Dear Charlotte

Dear Charlotte,

Four years ago today we saw your sweet face for the first and last time here on earth. For months after you were born I was so sad, depressed, heartbroken, beat up from loosing you. I wanted you so badly from the very first moment I knew I was pregnant. The first time I heard your little fast heart beat at 7wks, I was totally in love with you. Later, when we found out you were sick, I pleaded and begged God to heal you, to "fix" you. I wanted you with me until I was old and grey.

But God, in His infinite wisdom, had a much better plan for you. Today, we are celebrating what would be your 4th birthday with us. But, sweetie, I know that you get to celebrate everyday. You are perfect in Heaven. You are whole, healthy, and clothed in righteousness!

I will be honest. Charlotte, mommy misses you, very dearly! I will never stop celebrating your birthday, and I will always remember all that you did to change my life, your daddy's life and the lives of so many others. You made me a mommy...you made me a mama bear in preparation for your little sisters. I know that the last three years I have used the weeks leading up to your birthday to be used for sadness and hurt and pain. I even told your daddy and others that I get a free pass to be mean and angry and on edge because of the pain in saying good bye to you much too soon. But this year I am really trying to choose joy. Joy in knowing that you are exactly where we should all want to be. Joy in knowing that you are exactly as God created us all to be...pain and sin free living with Him in celebration. I am choosing joy knowing that not every part of your life was sad...there are several people here who will meet you in Heaven one day because of your legacy and the impact it had in showing God's true character and love for them. I am choosing joy because of who you helped/are helping me to become. Your life will always be so much more than the moments surrounding my pregnancy and labor and delivery. But even those moments are sweet and part of your story...if i choose to see those.

Charlotte, yes, you will see mommy cry today. I will cry tears of different kinds...missing you tears, happy for you tears, telling your little sisters about you tears, wishing i could hug you tears, tears when i sleep with your blanket in stead of you tonight, love you forever and forever with my whole heart tears. But I promise to bring honor and glory to God in each moment knowing that because of Him I am blessed to call you my daughter, my sweet angel girl.

Charlotte, happy 4th birthday!!! I wish you were here helping me make you spaghetti and meatballs birthday dinner. I wish you were here to enjoy your birthday cake and some balloons. But I know that you are in Heaven dancing and singing and I can't wait to get there and join you!! You bring me so much JOY!!! I love you, Charlotte Jean!!!

xxoo, mommy

Nuchal Translucency Test

if you are somewhat new to my blog, or do not know our story very well, you may have NO idea what that title means. a nuchal translucency test is part of an ultrasound, specifically taken between weeks 11-13 of gestation, to check for certain birth defects. the nuchal fold is on the back of a baby's neck. in a normal test, that nuchal will be 3mm or less. if a baby has a nuchal fold measuring more than 5mm, there is cause of concern for certain birth defects. this is the test that changed our lives almost two years ago. the nuchal translucency test was the first indicator that our sweet Charlotte was very sick.

peter and i got to see our sweet baby for the very first time during this ultrasound. we had actually been delayed a week due to a horrible traffic accident that made us miss our appointment. anyway, we saw Charlotte at 13 weeks on the screen...moving around, heart beating, looking totally normal to our unknowing eyes. we soon found out that not everything was ok. a doctor came in did a few more rush movements of the ultrasound thingy (nice terminology, huh?) and told us that our baby had "a nuchal fold of 15mm, she has severe disabilities". most of you know the rest of the story. if not, here is a link to the main parts.

through our whole pregnancy with Charlotte, i did copious amounts of research. i researched nuchal tests, botched nuchal tests, anything and everything with Turner's syndrome, anything and everything with most chromosome abnormalities, survival rates, how to raise a child with disabilities, EVERYTHING!! i think i drove myself crazy trying to figure everything out. that has led me to probably knowing and worrying about too many things now. i know, according to my doctors and previous ultrasounds, that i should have nothing to worry about with the LOtwins, but that doesnt matter. i know, through my own research and previous experiences, that even when things can look great in the beginning, they do not always end well...they can get worse.

tomorrow, peter and i are going to see our twins again...and they will be having a nuchal translucency test. again, this is not much more than a hi-tech ultrasound. they measure the fluid on the baby's neck, just like when they take their "head to rump" measurements in any ultrasound...click and drag a mouse button. i have been almost fearing this ultrasound, this day, since we were told we were pregnant. i fear that we will be, once again, told that there is more than 3mm of fluid on one of both of the babies. that we will be forced to hear the awful words..."your baby is not quite right".

i know many have been in my shoes. and i know that rarely is someone given bad news more than once. the chances of us ever having a second baby with Turner's syndrome is very near impossible. but i also know that there are chances. there are chances for other abnormailities. i will love my children regardless. i know that each child is made in God's image...that He does not make mistakes. but, i just dont know what will happen tomorrow, and that is what i fear.

just wanted to share a few pics, so you know what i am talking about with an elevated nuchal fold test.

above is a picture that i found on the web that shows a very clear example of both a normal and abnormal nuchal. you can see in the grainy ultrasound picture (abnormal) that there seems to be a bubble behind the neck. it doesnt say how thick this nuchal was, but obviously well above 3mm.

this is Charlotte. in her very first picture! i know that it is hard to see...she is face up, head on the right side, legs on the leg side of the picture. if you look closely, you will see her bubble. in this shot it was measuring at 15mm. i was 13 weeks and 1 day.

this is Charlotte at 15 weeks and 5 days. her second picture. she flipped here. so her head is on the left face up and legs to the right. you can see her nuchal looks more like a part of her...it was. it was growing very rapidly. just two weeks later it was up to 24mm. the fluid was now overtaking her whole body, which is why her torso looks very full...it was and all that fluid was already beginning to shut down other organs in her little body. i am not trying to be gruesome, so gain pity. i am merely showing you how things went for us and for Charlotte. to help those that need it, understand more about this test and what can happen.

i will never forget those days. seeing our baby. knowing she was ours but that there was nothing we could do to help her. the pain is just as real today as it was then. but we also have hope. hope for our two babies growing again inside of me.

please pray with us as we go tomorrow. the appointment is at 1pm. i know that God already has all of this worked out...that we are all in His hands. i am praying for peace for myself and peter, for a worry free night tonight, for healthy LOtwins, and for grace as we interact with people tomorrow that do not know us, Charlotte, or these new babies.

thank you for letting me share more of my Charlotte with you!

blessings, ALo

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

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

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