Welcome to Holland

As Thursday approaches us with much anticipation, I cannot help but feel a flood of emotions ranging from complete joy - to absolute fear.

It was 6 months ago that we learned about Harlie's chest mass. Since that time, the story has grown much longer and continues to change everyday. We have been on a roller coaster ride since that day and I am absolutely sure this is just the beginning of what will be the ride of our lives.

A very good friend said something to me today that I really appreciated. He reminded me to try and take a moment (during these next 48 hours) and think about what it means to be bringing home our little girl for the first time. It has been so easy to be distracted with the medicine, with the logistics, with the traveling, and with the constant fear of what the future holds for us. So for now, I am going to try and push those things aside and enjoy some time with my daughter.

Tom

ps. I apologize I have forgotten who, but someone during those first few days told us about this letter. I want to share it with you all.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
by Emily Perl Kingsley

Home Stretch

Harlie was awake a lot today. I am anxious to see her act more like a normal baby. I spoke to the nutritionist today and they are upping the concentration of her milk from 24 calories per ounce to 27. Hopefully that will help her put on some weight. I also found out that we can start to try to feed her by mouth this week. We had to wait because one of the things that goes with what she has is a T-E Fistula. That is when there is a connection or bridge between the esophagus and trachea. And when you swallow, it can go into the trachea, which is bad. But I was told that she does not have one, which is great. I am really hoping that she can eat by mouth without any problems. I know that it will be a gradual change - I don't think she has the energy to feed normally yet. But, it would be really nice to remove the feeding tube soon - anything to make things more normal. Plus, they can develop oral aversions when they don't eat by mouth.

So, we'll see how that goes.I must say that I cannot wait to be able to get up and not have to drive 2+ hours to see Harlie. I am SO over this commute. The mornings aren't so bad - it is the afternoons that kill.

Well, tomorrow night we are taking Murphy trick or treating for the first time. I hope he likes it. I'm sure that once he realizes he gets candy, he'll be all over it (just like his mama). Well, it's getting late. Have a Happy Halloween!!!

Wendy

Today was another good day with Harlie. This was the only time I was able to go see her this week. Christy needed the break and I was able to take the time off.

In short, next Thursday looks good for bringing her home. The basic plan is for us to get the equipment delivered on Wednesday morning and then get some training on it. Christy and I will then leave for DC for the night. We will be "rooming in" at the NICU. This will allow us to care for her throughout the night. Christy is getting better and better are caring for her. I am watching her for lessons. On Thursday we will be getting her ready to go to Richmond and gathering the 100's of pages discharge paperwork. Just before we leave for Richmond, the plan is to have Harlie baptized by the hospital chaplain in their chapel. That's about it for next week.

Christy will be continue to get trained next week and hopefully I'll catch on quickly. It looks like we will have a few days of private nursing initially when we get home so that should help on those first few days home.

On a very sad note, we had to leave the hospital Friday night and go to the vet for our cat Wendy. Unfortunately, Wendy had liver disease that got bad real quick. Unfortunately, we had to make the decision to put her to sleep. May she rest in eternal peace.For those of you who never met Wendy, I have a few recent photos of her in the album (putting up with Murphy's love...). She was a great cat who put up with alot of grief from her sister Annie and more recently Murphy. Wendy was always known as the fat one and she was as lovable as she was large. Christy has had Wendy for 13 years. She named her Wendy after "Wendy the Whiner" as all the kitten did when Christy met her was follow her around and whine and whine til she found herself a home. We will miss her dearly.

Take care and thanks for checking in.
Tom

Short one

Well, Harlie had a good day. She seemed very comfortable and slept a lot. Regarding her weight...I was told that because of her heart defects, her heart is having to work harder than it should. Which means that she burns more calories. That explains why she was so tiny and they told me to pretty much expect that she will be a more petite baby - at least until her heart surgeries are behind her.

But, they are going to get us a growth chart plan or something for her so we know what to expect. And they might look at other options to get her more calories. So, we'll know more later.

