Ella Mae

Today was Ella's second birthday. I can't believe that my baby, the most beautiful little girl in the world inside and out, has already been with me for 2 years!! Shes a total girl, walking around with her Yankees dress on, nails painted and a cell phone tucked under her ear. She carries a purse around telling me that shes going shopping and will use her money (old hotel key) to pay. She talks and talks and talks and talks and talks and I love to listen to her. She reads stories to her dolls and makes sure to tuck in all of her babies when its time for them to go to bed. Although it seems to be a delay tactic, she must kiss everyone in the house goodnight before she can go to bed - mommy, daddy, lily, drew, and whichever grandma currently resides. Shes such a sweet and loving little girl and I love her to pieces.

I thought she was a boy until the doctor said "Its a GIRL!" and right then and there I couldn't have been any happier to have a little girl. I loved having a girl. I love having Ella. She'll always be my baby. Here are a few pictures from the past 2 years that remind me of some of our favorite times together.

Happy Birthday sweet girl! I love you!

37

I'm going to write this because I know people want to know and I don't really want to talk about it. I'm ok writing about it and I won't mind one bit if you comment, I just don't physically want to speak about it.

A little boy died today. His name was Connor. He was only 7. And he fought CF everyday of his short precious life. You can read about him at www.notsobrightandshiny.blogspot.com. It will break your heart. I never knew Connor. I don't know his parents. But I can't get them off my mind today.

On Tuesday when I met with Valerie Abati for our News 5 Interview, she asked me how I felt about the median age for survival with CF being 37. I danced around it a bit by saying things like "well that is just the average, many people live much longer" and "20 years ago most kids didn't live through adolesence so I can only hope that in 20 years the meadian age will be close to 80". What I wanted to say to her and to everyone is that I'm terrified. I do cry about it. I rock him extra long at night, Martin has to make me put him down. I want him forever and I don't want to think or talk about an end. I don't want to be niave but I also don't want to be debbie downer; I don't want to ruin our lives worrying, I just want to enjoy every moment that we all have together, treat Drew like everyone else. But deep down I am scared and I just want everyone to know that.

Recently I've been so up and down on how I feel about CF. Somedays I'm so hopeful, reading about all the new treatments and research going on. Other days I catch an article on how CF is way more complex that we ever could have imagined and its going to take forever before a true cure is really found. I know people and know of people who are in their 30's, 40's and 50's who are living with CF. They have had lung transplants, take dozens of medications every day, and spend weeks at a time in the hospital every year, but they are alive. I know people and know of people who never got to see their 2nd birthday, never made it into adolesence and never got the chance to experience the life that you and I take for granted.

I wonder why Drew got this disease. I'm not mad about it. Maybe God knew what wonderful family and friends we have and just needed that one more family to raise awareness and support to find the cure. Many people have told us that God doesn't give us anything we can't handle. I think we can deal with him; I just don't know if i'd be able to deal without him.

The Latest News

As I had mentioned in my previous post, a new fundraising effort by the Cystic Fibrosis Foundation known as The Finest Young Professionals, kicked off this week. We offered our support by sharing our story with 3 of the nominees so that they could learn a little bit about the disease that they are fundraising for. One of the nominees that we were paired with was Valerie Abati , a meteorologist for Channel 5 here in Cincinnati. This afternoon she came to our house to interview me for a story she was doing on Cystic Fibrosis and her fundraising efforts. Click here to see the interview.

In other news, we are home from the hospital and doing great. Somewhat remarkably, you can hardly even see his scar. Its been 12 days and the little man has healed so remarkably well. It is a little funny (for us, not him) when he poops because he strains every muscle in his little body to squeeze out a tiny little bit of poop. The doctor said thats normal as he gets use to using the thirteen different muscles you use to poop (I know, who knew!). Hes getting the hang of it though and is operating the way hes supposed to.

Ella turns two a week from today. TWO!!! Holy crap! Where have the past two years gone! I couldn't have asked for a better little girl. Her smile brightens my day and I can't imagine my life without her. Even though some days seem to drag on forever, the years sure do fly by. I asked her what she wanted for her birthday and she said Pop Pop. I got her a dollhouse; hopefully that will suffice.

