still slow and steady

Slow and steady is the only pace that Charlie knows. The public health nurse paid us another visit today. His lungs still sound great, which is always good to know! Unfortunately, he only gained 2 ounces in the past week. Ideally, he should be gaining half an ounce to an ounce everyday. So, after she left I called the pediatricians and we are going to have a meeting with Dr Dracker next Wednesday to discuss what is going on and what the plan might be. 

Charlie has also been having more and more trouble with reflux. He has been on reglan since he was in the hospital and was put on zantac as well a couple of weeks ago. We do not know if it is a fluke, but his reflux seems to have gotten a little worse since starting the zantac. He is not spitting tons, but seems to be having more of a problem with "silent reflux". From what I have read this can actually be a little worse because it irritates the esophagus on the way up and again on the way back down. It does cause him a lot of pain and discomfort. He cries and arches his back and won't eat as much. Last week he was actually even a little hoarse sounding because of the irritation. Hopefully we will be able to find some way of helping him with this because it hurts us just as much as it hurts him I think!

So, that is where we stand right now! Here are some more pictures of our skinny little man! :-)

 

"Wow - you're awfully big!"

"Don't you love how my summertime outfits show off my 

muscular arms and legs?? Thanks for the cool outfit Uncle Jerry!! :-)"

"Guess who dressed me this morning??"

"Mommy, you're so silly!"

"I just love chilling out after a nice warm bath! And I am 

giving some serious thought to peeing on my mom right now. Hmmm"

One Year Ago Today

One year ago today we had the amazing blessing of finding out that after nearly two years of trying, we had conceived a child. It had been such a long time of trying that it was almost impossible to believe. We were busily packing up for our first camping trip of the season with the camper we had just purchased earlier that month. Vince was sick with a cold and not in the best of moods as we prepared for the long drive up to the Thousand Islands and Wellesley State Park. As I was packing up our bathroom necessities, I decided to take a quick pregnancy test "just to make sure". This had become my monthly routine as I did not follow a regular cycle. Each month I would set a deadline of sorts - if I had not gotten my period by that date, I would take a test just to make sure. I had learned to take this process very casually or else I was setting myself up for disappointment month after month. 

This Friday afternoon in particular was no exception: I peed on the stick, set it face down on the counter, and continued to pack for our weekend trip. As I finished packing our things, I picked up the test and headed towards the garbage to throw it out as I assumed I already knew the results. I stopped dead in my tracks and my heart skipped a beat as I saw the two lines instead of the one I had become accustomed to seeing. I could not believe it and went as far as to get the directions out and compare the test and directions to be especially sure. It is amazing how fast your mind works in moments such as these. I quickly debated whether to wait until we arrived at our campsite that night to tell Vince or tell him right away. I wanted it to be special, but I quickly came to the conclusion that there was no way on God's green earth that I could keep this information to myself for one second longer than absolutely necessary. I was flying high with absolute happiness! 

I had bought a Willowtree figurine of a preganant woman with the intentions of giving it to Vince when we found out we were pregnant. I literally ran to our bedroom closet where I had hidden it away, tore it out of the packaging, wrapped it back up in the Hallmark bag, and flew down to the garage where Vince (in a miserable mood) was deciding what to pack and what to leave behind. I handed him the bag with the figurine inside. He (with a big grouchy sigh) asked what it was and I told him it was for him. When he opened the bag and pulled out the small statue, he got the most confused look on his face, said, "no," and promptly told me I was lying. I pulled the positive test out of my back pocket (gross, I know!) and told him that I was not lying. The whole thing, standing barefoot in my garage, was completely surreal. Even thinking back on it now, it seems unreal to me - like I was in some kind of dream sequence.

That weekend away from home gave us some quality, quiet time to let reality sink in. I was a nervous wreck and worried about every twinge and cramp. My biggest fear was somehow I would do something that would make me unpregnant. This mentality lasted for months and I became overly in tune with every little thing going on within my body. It is amazing that no matter how careful you are, there is a plan that you have no control over no matter how hard you try. 