Well, to add to our currently hectic lives...I had to take Wendy (my fat cat) to the emergency vet tonight. She is pretty sick, and, technically not fat anymore. Her back legs gave out on her and she couldn't walk. The vet said that she is jaundiced and dehydrated. So, they are keeping her tonight and running some tests. Hopefully they will be able to let me know something by morning.

Well, it is late and Tom and I need to get on the road early tomorrow, so I need to cut this one short. I should have more info in the next few days.

Talk to you soon,
Christy

One month old!

So, one month has gone by. I'm not sure if I think it has gone by really fast, or really slow. I held her for a while yesterday and she was awake most of the time. It is really nice to see both her eyes open and alert. I am a little disappointed at her weight gain. She needs some fat on those bones! She seems to go up and down a few ounces, bouncing between 5.3 and 5.6. This morning's weight is 5.3, her birth weight.

They have a nutritionist who monitors that and they are fortifying her milk to make it have more calories. So, hopefully we'll start to see a steady rise soon.I spoke to the case manager yesterday. I think since we can't get her transferred closer to Richmond, we are going to try rooming in. They have a room right there in the NICU that is all set up for parents to sleep there and practice with their baby with the comfort of having nurses on hand. So, I think we are going to try to do that and then take her home as soon as we can (maybe next week). A lot depends on the equipment delivery, obviously. She still has some tests to go through, too. So, hopefully they will get them scheduled soon.

Well, I guess that's it for now. Talk to you soon,
Christy

My first trach change

Well, I had a big accomplishment today. I changed her trach.

I am very proud of myself. It wasn't as bad as I thought. Now don't get me wrong - it is definitely unsettling - but I learned that we can do this.

For those of you that don't know what I mean by "changed her trach"... it means I took out the tube that allows her to breathe from the hole in her throat, and put a new one in. It is kinda scary. So, for me, today was a big day.

I think I have now done everything at least once. No news on a discharge date or discharge plans. I think they are still working on getting all the equipment straight. We need to get the equipment and supplies delivered, set up in her room, and get trained on it all before we can bring her home. So, I don't see it happening this week. Maybe next.

Well, today was a long day and it is late, so I have to make this one short. I hope you are all well. Talk to you soon,
Christy

Aunt Mimi (Mandy) met Harlie today

What a difference a few weeks make! Grandma, Pap-Pap and Aunt Mimi went to DC today to visit with Harlie. We had her all to ourselves because Mommy and Daddy needed a day of rest!! I am happy to report that Harlie looks incredibly strong and rested. Continuing all her recovery like a little trooper.

She had an absolute wonderful nurse taking care of her today, who shared with us portions of her care and help us to understand what will be needed when Harlie goes home. Of course, let me tell you that everyone at the Children's Hospital have been great.Today was the first time Aunt Mimi met her new niece and like the rest of us, is extremely proud of our little girl. Just for everyone's information...Harlie likes her pacifier and hates poo-poo and pee-pee diapers. Such a little princess already!!Our hope is that soon Harlie will be home with Mommy, Daddy and Murphy. Plans are being made for her discharge as soon as all can be arranged. Her room at home is all ready for our "princess" to arrive and we thank God everyday for allowing that to happen. Again, thank you for you support and prayers.
Grandma Bowser

Now What?

Well, it appears that Richmond's Children's Hospital is full. That is, the Transitional Care Unit is full. We haven't had a chance to discuss any other options as of yet, I have only heard this via email from our social worker at CNMC. I guess we will discuss that some time on Friday. On the Harlie front, she continues to recover from her little surgery on wednesday. Christy was able to help the nurses do a few of her care items. Some are simple, some are intimidating. Bottom line is we are responsible for her airway and that is a little daunting.

Gonna get ready for work now.
Tom

Change of Plans - Maybe?

Well, Harlie had her surgery today and that went well. So, that looks like that might be it until her big heart surgery at about 6 months. So, instead of us just bringing her home from DC, they are looking into transferring her to Children's Hospital here in Richmond first. They call it transitional care or something like that. Basically, it will allow us more time to become comfortable with her day to day care that will be necessary. And allow us to get fully set up at home with equipment/supplies/etc.