Lily is also doing well. She pushes up on the ground when shes on her belly and holds her head high while looking around. She'll be rolling over in no time. I'm definitely not ready for the two to be mobile in any capacity. I think I have it hard now! She loves "talking" to you when you coo and goo at her, echoing your sounds and smiling with a grin from ear to ear.

Things are getting better. The first three months were not fun. I'm not saying we're having fun exactly, but its not so bad anymore and hopefully it will continue to get better.

Cincinnati's Finest Young Professionals

The Cystic Fibrosis Foundation has many events every year to raise funds for and awareness of Cystic Fibrosis. Earlier this week, one of the event directors at the Cincinnati branch of the Cystic Fibrosis Foundation reached out to me to tell me about an event taking place over the next 12 weeks, and asked if we would be interested in helping out. Here is a little bit about the event, called Cincinnati's Finest Young Professionals:

"The Cystic Fibrosis Foundation of Greater Cincinnati recognizes that there are many outstanding young professionals in the Tri-State area who exemplify outstanding leadership qualities, are very active in volunteer roles and have excelled in the business community. The CF Foundation will recognize the “cream of the crop” at the Inaugural Cincinnati’s Finest Finale. The event is designed to spotlight Greater Cincinnati’s most influential trendsetters, honoring their professional and charitable accomplishments. Up to 25 young professionals, chosen by a Judges Review Panel, will use their talent, compassion and leadership qualities to further the mission of the CF Foundation: to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. Candidates will embark on a 12-week fundraising blitz in their quest to be THE FINEST YOUNG PROFESSIONAL IN THE TRI-STATE!" (www.cff.org/chapters/cincinnati)

Here's how we are involved. Most of the nominees have no connection to CF. To make their fundraising efforts more personal, we were asked to share our story with 3 of the nominee's. I told them how CF has affected our life and shared with them some of our hopes and dreams for Drew. I provided some information to them on the disease that they know very little about and hope to raise their awareness so that they in turn will raise awareness as they work to raise funds and become Cincinnati's Finest Young Professional.

I have offered to help them any way I can over the next 12 weeks, so stay tuned. There will likely be different events all over town to raise money and awareness, and I would love to have some of my family and friends participate in whatever they are able to. I will let you all know sometime soon who the 3 nominees that we are working with are and how we can help them to become the Finest Young Professional in Cincinnati.

Lovely Lily

I feel like Lily often falls through the cracks and I'd like to take a minute to acknowledge her. We admittedly spend a lot of our time and energy on Drew, and Ella dare not let you forget that shes around, so Lily is the one who seems to get pushed aside until a set of hands are free.

Lily has a personality all her own. I believe she will be my diva. Shes got the most crystal blue eyes you'll ever see. They look like glass. They are so beautiful. Her smile can make the worst moments turn around. She was with us at the hospital when we had to take Drew in for surgery, and she just smiled and smiled at me while we waited for the doctor to tell us everything went well. She got me through.

Lily has cheeks so chubby that they appear as though they will burst when she smiles, but that makes her even cuter. Her thighs match (cute now, but hope they change as she enters adolescence).

Lily will already mimic different sounds that you make. I will often hold her on my lap and coo and goo at her and she smiles and repeats the sounds, and squeals with delight. Shes so strong, holding her head up so well, and pushing up off the ground. She will be rolling over in no time.

I wonder what Lily will look like in a year. Her hair seems to have a red undertone, but Ella was born with black hair and look at her now. She does look an awful lot like Ella, I just don't imagine another Ella, I imagine a Lily.

Lily loves being held. She loves to walk or rock or bounce, and she loves being sang to. And lucky for her, I love holding her.

Lily has her moments, but don't we all! Shes a precious little thing with a smile that lights up my world and I wanted to acknowledge her. Here's to you, Lovely Lily Grace! Love you!

So Now What?

We're home! Surgery went great on Thursday, and despite a few pain issues Thursday night and into Friday, we got everything under control and started the healing process. On Monday morning, the doctors decided that we could start to feed Drew again. Everything went well for 24, and on Tuesday at about 11am they sent us home!

