Tuesday, December 28, 2010

the letter

well, we all survived christmas and a blizzard in new jersey! now, i am back to the grind for a few days before a respite in florida for NYE!

i just wanted to update everyone on where we are with the whole rude doctor issue. i called the monday after said appointment to see if i could reschedule the remaining appointments with the other doctor. well, that cant happen :( i have decided to cut my hours back at work to every tuesday and thursday and every other saturday (peter is totally excited to have a wife again instead of a roommate!). well, the other doctor only works tuesday and thursday afternoons and i cant take off every two weeks for an ultrasound and i dont want to be going to 2 different doctor locations to see him on a different day when i also have to see my regular Ob every two weeks. i then asked if the nice tech, Kathy, could just do the scans and send the results to Dr. Wood (my OB). apparently that cant happen either. Dr. Kovacs, aka crazy lady, has to come in, do the scan, and then sign off on the chart. GREAT! so, apparently this is going be a another test of my patience! per Dr. Wood's suggestion and the developing issues, i decided to indeed send Dr. Kovacs a letter. the following is the letter...i tried to be direct without being rude or crazy...i hope she gets the hint!

Dr. Kovacs and Associates:

I have been a patient at the Miami Valley office for the last several weeks and have been under the care of Dr. Kovacs and Dr. McKenna. As you are aware, my first ultrasound showed excessive fluid in the nuchal fold. I have come back for two other appointments including an amniocentesis test. My husband and I have been told that our little girl has turner’s syndrome and with all of the fluid in and around the baby’s body there is no chance of survival past delivery. I understand that this is a very slim chance, but because of our faith and religious beliefs we are hoping and praying for a miracle. We understand that the miracle would be life past delivery and that, regardless, the baby will be facing difficulties. In knowing what we know, all the facts that your office and Dr. Wood’s office have given us, as well as our own research, we know what we are up against. With that being said, we will never terminate our pregnancy. We are choosing to carry until the baby’s heart stops beating. We know that if the baby is born there will be very severe complications. My requests from this point on are that termination will not be brought up or asked of us again and that conversations of complications will only be brought up if there are new or changing situations. As you can imagine, this situation is very hard for my husband and me. I am now coming every two weeks for ultrasounds and to see Dr. Wood. I have been trying to stay strong and be positive and that would be much easier for me if I were to come in and not have to worry about defending the choices my husband and I have made. If there are questions or a need to change my appointments, please feel free to contact me. Thank you for your help and patience as we are going through a very hard time!


thanks for reading!! happy New Year!!

blessings, ALo

Sunday, December 19, 2010

The Honest Truth

honestly, i have had a rough 2 days. sometimes i am not sure how i am supposed to act or feel. usually, i try to keep it together and stay strong, but yesterday that was a real struggle for me. i am just sad and then i feel very selfish. selfishly, i want my baby to be healthy and "just fine" and selfishly i want to plan a nursery, have baby showers and most importantly be looking forward to bringing her home. i know that this is a big deal to me and consumes most of what i think about, but this is not all that is going on around me. everyone i come into contact with has something going on in their lives that may seem devastating to them too. that is why i feel like i need to keep it together (poor peter, my awesome hubby, has to deal with me when i cant do it anymore).

my appointment friday went as most people would expect. i still always hope for something good or a positive change, but that will always be a very slim chance. thankfully my awesome mom came down to go with me! she came thursday afternoon and took peter and me out to a nice dinner and then had her hair done (a nice perk for her!). friday started early with an ultrasound. i had a really sweet ultrasound tech named kathy; she has done all three ultrasounds for us and knows our case well, she also assisted in the amnio test. she is always very nice and explains things to me when i ask (which is very often!). as we were looking at the ultrasound, it became very clear to me very quickly that things had gotten much worse. at 18 weeks, the baby should look like a baby and should be easy to recognize all the fingers and toes. on our poor baby every thing is full of fluid and looks very puffy. it's as if you took a latex glove and blew into it, that glove blows and everything looks like an over stuffed sausage. that is what our baby's arms and legs look like. you can see the bones as a thin strip and then all the fluid around them. this is the first time we have seen this...in 3 weeks the fluid is progressively moved over the entire body. her little lungs have still not grown since the 13 week appointment. she still has a strong steady heart beat, but it is having to work much harder to pump through all the fluid. i am sure there is more, but those are the things that stick out to me. at the end of the scan, the doctor came in to go over everything with me. i already knew what was a going to be said (i have done my research and know how things are supposed to be). i told the doctor what i had seen and she told me i was right. she proceeded to say that with all that was happening we had the option of termination. this is the same doctor that i have already told 2 times that we would never terminate. so, i responded that peter and i had "faith and were believing in a miracle, and if we don't get that miracle than we completely understand what we are up against." the doctor then turned to me and said, in a very pessimistic tone, "oh, so, you are ok with having a baby with a webbed neck?" i quickly responded in somewhat shock, "yes, at this point we would be ok with having any baby, even with disabilities." i was so upset, especially because a webbed neck (a cosmetic side effect of turner's syndrome) is going to be the least of our worries! my mom and i left somewhat dumbfounded by her comments. we went upstairs to my OB appointment with my sweet doctor, Roberts Wood. i told him what happened and he has encouraged me to write a letter to the practice that does my ultrasounds and tell them why i was upset. he explained that she would never understand our faith (he is a believer too!) but her comments and insistence of termination are not appreciated. i am also going to make sure she is no longer the doctor i will see there...i will have to go every 2 weeks for an ultrasound and check up from here on out.

