24 week ultrasound

Sophia's Little Foot (oh! that's the little thing that kicks at me all day long)

Sophia's pic in 3d

+ Well- we had our 24 week ultrasound yesterday. nothing really new has happened. Her arms, legs and ribs have only grown a little- they are measuring at 17 weeks. Which means she is now at a 7 week delay (last time was 5 weeks). Dr Adelberg says that it's not abnormal for kids in this condition to continue to grow slower and slower and see a bigger delay as time goes along unfortunately.

+ She still has clubbed feet (but does only have 10 toes and 10 fingers- we made them count). she still has a small chin and the thickening that was on her neck, also now shows down thru her chest. you don't normally see babies this young having any fat on them yet. so that is why the fat/skin thickness on her neck and chest are abnormal. her head and abdomen- look great still- they are measuring 24 weeks and everything looks like it is developed normally.

she also explained something interesting to us- that her chest size does matter, but more importantly, it matters that her lungs mature. a kid with a small chest size can survive if their lungs develop enough to function and sustain life. so while size does matter to an extent, more importantly in those last few weeks of the pregnancy it is more important that they develop and mature the best to their ability.

+ there is no way to tell until she is born if her lungs have developed enough to survive, so it will be a waiting game till she arrives. until then we will continue to monthly ultrasounds and measure what growth we can. we also will not be able to tell what kind of dwarfism she has until she arrives, as we are not going to go through any more genetic tests- there are just too many possibilities. our dr is going to send Sophia's case to be discussed at UCLA with some people who like to study and specialize in fetal syndromes and diagnosing what they can. we probably won't hear back any ideas they have for 6-8 weeks. they may not come up with anything significant, but it will be interesting to see what they think.

+ other than that- I did read and absolutely relished every minute of - I Will Carry You by Angie Smith. It is a woman/family that went through almost exactly what we are going through (except their situation was for an absolute fatal diagnosis of a different syndrome). it was so good just to cry and cry and to read someone thinking/feeling every thing we are feeling. it also helped me look at alot of stuff i hadn't thought about yet, but also made me think of stuff that made me sad. i have still been in the phase of being sad i may not get to have my little baby... i hadn't thought of all the big girl/growing up stuff we may potentially miss. all in all one of the best buys i have ever made and i will read and re-read through my pregnancy. Thank you GAYLE!!!

-prayer requests for the next month-

+ pray for aaron and i's relationship

+ pray for Sophia to grow and be healed

+ pray for peace and understanding for us

+ pray for our families, as they are sad too and have been a great support

+thank you for caring and being willing to pray so generously for us. -tristen and aj

well we got a little more news on Friday. both good and bad. my mom said when i told her-- "well that is good news right?" and i said "well it is, but its hard to enjoy good news when you are still surrounded by bad. it's like a ray of light or a rainbow in the middle of a horrible storm. it is still beautiful and great to see, but you are still surrounded by the turmoil of the storm trying to destroy you".

so we got an Echo (a specialized ultrasound that helps show the blood flow of the heart) on Sophia on friday (at the hospital i work at- The Children's Hospital), done by the head of the lab (the perks of being an employee). where he gave us some good news- that her heart is structurally good (has all the right right parts) and seems to be doing it's job in terms of getting the blood flow around. it is turned a little, the bottom edge pointing towards the back of her chest instead of the front. this he thinks, is due to her chest being too small. aaron asked a great question- that if her chest grows small does her heart grow small too (in proportion)? but the dr said that since the heart is a muscle and under constanst pressure from the blood, it will continue to grow to a regular size. which is one of the things that puts her life at risk- since baby's lungs are only tissue and they don't develop fully until the end of pregnancy... that gives her heart room to grow but doesn't leave room in her tiny chest for her lungs to grow.

i was disheartened at this visit... i think i was secretely hoping that our first ultrasound was just a fluke and/or that God had all ready performed a miracle and grew her chest. but no such thing has happened yet. i think my problem is going to be continuing to pray, but not getting my hopes up too much. i don't want to be disappointed with each visit, expecting something miraculous to happen. when full knowing that God does choose not to heal people, not because he can't or because we don't pray hard enough. though i can't wait to ask some day why he chooses not to.

