Tuesday, December 28, 2010
kind of like high maintenance but more polite to say...I have been living up here over the holidays where they can monitor me a little closer. It is actually a labour and delivery room so if I was so inclined I could have the baby right in that bed. I have a patio across the hall so it is a bit easier to get some fresh air. There is a noticeable increase response time from the midwives...you press the little red nurse call button and they almost run into the room. I dropped my fork the other day and someone sprinted in about 2 secs. I would have gotten myself but I was hooked up to the fetal monitor while eating dinner. Honest.
I haven't felt so flash the last couple of nights, having lots of painless but regular contractions in the night while the baby kicks my guts out, then last night I felt like I was suffocating and ended up on oxygen. It must look a bit sad to see a pregnant women laying in bed with those plastic prong things up her nose because her lungs being squished by the weight of her own belly. Every time staff came in there were like...ohhhh.
Saturday, December 25, 2010
The reduction when ok on Wednesday - 1 litre off without much pain afterward. The main difference this time was the tongue twisters Neil was making me say written in the day's paper. The midwife got a bit involved too and offered a dirty one...something about pheasants being plucked? Laughter is the best medicine?
Give these a go:
The sixth sick sheikh's sixth sheep's sick.
What noise annoys a noisy oyster? A noisy noise annoys a noisy oyster?
Anyway, my uterus is not happy and I have been having lots of contractions and I have been moved up here for closer monitoring (midwife to patient ratio = 1:1). They have done lots of blood tests ect to check for infection from the aminoreduction because that can cause 'irritation in the uterus' but it is all good. The contractions have settled down due to a lot of nifidipine.
The hospital has a special Xmas menu and Santa really did come around to all the patients this morning and delivered a gift from the hospital (not the one shown in the pic, that is Ine and Fred). Neil has rented tonnes of movies for us to watch this afternoon. He is going to get some Christmas lunch from the cafe and eat with me in my room. Merry Christmas everyone and thanks for all your support!
Wednesday, December 22, 2010
I get asked frequently about what the plan is because the excess aminotic fluid carries risks for delivery. Babies tend to float around instead of settling into a firm head down position. When the waters break the cord can get caught and squished cutting of the babies oxygen supply. However, vaginal births are usually best for Mom and baby if possible.
So here is the expanded version of the plan if we make it to 37 weeks:
1. if the baby is head down - planned induction of labour during business hours. They may do an aminoreduction first to get rid of some of the fluid. I will be given an epidural and the doctors physically will hold the baby’s head in position while they break my waters. Hopefully a vaginal delivery will follow. If not, I have an epidural ready to go for a c-section. The midwife thought I may get a cuddle while the umbilical cord was still attached but my doctor said he would rather hand the baby right over to the pediatric team...so I wrote that I would like a cuddle if the pediatric team thinks it is ok.
2. if the baby is not head down - C-section with an epidural so I am conscious.
In both situations the baby will be given to the paediatric team right away and intubated and ventilated right there in the operating theatre. They set up the room so I can see what is going on with the baby the whole time. There will be up to about 14 people present during the birth plus any medical, nursing, or midwifery students in the room. The MFM midwife told me just to focus on the midwife and my husband and ignore everyone else.
Neil will be with me in both scenarios and go with the baby to the NICU until I can join them.
If I go into labour early:
depending on the situation, I may still have the options of 1 or 2 but a 'code green' is also a possibility...code green is what the hospital calls over the PA when an emergency c-section is needed and all the necessary staff rush together. I have to be unconscious for the c-section in this scenario...hopefully we won't be in this situation because it means there is something going on that is dangerous for the baby and very traumatic for me to have to wake up not knowing the condition of the baby and possibly being quite sick from the anesthetic.
The MFM midwife has also arranged for my aftercare to be in the Antenatal and Gyne ward where I am currently staying in 1. because I know the staff and they know me 2. so I don't have to be in the postnatal ward with all the Moms and babies everywhere. She also arranged for Neil to be allowed to stay over with me, which normally isn't allowed after the baby is actually born.
