Diana's Story
Saturday, Oct. 23, 2004
This week started with me sick at home and ended in a labor and delivery room. It's been the most difficult week of my life.
All last weekend I was sick. The days weren't too bad but the nights were punctuated by fevers and nearly seizure-level convulsions that were then followed by body aches and hot flashes. On Sunday night the uncontrollable shaking had lasted for 45 minutes straight before we took my temperature. The thermometer read 104.7 so Matt got another one to check it. That one read around 105. At that point I became nauseaous, which in turn caused my jaw to lock. When I tried to stumble back to bed with my now-locked jaw I was so dizzy and weak I had to hold onto the walls. Matt gathered up Clayton from bed and took me to the ER. He dropped me off at the door and went to park the car with Clayton. When I checked myself into the ER, I couldn't remember my social security number and then had to concentrate just to make sure I was spelling my name right. The nurse on duty was very sweet and took me to the back right away. She took my vitals and basic information and then sent me back to an ER room for a variety of tests.
A few hours later they had diagnosed me with a kidney infection, admitted me to the hospital, given me a round of IV antibiotics and moved me upstairs to a 6th floor room for treatment. For the next three days they gave me more antibiotics, painkillers and a continuous IV drip to keep me hydrated. They also monitored my vitals regularly and checked the baby's heartbeat at three regular times during the day. I was feeling pretty crummy for most of the time, but all of my nurses and aides were amazing. They were kind, cheerful, attentive and gentle and I became quite close with several of them. They, their painkillers (yay drugs!) and the flowers, calls and visits from so many people really helped the days to go by pretty pleasantly.
On Wednesday, my doctor said that I'd be able to go home the next day. That night, Matt had been working downstairs in the ultrasound lab. He finished his shift and came upstairs just as a nurse was doing one of the regular checks on the baby's heartbeat. She didn't find it after a few minutes so she called a colleague to look for it, and she didn't find it either. Matt went back downstairs and retrieved the ultrasound machine and brought it up to my room to confirm that we'd lost our daughter.
Matt and I both had expected that this moment would be more difficult than it was. In retrospect, though, I think that we had both just been waiting for it. We knew that losing her was almost insured but we could only wait and watch. We had been in a sort of emotional limbo. Now we were finally able to move into the next stage.
We sat and held each other on my hospital bed and talked about what needed to be done, scheduled, arranged. The next day, we talked to Dr. Hagen and his associate Dr. Monks. We scheduled the induction to be started at 4 am Friday morning.
I woke up at 3:45 am and, laying there in the dark, I was scared. I was afraid of the induction and delivery, whether I can do this again or not, how the day would go. I woke Matt up and we talked, and a few minutes later the lights came on, the nurse came in and I was moved down to a 2nd floor labor and delivery room.
The cheeriness of the soft teal walls and lavender doors and accents was almost painful but we got settled in and soon got the process started.
By the afternoon I was clearly having real contractions and moving along well. The nurse checked me and found me at 7cm dilation (delivery comes at 10cm). They ordered an epidural for me but by the time that it was put in, I was so far into labor that the pain blocking wasn't catching up with the pain. It finally succeded in taking the some edge off about half-way through my very short delivery but it wasn't strong enough to block the peaks of the pain, which were coming very close together by this point.
I felt her starting to come at about the same time that I heard Dr. Hagen arrive. I'd been unable to open my eyes from the pain for what seemed like several hours already at this point so I just managed a weak wave and kept doing what I was doing. As he put his gown and gloves on, she came. At 6:57 pm, the pain immediately ceased, I was able to open my eyes again and the only thing I could do was look for her.
I'm not posting a picture of her because to most people I know that she must look, in a word, grotesque. The fluid had collected under her skin so much that the baby underneath it was hard to see, and it surrounded her and made her the color and feel of dark red gelatin. But I could see her face, found her warm, tiny, perfect little hands and feet at the end of her swollen limbs. Matt and I were able to see the beautiful baby girl under the fluid. Like Wednesday night, I expected this moment to be sad and painful for me but the moment that I saw her, the only thing that I felt was peace. I had just needed to see her face, touch her, know she was really real. She gave that to me at that moment.
Matt and I held her and talked to her. We passed her to my mom, who cradled her and did the same. We all noticed the distinctive set to her tiny rosebud lips, the same one that I used to get when I was being obstinate. Matt and I held her a little longer and talked to her more, told her what we needed her to know.