this thursday we have my 24 week ultrasound. i can't believe i am 6 months all ready. so we will get the official reading of how much she has grown. my tummy is getting bigger.... so i have to think she has at least a little. she continues to flip and move each day, which gives me comfort that she is happy and isn't at all distressed at this point. i ordered a book this week that our friend Gayle recommended- of a woman that knew her baby wouldn't live long after birth, but carried her full term, that tried to use their pregnancy as a time to intergrate her into their family the best of their abilities. i cannot wait to get this in the mail and read it- to read about someone (particularly someone who shares my faith) who has felt the same pain and yet enjoyed their pregnancy. i decided this week i will probably get some maternity pictures taken as a way to really embrace the pregnancy and capture it forever in a beautiful way. i hope this book also gives me ideas on how else i can enjoy Sophia while still in me.

thanks for every bit of encouragement you supply. love- t

negative test :o)

well today we got some good news.... not great but definitely very good. the FGFR3 test was negative- which rules out 2 very fatal forms of dwarfism/dysplasia. what is good is that this isn't a possibility for the diagnosis, what is bad is that we still don't know what she necessarily has. part of me feels like i can breath a little better, just knowing the results. i think it also gives me a new since of hope. if the test had been positive it would have been a lot harder for me to continue to hope for a miracle when a DNA test points to a specific diagnosis. at this point, we are just watching for her ribs to grow, for we are not out of the risk of this being fatal if they do not grow big enough for her lungs to grow.

with this open door, diagnosis wise, i feel i can give myself the okay to hope for something better and to really believe that there is the opportunity for God to do something bigger than i ever expect. it has been really hard to pray as God asks that "whatever you ask for in prayer, believe that you have received it, and it will be yours", as i don't want to set myself up for disappointment and also it is hard as a nurse to get past all the medical stuff. i really think that is why God does surround us with community to pray when we can't pray, or when we don't know what to pray for. like AJ i want to thank you from the bottom of my heart for your kind words, thoughts and prayers.

next up- is for me to get an echo on the baby's heart, should happen in the next week or 2. and then on Oct 22 we get another ultrasound and will find out how she has grown over the past month. my tummy is getting bigger and firmer so i hope this means she is at least continuing to grow. she continues to kick and flip and generally have a party in there, so I feel assured she is generally doing well.

our dr did present her at a case conference last friday, where all the doctors said they really thought it would be one of the diagnosis this test was testing for (so they all thought it would be positive), but luckily for us it wasn't. Sophia is all ready proving them wrong, and i praise God that he is all ready answering prayers. the negative of them all thinking it was going to be one of these diagnosis, is that they don't have any other real ideas for us at this point. but that i can handle.

luckily God has given me a real since of peace at this point and i feel confident he has this in his hands and is in control of her growth. i don't know how i could do this any other way.

our current prayers-

+ that God heals her and makes her ribs grow

+ that AJ can find peace and some understanding

+ that our insurance will pay as many of these bills in full, as much as possible

+ provide knowledge to our doctors performing the tests over the next month

i also just want to brag a little about how amazing my husband is. as some of you know, he got picked up as a volunteer at a local fire department at the beginning of sept (that will hopefully lead to our dream of him working as a fireman somewhere full time). on sept 25, the day after we got our ultrasounds and bad news, he had to take a really hard test (that has a 75% fail rate) that was essential to him becoming a firefighter. he got a 94% percent and passed his test with an amazingly high score. i could not be more proud of him for being able to focus and do something like that after getting such devastating news the day before. God was surely with him and taking care of him. yay!

hope this isn't too much to take in, thank you for taking time to care and read about us and our precious baby.

sincerely, tristen

Thank You

This is A.J. typing this time. I started this blog with the intention of keeping regular updates for friends and family but as with most of my good intentions; they get sidetracked by my short attention span. As such my posting has been non-existent, but my lovely wife does what she's so good at and that's running with my lack of forethought and making the best of it by posting some updates. As you all know we have received some bad news about our baby Sophia. I just want to take this time to give a tremendous THANK YOU to all the friends and family members, and even those we've never met, that have given us tremendous support in our time of need. I've always used the term "community" without ever realizing it's true meaning. I can now say that even though I've moved countless times and lived in three different states that Tristen and I have a community that spans borders, genders, races, and beliefs. We are truly blessed to have such amazing support groups that have provided food when we were too depressed to cook or get groceries, ears to talk to when we didn't even know we had words to say, and encouragement in all forms including just being there. I'm sure I speak for Tristen also when I say that we are both scared for what lies ahead, but encouraged to know that no matter the outcome we will continue to have all of you there for us. Thank you.