 |
| Ryleigh Hannah (2009) |
 |
|
|
 |
|
Ryleigh Hannah
(2005) |
 |
|
|
 |
|
Ryleigh with Dr. Roger Mee
|
During my pregnancy, I seemed to always have a feeling that something was wrong with our baby. Even after she was born and lying in my arms, I said to my husband, "I am scared...I think there is something wrong with her!" his response to me was "Look at her...she is beautiful...she is fine...there is nothing wrong with her." I just could not agree with him...I just knew. All of our family, including my husband, departed for the night. An hour or so later I was approached by my friend (I work at the hospital where I delivered) who was the afternoon shift nursing supervisor. She told me that Ryleigh had a heart murmur and that the family doctor was on his way in to see her. She thought it was best that I called my husband back in. I argued with her a little that I did not think it was necessary...but she insisted. When he arrived, we both were under the impression that this was just precautionary....never did we dream the doctor would enter my room to tell us that she was going to be life-flighted because her heart was almost double its normal size. He was not able to tell us exactly what was wrong with her, because he didn't know. I just looked at him and asked "Is my baby going to die?" The best response he could give me was "Not if I have anything to do with it!"
From then on out, it was pretty much a blur. When my family asked one of the nurses what she thought, her response was "If this was my grandchild, I would start praying now." The priest from our church was then called in to baptize our precious little girl. As we sat in the nursery and watched her oxygen saturation gradually drop to 55%, the anesthesiologist (another friend of mine, which happened to be in house for a c-section) turned to me and announced it was time he had to intubate.
She was then transferred to another hospital. It wasn't until several hours later when I was contacted by the hospital with the diagnosis Tetralogy of Fallot with Pulmonary Atresia. Again, I asked if she was going to live. The doctor assured me that children with this diagnosis usually do very well, though she would require many surgeries during her life. At 5 days old, she underwent the B-T shunt, a procedure that usually takes 3 hours but took 6 due to clotting problems. She recovered well and was home at 13 days old. The year went on...though it was tough! Having a child with a heart condition that is not completely fixed brings a lot of fear to everyday life. I feel that I missed a lot of the 'baby' days because they were spent being preoccupied on what might happen to her. I also spent many days crying...only to be consoled with a hug, smile and a kiss from my little girl Ryleigh.
At 9 months old, her saturation that once started out around 100% has now dropped to 65-70%. We knew that it was time to step to the next level. We met with Dr. Tamar Preminger (Cardiologist) and Dr. Roger Mee (Pediatric Cardiothoracic Surgeon) at the Cleveland Clinic. They both agreed that it was time. On October 31st, 2001 she had her complete repair...things went like a dream. Surgery was performed on Wednesday and she was home on Sunday. This was the most amazing event I have ever seen. I must commend Dr. Mee for his talent....we now think of him as our second God. He should be very proud of the children's lives he saves everyday. If you think my story is long, when it comes to him, I can go on forever!
Since this amazing day, our little girl has climbed a huge mountain. Things have always went up, never down! Her energy level is just amazing! She recently began crawling...now we can't keep up with her!
Though we foresee another surgery in 3-5 years to replace the conduit and valve with a larger size, we are truly enjoying every day with her now. Dr. Mee and his staff have instilled so much confidence in her condition, now we are really able to be comfortable with what we have been given. She is an amazing baby!
I know that this seemed like a novel... but in my mind you just got the short story with a very happy ending. Before we part, I would like to share my motto that I have adopted and repeat to many families that I meet. "No matter what you are going through ...there is someone out there going through something much worse!" I can think of many things that are much worse that can happen to children compared to a congenital heart defect.
April 2003 Update
Ryleigh, now 27 months old, visited her cardiologist, Dr. Tamar Preminger at the Cleveland Clinic this month. Her echo showed excellence! They are so happy with her overall condition that we are released for an entire year! We sure will miss everyone there!
On the day of her birth, Bill and I never dreamed that we would have such a loving, intelligent, and energetic little girl. We actually had a hard time picturing her even being with us. There are times now that we forget everything she has been thru! We were blessed with such a miracle!
June 2004 Update
Ryleigh met with Dr. Preminger on June 21st... once again, she had awesome news for us! She said that our little Ryleigh is doing GREAT and the results of her echo and EKG show that she is nowhere near ready for another surgery!!! The closer we get her to her early teenage years... the better the chance for the insertion of an adult sized conduit.... which in turn would mean less future surgeries!!!! We are ecstatic to say the least! She has no restrictions whatsoever...she is on no meds....she eats like a horse.....she resembles the energizer bunny that keeps going and going....just a normal little gal! We are excited to get her going in T-ball next summer! WOW...how the years have flown!
Another bit of good news is that that Dr. Mee will be at the clinic for another 5 years. It does not sound like we will be needing him in that time period (of course you never know) but just the fact that he will be around to save that many more lives is GREAT!
December 2009 Update
Ryleigh is almost 9 years old now and has grown like a weed over the last couple years. Recently we have found out that she is outgrowing her pulmonary conduit that was placed at only 10 months old. She is showing more signs of shortness of breath which would prove that less blood is cycling thru her lungs from her heart. With the help from her wonderful cardiologist, Dr. Tamara Preminger, we have almost nailed down our surgeon of choice. Dr. Edward Bove from the University of Michigan will more than likely be performing this surgery on Ryleigh. With our family being Ohio State Buckeye fans, Dr. Bove goes to show that not everything in Michigan is bad!! :o)
We will know more after the first of the year as to when this surgery will take place. We would like her to be able to finish her 3rd grade year and then do surgery in June with the entire summer to recoop...but obviously will do it whenever necessary.