The Case Nurse in DC will be working on that tomorrow. If Richmond's Children's has a spot open, then it could be within the next 4 or so days and she'll be here in Richmond (only 15 minutes away...in traffic!) That's a big deal to us, can you tell?

Well, that's about all the news from today. We/them started working on transferring some of her follow-ups to Richmond Doc's. That sure will help with the traveling that is hard enough on us, yet alone Harlie.

Thanks again for your continued support.
Tom & Christy

We can hold her!

Well, yesterday I finally got to hold Harlie. It is still a little intimidating because she is still connected to everything - but it was wonderful anyway! They did the first trach change yesterday, too. So, that seems to be healing well. I learned how to suction the trach and have done that twice now. A little scary, but I can see that we'll get used to it with time and practice.

She has another small surgery tomorrow morning. And we're thinking that once she recovers from that, we'll be able to bring her home (maybe next week). They have started to get all our stuff in order in preparation for discharge, so I'm thinking that's a good sign.

Today she took a pacifier for the first time. It was wonderful to see her doing something a normal baby should do. It was actually quite a big deal to us - given that she's not had the opportunity to suck since she was born. Feeding her by the G-tube can have negative impacts on the development of her mouth motor skills. So we are hoping that if she will take a pacifier, that might help. Well, it is getting late. Talk to you later.

Back On-Line

Well it turns out that Babysites.com was doing system maintenance all weekend so we weren't able to update Harlie site. Anyway, as far as Harlie goes she is doing well. Assuming her last weigh-in was correct she is on the upswing with her weight. I visited on Saturday with Scott and I was able to play dad...change two diapers. Never thought I'd look forward to that...

This week should begin the training of Christy and I learning to take care of her needs at home. Too me it doesnt seem too scary, but i suspect that may change one we actually have her at home. But, I know we will do just fine. All in all, I think the end of the month still looks pretty realistic for having her home.

On a different note, Murphy and I went to the pumpkin patch on Sunday. Photos in the album at the front of the site.Oh yea, and the Steelers finally won!

Take Care,
Tom

2nd Post-Op

Harlie is recovering well from her surgeries yesterday. She's still on the ventilator, but hopefully they will be able to wean her off tomorrow. It will be one less thing to have her hooked up to.

Unfortunately, the ENT docs don't want her being moved around until after they do the first trach change, which should be Monday. So, that means that we'll have to wait a little longer to hold her. Evidently, things could come "disconnected" until it heals in place.

Then next week, the training begins. We'll learn how to change her trach, which will be done once a week, and of course, learn how to work her feeding tube. Right now, it's pretty scary, but I know that with some time and practice, we'll get used to it.

Well, Murphy needs a bath, so I have to go. Talk to you later.

The Day of Days

Well today became the day. Harlie had her 2nd and 3rd operations today. The trach and the G-tube are in. The operations went well with no problems thus far. The Doc's say she is doing fine and should be fully recovered by Mon/Tues next week. That's all great news. We should have her home sooner than originally expected.

I say this was the day of days as it was a pretty rough day for both of us. Without explaining the entire past 12 hours, lets just say the operations weren't scheduled for today as of last night. But this morning they were...And need me to remind the Doc's the importance of telling the parents that the procedure is complete before transfering the little one back to the PICU..1.5 hours later only to find her sleeping off the anesthesia 1 floor up.

And of course what day would be complete without a nail in the back tire!

Good Night and Good Day!
Tom

ps. we really are very happy the operations went smoothly and that our little Harlie continues to improve with every passing day. and of course, thanks for your continued support.

Just waiting...