Mom left after that and a little later our nurse brought in the hospital chaplain that we had requested. We spoke with her for a minute and we told her the baby's name: Diana Sarah. I had only planned for the chaplain to give a blessing, but at the end of it it felt like we had said good bye to Diana, so I covered her little face with the top of her blanket and gave her to Matt. He took her and gently laid her in the hospital bassinette and a few minutes later the nurse came and took her away.
Matt and I left the hospital an hour or two after that. We went to Kerbey Lane and had a meal of some comfort food - pancakes, french toast, hot chocolate, and then went home and to bed.
Today we'll make arrangements for Diana to be cremated and sometime soon we'll decide on someplace beautiful for her ashes to be spread.
Our little Diana Sarah was born October 22, 2004 at 6:57 pm. She weighed 1 pound, 10 oz., and was 9 inches long at birth.
Friday, Oct. 15, 2004
I had a doctor's appointment on Monday. Aside from the obvious, everything seemed fine. We listened to her heart beat and it was right where it should be. I was a bit nervous because Dr. Hagen didn't find her heartbeat right away, but after a few seconds of searching around he found it and she came through loud and clear. At one point in the visit he mentioned that he would probably want to induce me about two weeks early to make delivery easier. I was so surprised to hear him bring the subject up that I just asked him, " You mean if she makes it to term?" and when he answered in the affirmative I didn't pursue it further. It startled me to hear him thinking that far out since she's not due until Feb. 11 and he's told me how unlikely she is to make it. Mostly, I'm just going one day at a time and not thinking that far ahead since everything is both uncertain and out of our control.
Friday, Oct. 8, 2004
Our girl's thumps continue. Occasionally I'm having some pain in my abdomen now from my muscles and ligaments stretching themselves to accomodate her, usually when I stretch or reach in the wrong way. In fact, they're having to stretch out enough now that I finally broke down and started wearing maternity clothes last weekend. I'm actually looking pregnant now instead of just chunky. So much so even that Matt has informed me that I've reached "critical mass" - he teases that my belly protrudes farther to the front than my butt does to the back. It's why I love him. He's such a romantic, wooing me with such sweet, sweet words.
Monday, Oct. 4, 2004
No major updates this week. She's still poking around in there, although not as hard or often as several weeks ago. I haven't made any more recent trips to be scanned by Matt, but her prods and thumps reassure us she's still alive and growing in there.
Monday, Sept. 27, 2004
We're 20 weeks into the pregnancy now. Half-way. We stopped into the hospital for Matt to scan me on Saturday. Both the fluid collecting under her skin around her neck (hygroma) and around her torso (hydrops) are quite large now. It essentially looks like she's wearing a puffy life vest and enormous neck pillow. Because of their size, there's no longer any room for her to move around much in utero anymore. She's head-down and facing toward my back, which explains why so many of the pokes I've felt have been up at the top of my stomach - she must be kicking and bumping me with her bottom and legs - although the thumps haven't been nearly as hard this past week as they were the week before. Her heart-rate was still normal and we could see it thumping away in her chest.
Friday, Sept 18, 2004
Well, there's no doubt this little girl is a tough one. On Monday night she was pushing so hard against my stomach that it first entered my dream and then woke me up! I woke Matt up and when he pressed his hand to my belly he was able to feel her tiny little butt(?) pressing right back at him. Since then, she's poked, pressed and prodded me several times this week. I don't remember feeling Clayton quite this early and I certainly don't remember him being so rough-and-tumble in there!
Monday, Sept. 13, 2004
We went in for my 18-week appointment with Dr. Hagen on Friday, which included the standard 4th-month ultrasound. Since Matt has been scanning me every week lately, though, we knew that the images wouldn't be the standard 18-week pictures. The baby was there, still with her hygroma and with the hydrops. The fluid of the hydrops now includes amniotic fluid in it too. He looked her over for several minutes and took several measurements. When he finished he didn't offer the printed out baby pictures to us and we didn't ask for them.
After the scan, Dr. Hagen confirmed for us what we already unofficially knew: There is essentially no chance of survival for our daughter. In all of the case studies that Matt has read he hasn't been able to find a single one where a baby with a hygroma and hydrops has survived to term. Dr. Hagen's opinion echoed that research - 100% likelihood of fatality at this point.
