Thursday, December 30, 2010

January 12!

We now have a plan to induce January 12...if we make it that far. I have to stop taking the procardia that keeps me from contracting next Tuesday so there will be a week in between that and Jan. 12. My next appointment is next Thursday.

Ramsey now weighs 5.5 lbs which is great news! His LHR is over 1 and there are no signs of distress.  I am dilated about 2.5 cm (a little less than we thought) so the doctor said that buys us 20 more minutes of travel time - lol. He said I could have been 3 cm when I was contracting.

Looks like we'll be meeting Ramsey very soon :)

Tuesday, December 28, 2010

36 Weeks!

I hope everyone had a Merry Christmas!! I enjoyed Reed's 3rd birthday and Christmas and was so thankful to celebrate them at home.

We made it one month since I first went into labor! Yay for Ramsey! As long as he weighs 5 lbs or more, the doctors will be comfortable delivering him now.  (The heart/lung bybass machine called ECMO requires an infant to be 5 lbs. but we're hoping we won't need this machine). Thursday at 10:45 is our next appointment. I will update after that!

Thursday, December 23, 2010

December 21 Appointment

Sorry, I'm a couple days behind on my detailed update that I promised...who knew I could be so busy on bed rest! Tuesday marked 35 weeks. I will continue to take the prescription that prevents labor for two more weeks. At that point, we will discuss a plan to induce...possibly at 38 weeks. I hope I make it that far- I can't believe it has been 3 weeks since the premature labor started! If we can't make it that far (and I hope we DO), I'm thinking baby new year would be OK!

During Tuesday's appointment, they did a non-stress test and something called a biophysical profile (BPP).  Ramsey scored 10 out of 10 on the basically checks for any signs of distress, amniotic fluid levels, etc and is similar to an ultrasound. The non-stress test monitors contractions and the baby's heart rate. I had a few contractions during that, and I was so afraid they would keep me and I would miss Christmas, but everything looked normal.

At our next appointment, next Thursday, they will do a complete ultrasound and measurements. I think that covers it.

I wish each of you a Merry Christmas! Let's all remember the true meaning of Christmas, and cherish every moment we can share with those we love!

Tuesday, December 21, 2010

Todays appt. went well.

Todays appt. went well. We'll return next Thursday for our next appt. I'll post more details tonight.

Monday, December 20, 2010

Tomorrow is 35 weeks!

I'm happy to say I am still home, still resting and tomorrow will mark 35 weeks. I am so thankful for each day/week that goes by and relieved that we have made it this far. Hopefully we can make it a few more weeks! I have an appointment tomorrow with my OB- I hope there is no news to report, because at this stage, I believe no news is definitely good news. Looking forward to (hopefully) spending Christmas Day with family!!

Thursday, December 16, 2010

At Home

It's so good to be home! Funny how different my own house looked after being gone for two weeks.

We're so thankful for the help of our family and friends. We couldn't do this without them, especially our mothers who have already been a great help watching Reed and doing whatever they can to keep me resting. We have plenty of volunteers to watch Reed, to cook, shop, or whatever it takes to help us out and we appreciate every offer.

A few people have questioned why we had the amnio done. The amnio was completed to rule out any chromosomal issues that are common in CDH babies. They could have discovered anything ranging from Down's Syndrome to more severe problems that could have indicated a zero percent chance of survival. The surgeons at Children's highly recommended the amnio to rule out any of those life-threatening problems...if that had been the case, they would have known that surgery wasn't an option. So, while we still face the certainty that Ramsey will be born needing immediate care to treat his CDH, we thank God that the amnio didn't reveal any additional problems.

Wednesday, December 15, 2010

I'm Discharged!

13 days later, I am finally headed home. I've been told to only get up to use the bathroom, shower and eat...this should be fun. I can't wait to be home and especially to see Reed. I'm looking forward to lots of cuddle time tonight!!