 i try so hard to be strong during my appointments, but her pessimistic attitude/comments about this pregnancy make it very hard for me. i have tried to make my faith and beliefs clear without being one of those crazy people, but friday i wanted to throw everything out the window and kick the lady! then, after i was mad and after my mom, who was for once totally speechless :), and i laughed about it, i got very sad. not sad for me, but for all the people who have probably listened to the advice and allowed this women, and other doctors like her, to play god and be the one to determine the future of their babies. i am and will be sad knowing the facts and stats we are up against. i am tired and worn out from everything, but in no way will i ever give up and let someone else be in control. God has me right where He wants me. He has never left my side, even when i wanted to kick that crazy lady!

 please pray that i can continue to be strong, that i wont give in to what might be an easy way out. please pray that God will give me rest emotionally and mentally. peter and i are traveling to new jersey and florida, please pray that things go smoothly and things with the baby do not change over the break (i am nervous enough about what is coming without having things change and end up in a hospital out of state). thank you for all your prayers and continued support...i am so blessed!!

blessings, ALo

Tuesday, December 14, 2010

take heart!

hey everyone. it has been a week since my last post, but not much has changed with baby stuff. the good thing is that she is still in there, hopefully getting bigger and stronger. the final results of the amnio test did come back stating that baby girl is missing one of the X chromosomes, but that, thankfully, nothing else is missing or impaired. these results do not change anything for us, but they do tell us that it is definitely Turner's syndrome. the chances of this ever recurring in one of our pregnancies is less than 1%. the doctors want to continue to see me every two weeks along with frequent ultrasounds. my sweet momma is coming from michigan this week to go to the appointments with me. i have an ultrasound first and then my regular OB appointment. ideally, the ultrasound will show a decrease in fluid and show that the lungs and other organs are developing on schedule, or at least more so than the last appointment. obviously the risks are still high and there is a chance that there will not be a heartbeat. factually i understand this and feel capable of dealing with this. emotionally i feel totally unprepared and totally freaked out. please pray that regardless of what we find out i am able to stay strong an know that God is ALWAYS in control!! i have been reminded of a verse lately that means a lot to me, i hope that this brings you some peace with whatever you have going on in your life...especially during this holiday (crazy) season!

blessings, ALo

John 16:33 "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world"

Tuesday, December 7, 2010

it's a girl!

i have been a little overwhelmed as of late and have not updated lately...sorry. ok, so if i talk about the facts it somehow feels less real. the facts from before have not really changed, we now have names for the disorder and details is all. the FISH test, which is part of the amniocentesis, found that our baby is a girl and that she is missing an X chromosome. this is what is contributing to all the problems that she is facing. the problem is not about the lungs, that is the result of the problem. the syndrome is called Turner Syndrome. to the knowledge of all my doctors and genetic counselors, no baby diagnosed with Turner's from conception (or before birth) has never survived. in fact, most pregnancies like this miscarry before the first trimester. so, basically, this is different than most Turner pregnancies making it hard know what will come next. my OBGYN, who i really like, told me that this is the first time in 15 years that he has ever seen this. he told me that the baby is basically experiencing congestive heart failure. the heart is beating, but not pumping fluid through the body like it should, which is why the fluid is building up in the chest and abdomen. the fluid is causing the lungs to not develop. the doctors are saying that the fluid will continue to stunt other organs or will stop developing as well. however, the baby will continue to grow and survive because the heart is still beating. my body is keeping the rest of things going, basically like life support. so, the outcome has not changed...there is still no chance of survival. the hard part is that the pregnancy could continue for a while, if not to term. yes, we are still praying for a HUGE miracle, but we also need to prepare for reality. it is hard to be normal, i am not sure what normal is right now. i am scared of something happening and not having peter there. i am sad i dont feel like i can be excited about much...this is no longer a "normal" situation. i hated hearing that there was no longer a 30% chance to carry and deliver a baby to bring home. so, the next thing is my appointment with my OBGYN. i will go every two weeks to check growth and the heartbeat.

those are the facts. but i know that my God is so much bigger than facts. even if things do not change for our baby, we know that we are not alone in any of this. God has been so close and comforting to peter and i over the last few weeks and especially the last few days. we just keep saying, God loves our baby so much more than we do and He is going to do what is best for her.

thank you for all the prayers and support and encouragement. i am not sure what to ask for other than patience, peace and health. we are so blessed beyond measure and we know that we are going to be more than ok through everything!

blessings, ALo

Wednesday, December 1, 2010

much needed!

this is from the book Jesus Calling, by Sarah Young. i had been reading this for a little bit, but had slacked off. a friend a quick excerpt and i thought it fit how i feel today perfectly! i hope that you can get some comfort from the words as i have!

blessings, ALo

From the Book Jesus Calling- by sarah young

"I am involved in each moment in your life. I have carefully mapped out every inch of your journey through this day, even though much of it may feel haphazard. Because the world is in a fallen condition, things always seem to be unraveling around the edges. Expect to find trouble in this day. At the same time, trust that My way is perfect, even in the midst of such messy imperfection. Stay conscious of Me as you go through this day, remembering that I never leave your side. Let the Holy Spirit guide you step by step, protecting you from unnecessary trials and equipping you to get through whatever must be endured. As you trudge through the sludge of this fallen world, keep your mind in heavenly places with Me. Thus the Light of My Presence shines on you, giving you Peace and Joy that circumstances cannot touch.

Psalm 18:30 As for God, his way is perfect; the word of the LORD is flawless. He is a shield for all who take refuge in him.

Isaiah 41:13 For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you