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!