I try to express breastmilk to be stored and fed to the baby through a feeding tube until he is ready to try the boob. 95% of babies with CDH have feeding issues, so not sure if we will actually get to the breastfeeding stage but will at least be able to give him all the benefits of breastmilk regardless of how it gets to his belly.
Tuesday, December 21, 2010
Neil and I both wrote cards to each other for our wedding anniversary yesterday and forgot to give them to each other! But, as he said, we were having too much fun in the park during his visit. Neil brought Bluey and I played seated fetch with him. He is getting very good at putting the ball exactly in my hand so I don't have to reach down for it. Apparently Bluey recognised the hospital right away and got really excited. It is weird how smart he is!
Another anniversary - we have made it to 33 weeks… trying to hang on 10 sleeps until Jan 1 for the new parenting payment and 35 weeks! For non-Aussie’s the parenting payment is a new initiative from the federal government to pay new caregivers minimum wage for 18 weeks to help with the cost of a newborn and encourage people to stay home. And to make it to 35 weeks would give our baby a much higher chance of surviving due to an increase in lung maturation. I really think we will make it all the way; time well tell how good my intuition is! Not sure where stubbornest ends and intuition begins...
My belly is getting bigger not only from the accumulating fluid but because baby is also growing. I think he is putting on about 200g a week at this stage and weighs about 2kgs.
Since touring the NICU I have been worrying more not less about how he is going to go when he is born. Unlike simply preemie babies, both of his lungs are being squished by his bowel and stomach and we won’t know until he comes out if he will be able to be ventilated or not. I have started to try and visualise being calm the moments after the delivery while he is being intubated and ventilated for the first time but I keep imagining a complete mental breakdown instead.
However, since worry is very unhelpful and generally makes me feel worse, I have been distracting myself by reading a very good book, The Book Thief. It has been a good reminder that some people definitely have had it worse than us – the Book Thief is about a German girl during WWII narrated by 'Death'. It is very quirky and beautfully written.
The doctor came in this morning and asked if we should try another reduction so I could go home for Christmas and I said no. (I don't think this was a serious question but an attempt to gauge my mental health and reaction to the prospect of spending Xmas in the hospital).
I am not getting any regular tightenings so I don’t want to risk it. The fluid level is still not as high as when I was admitted so I would really like to see if I can last until next Monday. So it looks like Neil and I will celebrate Christmas in the hospital! Apparently the staff put on a special breakfast in the craft room (I hope there are scrambled eggs) and Neil and I are planning a picnic in the park across the street. It is supposed to be 34 degrees – the hottest Christmas since the 1980’s.
Thursday, December 16, 2010
Last night Neil and I toured the NICU. I didn’t think it would bother me as much as it did. We already toured an ICU early on in the pregnancy…but the midwife showed us a couple of babies that are about the same age as our baby is now. She explained what all the lines going in were for and how the ventilator worked. I think the association between having a 32 week baby in my belly then seeing a 32 week baby in an incubator hooked up to the machines with all the lines made everything seem more personal and real. The midwife was great about answering questions we had about the ventilator, recovering from surgery, and holding the baby.
Q: How do you know when a baby is ready to go off the ventilator?
A: In your case, where there is surgery involved, we wait until the baby is weaned off the pain meds from surgery about 5-7 days because the pain meds depress the respiratory system. The ventilator can totally breathe for the baby or the baby can initiate breaths. The ventilator measures how deep of breath the baby is taking and can top it up if necessary. So when the baby looks ready to breath on his own, we try.
Q: How long is the baby on pain meds from surgery – is it standardized and how do you tell if the baby is still in pain?
A: Yes it is standardized to about 5-7 days and we measure vital signs such as blood pressure and pulse rate for signs of distress. Sleep patterns are monitored – they become disrupted with pain. Because the babies are intubated and the tube passes through their vocal cords they can’t cry. However, they make faces as if they were crying so even though they aren’t making noise, you can tell they are crying.
Q: When can I hold the baby?
A: You can hold the baby when he is stable, you may get a chance during the first week before the surgery but probably not the week right after surgery. We encourage skin to skin contact even with all the tubes, we are just very careful. You need to ask everyday, don’t hesitate. If he is having a good day they will say yes, if he has had a lot of procedures or tests that day that may say no he needs to rest.