Tuesday, December 14, 2010

Hot off the Press

The amnio came back normal!!! I feel like everything is going our way right now. I hope this continues well beyond his delivery and surgery. So thankful for answered prayers :)

Monday, December 13, 2010

I'm Coming Home

I am being discharged Wednesday, once the snow storms have passed. They want me to continue resting and hope that I can make it to 36 weeks. (Tomorrow is the start of 34 weeks.) I am less afraid than what I thought I would be about the prospect of being discharged. I do worry about the long drive once I am in labor, especially since it's winter. But, it's good to know I can always go to my local OB if I have any concerns. Also, if the weather should be bad, or the contractions come too quickly, I can always go to Westmoreland and have them bring me to West Penn by lifeflight or ambulance. I just have to trust that everything will work out.

I am so glad I'll be home in time for Reed's birthday on Thursday! Hopefully I'll make it to Christmas too! 

Saturday, December 11, 2010

Outside my Window

Outside my window, there may be bad things- like shootings, (thank goodness no one was seriously hurt), but there are good things too. I see a church steeple and find comfort each time the bells ring. And just a few blocks away, I can view the colorful exterior of Children's Hospital. It's strange, knowing that sometime soon, Ramsey will be born and will taken there, to a place still within my view. I hope seeing the building nearby will be at least a small comfort until I can join him there.

I'm happy to have complete internet access! Blogging by phone just wasn't for me. As you know, I had a Fetal MRI and Amnio last Thursday which ultimately kept here at West Penn Hospital. We are still awaiting the results of the amnio. I hate that it sent me into premature labor, but it was highly recommended that I have it so I can't say that I have any regrets. I believe everything happens for a reason. Maybe its reason was to keep me here where I'm well cared for and resting.

The MRI showed the right lung to have 60-70% volume. That sounded encouraging to me, especially since that was done at 32 weeks and there is still time for further development. The LHR is up to about 1.1; also a good number. The left lung was still unclear. I hope that the people at Children's will have better luck detecting it, or at least telling me if that is common. I assume that it's pretty common, since the stomach and other tissues that have herniated are blocking it. I'm not sure how that affects his chances, but I do know of adults who lived with only one lung. Also, when I went into labor, they chose to give me two shots of steroids to encourage his lungs to grow- I would guess that had a positive effect on things.

Dennis and I enjoyed "date night" tonight (takeout and a movie). I never thought I'd have a date in a hospital, but there's a first time for everything :)

Friday, December 10, 2010

So much 4 staying "boring".

So much 4 staying "boring".
My contractions that started while watching the "crime scene" have finally stopped!

Just watched a shooting out

Just watched a shooting out my window. heard about 10 shots then watched 3 guys running down the st. they just put a body in an ambulance.

Thursday, December 9, 2010

Another good day. Ramsey weighs

Another good day. Ramsey weighs about 4 lbs...1 more lb to our goal weight! We might have the amnio results tomorrow. praying for good news!

Thankful wed. was uneventful. Thanks

Thankful wed. was uneventful. Thanks 2 all for prayers/comments. hope 2 have FB access soon! here's 2 another good day!

Wednesday, December 8, 2010

"Stay Boring" Who knew it

"Stay Boring"
Who knew it would ever be good to hear those words! Everything is going good so I'm happy to be considered a boring patient!

Tuesday, December 7, 2010

The contractions started 2 subside

The contractions started 2 subside before i even took my pill. Your prayers helped!

Please pray with me for

Please pray with me for contracting to stop. Almost time for my pill (now taken every 4 hours instead of 6) and still having contractions...ugh!

My meds are being increased

My meds are being increased 2 prevent contracting...they were every 5 minutes last night.

Monday, December 6, 2010

Monday update Dr. is keeping

Monday update
Dr. is keeping me another week. Atleast we'll be in good hands! Will have access to blog and facebook soon.

Sunday, December 5, 2010

Will see my OB tomorrow

Will see my OB tomorrow and possibly go home. Contractions I'm having are within the normal range. Got 2 see Reed today :)

Saturday, December 4, 2010

No news is good news.

No news is good news. Baby & I are still doing well. Wish I could update more about our last appt but this phone limits my message.

Continued from last message...

... blogging by cell is not easy. anyway, they'll keep me here a couple more days.

Friday, December 3, 2010

Nothing new 2 report!

Nothing new 2 report!

Ramsey is still doing well.

