Monday, February 22, 2010

Appointment Recaps

It seems like there is always an appointment to go to lately! And Charlie is not a fan! All our appointments this winter have instilled a very strong fear of anything related to the doctors' office!

A week and a half ago we had our one year check up. We saw a new pediatrician in the practice whom we have never seen before. Charlie didn't really love her, but at least she took time to answer all my questions without making me feel like I was keeping her from something. As far as development and "normal" one year old progress, we are right on track and then some. Even though it seems like he is eating less and less and being more difficult about eating, he is still gaining weight, so there are no concerns. He weighed in at 22 pounds exactly; so he has more than made up for the loss while he was sick last month. I am not really sure what his length was because he was screaming and throwing a fit while we tried to measure him and my attention was on was him, not the result of the measurement! (I did just get him the cutest growth chart though from someone on Etsy and cannot wait to hang it up in his room!) We were given the go ahead on all the things that get held off until the magical first birthday - milk, peanut butter, and eggs. We have made it to the milk trials, but have stalled there for the time being (continue reading for more about this later in this post!). One year physical also means three shots and a finger stick to check the blood count and lead levels. It was traumatic for him to say the least!

Last week we had a checkup with Dr Ratner at the pediatric surgery office. Charlie still screamed and yelled even though all Dr Ratner did was listen to his lungs and press on his belly a little. Luckily he was able to hear enough to say his lungs sounded great. Charlie had puked twice in the past week (just straight formula coming back up again), which is very strange because Charlie has not been much of a spitter since he was released from the hospital. So, they increased his Zantac dosage substantially. He was at the bottom on the range for what is prescribed for a baby his size (0.8 mls 3x a day) and they increased it to the top of that range (2 mls 3x a day). Usually once a baby is a year old you can start thinking about going off the reflux meds, but Dr Ratner said he wants to see him symptom free for at least a few months before considering this. He wants to take no chance of doing damage to his esophagus by having acid pushing up into it. We will go back to see him again in August and will have our next chest xray done then.

After our appointment we went over to the NICU to say hi and let Charlie show off for his fan club. The hallway that leads to he NICU is lined with plaques and collages that families have made sharing their babies' stories. We spent a great amount of time reading about all the babies and their amazing, and sometimes sad, journeys. In the first days we scoured over them looking for a CDH baby and found none. So for the past year, making a frame to hang in the hallway has been in the back of my mind. Once I had some 1 year birthday pictures I took on the task and was very pleased with the result. We dropped it off when we were visiting and are looking forward to going back and seeing it there in that hallway for all to see.

So, that brings me to our latest appointment. Yesterday after his nap, Charlie had a rash all over his belly and chest. His skin is really sensitive, so we were not overly concerned and just kept an eye on it. By this morning it had spread to his face, back, and legs - and he slept horribly last night, which is very unlike him. So, I called the pediatrician's this morning and the nurse was fairly certain that it was probably just his immune system reacting to the shots he got at his physical. I guess it can take a while to show signs of that. But just to be safe (especially since we have a Synagis shot scheduled for later this week and it cannot be given if he is sick), she made us an appointment to have it looked at. Unfortunately, the consensus for now is that it looks like hives, some kind of allergic reaction. The only thing we have introduced at all in the past week was milk. Last Monday we started making his bottles from 2 oz milk with 6 oz Isomil. As I have mentioned in the past, Vince has very severe dairy allergies, so we always feared that Charlie could have inherited it. We had already been giving him yogurt and cheese though, so we thought we had no need to worry - though we still were cautious in introducing the milk gradually. So, the plan for now is to go back to using only the Isomil. At his 15 month check up they will draw his blood to run allergy tests to verify. If it definitely is a dairy, then at 18 months we can start using Eden Soy in addition to the Isomil. Since the appointment was just this morning we have not had a chance to look into the logistics of this, but I am assuming that this approach is meant to provide him with whatever nutrition he needs for development right now and for the coming months. While this turn of events does not really surprise me, I am hoping that when we get the testing done it will show that the whole thing was just a fluke.

Wednesday morning we go back to the pediatrician's for our next Synagis shot. Poor Charlie is going to start having panic attacks whenever I put his coat on at this rate! Spring is almost here though!

So serious!
Eating puffs and watching Baby Einstein is serious business!

"Mom, its too early for this camera stuff..."

"So, Dr Ratner says I can do whatever I want, right guys??
He said so, I heard him! And he gave me this sticker to prove it!"

