Text Box: Text Box: Wednesday, May 11, 2005 3:22 PM As most of you know we recently found out via numerous ultrasounds that our baby girl, now 18 weeks gestations is in need of prayers.  At this point, without having an amnio, the only thing we are fairly certain of is that she has a serious heart defect.  We have had a regular 2D ultrasound with a sonographer, a 4D ultrasound with a high-risk OB and a level 2 ultrasound with a Perinatologist.  From what we can see, the left side of heart is very small and the right side is larger than normal.  The doctors like to call this Hypoplastic Left Heart Syndrome.  There are also other anomalies with her heart that either we forget or don't understand.  There is a top doctor in St. Petersburg we may see in the future and learn more about the options, if we are dealing with a heart defect alone. However, at this point there are other indicators that she may have a chromosomal abnormality.   She has characteristics of trisomy 18, which in most cases, especially with a serious heart condition like this one, they live only a short while if they aren’t born in Jesus' arms.  She has about 5 or 6 signs of this disorder, but also they can be found in normal healthy people.  We were told yesterday to think of it as if you are going to 7-11 and buy 5 scratch of lotto tickets.  You may win $100 on one, but if you win $100 on all 5, you start to wonder what's happening.  But, they also said that if you go looking for something, you may just find it, only because you are looking for something wrong.  She is still so little that things could change as she grows. We are not in a hurry to get an amino, as terminating the pregnancy is not an option for us.  However, we may do so in the future, for ruling a chromosomal issue would allow us to plan for open heart surgery.  We were told yesterday, out of the babies with this heart condition who make it to their first surgery, 60% will do well.  We are hoping and praying for a miracle and asking for your prayers and those of anyone you know.  We will keep you informed as we find out more information.  Thank you for helping us love and pray for our little girl. Love, Courtney and Terry Thursday, May 19, 2005 4:13 PM We would first like to thank all of you for your continued prayers.  As much as we wish that we had good news to share, we are sorry to say that our fears were confirmed when the amnio results came back Monday evening.  I had a very short discussion with the genetic counselor after she informed me that the test came back positive for Trisomy 13 and that the margin of error is .004 although she has never seen a false positive in her career.   We were told by the doctor that both Trisomy 18 and Trisomy 13 are "lethal" and it wouldn't make sense to plan on heart surgery after birth, as she would "die anyway."  The statistics aren't much better better. After the phone call, I was visibly upset and quickly comforted by our four year old princess, Juliana.  She asked why I was crying and I told her that I was sad because Mommy and Daddy want our baby girl to come and play with us, but the doctors just told Mommy that God may  want her to go to Heaven instead.  She patted my back and said, "it's OK Mommy, she would much rather play in Heaven with the Angels."  Then she continued to dance around the kitchen.  If only we had the faith of a child! We have found hope and comfort in reading stories of children who have survived and are doing well.  We will probably continue in seeing a cardiologist and looking at the options, as we were told that she could not survive without surgery.  We are continuing to pray for a miracle, but our primary goal is to see that our doctor is wiling to work with us in doing what ever we can so that she may be born alive and receive the Sacraments of the Church.  As for now, we are enjoying each moment we have with her as she is swimming happily inside me.  As some of you know, we have a strict family rule that we never name or discuss any names we are considering outside of our marriage.  We decided to bend the rule this time, to help us bond with our daughter now.  We have named her Gemma Therese after St. Gemma Galganti, who's Guaridan Angel would appear to her.  She was also cured of a fatal illness by a miracle.  We are asking for her intersession along with Pope John Paul the Great.  Please continue to keep our little Gemma in your prayers.  Much love, Courtney and Terry Wednesday, June 15, 2005 8:54 PM We would like to thank everyone for your thoughts and prayers.  Unfortunately, we had another bad doctors appointment today.  We didn't think it could get any worse, but it has.  In addition to a very serious heart condition that would require immediate open heart surgery, her kidneys and digestive system are not functioning properly and medically speaking it would not be possible for her to surive outside the womb. Our miracle may very well be that she is alive right now.  The kind doctor encouraged us to love and enjoy her now because the reality of it is that 80-90% of these babies die (spontaneously abort- I think she said) between 20-30 weeks gestation.  We are still hoping and praying for a live birth, but are trying to love and embrace this new life God has given us, no matter how short, and accept His will whatever that may be.  Thank you again for you love, your thoughts and your prayers.  