The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part
Tom Petty
Week 21 - the watching begins with the discovery of a low lying placenta and a second placental lobe. the lobes appear to be connected by an artery possibly lying across the cervix. any rupture and all the blood drains away from the baby. pelvic rest and wait. "make an appointment with a new doctor in a month."
Week 25 - the waiting ends a month later as we learn that the placentas have risen up in the uterus with one in the front and one in the back. the blood vessel attaching the lobes is tight to the uterine wall and risk of baby snagging it is negligible. everything looks good. "we'll have you come back in a month to be sure."
Week 29 - we meet with a new doctor for the follow up. "it has been explained to you why we are watching you, i hope." well, we know there are two lobes and you're keeping an eye on them and we need to make sure both come out at delivery. we get the rest of the story. depending on whether the umbilical cord is attached to the healthy lobe or not(in order to have two the first had to not be attached to a fertile area and so growth moved to a healthy area) the growth of the baby may be compromised as the growth accelerates in the later months. he checks the baby and looks for the umbilical cord attachment. the baby looks great, lips puckered out(a raspberry for all this fuss). he cannot find where the umbilical cord attaches to the placenta, just a really long cord. "baby looks good, see you in a month."
Week 30 - the watch steps up. anne fails a test and is diagnosed with gestational diabetes. we are working with anne's regular OB's partner and her nurse. so now Anne is basically being seen by four doctor's - a male/female(fracasso/selgado) OB and a female/male(poggi/ghidini) perinatal radiologist. the nurse tells anne to make an appointment immediately with INOVA diabetes center and also with an endocrinologist. another doctor? why? anne and baby are fine. anne is only home on fridays at this point, so she gets into the diabetes center. a class and a device to self monitor her blood sugar. "keep a log of your levels(four times a day) and see you in a week."
Week 31 - the numbers have been fine. why the endocrinologist? anne does not make an appointment. a consultation at the diabetes center and confirmation that everything is fine. the "diabetes" is easily controlled by diet and exercise(pretty much anne's normal diet and exercise). the nurse has no explanation for why the need to see an endocrinologist. "just keep monitoring your blood sugar."
Week 32 - anne only has one week of travel left and then we start our final preparations for the baby. the blood sugar has been fine. anne always has elevated blood pressure at the doctor's office(white coat syndrome) so she checks it at home with her own blood pressure cuff to be sure it isn't elevated. it has been creeping up this week. probably the stress of her project and traveling. one week and then relax. and then the mucous plug makes its appearance. a call to dr. selgado and she tells us to come into the hospital for monitoring and more tests. our hospital tour is scheduled for today. we get a more up close tour than expected. anne checks into labor and delivery and we are placed in a delivery room. microphones are placed on anne's belly(ah, this is fetal monitoring) and they start tracking the baby's heart rate and anne's contractions. contractions? she could be in pre-term labor. ohh! blood is drawn. and drawn. and drawn. and drawn. and drawn. and drawn. apparently the doctor thought of something else to test for with each draw. and now, wait for the results - 4 hours. the tour time comes and goes, we thought this would be quick. the results come back. no labor, but possible pre-eclampsia, you will not be going to New York this week. after 6 hours in the hospital we are able to leave. "go home and come see me in the morning to follow up."
monday morning in the doctor's office. the test showed no labor, but there is another test - cervical length. doctor checks - "hmm, seems short. better have an ultrasound to be sure." and there is another test for the pre-eclampsia. 24 hour urine collection to measure protein levels. the doctor gives a string of numbers. this level is normal, this level is a concern, this level and we induce immediately. something hundred is okay, but 2 is bad. what? it just crashes like a wave, but anne feels fine, none of this matters. the doctor goes into a whole scenario of pre-term delivery and mentions a shot to help the baby be prepared for early arrival. it all blurs, anne is fine, she will not be delivering a baby anytime soon. off to the ultrasound.
