Disco Knitter

Susan rang today, and (1) we are seeing the neonatologist on Thursday. We are also seeing (2) the social worker. I decided to do this, since if things go well, well need to hook in to some support services, so we might as well know who we are dealing with.

(3) I rang my friend Anna and had a long chat about shit that happens. I think this was a really useful conversation to have just now, I havent quite got my sense of humor back, but I can see it from here.

And (4), I decided to get positive, and I rang my pediatrician, and explained the situation to the lovely receptionist. Dr McVeagh rang me back this afternoon, and I am going to make an appointment to see her with this baby in mid December.

One more thing. After a very quiet morning, baby has been kicking up a storm all afternoon and evening

Thanks to the daily squee.

Yesterday we clocked over to 22 weeks.

On Thursday my doctor gave me three more pathology forms, for three more out patient anti natal visits, and said Id be going in to hospital after that, which puts the date around the 18th of October. We had asked to bring forward the meeting with the neonatologists by one week, just because I feel like I need time to digest the information before having to make any big decisions. Unfortunately, my dr told me that we wouldn’t be seeing he neonatologists for another 2 weeks, a week after we were initially told it would be, and two weeks after I had wanted it.

On Friday, I had a meltdown. Two things were bugging me. That my wishes were ignored completely about seeing the neonatologist early, and that my doctor didn’t seem to have the time to talk about it with me. And that made me cranky about something else. In the three weeks since I was told that one of my babies had died, nobody from the hospital had said anything to me about counseling, or even talking to someone about how I felt. Granted, I didn’t want it at the time, and I’m not sure I want it now, but if the same thing happened to one of my loved ones, I’d want to think that there was some service offered to them. The death of a baby at such a late gestation is a big thing to most mums, and I find it quite shocking that I was just sent home with no resources at all.

So I decided to call the perinatal support team, and just mention my concerns. I wasn’t about to kick up a stink, but if there is something I feel strongly about, its using my strength to make things easier for others.

I rang the pager number that was given to me by the team leader a few weeks ago, but she was on an RDO. The call was answered by a very lovely woman, but it wasn’t Susan, and I wasn’t in a fit state to explain my case from he beginning, so I tried to ring off and say that I would call back on Monday. But she wasn’t having that and was quite insistent that she could help me, so eventually I started to tell her my story.

And I lost it. I completely broke down on the phone to this stranger. And since I haven’t cried for a long, long time, I just couldn’t stop the tears from coming. Eventually I explained about the NICU visit, and she promised to arrange it for me, but I just had to get off the phone quickly, and I’ll deal with the other issue later.

Quite honestly, this situation is taking a toll. Each day seems harder than the one before, and every hospital visit seems like an unbearable force bearing down on me, its almost all I can do to put one foot in front of the other to get myself through the front door. Previously, I’ve been able to stumble through it all with a smile on my face, and to crack jokes, and see he lighter side (though how, I am not so sure).

And from now on, its only going to get harder. As this baby gets closer to viability, the stakes get higher every day. And now that we know we have a little boy, its hard not to think of names, to think of the future, to think about what a lovely big brother this baby is going to have. But still, that future is as tenuous as ever, and despite being 7 weeks into the journey, the end of the road seems further away than ever.

Had the scan this morning (still waiting to see the doctor afterward). Growth is ahead of dates, heart is fine, everything is good – except the amniotic fluid levels. Normal AFI is about 15, mine was 1.7.

And it looks like we have another penis!

Something about prolonged abstinence and enforced laziness makes the booze look all that much more attractive, so I am saving this link for when I can drink again. Honestly, I hope that day is still a long way away (currently 21w 3d), but somone else might enjoy it!

Quick spirit infusion.

I’m thinking Lemon Myrtle vodka…

Edited to add a retraction and apology. Dad must have tidied up on his way home – chair is neatly tucked behind the outdoor setting on the front porch. Universe, we are friends again

On Wednesday, the gorgeous Steph came over with two of her beautiful children, and a hot pink banana lounge, so I could laze outside and enjoy some of the lovely spring sunshine.

Yesterday, when mum and dad were here, dad set it up for me in the yard, but I didnt get to try it out because the weather turned cold.

Now this morning is a beautiful day, and I was looking forward to christening the lounge while the cleaners worked inside the house, and catch up on some vit d that I have been missing for the last 6 weeks.

BUT SOME BASTARD HAS PINCHED MY BEAUTIFUL LOUNGE!