He briefly outlined, in his gentle and vaguely southern-tinged voice, the two options that this leaves us with. The first option is to schedule what would essentially be a second-trimester abortion at a hospital or surgical center. The second option is to wait until she can't sustain herself anymore and expires on her own. If she dies in the next few weeks then a dilation and extraction (D&E) would also most likely need to be performed to complete the miscarriage. If she makes it to the third trimester - which is only 5 weeks away now - before dying, then they would instead induce my labor and I woud deliver her stillborn.
Most of this I already knew, but knowing it and hearing it officially from the doctor is very different. I managed to hold myself together for the most part while we were in the office. We made it into the car in the parking lot before I broke down.
Nothing about this pregnancy has ever gone how I've expected and making this decision is certainly not something that I wanted to do. Nevertheless, the need for a decision was there. A few hours later, Matt left for work and I called and made an appointment for Monday afternoon for the first step that would be necessary to prepare for the abortion. My understanding at that point was that the earlier the pregnancy ends, then the less risk is involved for me regarding potential infection, scarring, hemorrhaging, etc.
Matt would be on call and at the hospital all weekend so I opted to take Clayton to my parents' house for the weekend. We came home again on Sunday. Today, Matt and I dropped Clayton off at Mother's Day Out and then went directly to Dr. Hagen's office. Our appointment for the procedure wasn't until later in the day but we both had more questions that we needed answered before we got that far. Dr. Hagen's receptionist immediately made time for us to see him and we went in to talk.
After talking in more detail - detail that I wasn't emotionally able to go into on Friday - about the physical, mental, financial ramifications of our two choices and the level of physical risk involved in both, we decided to cancel the procedure and go with option two. We cancelled the appointment scheduled for later in the day and went home and collapsed into bed for a nap. I, drained from the weekend of indecision, and Matt, exhausted both from his weekend of on-call time and supporting me as best he could, needed it pretty badly.
And so were resuming watching and waiting. Matt will keep scanning me weekly. I scheduled another monthly check-up with Dr. Hagen, just like all of his other pregnant patients do.
Meanwhile, I've started to actually feel pregnant. It's starting to be difficult to stand up from certain chairs, uncomfortable to bend for very long. I'm starting to feel her move a bit. Like most pregnant women, I'm starting to notice infants and other pregnant women everywhere I go. I know that, like them, I'll see my daughter's face sometime in the next few weeks or months. I also know, though, that my experience doing it will be different from theirs. Bittersweet instead of just sweet. But so it goes.
Thursday, Sept. 2, 2004
I went in for my weekly unofficial scanning with Matt today. Like last week, our daughter's hygroma had maintained its size but the hydrops - the fluid around her abdomen - had grown larger. Matt noted that the hydrops's fluid didn't look completely clear and there were also some solid spots inside the hygroma, and neither of these are something that we want to see. On the plus side though, her heartbeat is still as strong and regular as ever. So, even though the indications that we're seeing with her right now aren't good, she's still showing her heritage by being too hard-headed to just give up at this point. Stubborn, just like her mother.
Friday, August 27, 2004:
The fact that Matt is an ultrasound tech is such a blessing sometimes.
Two nights ago I had a dream that he scanned me and we found no heartbeat. When I woke up, I felt distinctly unwell, which is odd for me - other than some minor heartburn, I've never had any real discomfort during pregnancy - so of course I was quite worried. Fortunately, I didn't have to wait two weeks for my next doctor's appointment to check on her. I just went in to see Matt at work that afternoon for a few minutes. As soon as he placed the probe on my belly I saw a tiny hand wave by on the screen, and then an equally tiny foot. A few seconds later, her whole body came into focus, wiggling happily and heart beating strongly. Her hygroma (the fluid around her neck) doesn't seem to have gotten larger but her hydrops (the fluid around her abdomen) may have, although it was hard to tell exactly. Increasing fluid is a bad thing, so we try to watch those carefully usually, but yesterday I was relieved just to see her moving.
Last night, as I was laying in bed, I felt four little thumps on my abdomen for the first time. They may have just been a few very localized muscle contractions, but I like to think that it was her, reassuring me that she's still here and kicking.
Thursday, August 19, 2004:
Clayton had "school" today so while he was there Matt and I went into Austin to do some errands, have some lunch and get me scanned. Today's ultrasound scan showed the baby to be pretty active at first but after a few minutes she started sucking her thumb and seemed to settle down for a little nap. Matt took a look around and saw that her kidneys, liver, stomach and heart all looked good and normal from what he could see. Her hygroma - the fluid that's collecting around her neck - didn't seem to have grown any (which is good), but she does now also have a collection of fluid around her abdomen, called hydrops (which is bad). The additional fluid doesn't bode well for her making it to term but we'll just keep watching and waiting and hoping.
