was profound regret and sadness.  I thought back to what Naomi was like at not quite 5 months old and what our lives were like when she was not quite five months old and I wished that it had been like it is with Lydia how rather than how it was.  I wished that Naomi did not have batten's disease.  Naomi at not quite five months old was still mostly like an infant, though she had started doing some new things.  And we were very, very sad.  I was still in the weeping all day long, day in, day out phase.  So far, Lydia seems to be doing all of the things that she should be doing.  At this age, Naomi had started putting her hand on the breast when she nursed, she was bringing her hands together at midline, she was pulling up her legs and grabbing her knees, and she had rolled from belly to back one time.  She occasionally smiled to my voice.  She had not yet laughed, she was still pretty much visually unresponsive to anything but light, she showed no interest in toys.  She didn't reach for us.  She never has, in fact.  She wasn't cooing or squealing or using her voice to get our attention.  We had also by this time immersed ourselves in dealing with Naomi's diagnosis and lack of development.  The biggest thing we did was to enroll her in Early Intervention Services.  I was very anxious to get started with therapy in the hopes that I could maximize Naomi's potential.  On that point I was powerfully determined.  Determination is one of my better qualities.  And I was determined that  my baby would be the best that she could be.   So of course I was anxious to get Naomi started with professional therapists. I can't say enough good things about the Early Intervention program, or the providers and therapists that worked with us.  The entire program is designed to serve the needs of the child and the family in the most family centered way possible.  All of the therapy occurs at times and places where the child would normally be and when they are normally alert and awake.  Never at an outside site, never during a nap time, etc.  So Naomi's EI evaluation happened in our family room where Naomi and I spent most of our time.  It was a sunny late February mid morning.  I wanted Naomi to make a good impression (I don't even know what that means except that maybe I wanted the evaluators to think she was cute) so I dressed her in my favorite outfit of hers at the time.  Peachy pink fleece overalls with a little white with pink circle dots top and mutli-colored crocheted booties that she was given as part of her infant set with a hat in the hospital when she was born.  It was an outfit I had bought for her before she was born and I thought she looked deliciously cute it in.  I wore it on Lydia too, but it didn't quite flatter her the way it did Naomi.  Different baby.  I remember the evaluators putting Naomi through her paces and my heart just bursting with love for her...how sweet she looked, her darling facial expressions in response to various manipulations, the way I could see her trying to respond to the various activities.  I knew, from my endless research, that Naomi was still pretty much at the level of a newborn, but being told that her developmental level was 0 months old/100% delayed in all areas was still a painful shock.  No matter how realistic you are about your child's disabilities, or how much you have internalized your child's dismal prognosis, no matter how difficult day to day life with them can be, it never gets easier confronting the truth.  It a painful reality I have to come to terms with again and again, every morning when I wake up, and through out every day.  I am constantly thinking,  'Did this really happen?  Is this really true? Is this really real?  I can't believe this happened.  Why did this have to happen?  I wish this hadn't happened.'  And on and on.  Four and a half years later and it isn't any easier.  True, I no longer weep every day, but tears are all to frequent still.  And my mind still constantly searches for an 'out', for a way around this ugly truth and the ugly events I know the future holds.  Therapy started in earnest in March.  To say that Naomi's therapists were a huge part of our lives from that point until she aged out of the program at 3 would be a vast understatement.  They were some of the only people with whom I felt comfortable.  I didn't have to explain Naomi to them, children like Naomi are not strange or scary to them, they never tried to offer me comfort with unrealistically cheerful expectations, and they never sent me into the depths of despair with insensitive off hand comments.  They accepted Naomi as she was and tried their hardest to help her advance to her next milestone.  And at the same time, though I was bawling my eyes out every day, they were upbeat and cheerful in a way that was natural and soothing...not by pretending everything was fine, or assuming that Naomi was fixable or her problems curable, but by just being there and working with her in week in and week out in ways that were caring and compassionate.  As a stay at home mother in self imposed seclusion with a profoundly disabled child, in some ways they were my only friends and were most weeks my only social outlet.  And we were lucky to have the same group of therapists for Naomi's entire EI career...Marla Wyland for PT, SueEllen Foster for OT, Karen Anderko for developmental, Bev Moss-Oswalt for Social Work, Marilyn Neal for vision and, later, Becky Burns for speech.  They all were, and are, wonderful people and gifted therapists.   Naomi's favorite part of EI was Infant Massage.  She loved it, except for arms and hands, which is so interesting to me since Naomi became so extremely hand defensive as she got older.  So we started EI.  We also took Naomi on a trip to a Catholic shrine in Quebec City, Quebec, St. Anne de Beaupre.  Many people, including my mother, report miraculous cures after visiting this shrine.  (See newspaper my mother below.  You can click on the picture to enlarge it so you can read it.)  It is why my name is Anne.  So when we were given the awful diagnosis the first thing we thought, and what everyone in my family thought, was "We need to go to Canada."  It was a great trip and one we have fond memories of.  We drove.  12 hours each way.  Quebec City is on the St. Lawrence River and in March it is still in the deep of winter.  The amount of snow was incredible and the way the city dealt with the snow was fascinating.  They don't plow the snow.  They can't.  There is so much that there is nowhere to plow it too.  The non-plowed snow pack on the ground was as tall as I am...over 5 feet.  People and businesses erect tents over their driveways and walkways to reduce the amount of shoveling they have to do.  There were canopies 40 feet long from the front door of a house to the sidewalk.  And the city has snow removal vehicles that are like a combination of an excavator and a dump truck.  The snow is not shoveled from the roads, but excavated into the back of the truck and them dumped in the St. Lawrence, which was still frozen over.  Like I said, it was fascinating.  Being in Quebec, the city was French speaking and though there were people who spoke English there and in the province as we drove through it on the Trans Canada highway system, we usually had to ask for them.  We made no concrete plans for the trip either, other than that we would drive up over two days, spend two days in the city and drive back over two days.  We stopped in a hotel for the night when we got tired.  We used the car GPS to find a hotel in the city,The Fairmont Le Chateau Frontenac.  It's a beautiful old hotel, famous, and rather ritzy but because it was the off season it was inexpensive too.  We enjoyed exploring the city.  The food was unbelievably good.  Naomi was actually very easy at that time.  We could take her anywhere.  In restaurants we laid her on the other end of the table and she would sleep.  The trip was exactly what we needed at that time...the spontaneity, the freedom, the escape.  The morning of the second day in the city we took Naomi to the shrine.  It was an emotional experience, considering my family history and where we were in our lives with Naomi at that point.  My Mother had instructed me to ask for complete Earthly healing for Naomi but all I could pray was 'Please don't let Batten's disease take her away from me.  Just let me have her as she is.'  We both felt good after the visit.  When her diagnosis was rescinded 10 months later we wondered if it was the answer to our prayer.  When it was reinstated 6 months after that we were devastated.  But, Naomi is still today pretty much as she was then and I have to wonder if, in fact, my prayers were answered.  I wonder if I was granted the miracle I asked for.  If so, I am deeply thankful.  Naomi is very difficult to care for but we love her as she is and would love to get to keep her as she is.

