I am just missing my baby. I can't believe that this new year is here. I think that it makes the loss of Faith so much more difficult. Before I could hang on to the time that she was here...thinking that it wasn't so long ago that I held her in my arms.

As we get closer to a year it feels so much harder. I want to do something for her birthday but I am not sure what to do. I hope that I have the strength to do something. I was thinking about doing a book drive. Another CDH mom does it for her son andthen donates the books to a hospital.

I miss you sweet Faith...it's hard to believe that you are gone and I can no longer hold you in my arms. I know I will see you again some day. God will bless pieces of you in our next child. I love you baby girl.

Kisses for my sweet pea.

Love,
Mommy

When you don't check daily the messages sure add up. Life has been crazy busy. We have been getting into the swing of things with school and more involved in church. Now I feel like I am doing TOO MUCH!

Another month has passed and still no baby. I think we will use ovulation kit next month so that we can find out if I am ovulating and when.

I feel like I am missing out on so much with Faith in Heaven. I know she is breathing easy there. I just feel so cheated sometimes. It all comes in cycles, grief is a crazy thing. Thankfully its a natural and a healing process, which gives me hope that I can go on. I have to live my life each day. God, Faith and I are all on the same page there.

A couple co-workers are expecting...I must admit I am a little jealous...my sister in law is pregnant...I am a little jealous of that too...though I know that their baby is a definate MIRACLE! I pray that all goes well for them, they deserve it.

Well off to read a million posts!

I haven't been on here in awhile. It's so hard to log on and see that another baby has lost its battle. After Faith passed, I wanted her to be the last one. It seems to have been a rough year for CDH babes.

My heart breaks for Kerri, oh how I wish she wasn't in this place. I pray that God is holding Kayla and know that they are watching over Kerri and her husband. She was a beautiful little girl, who fought through so much.

As Tiffany mentioned in her post, we have to walk through the valley. We were deep in the valley from March to April. Now I feel we are going back down in that valley once again. With Kayla's passing and many other CDH babies who have lost their lives. The whole trademarking deal. My good friend who has a CDH survivor, found out she is prego and the baby has nuchal thickening (an indicator of cardiac defects or a trisomy problem.) I guess this is when we turn to God and lean on him.

Prayers being said for everyone in times of struggle.

I have been so involved in the new parents on this site and have been wanting to remember what feelings I had after we ewre diagnosied. I want to help them, but sometimes wonder if they want to hear from the mom of a non-survivor. I know when I joined that I just wanted information. I know that both parents of survivors and non survivors go through the same things prenatally, so I shouldn't worry, but I do. I just want to help them the way so many on here helped me out.

It seems that time changes the way you interpret things, I think that is why so many people stress the importance of journaling your thoughts, feelings and information from the doctors.

I have been thinking about requesting Faith's medical files. I want to know more, but I am also afraid of what I might read. So that I feel is why I have started to look back through my posts on here and on carepages.

We are also thinking about starting to add to our family. I know that Faith would love to have siblings and if she was here we would also think about adding to our family, maybe not this soon but eventually.

It's been awhile since I last wrote in my blog. I have been struggling lately with the guilt of moving on. It feels as though I am leaving her in the past. How do you show your love to those who have passed? I am struggling with that right now. I love her soooo much and for some crazy reason feel like if I move on I am not showing her that love.
My mind is a battle field between the feelings I have and what I know. I know that moving on shows that I care and is healthy, but moving on makes me feel that she is not the center of my life. Though I think about her all the time.
Everyone was right about the moments that sneek up on you. I had started feeling this guilt, then yesterday I was about to get on the highway and heard this song that people use on their cherubs videos and lost it. I changed where I was going and went to visit her. I cried. I miss her so much. Luckily my work schedule is very flexible.
Last night I was on the phone very late with my friend who is having relationship trouble and around 1245 in the AM it was my turn to share my feelings. Apparently my husband was sick of me talking on the phone and exchanged some words. So I hung up with her, not getting to share my feelings. That was it, I totally lost it and was balling. Steve was just tired as he has started a new job with a moving company. He didn't mean what he said and I should have been downstairs on the phone. He stayed up with me and we talked about Faith.
I had been writing in a journal. Last night while writing it hit me that my hopes for her are gone. I used to write my feelings, then it shifted to writing to her. Before we wrote to her in a journal when we were in the NICU to tell her about her journey. Now when I write to her there is no Hope that she will ever read it.
Blah! Emotions take such a turn...I feel so great and then this. This pain. It too will pass.