Tuesday, August 17, 2004:
I had my regularly scheduled appointment with Dr. Hagen, my Ob/Gyn, on Friday. We listened to the baby's heartbeat and all sounded well there. In the future, I'll be going back to Dr. Hagen for my regularly scheduled monthly appointments where he'll do an ultrasound at each visit. That will let us track the baby's progress and watch for any signs of impending miscarriage. Of course, since I have the benefit of an in-house sonography professional too (aka my husband), I'll also be regularly stopping by the hospital for him to do some unofficial scans on me.
FYI, I know that some of you may be curious about the symptoms and effects that our daughter may have if she makes it to term: Would she look normal? Would she be healthy? Would she be mentally impaired? I happen to have found a really good little guide today that I'd love for you to look over. It's on the Turner Syndrome Society's website, and it's very easy to read and written specifically to explain the syndrome to family and friends. It includes lots of photos of women and girls with TS. It also explains the possible symptoms of TS and how they can be managed. You can read it at http://www.turnersyndrome.org/downloads/TSfamily_guide092502B.pdf.
Thursday, August 12, 2004:
Catherine, our genetic counselor, called us again this morning with the results of the baby's full genetic test. The information we received on Monday was from a fish test, which only looked at chromosomes 13, 18, 21 and the sex chromosomes for either extra or missing information. The fish test found Turner's syndrome because instead of there being two sex chromosomes, our daughter only has the one. The full genetic test gives a picture of all 46 (or in our baby's case, all 45) of the chromosomes. The good news is that no anomalies were found on any of her other genes, which is good news because it means that we don't have any secondary genetic problems to worry about.
Although we understand that this little girl's chances of making it to term are against the odds, I do feel oddly optimistic. I can't explain it, and it may just be my sense of hopefulness for her to make it coming through, but both Matt and I are calm and at peace with the journey that we're on at the moment. We're prepared, as much as one can be, for the worst but will keep staying positive and hoping for the best. All we can do now is watch and wait and hope that my feelings prove true.
Monday, August 9, 2004:
Catherine, our genetic counselor from Dr. Berry's office, called this morning at around 10am to give us the results of the fish test. Our baby is a girl with only one X chromosome instead of the normal XX, which means that she has Turner syndrome. The results of the complete genetic testing will be in most likely by the end of this week, but now we at least know what we're looking at with her.
The bad news...
With Turner syndrome there's a 95-98% chance that she'll end up miscarrying. We'll be monitoring her closely with the help of my Ob/Gyn - Dr. Hagen - and Dr. Berry, though, and will do what we can to help her make it. I have an appointment with Dr. Hagen this Friday and will soon also schedule follow-up appointments with Dr. Berry so that we can track the baby's progress. Of additional concern is that because the hygroma - the fluid that's collecting around her neck that we see in ultrasound - is so much larger than is normal, she may have a heart defect. We'll be able to take a look at her heart via ultrasound at around the 18th week of pregnancy (I'm currently in the 13th), though.
The good news...
The good news is that, in the event that the baby makes it to term, she has a good prognosis. Turner syndrome is among the most common chromosomal abnormalities, occurring in about 1 out of 2,500 live female births. Approximately 60,000 girls and women are affected in the United States, with approximately 800 new cases diagnosed each year.
The girls' most common characteristics include short stature (usually between 4'6 and 4'10") and lack of ovarian development. A number of other physical features that are sometimes seen are a webbed neck, arms that turn out slightly at the elbow, and a low hairline in the back of the head. Girls with Turner syndrome are also prone to cardiovascular problems, kidney and thyroid problems, skeletal disorders such as scoliosis (curvature of the spine) or dislocated hips, and hearing and ear disturbances. The good news is that most of these problems can be controlled through various treatments.
Growth hormone, either alone or with a low dose of androgen, will improve growth velocity and probably final adult height. It's approved by the FDA for the treatment of Turner syndrome. Estrogen replacement therapy has been used with success since 1938 to promote development of secondary sexual characteristics and for maintaining good tissue and bone integrity. Modern reproductive technologies can be used to help adult women with Turner syndrome become pregnant if they desire.