Ramsey is still doing well. hoping 2 ease off the magnesium and switch 2 med. 4 contractions. will stay atleast through sunday or monday.

Still at 3 cm. hardly

Still at 3 cm. hardly any contractions.

Brought to labor and delivery.

Brought to labor and delivery. dilated 3 cm...was given magnesium and the contractions stopped! dennis is on his way back. pray .

Thursday, December 2, 2010

Hello from West Penn I'm

Hello from West Penn
I'm being kept overnight to rule out labor...due 2 contractions and dilated one centimeter. praying to stay pregnant!

Monday, November 29, 2010

Our meeting with Dr. Hackam, Children's Hospital

We met today with Dr. Hackam at Children's Monroeville office. We had a very good impression of him, and were happy that he was both compassionate and informative.  He spent at least an hour with us, letting us know what to expect and answering all of our questions. Once Ramsey is born, he will be placed on an IV and Nasogastric intubation, transported to West Penn's NICU, then transferred to Children's Hospital (CHP) where he'll remain on a ventilator. They will follow Ramsey's lead as far as his care.  The three issues at stake are lung size, the hole in the diaphragm, and Pulmonary Hypertension. To handle the lungs, he will be placed on a ventillator. The hole is an easy repair of stitching or patching but will only be done when they feel Ramsey is ready. The pulmonary hypertension will be treated with medications. If he is really struggling they will put him on ECMO, a heart-lung bypass that will give him a little break. Dr. Hackam didn't speak of statistics or prognosis basically because each case varies so much. He did say that average hospital stay is 4-6 weeks. Of course, this varies, but that is much better than the 3+ months that I was expecting. Let's pray that little Ramsey is a fighter because so much of this is up to him. He has many supporters and I know that will help!

Thursday, November 18, 2010

November 18 Ultrasound

The good news is that the stomach and bowels are still the only thing herniated, there is no sign of distress, and my amniotic fluid is still within normal range. The one negative is that the lung-to-head ratio is .92. (The lung-to-head ratio, or LHR, is a numeric estimate of the size of the fetal lungs, based on measurement of the amount of visible lung.) An estimate over 1.4 can indicate a 100% chance of survival, and anything under .6 is bad.  Ramsey falls right about in the middle. We are thankful that the liver has not herniated and we're not going to worry too much about the LHR. They say it's not always accurate, and who knows, it could keep improving. The doctor said it was better than the last time.

Our appointment with Children's is Monday, November 29. That same week, on Thursday, December 2 we'll return to West Penn for an Ultrasound, some type of heart monitoring, the amnio and the fetal MRI. That will be a long day but hopefully we'll get good results from the tests, especially the MRI. It will allow them to see the lungs in greater detail.

Looking forward to Thanksgiving and spending time with family...

Tuesday, November 16, 2010

Children's appointment postponed

Our appointment with Children's is postponed until the 29th. It will once again be with Dr. Hackam instead of the doctor who is new to Pittsburgh. We're awaiting their answer as to whether I should have an amnio done as well as a fetal MRI. I had previously declined the amnio due to the risk involved, and because it wouldn't have affected our decision, but my OB feels it might be beneficial for the surgeons. 

Our appointment with West Penn will remain on Thursday. It is common with CDH babies to have excess fluid...hoping my amniotic fluid level is still within normal range. When it's too high, there is a risk of preterm labor. 

Monday, November 15, 2010

Anxiously Waiting

We have two appointments scheduled for Thursday- one with a surgeon from Children's and the other at West Penn. Hopefully, the Children's appt. will be kept for Thursday since we learned a few weeks ago that it might be postponed for two more weeks. Evidently, there is a new doctor who we are to meet with and he is awaiting his credentials. He comes from Illinois. I don't want the appt. to be delayed, but I can't help but feel there might be a reason for it, and especially for the new doctors arrival. I'll keep you all posted!

Tuesday, November 9, 2010

Ramsey joins Facebook

I want to thank my new friend Kate Crawford for creating a facebook page for Ramsey!  Through the page, I have already connected with many CDH mother's who are sharing their stories and offering their prayers. Please visit the page to read their encouraging comments, and follow the page by clicking "Like".