I love you Faith. Take care. Thank you for watching over us.

Mommy

Wow I never thought that I would be so ready to meet my little girl. I am feeling really anxious. I don't know what to do with myself. I am feeling well so I can't complain there. I think I may be quite suprised when labor arrives. I feel like I should be doing something, going somewhere, visiting someone. But instead I am here in Ann Arbor, I can only travel in the city, and people can only come and visit me. I want to meet my little girl, hold her hand, tell her I love her face to face. Our journey will begin soon and though it will be a roller coaster. I know she and we have the strength to make it off the ride. I keep feeling that tongiht is the night I will go into labor. Must be wishful thinking.

Well we are here at the RMD house awaiting the delivery of our little one. Some days I think I am ready for the journey to begin and others I can't even comprehend the journey we are about to begin. I know that God will give us the strength to travel down this path, but it is hard not to be scared. Part of being human I suppose. Times I want to cry, but I am always in a public place. And later I don't want to stir those feelings up and make myself cry.

I thought I had prepared myself, but as a friend travels this same road it is different. Having an emotional connection to a baby with CDH and their parents makes the road much tougher. I appreciate all the parents who have told me their story. They have helped to make me stronger.

Well it has been a month since my last sinus infection, so I figured it was time for another one. Nope I think its the flu this time. I go to the doctor tomorrow.

Lets see on January 20th I lost part of my mucous plug at 33 1/2 weeks. No contractions so we are good so far.

Today I have had low back pain, headaches, stiff neck, stomach ache and cramps (mild). A temp also, lets pray its the flu.

Wow already at 31 weeks. I am already so anxious to meet the little angel. Though I am starting to worry more. Preterm birth is the biggie as we are 2 hours away from U of M where we are supposed to deliver. I don't really trust anyother hospital with her life. So I pray that she cooperates:) It was good to know that the mild cramps I am having are normal. That puts my mind at ease.

Went to the reg OB Gyn today and things are measuring fine and her heartbeat was 148. She is an active little girl. We start going every two weeks now, which is the same as our U of M visits. What a busy month January will be. Brithing classes, a benefit for Faith, and loads of doctor's appointments! We are also in the process of redoing our kitchen. I think we are slightly insane for starting the project, but it was my idea. I want my hardwood floors before Faith can throw food on our wonderfully carpeted kitchen.

Hope that everyone is having a great new year! We are excited for 2008 and meeting Faith.

No changes from the last visit at U of M. Things are still in the same place with heart to the right, stomach, intestines, liver and gallbladder up. I was so worried after the last visit. But the more I talk to people on here, the less worried I have become.

Each baby is so different (I have to admit, I didn't really listen when everyone first told me this). As I read all the different stories and outcomes, you can not go on what has happened to our other Cherubs. There are so many other circumstances that play into CDH after birth. There are so many amazing parents on this site. Thank you to all of your for sharing your stories of heartache and of happiness.

We know that the road ahead will be hard and long. But at the end of it will be a positive experience and new relationships with friends and family.

Faith's room is slowly coming together. Looking for a dresser to put all of her clothes in and a book shelf for books.

I am working on my 3rd sinus infection right now. I can't seem to kick them. Nothing is strong enough. So I will deal with it for a few more months!

Hope that you all have a great Christmas, Holiday and New Year!

Love
Amy

Another visit on Thursday Dec 6th. Went in for an MRI, Echo, OB visit, and U/S. They sure lied when they said that the MRI makes beeping noises, more like alarms or fog horns. She was going crazy in there, it must have been too noisy. They said she was doing Vogue poses and that they got really good pictures.

Next went to a high risk OB appointment, nothing new at all there. More or less to meet the doctors that may deliver me.

Echo was next. It went really well. They were concerned about the size of the left side. They believe everything looks good, it is smaller but still in functioning range. They will do another Echo after birth to check the aorta for narrowing.

Lunch and then a speedy ultrasound. We were supposed to meet with the other surgeon, Dr. Nugen (spelling). But our first doc we met with came in Dr. Mychaliska. We were suprised and now preparing for different news.