Wednesday, December 15, 2010
This pic is sort of upside down - I am lying in bed and I took a aerial shot of my own belly. If you pulled the blue stripy fabric up higher you would see my boobs. And the weird piece of skin just below the monitor is what used to be my belly button (the monitor is just off center).
The big round thing is measuring contractions and there is another band lower down with a thing on it measuring the baby's movements and heart rate.
Anyway, I had to wear this thing for hours after the amnioreduction on Monday. The amino itself went ok, they took out 1.6L and the baby only kicked the needle once. But it really hurt after...the procedure was done at about 1:30p and I was still having contractions and pain at 11p despite taking nifidepine every 3hrs (vasodilator usually for high blood pressure ). The midwife asked to rate my pain level between 1-10. I said 10 for pain experienced so far in pregnancy. She looked down at me through her glasses...so I adjusted my answer to, 'ok 7 so I have 8,9,10 reserved for when I am actually in labour'. She happier with that and wrote down 7. I ended up taking some pain drugs and they gave me a break from the monitor so I slept for awhile. When the monitor when back on at 7am I was still having lots of painless contractions (like every 2 min). Even though the contractions were painless and irregular, it could progress into really labour so I was given salbutmol (the stuff in asthma inhalers) in a injection under the skin in my chest. This stopped all my contractions almost instantly but I had to put up with the crazy side effects for a couple of hours (it is a super stimulant). My heart was racing along at 165 for a while! Anyway, once things settled down I slept all afternoon and woke up this morning feeling great with the bub still on the inside so all good! It was worth it.
Sunday, December 12, 2010
Wednesday, December 8, 2010
I would never have predicted that I would be on hospitalised bedrest - but that is exactly where I am. Here are photos of the sitting room, view from my window, and pic of my bed! There is also a tea room and craft room. I am allowed to leave the ward by signing out. I can go down to the park infront of the hospital and the little shop at the front entrance. But need a wheelchair to go to the cafe or anywhere else in the hospital because it is really far! I am not allowed to push myself so I wait for visitors! My routine is as follows: morning observations 7am - the midwife comes in and takes my blood pressure, pulse, temperature, and asks about my wellbeing...she also listens to the baby's heart beat. I take my blood glucose levels (forgot to mention I have gestational diabetes) 7.30am breakfast, select my meals for the next day, shower, dress into regular clothes and wait for my doctor and midwive to come by on their rounds. I usually spend the morning mostly in my room because that is when all the other doctors come by or when they want to take me for an ultrasound. I have a specialist midwife, a doctor, a social worker, a diabetic educator, diabetic doctor, physiotherapist. Other doctors who also come by on occasion, the pharmacy doctor, paedetric surgeon, neonatalist, the doctor on duty for that shift. Ward midwives complete observations on me every 4 hrs during the day but let me sleep through the night. I take my blood glucose 2hr after eating, then have a snack. Lunch is 12.30...you get the picture...it can be hectic. Afternoons are quieter, and if I don't have a visitor, I try and have a nap before dinner at 5.30p. I have a TV in my room or can watch a big screen in the lounge area. I am reading a great book right now called The Book Thief.
What is it? Too much amniotic fluid. In my case it is likely because the baby’s esophagus is being squished by the other organs in the chest cavity that aren’t meant to be there. Not all women who have babies with CDH have polyhydramnios and if you do have polyhydramnios it doesn't mean there is something wrong with your baby. In fact, in more than half the cases, doctors don't know why it develops.