Sorry I haven't updated the journal in a couple of days. The commute and days at the hospital have made me pretty worn out. So, I had to take today off to catch up on some rest. I felt really guilty about not going up there today, but the nurses told me that I won't be any good to her if I wear myself out. And they said that I have the best babysitters in the world right now, so I should take advantage of it and not worry. She is doing well. Monday was another good, quiet day. Today they moved her back to PICU. They are starting to prepare her for surgery again. I spoke to the ENT doctor today and they are trying to schedule her tracheostomy for Thursday, Friday or Monday. They are trying to combine a few procedures to lessen the number of surgeries. But getting 4 surgeon's schedules to coordinate is proving very difficult. We're crossing our fingers that it will work out.As much as I hate the thought of her having more surgeries, I know that it gets us closer to being able to hold her and bring her home. I am trying not to be too nervous about her trach (taking care of it, I mean). They said that a nurse will come to our house for so many hours per week to help us. Hopefully we'll learn quickly. Well, I suppose that's it for tonight. Thanks for checking in, and thanks for your continued love and support.

She's awake!

Another quiet day, and she just keeps improving. The nurse let me change her diaper, which was really nice. I know that may sound weird, but it was really nice to do something to take care of her. They have taken her off the meds that have kept her sedated so far. She still slept most of the day, but at the end of the day, she woke up. I mean, she opened her eyes and really looked at me. It was such a great feeling! Everytime she's opened her eyes before, it was just a drug-induced stare. But this time, she really looked at me for the first time.

I spend so much time worrying about everything and being scared, that when she looked at me - I just forgot about all that stuff and thought that everything is going to be okay. I wanted to pick her up and take her home right then!!! But I have to be a bit more patient. It sounds strange, but I can't wait till my little girl gets her trach. Hopefully we'll know the date soon. More updates later!

Saturday at the Hospital

Hello Friends and Family:I spent time with the little gal today. Both Grandma and I had a nice time with her. She was wide awake when we arrived and spent about a hour just looking around and checking out gramdma and dad. It was great to see those eyes moving around taking in the whole scene. As mentioned before, it's mostly quiet during the weekends. Nothing new to report although she is now eating like we do. She gets larger meals spaced out in lieu of a continous slow feed...at which point she fell promptly asleep...just like her old man!Big week next week. A few procedures to get her home and then the real fun begins."Say Goodnight and Good News."Tom

Grandma'a Days with Harlie

I am so happy to inform all you avid readers to Harlie's journal, that I Grandma Bowser was able to spend the last 2 days with our little darling! Each day Harlie is getting bigger and stronger. She only has an IV in for her medications, of course her breathing tube is still there (only for precautions-she is breathing all by herself) and getting more of mommy's milk everyday. We all are so pleased and happy for not only Harlie, but mommy, daddy and Murphy too! If Harlie could have picked her parents herself...she would have picked Tom and Christy! These two people have been thru some pretty tough times, but their love for their children has been amazing. Their love for each other stronger than ever. As Tom's mom, I may sound a little prejudice when I say I couldn't be more proud of my son. I have always felt that his choice for a wife couldn't have been better. I hope and I pray that thru the difficult times they may face in the future that they remain strong in their convictions and continue to grow in their marriage. They are truly committed to each other and their familiy.I have had the pleasure of spending two weeks as the babysitter for Murphy and now am ready to leave tommorrow to return to Pennsylvania. I will miss my "little man" but will be back when I am needed. Thank you for all the prayers, kind words and love you have poured out to Tom, Christy, Murphy and Harlie. I cannot express the gratitude I feel. Harlie still has many surgeries to face, the next one getting her trach and feeding tube in, hopefully at the end of next week. Then she can come home! With the hands of many trusted surgeons, all your prayers and most importantly, the Grace of God, we will get Harlie thru them.Again, thank you. Grandma

Day 10

Well, today was the first day of my new commuting routine. I think it will work. It was so great to go home last night and see Murphy and my house. It reminded me of who I am - it is amazing what being away for a month will do! I was afraid that I would forget how to be a mom or that he would forget - but we went right back as if I've never been away. (except we let him stay up late and eat M&Ms - which I would NEVER do normally!)

Well, Harlie is doing well. They transferred her to NICU today. I don't think that means much, just juggling around patients for space reasons. I think I'm going to like her there better because all the nurses are used to working around babies all the time. They said that I can bring in a mobile to put over her bed. That will be fun - it will be my first official purchase for her!