I was introduced to Kate after seeing an interview on the local news. Kate's daughter, Shannon died from a combination of CDH and HLHS. Kate met two other mothers whose children were also born with CDH. The three came together for comfort and support. They started filling gift bags with items that they wished they had or needed during their stay in the hospital. The three gave name to their little project, naming it Project Sweet Peas. All children are such sweet peas during the stays, and often resemble little peas in a pod in their beds. Project Sweet Peas slowly grew to a nationwide network of parents who started their own projects to honor and memoralize their own Sweet Peas. Please visit Project Sweet Pea's web site and Facebook page!

Thursday, November 4, 2010

Viagra for CDH!

Just wanted to share this great news story about how Viagra is helping CDH babies! Watch the Video

Wednesday, November 3, 2010

Spreading the Word

Since Ramsey's diagnosis, I've become aware of the need for CDH awareness. Most people have never heard of it, yet it happens as often as spina bifida, cystic fibrosis and congenital muscular dystrophy. I pray that some day there may be a voice powerful enough to inform the masses about CDH, and teams of surgeons capable to increase each child's chance of survival.

In the meantime, I am doing my best to spread the word about Ramsey. I hope to create awareness, and most importantly, to increase the number of prayers that he has. I want to thank Breath of Hope for providing turquoise awareness ribbons and bracelets in order to do just that! We have continued to make our own ribbons, as well as prayer cards to pass out to anyone who wants to know more about CDH and to follow Ramsey's story on this blog.  Since launching the blog in September, there have been nearly 1,500 page views!   I get so excited as the number increases knowing people are following his story, and the number of prayers for him are increasing.

Help us "Root for Ramsey" by passing out prayer cards.  Download the cards here.

Shown are samples of the prayer cards, ribbons and a special necklace I wear everyday. The charm features Ramsey's name, a turquoise bead and an awareness ribbon. (Thanks to CT Jewelry Design at Etsy for helping to create the beautiful necklace!)

Thanks to everyone who follows the blog and to those who have personally reached out to us! We've received emails, phone calls, cards and gifts from friends, family, churches, and even strangers. As difficult as the road ahead may be, we are overwhelmed by the support we have been given and are thankful to be surrounded by so much encouragement, love, and prayers. They say CDH is a roller coaster ride and there is no rhyme or reason as to which children survive. I believe the survivors are those who are backed by faith and prayers...thank God Ramsey's supporters have so much of it!

Thursday, October 28, 2010

October Ultrasound

We left today's appointment with positive feelings. We didn't get a lot of new info, but sometimes no news is good news. There were no signs of distress, and Ramsey's weight is good. He's approximately 2 lbs/2 oz and he measures in the 43rd percentile. The doctor measured the lungs and attempted to obtain a Lung-to-Head (LHR) Ratio, however he wasn't sure he was calculating it right. He'll try it again at our next appointment; I'm wondering if the surgeons at Children's may also be able to determine the ratio. LHR is a numeric estimate of the size of the fetal lungs, based on measurement of the amount of visible lung. High LHR values are associated with a good outcome.  One of Ramsey's lungs is visible, the other is still hard to distinguish because it's blending in with the bowel on the sonogram.

Another factor in successful outcomes is the position of the liver. Because Ramsey has left-sided CDH, I believe his liver is less likely to herniate, which will also help to improve his chances. About 75% of all CDH patients do have some portion of the liver herniated into the chest. Let's hope his stays right where it is!!

We were given this 3D image of Ramsey today.  I assure you, he does have an entire head, but the 3D images don't always appear complete!

We will finally meet with a doctor from Children's on November 18. This is also our next appointment at West Penn.

Wednesday, October 13, 2010

Success Stories

It's so nice to hear CDH success stories!!

Dakota, of Florida is now 2 years old and thriving! I'm thankful that her mother contacted me and shared her story. It's great to have another contact who has been through what we are experiencing. Dakota was born 7 weeks early, on Christmas day. She was transported by plane to UF-Shands, had her surgery, was placed on ECMO and still she survived!

Jason (the grandson of my Aunt's friend) is now an adult and has two children of his own!

Keep the happy stories coming.