Our collage/NICU plaque
Now there will be a CDH miracle properly represented!

"Aren't I so cute in my Valentine's Day outfit?
If only I could eat chocolate!"

"Man, I am looking smooth!"

Tuesday, February 16, 2010

Looking for connections for a new CDH mom

On January 3rd I received an email from Melissa who had just found out (at almost 36 weeks pregnant) that her son had CDH looking for some guidance as she struggled to get a clear understanding of what she and her baby were up against. Just three days later on January 6th, James was born and has been fighting like crazy ever since. He has already exceeded the doctors expectations, but is not out of the woods yet. Melissa is looking for information from families of RCDH babies. As Charlie was affected by LCDH, I am not very well informed about the differences that might exist for RCDH babies as they fight and recover. Is there anyone willing to help this new mom out? Please keep Melissa and baby James in your thoughts and prayers and let me know if you think you can help her out. Thank you!!

Wednesday, February 10, 2010

Birthday Pictures

The Happy Birthday Boy!

Slow and Steady...

So proud of our birthday cake!

Aunt Dee brought the best gift ever - - A nice shiny balloon!

Whats going on guys??


I am never eating Super Porridge again!

So worth it! :-)

Thursday, February 4, 2010

Happy Birthday to our Baby Boy!!

It is so hard to believe that an entire year has passed already! It is amazing to think back on all that we have accomplished and experienced in the past 12 months. And to look at how much Charlie has grown and changed is mind boggling! What a difference a year makes!

As a year old, Charlie, you:

- walk all over with great confidence
- can climb up the stairs (with someone close behind and with good traction on your feet!)
- love puffs, Kix, yogurt melts, dried apple bits, and other crunchy finger foods
- enjoy sweet potatoes, applesauce, yogurt with blueberries, cereal with bananas
- drink 3 bottles a day (about 8 oz each) and eat 3 times a day, sometimes with more success than others!
- have just started eating buttered toast and grilled cheese with some amount of success, but resort to throwing it on the floor when you have had enough
- giggle incessantly when people play peek-a-boo with you (especially Aunt Dee and Aunt Liz)
- call for your dada and say "hi" and "bye" to him when he comes and goes
- climb on things you shouldn't (ie: the toy box, your activity table, etc)
- love Chester and pull out handfuls of his fur whenever he comes close enough for you to grab (I think he loves you in return though, because he always comes back!)
- horde all your pacifiers in your crib - one is never enough and you always have to switch from one to another when you are sitting in there
- sleep through the night for 11-12 hours regularly - when you do wake up you usually put yourself back to sleep or go back to sleep once mommy or daddy calm you down
- usually nap twice a day for an hour or two at a time
- love when people come to visit and you show them all your favorite toys one at a time
- have 5 teeth that have come in and another 4 that are moving in (including 1 molar)
- weigh about 20.5 lbs

Charlie, we never could have imagined the impact that you have had on our lives and on so many other lives in just one short year. You have brought so many people together and into our lives. We love being your mommy and daddy and taking care of you every day. We love your laugh. We love your pout. We love how you bounce around when the music is playing and when you get that sneaky look in your eyes when you think you are getting away with something. We cannot imagine spending our days doing anything else but playing with and caring for you and loving you. You have completed our lives and enriched our love. We love you baby boy and look forward to watching you grow up even more over this next year - so long as you don't get too grown up for cuddling!

Monday, February 1, 2010

reflections on a big chapter of our story

So, last year in the heat of the moment and all of our attentions on Charlie, I feel as if the story of the days leading up to Charlie was forgotten about. It was not your typical birth story by any means and in reflecting on where we were a year ago, I feel as if it deserves some attention. If anything, we should have known then that Charlie would do everything in his own way and in his own time.

One year ago today my water broke shortly after the Superbowl ended. I still argue that it was not because of my dissatisfaction with the dirty Steelers winning (sorry Steelers fans!), but it makes a good story! So, my water broke with no other signs of labor starting. After consulting with the doctor on call it was decided that I would just wait and see over night and go to see my midwife as was already planned in the morning. The night passed with no change and at my exam in the morning I was barely dilated at all. I was told to head to the hospital where we would try and get things started.