Love, Courtney and Terry Wednesday, June 29, 2005 8:30 PM Well, we would like to thank everyone for your prayers for our little Gemma.  They are working!  Keep 'em commin!  We had another doctor's appointment yesterday and little Gemma's heart doesn't appear as bad as they first had thought.  Although her kidneys still do not appear to be functioning, there could be other reasons for these findings.  However, it does concern us that she appears unable to swallow and produce the amniotic fluid which is essential for lung development.  But, with God, we are hoping and praying that this will change just like her heart. Also, we were told last visit that she has an omphalocele (her intestines did not form properly inside her body).  Last appointment we were led to believe that it was VERY serious and would require 3-4 months of hospitalization.  Yesterday, it looked very small and we have since found out that this may be more easily repaired than we had initially thought.  Gemma is now 25 weeks gestation and is continuing to do well inside me, despite the doctor's predictions that she will pass before week thirty.  We were happy to find out that those predictions were based solely on statistics and NOT on Gemma's actual health concerns and condition.  We now understand a little better why we continue to find children who were born alive with this condition and children who are still alive with FULL trisomy 13. Their parents do not terminate the pregnancy!  Although some children with this condition unfortunately do die in utero, we believe the statistics very well may not be accurate due to the high number of babies with this diagnosis who are aborted.  Yesterday we were reminded of the culture of death that we live in and perhaps the reason why 80-90% of these children are said to die between 20 and 30 weeks.  I was told by the doctor, in a very loving and compassionate voice that "we could terminate the pregnancy at any time by inducing labor for good reason, and that this (our daughter's diagnosis) is indeed a very good reason."  We are truly saddened that any doctor would recommend such a thing to a child who just very well may survive, but are aware that our doctor  may have been legally required to give us such an option.    Despite our frustrations, we are grateful for the doctors yesterday for allowing us to tape our baby girl with their 4-D ultrasound which we will cherish forever.  She is indeed a beautiful child of God!  We believe that God created our little Gemma the way He did for a reason and want to embrace every minute of her life while she is here with us, however long that may be.  Thank you for praying for and loving our baby girl.  love, Courtney and Terry Friday, July 15, 2005 9:42 AM Dear friends and family, We want to again thank you for your prayers.  They are working!!!  Keep ‘em commin!!!  God is listening, especially to all the children who are praying of our little Gemma. We met with my OB yesterday and Gemma's kidneys appear to be working, as the amniotic fluid level is normal!!!  We have been praying to St. Margaret of Antioch, the patron saint of kidney disease and apparently she has been working over time!  The doctors don’t want to "give us false hope", but we view this piece of news as good! I have spoken with an OB in Orlando, to look at the option of delivering at Arnold Palmer and to see if the neo-natal team would be willing to treat our daughter.  I first explained that we want to offer aggressive treatment that would just allow us to get her nutrition and hydration and allow for the possibility of getting her home under the care of hospice or a home health care agency.  I was initially told that treating her would be a gross waste of resources and that they wouldn't want to resuscitate a child like ours.  I got a call back today with much better news; that doctor had talked with a neonatalogist at APH and they ARE willing to talk with us about correcting her stomach so that she can eat and we can perhaps take her home.   We still do not know when or where she will be born or how her outcome will be, but we do know that our baby girl is alive today and that God can and does answer prayers!  We are hoping and praying that God will answer ours and those of our four year old, "that Gemma can please come home for just a little while before she goes to Heaven."  Although I wish if we could promise Juliana that God will answer our prayer the way we want, we pray for the strength to accept whatever His will is for our little Gemma and for the courage to stand up for our daughter’s live.  Thank you again for your continued prayers.  Much love, Courtney and Terry Tuesday, August 2, 2005 10:06 AM (Gemma's perspective) Thank you everybody for your prayers!  I have now been in my Mommy's tummy for 30 weeks (28 if you take away the two gimme weeks they throw in) even though the doctors said I would never make it this far. I've been listening to the doctors and to my parents.  My Mommy and Daddy continue to worry about me and lately they have been crying more.  I hear the doctors tell them about my medical condition, and as much as I want to come home and play, it looks like God wants me to come Home to play with the angels.  Because of my extra chromosome, most of my major organs didn't develop the way they do in most babies and my Mommy and Daddy can even see it themselves on the ultrasound screen - half of my heart is so small that in order for me to live on this earth, God would have to give them a very big miracle.  