Thursday, September 30, 2010

September's Ultrasound

Today, we met with my new Doctor at West Penn for an ultrasound. Also, we saw a pediatric cardiologist to evaluate Ramsey's heart. Fortunately, the heart is in good shape so we won't need to see the cardiologist again! We didn't gather anything new from the ultrasound- our next one is October 28. At a later date, they will be able to measure the lungs to get an idea of how big they are. From what I can tell, while they will continue to monitor things via ultrasound, and hope for plenty of room for lung development, there's a lot we won't know until Ramsey is born and the surgery is complete.  The first step after delivery will be for the NICU team at West Penn to intubate him and take him directly to Children's Hospital, about 5 minutes from West Penn. At Children's he will stay in the NICU until they determine he is ready for surgery. I wish we didn't have to transport him at all, since this is a critical move. We need to schedule a meeting with the surgeons at Children's since we have many questions for them.

Following is a review from our last appointment on August 24, it gives a good explanation of the location of Ramsey's organs and I think it's safe to say that the same condition currently exists. "The baby's stomach was seen to be at the same level as the heart and is present within the left chest area. There may be some amount of small bowel in the chest as well. The heart is shifted to the right, however, pulmonary (lung) tissue is seen behind the baby's heart and there also appears to be some in the posterior left chest." Although the description sounds bad, the doctor said it is easy to put the stomach and bowels back where they belong. The hard part is whether or not the lungs can function.

Thanks to all for their continued support and prayers. It means the world to us, but it means even more to the life of little Ramsey.          

Tuesday, September 28, 2010

Walt Disney World

Just returned from a great vacation with 10 other family members at Disney World! We had a wonderful time and it was a good break for us! Now, time to finish recovering from the flu we caught while there. I'm hoping to feel better for our appointments this Thursday and praying we get some hopeful news.

Wednesday, September 15, 2010

Today's Checkup

Today was a routine appointment in Latrobe, our first since the diagnosis. My appointments will alternate between West Penn and Latrobe, but the role of my doctors at Latrobe will be secondary.  Ramsey's heartbeat was still nice and steady and my blood pressure was good.

Monday, September 6, 2010

The Name

When choosing a name for the baby, we felt it had to be another "R" name, like his brother Reed.  We chose Ramsey, my mother's maiden name.  For the middle name, we wanted something with a significant meaning. When we found out Armand, his grandfather's name, meant "Strong Soldier" it seemed like the perfect choice. We want our little guy to stay strong and fight for a healthy life at home with us :) The name Ramsey means "from a wild garlic island"...I guess his name is strong on two counts!!

Saturday, September 4, 2010

The News

Our first ultrasound on August 24, 2010 told us the good news...we are having another boy! Reed is going to be a big brother!  The sonogram also revealed something more- a hernia. My doctors recommended that we go to West Penn for a Level II ultrasound the following week, on August 30. Although concerned, we were convinced it would be another "false alarm" as we had when we were expecting Reed. (Measurements from Reed's sonogram indicated he might have Down's Syndrome, but fortunately, they were wrong).

At our appointment, we knew what to expect from the previous year. Genetic counseling, followed by the ultrasound. We had the same counselor and doctor who both remembered meeting us almost three years before. The counselor immediately asked what we had been told. We had only been cautioned that it looked like he had a hernia near his stomach. My online research revealed three types of hernias; the first two generally go away on their own, the latter is much more serious and it's called CDH. Immediately, we were told the sad news- it is in fact CDH  (Congenital Diaphragmatic Hernia). Ultrasound revealed that his stomach has herniated up into the chest, pushing the heart aside. Lung development is still unclear (at that point, we could only see one lung).

The Plan:
I will now deliver the baby at West Penn Hospital where I have been assigned a new doctor. The baby will be taken to Children's were surgery/surgeries will be performed. Throughout the remainder of the pregnancy, the baby will be monitored for signs of heart related distress and most importantly, for lung development. 

My next appointment at West Penn is September 30.  We are hoping to have a clearer picture of the lungs and also if any other organs have moved into the chest area. We will also meet with a pediatric cardiologist for an echo of the baby's heart.

Let's pray for encouraging news at this appointment and strength for each of us along the way.