Drew has a 2 inch scar across his belly right above his belly button. Other than that you could never tell anything was wrong with him!

Somewhat luckily, we were able to jump right back into the routine at home. If there's one thing I can say about all of my kids is that they are great sleepers. Around 8 weeks, Ella started sleeping through the night and continues to this day. I'm talkin' 8pm to 8am; seriously through the night. I think I can count on 1 hand the number of times she didn't sleep on that schedule. The twins started their overnight sleeping closer to 10 weeks. They both go down sometime close to 10 and get up between 6 and 7. I can conquer the world if I've had a good night sleep, so this is a quality that I greatly appreciate. In the hospital, nurses and doctors were poking at Drew every few hours, so I was afraid that his schedule was going to be all screwed up when we got home. Not the case. He was in bed at 10pm and woke up crying at about 10 after 7 this morning. There isn't a strict schedule during the day. They eat when they are hungry, they sleep when they are tired. Its the nighttimes that are a gem that I cherish.

So now what! We have no impending surgery. We have no impending threat of a leaky ostomy bag. We still have special recipes for mixing formula and measuring out medicines, but thats almost second nature at this point. I guess we start our "normal" now! Hopefully the summer will bring picnics with friends, trips to the park, and visits with aunts, uncles and cousins.

I'm still nervous about germs, and I'll always be. I talked to Drew's CF doctor about this and she said thats totally normal, and appropriate. Right now as his handlers, its critical that we have clean hands. Hands are the #1 way germs are passed. We have tons of sanitizer around and go through lots of soap. We have a "no touching Drew without first washing your hands" policy. I have a note attached to his carseat that says "Please wash your hands before you touch me". Once Drew is mobile, there will be lots of Clorox wiping of doorknobs, toys, and whatever else a little boy can get his hands on. We can't prevent him from ever getting sick, but we can do our part to make sure that unnecessary germs aren't causing unnecessary harm. It might come across as a little crazy to people who aren't dealing with this, but if it were your baby, I have a feeling that you'd act the same way.

So please don't judge. Please wash your hands. Its still taking some adjusting being forward with everyone and asking them to wash their hands before they touch him. If you're sick, please don't put us in an uncomfortable situation of asking you to stay away (because I will). Theres a general 3-6ft rule that we were advised to follow if feeling under the weather. If we have to cancel something at the last minute, please don't take it personal. Its Drew's life we're talking about. We're going to live as normal as we can, but this will include a lot of precautions...and hand washing :)

We have a pooper!

We've got poop! First time anythings come out the end its supposed to so we are beyond delighted. Let me explain.

As a quick recap, when Drew was born there was a blockage in his bowel that he was unable to pass on his own. This required surgery to remove the blockage. Unfortunately, the bowel was in rough shape, so they had to snip it in half and poke both ends out of his belly thus allowing the bowel inside his belly time to heal without having to process food and waste the whole way through - enter ostomy nightmare. On Thursday, he had surgery to put the two ends back together so that food (or formula) can pass through his system like it does for the rest of us. Before they could start to feed him again, they needed to see him poop to make sure that all of his insides were working the way they were supposed to.

Sidebar: FAQ
1) What is he supposed to poop out if they're not putting anything into him?
GREAT QUESTION! There are apparently some stomach acids and juices that the belly produces naturally with or without food. These normally just mix with your food and exit the body with the rest of your waste in the form of poop. We just needed to see something in his diaper to show that the pipes were working the way they were supposed to.

2) What would prevent poop from happening?
Drew has never used his colon. (it was just below where the bowel was cut, so everything emptied into the ostomy bag vs following the natural path down the rest of the bowel, through the colon and then out the butt). The colon's job is to remove water from your waste so if you didn't have one or it didn't work properly you would have chronic diarrhea. So because Drew has never used his, he has what they are calling a micro colon. Basically, the reservoir (colon) that holds the poop before it exits your body is super small, so they expect that he will both poop often and it will be mostly liquid, at least until the colon gets up to size and speed.