Additional good news is that there's no connection between Turner syndrome and mental retardation. There may be some differences in learning style that make verbal learning come more easily while math or spatial problems are more difficult, however, women with Turner syndrome can lead successful lives in many different types of careers.
There's more information about Turner syndrome available at the website of the Turner Syndrome Society (conveniently located in nearby Houston). We'll keep updating here for those of you who would like to follow the progress of our daughter.
Thank you, thank you, thank you...
Thank you again, also, for all of the support we're receiving from all of you. We can't express how much it's appreciated.
Sunday, August 8, 2004:
We've received so many kind emails full of good thoughts and encouragement and we appreciate each one. Knowing that our friends and family are thinking of us has helped keep our spirits up. Along the same vein, we took Clayton to the San Antonio Zoo yesterday and just spent the day enjoying time together as a family. The waiting for information is stressful, but there are still so many things - and people - in our lives that we are thankful for.
Friday, August 6, 2006:
I hadn't heard from Dr. Berry's office by 4pm today so I called over there and got his answering service. Apparently his office closes at noon on Fridays so it would seem that we won't be getting our basic results - they come from a "fish test," as in fishing for results - back until Monday. Three more days of waiting.
Wednesday, August 4, 2004:
We met with Dr. Berry this morning. Matt's favorite and most capable teacher from ultrasound school, Ben Buentipo, happens to be Dr. Berry's ultrasound tech so it was nice to have a friendly face there. We were given genetic counseling and then went in for an ultrasound scan to see preliminarily what we're really looking at.
After taking some measurements it became clear that the baby has sigificant swelling around the neck which is not a good sign. Dr. Berry explained that 60-70% of the time this indicates one of two genetic problems: either Down's syndrome or Turner's syndrome. Turner's syndrome is when the baby is a girl but has only one X chromosome instead of the normal XX. Approximately 95% of the time, the pregnancy of a Turner's baby will end in miscarriage. Of those who make full-term, most will do OK but have some differences from other girls. If the problem turns out to not be a genetic issue then the next most likely problem causing the swelling is some sort of heart defect(s) which we'll have to wait a few more weeks to be able to view since the baby is too small right now. To find out if the baby has a genetic problem and if so, what type, Dr. Berry performed a CVS (corionus villi sampling) on me, which is similar to an amnio but can be done earlier in pregnancy. We'll receive some basic results back in about two days and the full genetic results in 7-10 days.
Monday, August 2, 2004:
Called my Ob/Gyn. He made an appointment for me with Dr. David Berry at Austin Perinatal. Dr. Berry specializes in high-risk pregnancies. We'll be meeting with him and his staff on Wednesday for genetic counseling, another ultrasound scan and possibly an amniocentesis.
Saturday, July 31, 2004:
Matt and I decided to stop by the hospital for him to scan me. While there, he found what looked like an increased nuchal translucency. What he was measuring was coming in at 8mm and it should have been reading at around 3mm. Since he doesn't usually do this type of diagnosis, he printed the pictures out. Fortunately, we were headed to the birthday party of a co-worker so we took the pictures with us and he passed them around to the 15-20 other sonographers there. They all agreed that it appeared to be an increased nuchal translucency.
With an increased nuchal translucency, 85% of the time it will resolve itself and means no real problems with the baby. Fifteen percent of the time it indicates a possible genetic trisomy. Genetically, humans have 23 sets of chromosomes, which are matched up in pairs, resulting in 46 total chromosomes. In someone with a trisomy, one of those sets has 3 chromosomes instead of the normal two, resulting in a total of 47 chromosomes. There are three major kinds of trisomy: trisomy 13 and 18 are lethal and result in the baby's death almost immediately following birth. Trisomy 21 is commonly known as Down's Syndrome. We'll need genetic testing to find out if any of these trisomies is the case with our baby, but since it's Saturday we'll have to wait until Monday to do that.
Friday, July 30, 2004:
I'm due February 11, 2005 - Yay!
Baby's first picture appears below. For those of you who may be sonographically challenged, the baby is right in the middle of the shot with its back facing toward the upper right of the picture and its head toward the upper left, looking straight down. Just under its face you can see a tiny arm and just under its bottom you can see a little leg.
Since Matt does ultrasound scanning by trade I'm sure that I'll have plenty of more scans done before this child is born but, no, we can't tell the gender yet. We wont be able to see that until around the 18th week of pregnancy, so keep tuned in if you want to find out that information pre-February!