the baby looks great. the cervical length is 2.2cm, the doctor wanted 2.5cm. close enough, the cervix starts to shorten the last couple months, some women even dilate. the radiologist(just regular, not one of the perinatal) sees something to follow up on before we leave. another ultrasound, we mention that the umbilical connection hasn't been confirmed. she sees the umbilical cord is attached to the larger placental lobe and her concern about the baby's kidney was actually just a cyst on anne. part of the pregnancy and nothing to worry about. we go to check out. standing at the front desk we are called by the OB's office. "go see the perinatal radiologist, get the shot, get to the hospital." what? anne is fine, the baby is fine. i take the phone and explain the baby was just checked and is right on track for size and development. the doctor agrees we can just go home and start the urine collection. and we wait as anne fills the jug.
i quickly set up for anne's bedrest sunday night, so now i will get her settled in. the office is converted to anne's personal nest with everything at hand. i start trying to build meals that meet the calorie, carbohydrate(we are not going to risk agitating the diabetes), and especially protein requirements for anne. the jug fills and i find another container for the rest of the pee, no problem with water consumption. off to the lab to drop off the jug and get a blood draw. home to wait for the results.
a call on my cell phone while i am at my dad's. elevated protein, 800mg. "head to the hospital for the steroid shot and monitoring." steroid shot? do we need it? the steroid shot is used to develop the lungs of a baby born before 34 weeks. delivery doesn't seem imminent, we are almost to 33. 800 sounds high, is it bad. i have to go home and tell anne. what does it all mean? anne is on the phone, i start to research on the internet. "what's up?" "we're going to the hospital."
back to labor and delivery. are you ready for your shot? what? we haven't decided to get the steroid shot. the doctor has ordered the shot. we'll wait. more monitoring in a delivery room. everything looks good, but anne's blood pressure is walking the line for pre-eclampsia. anne is admitted to the ante partum hall and another 24 hour urine collection is started. i can stay with anne until 11pm. the next test will be fine, this too will pass. i head home and spend the night learning about pre-eclampsia, no more birthing study.
thursday and anne spends the day filling the jug, i spend the morning with her waiting for dr. poggi. in my research i discover 300mg is the acceptable protein level and 5g(5000mg) is the redline. we are way closer to the 300. anne is still okay, we are not in danger. dr poggi comes by and the ultrasound looks good. she flips out when anne says we haven't had the steroid shot. she calls it irresponsible as a mother. she goes on about how pre-eclampsia can turn in an instant and if you have a headache that is cause for us to deliver you. wait lady, we don't know the ramifications of this shot and don't want to set a chain of events in motion that compromises the amount of time the baby stays in anne and the potential for a natural child birth. anne mentions going back home for bedrest and the doctor implies she would keep her there until she delivers. anne says she can't stay there a month, the doctor says you can and we have kept women here longer. but, anne is fine. i head home for lunch and to get the house ready for the possibility of an early arrival. instead i research the steroid shot. anne has a follow-up with dr. poggi and it is more relaxed and the doctor gives her an NIH statement to read. in my research i learn that it is a cortisone shot and one course is pretty well confirmed to be safe and is standard practice. i call anne before i head back in and we agree to go with the shot. now just wait on the jug.
Week 33 - the jug and blood are off to the lab. and.... 810mg. the doctor is okay with this. the first cortisone shot doesn't send anne's blood sugar off the charts as the doctor predicted. the second shot has little impact on the blood sugar and anne is allowed to go home. anne's nurse, diane, says we'll be back, pre-eclampsia only gets worse. we didn't even know her name at that point and thought no way we'll be back. i am a little familiar with pre-eclampsia through my brother and sister-in-law's experience. anne has none of the symptoms my sister-in-law had to endure, anne is fine. home for more bedrest and continued watch of the pee. we have an appointment with dr. fracasso. he explains the outlook. watch. watch. watch. pre-eclampsia doesn't reverse and we will watch the levels and make sure things aren't critical. he mentions that at 37 weeks the baby is baked and after that anne is just a warming oven, so he will induce at 37 weeks. i shift my sights from 40 weeks to 38 weeks, he can wait another week. and bargaining begins in my head. we ask about the endocrinologist. "oh, based on your tests we thought you would need insulin and felt it would be best to have an appointment ready if you needed it rather than having to wait a week if your sugar levels were high." hmmm, flawed test maybe? home for more bedrest, sugar watch and another pee watch. i start getting a handle on the nutrition and plan a menu for anne. off to the grocery store to prepare for the long haul. the jug goes in the end of the week. hmm, no call from the doctor, no news is good news.