Back to the point, he pooped this morning! They didn't want to feed him until he pooped because if they are putting stuff in and it had no way out his poor belly would have gotten too full and he would have gotten sick. So this morning he pooped and now we are able to give him small amounts of Pedialyte every couple of hours until they are comfortable with the way all systems are working. At that point they will start allowing him small amounts of formula, and then work him up to full feeds. Then we are home free!!

We aren't really sure of the timing of all this. It really depends on Drew and how he does with everything. We are hopeful that it will all go smoothly and quickly and we will be home in no time. They had estimated 10 days to 2 weeks from the time we entered the hospital until the time we got to go home, but things are looking up and going smoothly so we are hopeful that it will be sooner.

I'm hoping this is the last post I ever have that includes the words "poop" or "ostomy". We seriously cannot wait until he is home and we don't have to deal with this anymore ever again. And to be clear, this whole issue was a complication due to the CF, but it is not a chronic CF issue. Once hes home and this is over it should be over for good. Nothing makes me happier :)

Oh What A Night

Lets hope the worst is behind us! We were scheduled for surgery yesterday at 11:30. We knew going in that the time could change. At around 10:15 they told us that they'd be up to get us at 10:30. At about 1 they finally showed up. I almost wish they hadn't told us they were coming early as the waiting just added to the stress and frustration. We got to hold him to take him down to surgery this time. He was remarkably mellow for not having eaten anything for the previous 24 hours. There was a bunch of paperwork to be signed, then it was go time. The nurse I had to give him to was wonderful. She said she had a 4mo. old son and she cried when I cried when I had to give him away. So many medical professionals are just so clinical and that, to me, appears cold. So it was nice to have a nurse who at least seemed to share the emotional part of handing him off.

We were told that the procedure could take between 1 and 3 hours. Sitting and waiting to see the doc again is the worst. After about an hour and a half Dr. von Allmen came out to let us know that everything went exactly as planned and they were just waking him up and we'd be called back shortly to see him.

A nurse was holding him when I got to see him again. She went on and on about how beautiful and precious he is (I couldn't argue!).

We brought him back upstairs by about 5 and he just seemed to be in a great deal of pain. He had a high fever (which they tell me is normal after surgery) an elevated heart rate and just visible overall discomfort. We spend the next 5 hours (yes, FIVE HOURS) trying to get a doctor in here to order new pain meds. He'd had morphine and tylenol several times but they were providing zero relief. He was moaning and wrythig in pain and despite repeated attempts by the nurses and the doctor saying he was on his way, nothing. I was furious and so upset. I finally went out to the nurses station crying and begging, telling them there has to be someone who can do something for him. He was quite literally in agony.

We finally saw a very apologetic doctor around 11pm. I didn't care if he kissed my feet - it was because he couldnt make it up sooner that my son had to suffer for that long and I was pissed. They were able to put him on fentanyl with a patient control button so if we thought he pain was worse at times we could press it to increase his dose. This whole new medicine/machine was not set up and working until almost 3am. THATS 12 HOURS SINCE SURGERY!!! Drew had his belly cut open, his bowel stitched back together, his belly sewn shut, and zero pain relief for 12 hours. I've definitely swallowed a bitter pill about this.

This morning the pain team came in shortly after Martin had left for work. They were trying to decide how long to keep the meds going before switching him down to something more mild. I talked with them and the nurse and decided to keep him on it and resting comfortably for the next 24 hours. He's still in pain but at least had been able to get some much needed rest. Hopefully that will go a long way in helping him to feel better.

Its really a shame that we had to have that experience here because prior to that happening I had not 1 negative thing to say about Childrens. I hope that now that things are under control we will be happy with the remainder of our stay, and never have to come back.

The good news is that there is no more bag, and with any luck in just a few short days he'll be operating just like the rest of us!

At Long Last

We've waiting for 2 months and at long last the day has finally arrived. Tomorrow morning we will be taking Drew back to the hospital to prepare for surgery on Thursday morning. I did what I believe will be my last bag change this afternoon, and I've gotta say I think I'm gonna miss it. JUST KIDDING!!! Not going to miss anything about it. I can't wait until my baby boy is back together and working the way hes supposed to be.

