This is the first of many "parts" of the story. It starts with an email I sent this morning to my family back home. For simplicity's sake, I will copy and paste it here, then begin the second "part" on a whole new blog as the letter itself is quite lengthy...
Hey everyone,
well, as most of you know Julia had been battling a viral thing that went away but "came back". last night was a particularly rough night with difficulty breathing and a horendous congested cough that kept her from sleeping. Because of her history with Pneumonia we took her in first thing this morning.
Upon the doctor's appt we discovered two things: 1) yep, lungs were in not so good shape as we thought. she received two breathing treatments and a whole host of presciptions for home, including another antibiotic, liquid steriods, and an inhaler breathing treatment. including her meds for her ear infection from her ER visit 7 days ago, this puts her in 4 different meds received mutiple times a day. 2) doctor is concerned over her (lack of) height and weight, and that her neck is smaller than "normal". we had never noticed this before, but pointed out, yep her neck isn't even like megan's. Julia is 35 inches tall for 4 years old and weighs 24 pounds.
Julia is going back to her ped this friday to check on the progress of her lungs. other than that we are waiting until she is well before we schedule a "routine 4 yr old check" to evaluate her growth issues. Doc has mentioned "Turner Syndrome" as a possible chromosomal abnormality that may be a possibility. of course, knowing me first thing i do when i come home is check to see what in the world Turner's Syndrome is, and what it could mean...
"Turner syndrome is a genetic condition that occurs only in females. Female cells normally have two X chromosomes. In Turner syndrome, the girl's cells are missing an X chromosome, or part of an X chromosome. There are a variety of signs and symptoms that can result, but the most common are short height, lack of developing ovaries, and infertility."
of course this made me want to cry.
by reading on i find that the above symptoms are the less serious. females with Turner Syndrome can also possibly suffer from Kidney disorders and/or Cardiac disorders. this meaning, IF julia is indeed diagnosed with this, a MRI or Echocardiogram would be ordered to see if her heart is working properly or if it has also sustained some sort of damage from this disorder.
now..this has only been mentioned as a "possibility" and doc just wants to check her out formally. while i appreciate this, it also makes me nervous. knowing that she was born small because of IUGR and was/is completely healthy from that is one thing...a sweet form of denial of somesort....having also had my next OB appt today and learning that this baby is all the sudden measuring small too (measuring 3-4 weeks behind when baby was right on track at last appt. i gained 4 pounds, but baby seemingly has not grown at all according to fundal height. doc has ordered an ultrasound scheduled for this next tuesday, oct 3rd)...i want to just go stick my head in the sand. 
at least at the ultrasound we should hopefully have a second check on gender. turner's syndrome specifically only affects females (although there are ALOT of other growth affecting disorders that affect both sexes) so hearing a boy again will make me feel good, although still abit worried. from what i have gathered if Julia really does have this, then God has already blessed us and been watching out with megan, as there is a 1 in 2 chance that the second baby born, after a female born with Turners, will also have it too. Megan, atlhough small as well (roughly 26 pounds and same height as julia but is 3 years old) doesn't seem to show other "markers" for turners like julia is. a karyotype, blood test is the only way to really know for certain.
Joe keeps telling me to focus on positives and that it is too soon to worry. i know he is right. afterall, it is NOT a formal diagnoses, just something "mentioned" that is worth having checked out. we truly won't know anythig until we set up another appointment for her which will be in at least a few weeks....and looking at me, if i remember correctly i weighed 40 pounds at 9 years of age. joe said he was also on the smaller side as a child. these kids just come from "short stock". i really want to believe this...i really do! according to growth charts i have looked at, a child at 35 inches tall at 4 years of age is "projected" to be around 51 inches tall by 18 years of age....i am 61 inches tall. she would be near a foot smaller than me. now, height is NOT something i am concerned about. obviously the inferility breaks my heart in unspeakable ways..but as of now i am worried about the heart and kidney factors. i know that this could happen to anyone and it is somethign that would have taken place at conception, but it "comes" from the maternal side, i know it's not like i meant to do it, but some part of me feels horrible...i look at her and just melt. she plays so normal. she keeps finding me staring at her and the only thing i can manage out is a weak smile and a "i love you." i feel baby move within me and to think she may never have that, to think of how she loves to baby her dolls right now, to 'play mommy", how she falls in love with any babies we see around us...
so we need your prayers. first that the infection in her lungs clears up beautifully. second, that there are thorough checks done with her in the next few weeks and nothing is missed. i keep thinking back to this baby and hoping and praying ultrasound turns out okay. i keep reminding myself that megan is "normal" and even she measured a bit "behind" at this gestation. i keep reminding myself of my own history with "growing slowly". i keep reminding myself that everything could be fine, just fine...but it's scarey...for the first time in my life i am thinking of cord banking this baby's blood "just in case" in the event we find a true diagnosis for julia or this baby or any others later down the road, then maybe somehow the stem cells could help. in the mean time i am trying with all i have to think "positively" that maybe, just maybe, it is nothing at all....
pic of megan (on left) and julia (on right) to show the difference in thier necks. you can tell that megan's neck is "taller"...a "webbed neck" is a symptom of Turners Syndrome.
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September 28, 2006 - Oh Sweetie!