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!

Sincerely,

thanks for reading!! happy New Year!!

blessings, ALo

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

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"

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

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

babyLo

i know that this is LONG overdue...sorry! most of you know that peter and i are expecting our first little one this may! we found out in september and have been so excited! we went to our first ultrasound appointment friday, november 12th. we were so excited to see our little one, to know that things were great and our baby was perfect, after all we were 13 weeks along. we found out during that appointment that not everything was perfect, that the baby was not 100% healthy. during that first ultrasound the doctors measure fluid on the baby's neck. in a normal ultrasound the fluid should measure 3mm or less; ours was measuring 15mm...showing abnormalities. the fluid is coming from around the baby's heart and belly. we were devastated, of course. we sat down with the doctor and a genetic counselor who told us that most likely this was a chromosome disorder, basically a misfiring of information when the egg and sperm met. we were told some disturbing stats, but we also knew that no matter what God is in control. the doctors originally told us there was a 70% change of miscarriage at any point during the pregnancy (not something we were prepared for). we were told about some testing that could be done that day, but we were not prepared for anything that day and decided to hold off on anything else until we could comprehend what we were being told. we came home and were very upset...we called/emailed alot of people asking for prayer. we have felt all of those prayers and we are soooo thankful for each of them! we have experienced an amazing outpouring of God's love through our friends and family...we are more than blessed.

today, nov 30th, peter and i went back for a follow up scheduled ultrasound to check the progress of the baby's growth and check the levels of the fluid. peter and i (and lots of others) were praying that things would be better than last time, or at least not worse. unfortunately that did not happen. the fluid has gotten progressively worse and we are now facing more bad statistics. the fluid has spread farther down the baby's body, but (thankfully) does not involve the head at all. the fluid around the heart and lungs is much worse though. the fluid is now compressing the baby's lungs causing them to not develop. basically, the lungs are like a sponge, when you squeeze a sponge it gets smaller or contracts. unless the pressure is taken off the sponge, it continues to stay contracted. that is what is happening. there is so much fluid that the lungs have no where to expand and grow, leaving them under developed. we were told by the doctor today to expect a miscarriage at some point. even if i were able to carry the baby to term, there is no way the baby would survive because of the decreased lung development. we again were devastated, not knowing what to say. he could not tell us when the miscarriage would happen, just that it is is more than likely. we decided to to go ahead and have an amniocentesis test done today. this test allows the doctors to determine what is happening genetically or chromosomally with the baby. there is a low risk of miscarriage with the test, so i am home today on bed rest. we will have some preliminary results from the test this thursday and the rest will come in 10-12 days. we are now praying for strength and peace, that only God can give! we know that HE knows and cares about this, even more than we do (which is hard to believe!!!). we also know that He will not give us more than we can handle. please pray for us...for wisdom and direction as we continue as well as for peace in the coming days and months.

i appreciate you taking the time to read this and pray for us! i will try to keep things updated as we progress with our pregnancy!! LET'S PRAY FOR A MIRACLE...MY BABY NEEDS ONE!!!!

blessings, ALo

i didnt finish last!

for everyone that knows me you are probably really laughing now! 1. i have not been too physically active for about 10 years. 2. i have never been in a canoe with peter. 3. i have not seriously rode a bike...ever. i have not been on a bike consistently since 5th grade! what was i thinking????!!!!!

ok, so the deal is peter and i did the triathlon!!!! yep, last sunday...i am just recovering!! the above pics are AFTER the big race when we got home. we didnt take our camera or have anyone take any pics of us. i honestly thought that there would be people at the the finish line taking some for us...oh well...as you can see we survived...and didnt place last!!! ok, so here is the breakdown...