I'll tell you what I'm not looking forward to thought - the surgery. Like the actual physical operation. The anesthesiologists will come up to his room and talk to us for a few minutes while they take his vitals. Then they will let us know its time to go. We'll walk to the elevator with them and go down to the surgery floor. Then they'll tell us this is where we need to say goodbye. I hate that. I wish they could phrase it differently, someway that underplays the severity of what is about to happen. I know he'll be fine, but it doesn't make "saying goodbye" any easier.

The worst hours of my life have been spent in that surgery waiting room. They are great at Childrens, they really are. The waiting area couldn't possibly be nicer, with a receptionist like the one you remember from grade school. They nurse in the OR calls into the waiting room to let you know when they're about to being the surgery and calls in again with updates throughout. Once the surgery is complete, the receptionist calls your name and tells you which room to go into (there are a number of private rooms that the doctor meets you in to let you know how everything went). One thing I love about our surgeon is that he doesn't call in and meet you in the private room, he actually walks out into the waiting room and the first second you lock eyes with him gives you a thumbs up. I can't imagine having to walk into a private room, as already anxious as I am, and wait for the doc to pop in with the [god-willing] good news. I'm just reaching for the positives here.

We will post on Facebook and post on here when we have a chance over the next few days. We've been told that this should be quick and easy and then we can focus on the sixty five roses and move on with our lives. I hope it happens that way.

T Minus 3 Days

We go back into the hospital Wednesday morning for Drew's surgery on Thursday. They need to get him in there a day early to do some tests to make sure everything is ready to go once hes reconnected and to do some pre-surgery work - weight, height, vitals and the like. I know that at some point either on Wednesday night or very early Thursday morning they will require that he stop eating. Thats gonna be hard because hes gonna be miserable, and hes such a happy baby. I'm going to have to see him on IV's again, crying and uncomfortable while a million different people poke and prod. But its all a means to an end. With the completion of this hospital stay, we will be beginning our new lives as a family. It might not be the old "normal" but we will get to start to define our new normal. We will deal with the CF however we need to, but my nemesis, the ostomy, will be gone. With all of that in mind, its still not going to be easy to take him back.

When he was in the hospital the first time, before he was ever at home, we sat vigil at the hospital. Martin spent the night every night, and in the morning his mom relieved him so that he could go to work. She stayed there until about 1ish, when I went in for my shift (the best part of my day). I came home for dinner with Martin and Ella, so Martin's mom went back until about 10pm when Martin returned for the evening. We'll run a similar schedule this time. Its particularly important to me that someone be with him all the time now because he knows us now. He recognizes my smell, he smiles when we smile at him, he knows us.

I know that this is a good thing. Its something that we've been talking about and looking forward to for a long time, and we're still looking forward to not having to deal with the ostomy. But its not going to make taking him back any easier. I didn't get him a pretty cool hospital outfit though that says "Chics dig scars". I'll post pix, and an update on how things are going as their going. Keep us in your prayers on Wednesday and Thursday!

Not in Vain

I started reading a book last night. I know you're probably thinking 'when on earth does this woman have time to read!'. The answer is never really. But I think this book is important and it will be helpful to me and us now and in the future. Its called "Cystic Fibrosis: A Guide for Patient and Family". When we found out that Drew had CF, the care center provided us with a small book called "Cystic Fibrosis: An Introduction for Patient and Family" that goes over everything at a high level. This book goes into detail, and although I've only managed to make it through Chapter 1, it seems to do so in a way that is easy to understand.

There is a paragraph in the preface that convinced me that I should continue reading. Here's what it says:
"I've tried to stress throughout this book that cystic fibrosis is a serious disease, yet one that can be effectively controlled for long periods of time in most patients. It is a life-shortening disease, yet it is also one in which the outlook for patients' length and quality of life has improved dramatically in a relatively short time and continues to do so. It is a disease for which there is currently no cure, yet it is one for which treatment is very effective. It is a disease that creates demands on patients and families for daily treatments; it is also one in which the efforts of patients and families can greatly influence the health and quality of life of the patient. It is a disease that is commonly accepted as inhibiting normal life, yet the reality is that most patients go to school, play sports, and grow up accomplishing all the tasks, and experience all the joys and sorrows of childhood, adolescence and young adulthood."