Never in a million years could I have expected the journey we have been on for the past year. But I also never could have expected to feel this grateful for every single second of it. From the pure joy I felt as I raced down the stairs to share my news with Vince to the shock of Rita telling us that there was reason to believe that there was a problem with our unborn child to the overwhelming fear coursing through me as I sat in my rocking chair holding my belly before leaving for the hospital to deliver Charlie knowing I could not keep him safe much longer to the awe I felt the first time Charlie opened his eyes and looked at us to the unexpected heartache of leaving the NICU behind after life there for 85 days - - every second of it is something I cherish and am eternally grateful for having experienced. 

It is amazing how life can change in ways you could never imagine in the span of just 365 days.

Camping at Wellesley Island, Memorial Day Weekend 2008

Our first family photo

Our CDH Miracle

Mother's Day 2009

Charlie steps...

The public health nurse came today for Charlie's check up. He has gained 5 oz in just over a week (now 10 lbs 14 oz).  An 8 oz gain per week is typical, but she said with his history she was not concerned that he was a little behind that. Charlie of course flirted and smiled with Nurse Gloria the entire time! 

Here are a few more Charlie pics to brighten your day! 

"OMG! Aren't I just the cutest thing ever??"

"Just swinging here... showing off my incredible muscles... yeah..."

"Do my parents really think that by laying me on something cool its 

going to make me like laying on my belly any more?? I don't think so!!"

"Yo yo... what's up guys?"

teddy bear

Wanted to share some pictures of Charlie with his new friend. Thanks Aunt Jen and Uncle Mike! We love him!

"Hey there buddy - you're as big as I am!"

"AHHH!!! HE'S GONNA EAT ME!!!!"

"Yeah, maybe you're not so bad after all. I guess we can be friends."

much to catch up on

My first week at home alone with Charlie was a good one! We are still lacking a solid schedule, but we are settling into some kind of routine. His feedings at the start of the week were only so-so. He had the rotavirus vaccine when he was at the pediatrician's, so we are wondering if maybe that slowed his appetite a little because he would not take as much for a few days. He is doing better with them now. Unfortunately that does mean we did not have a weight gain this week, but he didn't lose anything - so we are taking that as a plus!

Mothers Day was very nice. We had some family over and cooked out. Very simple and low-key, but it was good. And our family was very happy to get to visit with Charlie!

Charlie with Uncle Will and Priscilla

Chilling with Aunt Liz

Nana getting to hold Charlie for the first time

Wednesday was a busy day! The Olmsteads had an appointment in Syracuse with Kayla, so they stopped over for a visit! It was great to see them and Charlie and Kayla finally got to spend some time together! Getting a good picture of two babies is near impossible though! Baby K is doing well though and everyone is happy to be home!!

"Mommy, why is she so loud??"

Kayla: "Hello over there!" 

Charlie: "How you doin'?"

That afternoon we had a follow-up appointment at Dr Ratner (surgeon). I expected a quick and easy appointment. Dr Ratner was very pleased with Charlie and his progress. He did put him on Zantac to help protect his esophagus due to his reflux issues. This will work along with the Reglan he is already on. (We had quite the adventure getting the new med because the pharmacist filled it as 4 mls 3x a day, when it was supposed to be 0.4 mls 3x a day. Luckily I realized it didn't seem quite right and asked Dee about it who conferred with Dr Bode and helped us figure it out!) Dr Ratner also ordered more blood work to check his bili number (jaundice) and wanted a chest xray. So, we had to go all over and visit many germy places. It was quite nerve wracking for me and Charlie didn't really enjoy it either. Then to add to the drama, the bandaid they put on his heel after getting his blood work slipped off and he was bleeding all over his outfit and blanket while we were waiting for the xray. I assumed the chest xray would be no big deal because he has had tons of them, but this was completely different! They strapped him into this plexi-glass contraption with his legs hanging below him and his arms straight over his head - it was horrible and he screamed like crazy. And I will probably go down in the books as the worst mother ever, but I took a picture just so that everyone else could fully appreciate the experience because I knew my explanation could never do it justice! Dr Ratner said he will review the xray with us at out appointment next month. His bili results came back and are improving. He was at 12.4 when he was discharged, 9.1 when the pediatrician checked last week, and 8.4 this time. Slowly but surely!