we left our house last sunday at 7:15, got down to the race area at 7:45, thinking that would give us plenty of time for our 8:38 start time. we were WRONG!!!! thankfully there were some serious thunderstorms when we got there which gave us a one hour delay. yes...the storms cleared out very quickly and we ended up with GREAT weather...sunny, 75 but very windy...fun for the bike of course! :) so, back to the beginning...we walked about 3/4 of a mile from our car to the bike staging area to set things up. then then walked down "killer hill", which we knew we would run up to finish our race...i was secretly freaking out before the race even started! lets just say, i am not sure how i stayed upright, for real! i saw so many people that had mud stains on their butts! this is not a paved road...it is barely a trail with tree roots to use to pull yourself up the 45 degree incline and then there are about 50 steps to climb to finish...yes, we went down that and then walked another 1/2 mile to the canoe start line...yep, took us a while to get things ready and set! :)

we started at exactly 9:38. every two minutes a group of 6 canoes starts the race...there were over 1200 people involved in the race!! so, peter say behind me during the canoe race and we paddled hard, but didnt kill ourselves, we knew it would be a long day! surprisingly, we didnt get into any "disagreements" during the canoe race (6miles) or any of the race for that matter...i know, not typically me, but i had prayed all week that i would keep my temper and unsportsman like conduct in check :)  the hard thing about the whole thing is that you never see any clocks or times during the race until the finish line. neither peter or myself wore a watch, but we felt like we did well for the canoe portion...about the only time we werent being passed by 100s of people! 

as we finished the canoe race we took a few min. to change from our reef flip flops to our running shoes...we had a pretty good transition, not pausing to do more that what we had to to get back on the race. the next stage is the run (5.5miles). basically, you run back to the canoe area and up to the bikes. before the race even started peter and i had decided that we would walk the run part. partly because my kness had given me so many problems during training, partly because we didnt train enough for this first experience. again, we have no idea how long it took us, but we kept a good pace the whole time. there were a few small hills, nothing major until for real the last half mile which is appropriately called "killer hill" as mentioned above. lets just say this...people have asked me if i would do this race again. the only reason i would not do it is becuase of this hill. IT WAS AWFUL!!!!! by the time i got to the top i was more than out of breath, dripping sweat and exhausted...and they want to get on a bike??? YEAH RIGHT!!! plus i had to pee like no ones business and the only thing available was nasty porta-potties...gross, i dont even like to go in public restrooms that ladies use...these are toilets that every sweaty person in the race uses and they have been sitting in the sun for days...awesome! however i knew that i would fail if i didnt go...i guess that was the least of my worries for the day, it just seemed like a big deal after killer hill!

after a few cups of warm powerade, a granola bar and a trip to the big orange mobile toilet, peter and i got on our bikes for 18 miles!! yep...i rode my bike for 18 miles!!! the bike really was not bad at all, i was just SUPER slow!!! poor peter...he had to wait for me alot during this part of the challenge and he is a saint for it! the course was flat and through the cornfields, but SUPER windy!!! i am pretty sure my toes were numb before mile 6, but i just kept creepin along! 

months before the race i had asked peter to stay with me the whole race, to not leave me behind..i had several reasons, but basically i just didnt want to do the race alone. he of course said he would and he did more than stick with me...he trained with me for several months prior, he kept me excited up til race day, calmed my nerves the day of, and encouraged and supported me the WHOLE time!!! he came behind me when i needed a boost and came ahead of me to lead when things were uncertain! we knew that the race would be a big test for us and our marriage and i can honestly say i have never been more sure or excited about us than i have through this whole process!! as we came up to the finish line we had to dismount our bike and walk them across the line...we came in at the same time...side by side...smiling the whole time! about 30 seconds later i started crying...from appreciation and love that peter did more than he promised, from excitement that we finished alive, and from pure exhaustion!! eventually i calmed down and stripped out of my sweaty clothes to change and go enjoy some food and live music.

a week later i still feel so blessed that peter and i were able to do this challenge together and say that we survived. it took us 4 hours and 9 minutes...could have been better, but we FINISHED!!! so, thank you to all who encouraged and supported us and who care enough to read this...i know its long!! :) p.s. i treated peter and i to massages today...nice perk of post race recovery!! :)

blessings, ALo