Normal fluid is about 800ml at 34 weeks and 600ml at delivery...there is a amniotic fluid index (AFI) that indicates how much fluid is too much. Using an ultrasound, the sonographer measures the 4 deepest pockets of fluid without baby parts and adds up the total number of cm. Polyhydramnios is indicated over 20cm. Mine is currently 40cm. Last Monday I was having contractions and was admitted to the hospital. They gave me drugs to stop the contractions and drained 2.5 Litres of fluid to bring the AFI down to 30 cm. 9 days later I am still in hospital and the fluid level is back up to 40cm. I look like I am having twins or triplets. There is about a 50% chance I will go into preterm labour and one of the complications is a prolapsed umbilical cord. That happens when the baby is floating around in all the fluid and the cord gets caught and squished when the waters break. This cuts off his circulation and would be very bad - thus I am in the hospital so if my waters break they can get him out in 5 min or if I go into full out labour, then can control the waters breaking. And to answer some of the most common questions:
- no, I don't have stretch marks.
- yes, it is very likely I will need c-section.
- amniotic fluid looks like pee and yes, Neil took a picture.
- yes, my belly is much, much bigger than normal for 32 weeks.
Between weeks 22- 27 I went through a rollercoaster of emotions experiencing all the stages of grief… I managed to be positive most of the time, and was enjoying the pregnancy. I had several dreams about the baby, including one where I went looking for our baby in the nursery and found our teenager sitting there! We sort of bought baby stuff and sort of hesitated to buy too much.
When people commented on the pregnancy sometimes I think I didn't look excited enough, I felt like I was hiding something. I avoided other pregnant women. I went to a couple of yoga classes and loved the stretching but found the happy visualisations of the baby growing difficult. Our baby had organs where they shouldn't be. Instead I visualised his lungs growing and him swallowing lots of amniotic fluid to develop the lungs. I imagined his liver dropping back down through the hole in the diaphragm. I felt isolated from the other women in the class and left quickly straight after class. I focused on eating well, exercising, and enjoyed my work. I was conscious that my belly seemed bigger than it should be and my weight seemed to be skyrocketing. I had already gained 14 kilograms.
Neil and I decided that we needed as clear of diagnosis as possible before deciding about continuing with the pregnancy. We scheduled a fetal echo cardiogram, second opinion ultrasound, meeting with the paediatric surgeon and paediatric cardiologist.
We had some good news this week. No heart abnormalities, despite the heart being deviated to the right side of the chest by the stomach and bowel. The cardiologist reassured us that functionally the heart was fine.
The paediatric surgeon explained the surgery to us, the risks, and prognosis based on her understanding of our case. The surgeon wanted us to understand that we were in a poor prognosis category because of the early diagnosis and an indicator called the Lung to Head ratio (I had an MRI later on that would also show 1/3 of the liver in the chest which is also indicative of a poor prognosis).
However, every doctor consistently said the same things: some babies with a good prognosis end up doing badly and some babies with a poor prognosis do well. Some even become 'proper sportsmen'. A 3 month hospitalisation. These babies have a higher chance than average of having another disability like hearing loss or learning disability. They tend to be behind developmentaly then catch up by age 2. Reflux and feeding is usually an issue. It is very hard to predict the outcome. One doctor said, "look, it is a leap of faith really, some people can't even handle the best case scenario and decide to terminate the pregnancy". I was struggling with our decision to continue with pregnancy. My main predicament: who chooses the circumstances that will be in?
I had a dream that I was holding our baby in the hospital, the doctors and nurses were in the background. I felt like I couldn't breathe. I put the baby's oxygen tube into his nose. I could breath again. I was changing his diaper, but he got cold. I wrapped him in a blanket and he laughed. I woke up understanding that I was already a Mum, deeply connected to the little baby growing in my belly. There was no way I could terminate the pregancy - I needed to accept our situation. I was pretty over statistics and just hoped that our baby would be in the lucky 10, 20, 30, 50% that survived. I hoped for a miracle baby and the strength the survive if he didn't live. With my background as a special ed teacher and Neil's physiotherapy experience, would be excellent parents to a child with a disability.
A 10 year boy living with cancer was interviewed on a morning show this week. He was an author, and asked to provide advice for families that had sick children. He simply said, "Be brave." I burst into tears.
I only had to wait 2 days for the results – the doctor said she would call me immediately when the results came back from the lab but I had an appointment in 2 days anyway. To say they were the most stressful two days of my life would be an understatement. I took leave from work and I have no idea what I did all day. I read about CDH, Trisomy, termination of pregnancies. I tried to imagine terminating the pregnancy.