Since all this began, Ive been taking my temperature 4 times a day, and had instructions to trot myself off to hospital if it went above 37.5.

So on Tuesday afternoon, I started to feel a bit headachy, perhaps like I was getting a cold, and my temp went up to 37.6. I decided not to panic, and kept monitoring it for the next hour or so until Mark got home (Inigo was having a sleepover with Nanna and Gonad). When Mark came home, my temp was still 37.6, so I rang the hospital early pregnancy clinic, who told me to ring labour and delivery ward, and they told me to come in, but to have dinner first.

So after dinner and a shower, Mark drove me in to the hospital, where we promptly got lost. And while wandering around near the intensive care ward, we found my specialist who was on her way home, and had varied from her usual route, to meet up with us quite fortuitously. She personally guided us to the right place, and briefed the midwife in charge about my case.

Long story short, they werent worried too much about my temp, it was stable, so they sent me home with some anti-biotics (2 days before I was going to go on them anyway, I am doing one week on, three weeks off until the baby is born). But due to a few babies needing caesarians while we were there, it was almost 2am before we were able to leave the hospital.

Not a very exciting story, but I realise that people do tend to freak when they see the H word in a post

Todays visit was pretty routine, no visit to the vampires because they took blood on Tuesday night, and mum came with me, so she got to meet my lovely doctor.

And next week is my 20ish week scan.

A delivery man brought this gorgeous box of handmade and single origin chocolate this morning. Just the thing to wake up to after a night in hospital.

Thanks Tina, I shall be toasting your good health for days!

Most people around this stage of pregnancy have a morphology scan, to check the babies development and that everything is on track.

Since I have very little amniotic fluid, which makes it very hard to see the baby in any detail, my scan has been delayed until I am about 23 weeks. Which means we wont have any idea about gender at least until then, and possibly not even then.

Which is driving me batshit crazy, of course, but that is the least of my worries

Will report back after the 23rd of September.

Existere asks an excellent question – what happens if the baby arrives before 26 weeks?

I have heard of babies surviving and thriving when born as early as 22 weeks. Obviously, the chances arent good, but they improve with every week. At 26 weeks gestation, NICU is government mandated, that is, all babies born after 26 weeks get the care they need.

Before 22 weeks, no hospital will take extra-ordinary measures to prolong life.

So what happens between 22 and 26 weeks? The parents have to decide.

Around 23 weeks, well meet with a neonatologist who will give us a tour of the NICU, and discuss various outcomes with us. At that point we are supposed to write a birth plan, with our care decisions outlined. Obviously, they arent going to recommend NICU for this baby before 23 weeks. And I suppose well make up our minds once we have more information.

That being said, we have lung maturity as the great unknown. If this baby is born at 36 weeks, it might still not have enough lung development to be able to survive, its all a big gamble. But if the lungs are ok, what other issues might we be dealing with before 26 weeks, I just dont know, and I am not up to doing the research just now.

So while I wont want to be caring for a profoundly disabled child when I am 80, I am also going to find it impossibly difficult to just give up on this life I have fought so hard for. And each day, each week, will only make that decision harder.

Yesterday marked twenty weeks, and five weeks without measurable amniotic fluid.

Although this baby and I still have a long road to travel before he or she is home safe, I feel that this is a significant milestone, and I am thrilled to be here.

Now, for the next part of the journey, the road to viability. Another three weeks before we tour the NICU and meet a neonatologist, five weeks before I go to hospital as an inpatient, and six weeks for viability. Although many babies survive earlier gestations, things are harder for twins, which is why I have been told the minimum is 26 weeks.

We are still thinking about names. Both babies will need a name, no matter how this goes.

And tomorrow, mum and dad return from Thailand, so Bev and Ted can have a bit of a rest for a while!

We still have a heartbeat. This is starting to get torturous.

Two days ago, during my weekly checkup, my doctor found only one heartbeat. One of my babies had died since my last checkup.

Again I was offered a termination. I asked if the risks for me were significantly increased, and since they are not, I declined.

Apparently I will either go into labour and deliver both babies, or the dead baby will re-absorb, and the pregnancy will continue. Who knows for how long, but I have to take the chance.

At least we dont need to buy a people mover now, right?

Although the natural thing to do would be to howl at the moon, get horribly drunk, and delve into hysteria, Ive chosen to keep it together for the time being, while I still have a live baby to gestate.

Just dont ask me how I am.