Lydia out for dinner with Mommy and Daddy

Naomi in the outfit she wore for her Early Intervention evaluation.

Naomi in an outfit I made for her before she was born.  She was already enjoying doing her Big Kicks, just like she does today.

Naomi and I were sitting in front of a big double window in our family room that she loved.  

Naomi in a sweater knitted for her by my friend Annie.

Naomi sticking her tongue out, another thing she still likes to do today.

Naomi enjoying being dressed in only her diaper.    I hate the thought of a tube marring that little belly I've loved so much.

Playing with Daddy.

Naomi with a blanket rolled up to keep her from turning her head.  She repeatedly would  get her head stuck, keeping it only turned to one side until I intervened, and then keeping it turned only to the other.  So I kept a blanket on which every side she was preferring.  I also would lay her so the light from the windows was away from the preferred side to encourage her to turn her head on her own, and would go in when she was asleep and gently turn her head the other way.  This went on for months.  I worked really diligently at it because I didn't want to add torticollis to the list of issues Naomi was facing.  

Naomi draped on the arm of the chair.  This was my modification for belly time to strength her neck and practice head control.  Flat on the floor was difficult for her, and can be scary for the visually impaired, especially for a baby like Naomi who tended to keep her eyes downcast. 

More practicing.  I've always loved this picture.  She looks so sweet.

Naomi and Daddy on the couch, probably watching hockey.

Naomi and Daddy in a hotel in upstate New York on  our way to Quebec.

My pretty little baby girl.

The roofline of the hotel.

Mommy and Naomi in the hotel in Quebec City.

On our way in to the church.

Inside the shrine.  Flash  photography was not allowed.

Walking aides left behind by those cured of their ailments.

Daddy and Naomi outside St. Anne's afterwards.

The St. Lawrence River.

Quebec City.

Downtown.

Shopping District

The Fairmont le Chateau Frontenac

Naomi pulling up her knees!  This was new just on the trip.

More Big Kicks in Quebec City.

Love this picture.  There's the big window she loved.

I took a LOT of pictures.

My sleeping beauty.

Trying to strength her trunk and neck.

Naomi and Daddy relaxing on the porch on the first warm day of spring.

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