Week 34 - the waiting ends with a call from dr. fracasso. 2400mg. well sure anne's protein is high, that is all she can eat on this diabetes diet. it doesn't work that way. the doctor plans a follow up test to confirm the result and figure out the pattern. we can stay home, but if things really are moving this fast time could be evaporating rapidly. we decide to err on being in the hospital unnecessarily. anne packs up and we are off to the hospital until she delivers.
dr. ghidini(parinatal radiologist) is the first to see anne. the amniotic fluid is down to half what it was, the platelets are down. the protein has tripled. he begins to talk about inducing, now. "you have had the steroid shot, you are at 34 weeks so the baby will survive and your placenta could detach at any moment leaving only 20 minutes to deliver the baby." what? anne is fine, no symptoms, well away from the 5000mg. "it is your decision, we can't tell you what to do." we have heard this several times. go to the hospital, don't go. receive the steroid shot or don't. induce your child now, or don't. we keep being told things are going bad, act immediately, the sky is falling, save your life, save the baby's life, things are going to get worse we just can't say when. in the end it is always our decision, anne's body could blow up any minute. but anne is fine, the baby is fine. we'll wait to see the results of the next 24 hour urine collection. "okay, but i am ordering an IV just in case we have to perform an emergency c-section." great, treat anne like a sick person. even dr. selgado is confused by the IV.
the number drops by nearly half to 1400mg. now it is watch the amniotic fluid level and the platelets. the next tests will be the end of the week. we spend the week watching the fetal heart rate monitoring that they do each morning and evening. always a strong healthy baby, it eases the wait. anne is fine, the baby is fine. the IV is removed.
Week 35 - the amniotic fluid level has dropped and is skirting the danger limit. another flag goes up. the platelets have increased though. keep watching. start another 24 hour urine. on sunday dr. fracasso comes in early and tells anne he will induce this week and plan to deliver the baby at 36 weeks. anne calls to tell me. i am very bothered, she is somewhat resolved to it. it has been a long haul and the amniotic fluid is shaky. we talk when i get in. it was easter weekend and anne was feeling down. i plan to be there early on monday to talk to dr. fracasso and spend the day with anne waiting for results.
monday and i make it in to see the doctor. i ask why we would deliver at 36 weeks when everything was still in the acceptable limits and he had said 37 weeks was term relative to baby's development. he agreed to hold the decision pending the test results. Diane(an old friend by this time) came in just after the doctor left and chatted with us. we mentioned dr. fracasso was ready to induce and she asked, "what was your response?" we told her we did not want to induce and were going to wait for the test results. she smiled and we felt reassured. she said she would let us know the results as soon as they came in. we wouldn't have to wait for the doctor. it was nice to have such support.
lo and behold the numbers came back improved, except for the protein which held steady. improved? but pre-eclampsia doesn't improve. hmmmm. i leave for a bit in the afternoon, feeling confident we have just bought another week. the bargaining has become overt. dr. poggi comes by to check the amniotic fluid level and, you bet, the level has gone up. dr. fracasso is forced to concede to week 37. Diane is thrilled, we later learned that she was being encouraged to encourage us to give in. she never flinched, she knew anne's condition better than anyone. and then anne gets a headache. "did it go away?" "no, take all the flowers home." "did it go away?" "no, i am going to ask for a tylenol." should we say anything, will telling someone raise a flag, headache is a symptom. anne's blood pressure has been fine, even good at times. we can't blow it now, we are winning. "did it go away?" "feeling better, probably just allergies."
Week 36- everything is looking good. no tests hanging over our heads. just watch the numbers and those ever encouraging baby heart rate strips. anne is fine, baby is fine. and then...
after nearly 4 months of inching along a tightrope with people calling out (from below, behind and before us) a wind blows from above and we are whisked to the other side.
...counting week by week. it is almost incomprehensible to be watching a life so young that a week becomes a milestone that can make a lifetime