When I get down about all that she's going to have to go through in the next 5-7 years or so, I just remember that I get to go home and decorate her room. Already she's beaten the odds, so who knows what she'll be able to accomplish when she's bigger and stronger!

Well, thanks for checking in and have a great day!

We're Home

Yep, got here at 8:20 pm after another quiet day in the PICU. Harlie slept most of the day. All snug under a blanket and gettting lots of "Good Eats".

Looks like end of next week for the next round of surgeries. Then if all goes well, my little girl will be home a week or 2 (or 3) after that. Christy and the Mom's will be going up in the morning for the day. I'm going to work.

Well it's now 10:03 and I'm going to bed...my own bed!

"and that's the way it is."Tom

Nice and Calm Day

Well the title says it all. Today was simply that, nice and calm. Harlie is doing well with her post-op recovery. She had a few more lines removed today so she is looking less and less connected each day. Its a welcome change for us as we continue to monitor her progress.

Mom is also doing well. She is working on providing food for the little one and I think thats just great. Speaking of which, Harlie is on a slow continous feed now and hopefully her insides will do their job and we'll start seeing some weight gain during the next few weeks.

We decided today to leave the Ronald McDonald house tomorrow after our visit. Mom and I are pretty home sick...especially mom. The plan is for Christy to commute as often as she can (and I'll join her as often as I can). I suspect she will have a few volunteer travel companions as we try this approach. I think being home at nights with Murphy and sleeping in her own bed will be very good for all of us. Again, hopefully we can find a balance that works for our family.

Thanks to all for the kind words we get to read each night in the Guestbook. It is really good to hear all the support Harlie and the family is receiving.

"I'm Tom Holton, you stay classy Richmond"

Monday

Well, the family meeting has been cancelled. It was determined that it was too difficult to get all her doctors in one room (there are more than 10 I think). So, we are just going to start to meet with them one on one. Which, personally, I like better. The thought of being in one room with all those doctors was a little intimidating. They will still communicate with each other to determine the priorities of what she needs done and when. But now we can focus on one area at a time.

There was talk of removing the breathing tube (ET tube) today. They have reduced the air coming from the ventilator to practically nothing - so she is breathing on her own - room air. But, just a few mintues ago, it was determined that it was just too risky to remove the tubing at this time. Evidently, it requires a team to get her intibated, and it just isn't worth the risk. (clearly, we agree!)

I'm sure things could change, but it looks like in the next few weeks they are going to put the trach in and a feeding tube in her belly. I know we will learn how to take care of her - but it is a little unsettling to know that we are going to have to feed her through a tube in her stomach instead of, well, the normal way. I think our sense of normal, will not be normal anymore.

I am told that she won't be able to cry - well, make the noise I mean. And I have to admit that makes me sad. A mother should know her baby's cry, and I have no idea what it sounds like. And it makes me terrified, because what if she needs me in the middle of the night???? How will we know? They tell me that they have a way of communicating and letting us know that they need us. I hope they are right.

As far as how she is doing today, she is doing well. They were able to get all the swelling down. Now she looks REALLY skinny. They haven't been able to weigh her because of the ET tube, but clearly she has lost some weight. Just a few hours ago they finally started to feed real food for the first time (my milk). So, hopefully all will go well so she can start to pack on some weight. Well, that's all for now. Talk to you later.

Post-Op Day 2

She looked good today. The swelling is starting to go down. She looked pretty comfortable (all things considered) all day. The hospital is so quiet on Sundays. Her nurse said that they are going to try to let her breathe on her own tomorrow. They are reducing the amount of air coming from the ventilator. They are going to leave the tube in place, but try to cut it off so her lungs can work on their own.

I really hope we get some solid information tomorrow. The days are getting harder to get through with so many unanswered questions. Everything that is good or necessary, rather, seems to have a negative side effect, too. It is a constant balancing act. And one that if you hear too much - is overwhelming.