The first thing the doctor said was when she came into the room was, "so do you want the good news? No trisomy 18 or any other chromosomal abnormalities." And did I want to know the sex? I was stunned. I had worked myself up into such a state of stress, convincing myself that the baby had trisomy and that I would have to somehow get through an abortion that week.
Next steps, finding out more about the CDH diagnosis and whether termination was something we should consider. My husband, Neil, was still on his way home from overseas but we were talking at every opportunity.
I was excited to find out we were having a boy!
The Monday following the ultrasound, I met with the head of maternal – fetal medicine and proceeded with an amniocentesis. An amniocentesis is a procedure where a fine needle is inserted into the uterus withdrawing a sample of amniotic fluid. The fluid is then DNA tested for genetic abnormalities. You can also find out the sex of the baby with 100% accuracy. The doctor uses an ultrasound to guide the needled. She showed me our babies stomach sitting right beside the beating heart, which was pushed over to the right side of the chest. Exactly where it should not be.
During the same appointment, we were joined by a specialist neonatal doctor to help her explain CDH and Trisomy 18 more fully. The chances of having a baby with CDH is about 2%. The chance of having another baby with CDH is about 2%. The neonatalist presented a much more positive prognosis than Wikipedia – 60-92% of babies born, full term with no other abnormalities, survive. Other abnormalities include heart defeats or chomosomol conditions, like Trisomy 18. Trisomy 18 is always fatal, usually within a few days of birth, and termination of pregnancy would be recommended. They also explained that some parents also decide to terminate pregnancies with the diagnosis of CDH and that they would support whatever decision we made. I asked a question about terminating the pregnancy. The doctor explained the procedure. I was totally horrified to learn that I would have to go through labour. My reponse was, "I have to be concious? Can I be unconcious?"
Completely overwhelmed, I rang my husband and told him he needed to come home from working overseas - he got on a plane the next morning.
The sonographer asked me if I understood why I was there – never a good sign. I explained yes, I understood that my blood serum screening indicated a high chance of Trisomy 18. I began to get nervous almost immediately when, as she was swirling the gel over my belly with the ultrasound stick, she said she would not be doing a full morphological screening today - including the heartbeat today. I knew immediately she couldn’t find the heartbeat and she was stalling.
She found it a moment later and I was relieved. The night before I had read all about Trisomy 18 and the ultrasound indicators. I knew she would be looking for clenched hands, strawberry shaped head, and ‘rocker bottom feet’, amongst other things. I squinted at the ultrasound trying to predict the result…I saw the baby open and close it’s hands…relief. She was very quiet during the ultrasound, then at the end said that she would be right back with the doctor to talk about the results.
The radiology doctor came in, confirmed my name, date of birth and address. He then looked through the ultrasound with the songrapher and quite plainly told me that the baby had a condition called congential diaphragmatic hernia and he was going to go get an obstetrician to explain it to me. He looked very upset. The sonographer quietly asked if I had any questions. In complete shock, all I could think to ask was, "so you didn’t find anything else indicate Trimsomy 18?" She said no. What I didn’t realise thing, was that 20-30% of babies with CDH have an associated chromosomal anomaly.
While waiting in a private room for the doctor, I goggled herniated diaphragm and looked up CDH on Wikipedia. I also called my husband Neil, who was overseas working. When the obstetrician finally came in, she explained what the sonographer found and that it was my choice if I wanted to proceed with the amniocentesis. She said that CDH is treatable with surgery but not if the baby has Trisomy 18. Did I have any questions? I left the room not asking any questions, just completely stunned. I made it to the car before bursting into tears. I rang my husband again from the car.
At 16 weeks I received a phone call from the Women's Health Clinic at Flinders Medical Centre. The midwife explained that the results from my blood serum screening test for came back indicating a high risk for Trisomy 18 - an always fatal chromosomal abnormality - in the fetus. I was stressed but I told myself not to worry as there 70/71 chance that I would test negative with a further testing. I had an ultrasound booked for the next day. If the ultrasound showed any signs of the condition, I would definitely have an amniocentesis to confirm.