The MRI and US numbers for LHR didn't match up as they generally do. US numbers gave us a LHR of 1.44 the first time and 1.57 now. The MRI gave us 1.0 and calculated the lung volume at 10 cc :( I was freaking out in my head! Thinking oh my, my baby is in BIG trouble now! He said that because of the difference in numbers her case is now more severe. But that it probably falls somewhere between the two LHR readings.

Also more of the liver is up in the chest than originally thought. NOt a good thing. There is a good amount of liver up. Ugh... So more squishing of the lungs.

This all increases her chances for ECMO and the time spent in the hospital. They are doing a blind clinical study on a fluid called perfluberon that they can place in the lungs and apply constant pressure to encourage lung growth. We are eligible if she goes on ECMO, though we may never know if she was given the liquid.

Still processing all the info. Not sure what to make of it. Mentally exhausted already and the fight is just beginning.

I will go in 2 weeks before I am due to live in Ann Arbor, just incase. She is weighing a little on the small side. 2 lbs 2oz at 27 weeks. So we are hoping that she gains some weight soon.

If I can think of anything else I will let you know.

Amy

Wow it sure is crazy how your energy levels can change when you are prego! The last week I had been really tired and then the last two days I have had tons of energy!! We went and registered for Faith's stroller, carseat, and pack n play. Also trying to get things ready for when my Mom comes to visit from FL.

We went shopping today from 12:30-5 and bought a new couch and rocker/recliner for when Faith is here!

We are excited and looking forward to seeing her again on the US on Dec. 6th. We have a full day of exams/tests scheduled. MRI, OB, Echo, US and hopefully another tour of the NICU and birthing center.

We have all been doing well. Ready to face the challenges that are handed to us.

Yesterday we went to U of M and LOVED it there! They are so much more knowledgeable there and kind. We had an ultrasound and she is 1 lb 4 oz at 21 weeks gestation and 23 weeks for me. We had some more 4D pictures taken and they are ADORABLE! The docs at U of M really put us at ease letting us know that she falls into the high better to low great outcomes. So her condition is high on the mild side and low on the moderate side. If that makes any sense. They were upbeat and positive about the outcomes, though a lot is still up to Faith and how much of a fighter she is. And she is a fighter! She is always moving around like crazy!! Yesterday she was completely breech for the first time and her body was shaped like a V. With her hands and feet up by her face. They turned on the 4D and she was wiggling her toes and grabbing her feet, yawning and lots of cute things:)


Her LHR was 1.44! YAY!As far as her condition, her stomach, part of the intestines, and a small piece of her liver are in her chest cavity now. Which is a little more than there was a few weeks ago. But they were all positive and the right lung is developing fine. They are going to do an MRI to get a better picture of the liver and lungs. They are also goign to do an echocardiogram to double check her heart, b/c the left side has low flow and is a little smaller, but all the right parts are there and working.

He predicted that she will be in the NICU for about a month, they will do the surgery a few days after birth as long as she is stable. Then the lengthy process is weaning her off of the ventilator and IV feeding. She will then get a feeding tube and be taught how to eat or "nipple" as they called it. Her need for ECMO is low, but only Faith can decide that.

We also had a tour of the NICU, there were 2 CDH babies in there at the time. We did not get to see them b/c the parents were away.

We are very excited about their findings. They are all so educated and the team of doctors all communicate with eachother at least once a week and they do rounds together. Though we know that there will be bumps ahead, we have a very positive outcome predicted.

After our first ultrasound at 20 weeks, we were told that the doctors were concerned about the placement of the heart and stomach. My world had been turned upside down during my hour drive home from work. I held it together, until my husband fell apart.
This is our first child together and we could not believe that we were recieving this news. The doctors told us not to look it up on the internet because it would sound worse than it actually was. It was fixable was all they told us. We began researching while waiting to get into the specialist a week and a half later.
When we arrived at the hospital in Grand Rapids, we had our ultrasound and they confirmed that she has a LCDH. Her heart is shifted to the right, along with her mediastinum, and her stomach and a large portion of her bowels are in her chest cavity. We had some residents come in and look at the ultrasound because GR only sees about 3-5 babies born with this a year.
We were very disappointed with our visit with the specialist, as we seemed to know more about CDH. They never told us the severity of her case, survival rate, or anything.
Unhappy with the visit we called our doctor and are now in the process of getting referred to U of M in Ann Arbor, MI. We have our first appointment tomorrow. We will keep you all posted!