After leaving the doctor’s office we stopped back at our house to make arrangements for Chloe, make the appropriate phone calls, and get our things. Vince handled most of the business that needed to be done as I was in a bit of a fog. Leading up to this point, every time I thought about actually giving birth to my baby I would find myself crying and being so afraid of what was to come. I was not afraid of the actual process of giving birth - I was actually quite at peace with that - but I was scared to death of what would happen once my baby was not warm and safe inside of me. I was seriously worried that I would become consumed by these fears and just cry throughout my entire labor and delivery. So, after we came back from the doctor’s office and the fact that I was at a point of no return settled in, I went into the nursery and sat in my rocking chair - the chair lovingly built by my husband - and I held onto my belly and just got lost in my thoughts. I felt like I was standing on the edge ready to jump - the most intense emotions I may have ever felt in my life. Vince came and found me, pulled me together one more time and we left for the hospital.

It seems as if once we actually got to the hospital something inside me switched and I felt like I had been given a job to accomplish and that gave me some clarity and focus. We got checked in, delivered our birth plan to everyone who needed it, and settled in for what we thought and hoped would be a typical labor and delivery. While I was not super pleased about having a baby on Groundhog’s Day, I figured that I would find a way to deal. Progress from here was slow at best.

This was on Monday February 2. I was given multiple doses of Cervidil (a medication inserted to try and prepare the cervix for labor and with any luck induces labor as well). This did little to nothing for me. On Tuesday they tried Misoprostol (a similar medication) and also had no progress. As the hours passed and the nursing shifts changed, my frustration with lack of progress grew. I began to really fear that I was going to have to have a c-section - the thought of which frightened me incredibly. Tuesday night when yet another shift change came around and we were introduced to another nursing duo who would care for us throughout the night, I had a melt down brought on by both the frustration of no progress and the bombardment of phone calls and text messages looking for updates we could not give. Hoping to put my mind at ease, our nurse put in a call to Dr Neulander (the OB who owns the practice I go to) and he called us in our room to discuss how things were going and what the plan of attack would be. We planned to start Pitocin first thing in the morning and if things did not progress, a c-section would be imminent. Wednesday February 4th would be our delivery day one day or another. By Wednesday afternoon the Pitocin really started to take effect and things progressed successfully throughout the afternoon and evening. My wishes and plan was always to have a natural childbirth process if possible. I was mentally prepared for the work involved in giving birth. The Pitocin added another level of intensity that I could not have anticipated, but at 9:52 pm that night our beautiful baby boy came into the world without any interventions other than the massive amount of medications needed to get things moving!

When I first planned to write this post my intentions were more than just telling the story of our labor and delivery experience. Nothing went as expected, including the fact that I never expected to encounter so many amazing people along the way over those days leading up to the miracle of Charlie’s birth. As each nursing shift changed, we were introduced to a new nurse or nursing team who would care for us for the next 8 to 12 hours. There was no one who came into our room who didn’t find a way to put us at ease and make what was an incredibly stressful situation as manageable as possible. What was maybe most frustrating besides not making progress hour after hour and day after day was that we found ourselves getting attached to our nurses with hopes of them being “the one” who would be with us when the big moment came just to have to say goodbye to them as another shift changed. Molly, Stephanie, Colleen, Mary Jane, Barb, Casey, Leslie, Donna, Stacey, and finally Jessica each made an indelible impact on our birth story. I actually ran into Mary Jane at Target last fall. She had been particularly kind to us as she had a friend whose baby was also born with CDH. She had been following our blog and Charlie’s progress - - so, hi! J

Of course, I cannot write about our experience a year ago without mentioning my absolutely amazing midwife, Betty. She did absolutely everything in her power to ensure that I had the birthing experience that I really wished for. She eased my fears and knew just what I needed. I recently went to make an appointment for my next annual exam and was so sad to find out that she no longer works for my office. I cannot imagine going through another birthing experience without her. She sent a gift for Charlie a couple weeks after his birth - one of those light up aquariums. We put it in the nursery and turned it on every night while he was in the hospital. Vince dubbed it “the beacon” and would say that it would guide Charlie to our house if he were to ever “escape” from the NICU. J We still have it on all the time and have found that Charlie cannot sleep without it. Thank you Betty - we owe you so much.

So, as I end this very lengthy post, I can’t help but feel a strong case of the “one year ago todays” coming on. Life changing. Every moment of this experience has stuck with me and has changed my life indelibly.

Just checked in a ready to get the show started - little did we know!

our labor and delivery room

cursed cell phones - definitely will not be involved
in any other birthing experiences down the road!

monitoring Charlie's heartbeat and my contractions for three days
I was hearing the heartbeat sound for days later - it gets into your head!

first picture of our amazing baby boy, fighting from the very start!