"Mommy! Put the camera down and rescue me!!"

Wednesday night Aunt Sheri got to meet her nephew for the first time! She is in town from Florida and came over for dinner and Charlie time! Uncle Dave also flew in from Florida on Thursday and has spent some time with Charlie this weekend! He had never held a baby before Vince plopped Charlie in his hands (after he thoroughly washed them, of course! :-) ). Dee finally came for a visit on Thursday as well! Charlie was very excited to see her and snuggle up for a couple hours! 

Aunt Sheri is a natural!

Uncle Dave is pretty good at this too!

All the D'Angelo boys!

So, things are going well. He is sleeping great at night. We wake him up about every 3 hours for his feedings and meds, but he falls right back to sleep. He even eats while sleeping much of the time! He is just a really good baby and we are so lucky! I will try to be better about posting throughout the week. We just need to find a routine that works! :-)

We are very proud of our lilac bush! We haven't killed it yet! :-)

pics

Here are some pictures from our final days in the NICU that never got posted due to the chaos of discharge that snuck up on us! There are some good ones, so I didn't want you to miss out! Enjoy!

Chilling with Mommy

Such a happy baby!!

Charlie after his hearing test, which he passed with flying colors!

This is Charlie's usual reaction to Dr. Bode... even after 85 days

first trip to the pediatrician

We had our first appointment at the pediatrician's office today. It was a little nerve-wracking since we have kept ourselves so secluded for the past week and then thrust ourselves into the germ-filed world walking into the doctor's office! We requested an appointment right after lunch to cut down on the number of people we would come in contact with and they let us right into the exam room so there was no waiting room exposure. Unfortunately, we are so in tune with the NICU standards of germ control that we were a little taken aback by some of our experience - ie: the lack of gloves and the sniffling nurse (we are hoping it was just allergies!). Maybe we should have said something, but we were so overwhelmed with it all!

The good news is Charlie has gained weight since last week. It is a little hard to tell exactly how much because the NICU measures in grams and the pediatrician's measure in pounds and ounces. He was about 10 lbs 2 oz last week and he was 10 lbs 9 oz today. That was an exciting gain for us, but while we were congratulating Charlie on being average in length (23 3/4 inches - 50th percentile) the nurse calculated his weight in the 5th percentile. So we still have room for improvement! Dr. Dracker was pleased with how much Charlie is eating though, so we will get there.

Charlie did have to get the rotavirus vaccine today. Luckily it is an oral one, so no needles there. He got the rest of his vaccines at the hospital, but not this one for some reason. Dr. Dracker thought it was important because the rotavirus can cause vomiting and diarrhea - which we do not need when trying to gain weight! He also had blood work done to check his bilirubin numbers (related to his jaundice) and his blood count.  We should get those results tomorrow. 

So, everything looked good. Dr. Dracker was pleased and was insistent that he would like to be the one keeping tabs on Charlie. The nurse practitioner in the office takes care of most patients on a regular basis, but Dr Dracker would like to be the one consistently seeing Charlie because of his history. This pleased us, especially since he suggested it before we even brought it up. We go back in 4 weeks for the next rotavirus and 4 weeks after that for the rest of his immunization boosters and a check up. 

First Update from HOME

Things here are going well. I still have a feeling of being overwhelmed, but it is not with Charlie - he has been pretty good all things considered. I am just overwhelmed with the reality of being home and I really miss the NICU. We made some great friends there over the past three months and I really miss them. I never expected that. Nurse Cynthia already came and visited us on Sunday and Nurse Dee checks in on us every couple of days and will hopefully be visiting soon. 

It is pretty obvious that Charlie misses everyone as well because he cries more now than he ever did at the hospital. :-) This is partly because his routine in all messed up and it seems like he is always over-tired. He still talks and smiles when he is in the mood though. He is going to be very sad when daddy goes back to work tomorrow and all he has to entertain him is me all day long! He is accustomed to an entire fan club - one mommy is a hard adjustment to make!

We go to the pediatrician for our first visit on Thursday. Hopefully Charlie has gained some weight! He is eating pretty well, but who knows if it is enough to fill out those scrawny arms and legs yet! We will let you know!