I heard the doctors tell my Mommy and Daddy that they can't fix my heart because of my other problems and they can't fix the other problems because of my heart.  But, I listen to my angel who tells me that it is OK and she will take me to a very beautiful place called Heaven when it is time.  My sister tells me that Mother Mary will take good care of me and that she will even take me swimming and to the park in Heaven!  But, this makes my Mommy and Daddy sad, because they want me to come home and play with them. Although everyone continues to ask God to heal me, my family is realizing that they will probably have to say goodbye.  Mommy and Daddy have decided that they will let me go peacefully in their arms, and if God decides to let me stay on earth a little while, they will have the doctors look at me after a day or two.  Unless my condition changes, I will more than likely be born at North Collier Hospital (in Naples) and my Mommy's OB, Dr. Heitmann, who has been wonderful in supporting my family's beliefs and decisions, will be delivering me.  My parents want to make me comfortable, give me lots of hugs and kisses and introduce me to my big sister Juliana and my brothers Shane and Ryan.  God may still take me before I'm born, but if He does, my Mommy and Daddy will be happy that I didn't have to suffer.  Everybody is going to continue to watch me very closely and monitor me during labor (if that is how I'm born) and do everything that they can so I can be born alive and baptized.  Since both of my brothers were born early (at 33 and 32 weeks), I may come early too.  My Mommy asked two people to help send out the word when I'm on my way, her friends Alyssia and Jayne.  So, don't be alarmed when you get those e-mails. You may first get an e-mail from Alyssia and then follow ups from Jayne, as Alyssia will try to come and see me.  (My grandparents and aunt and uncle will get a call.  If at all possible, please try to come see me once you get this call.)  Although my Mommy and Daddy still hope and pray that I won't go to Heaven for a very long time, if my angel takes me shortly after birth they are planning on having a Mass of the Angels and would like for everyone who can to please try to come.  My entire family wants to thank each of you for your thoughts, prayers and encouragement during this difficult time.  When my angel takes me to Heaven, I will be sure to pray for you.  May God bless all of you. Much love, Gemma and family Sunday, August 28, 2005 2:34 PM We wanted to give everyone one more update before our precious baby Gemma is born.  From what we can tell, her health remains the same.  Her heart defect appears to be severe.  From what our uneducated eyes can see, we do not see a normal 4 chambered heart, but rather two large chambers and if you look really hard you can see the other two chambers, but they are very small.  This remains our biggest concern, as the left side of the heart delivers oxygenated blood to the body.  Her other problems include very large cystic kidneys, an omphalocele (her intestines didn't form completely inside of her body), possibly undeveloped lungs (fluid level was low during a critical period), fluid in her brain, and multiple cysts.  We still hope and pray for a miracle, but due to the multitude and severity of her problems, we have made the decision to have her delivered here in Naples.  Because of Gemma's kidneys being so big, the doctors are concerned about rupture and feel that delivery via C-section is our best bet for a life birth.  We have met with the hospital staff and they have been outstanding so far. Our OB, Dr. Heitmann has been incredibly supportive and we fell so blessed to have such a loving, compassionate physician.  After looking at our calendar and listening to the advice of various doctors regarding the best time to have Gemma delivered, we feel comfortable having her delivered in the 36'th week.  It just so happens that the Blessed Mother's birthday falls during that week and Dr. Heitman and the neonatologists have agreed to tentatively schedule a c-section for September 8 (Mother Mary's Birthday!) at 12pm.  Our desires remain the same, that Gemma may be born alive and baptized and that we may be able to hold and love her for as long as God allows.  We are also hoping and praying that she will survive long enough to meet family and friends.  We want to celebrate each precious moment of her life and will try to have an e-mail circulated shortly after her birth.  If Gemma hangs in there for longer than expected, then we will either try to arrange with Hospice to take her home, or have her transported to another hospital to be evaluated and perhaps treated.  We are going to allow Gemma to tell us what to do and pray that God will give us that intuitive knowing once she is born.  We are very grateful for all of the wonderful people that God has placed in our lives during this difficult time and want to thank each one of you for your love, support, and most of all your prayers.  We ask that you please continue to pray for a miracle and lift Gemma up in prayers during these last few weeks.   May God bless each and every one of you! love, Terry and Courtney   A collection of e-mail updates to friends and familyJourney's with GemmaHomeNextBack