So while I may complain or be frustrated by all of the care, and all that is affected by the care of Drew everyday, I know that it is not in vain. We are helping him to live the healthy and normal life that he deserves.

Oh Erin!

"You can learn many things from children. How much patience you have, for instance."

Ella started calling me Erin yesterday. "Erin, come play kitchen", "Erin, help Ella go poopies, but no look","Erin go swimming with Ella, now". Um, you're not quite yet two little lady, lets stick with mommy for a while. It was amusing, but I couldn't let her know that.

I think we're starting to enter what they call the "terrible two's". She really has been great with the whole transition from no siblings to two. She only gets a little wild when there isn't anyone to focus on her. She's well aware of this when its happening, when Martin and I are both feeding a baby or otherwise both occupied. She colored on the wall once. She occasionally puts one of her people in the toilet. She takes her clothes off. But the biggest thing that shes into when no one is paying her any attention is wanting to go on the big girl potty. She knows we're busy, and I think she recognizes that when she goes on the big girl potty that mom and dad are giving her undivided attention.

I hadn't really started potty training, but around Christmas time (18mo.) I bought a little potty topper for our toilet. She was curious about it but didn't get the concept....until about 12wks ago. She essentially started to potty train herself, and I wasn't gonna stop her, even though the timing was sub-optimal. She would tell us that she has to go on the big girl potty, sit there for a few minutes, pee, then ask for a cookie. (Hey, if its gonna be this easy that works for me!). I'd say she does that 2-3 times a day. We bought her some pull-ups with princesses on them which she adores, but is only allowed to put on after she uses the toilet. I haven't quite had time to ask her every hour if she has to go or anything like that, but when she says she has to go we drop everything and run to the bathroom.

Then things changed a little. She will still occasionally tell us that she has to go when we're playing with her, but when we are both occupied, or when she is going to bed but doesn't want to, she pulls the potty card. Trying to give her the opportunity to use the potty as much as possible, we drop everything and run to the bathroom. All clothes must come off. She gets up on the potty, and then wants us to leave the room. Then she hops off the toilet and goes streaking. Once caught, we try to re-diaper her, and she screams and cries saying that she has to go potty, that she wants to wear big girl underwear (pull-ups) and insists on going back into the bathroom. So back we go, back up onto the potty, parents out of the room ... and we have a streaker again. And on and on it goes, ending in an inevitably frustrated parent and a screaming and crying little lady.

I think she knows and likes the individual attention that she gets when she does go potty and shes just trying to get that by pretending that she has to go even when she doesn't. I don't blame her, but we're on to you. I'm not in any real rush to get her potty trained. Thats just something else that I'll have to worry about when we leave the house, a change of clothes for her too incase of accidents. It will happen in time. I am proud of her though for getting as far as she has with absolutely no encouragement or support from her parents :)

She did something else amusing the other day. Last year we had a young kid named Brian who mowed our grass. He did a fine job and we paid him when he was finished each week. This spring, a new young boy knocked on the door and asked if he could mow our grass. Martin, being the business man that he is, worked out a deal with Cam (his name is Cameron but Martin calls him Cam) and basically went with the theory that the early bird catches the worm! Well, a few weeks late Brian knocks on the door, asking if he can mow our grass again this year. Nothing against you Brian but Cam got here first. But I didn't have the heart to tell him that so I just said that we weren't going to need him this year. Well my shadow standing next to me started to yell Cam, Cam mow grass, Cam! Luckily I don't think Brian knew what she was talking about. I was amused.

There are days when Ella drives me up a wall, but there are other days when you see her innocence and just how sweet she is - giving her sleeping sister a little kiss on the head when she thinks no one is looking, throwing out a random "love you" to me or one of her people, sitting and playing by herself just singing away - and I wouldn't trade her for the world!