24 Weeks. Viability

Here I am 24 weeks. It feels strange, I know it’s viability, I know this means they wont tell me “abort” my son if I show up with pPROM or preterm labour. I know this means they will at least *try* to save him. But I also know a baby born at 24 weeks isn’t likely to survive. So I have a mix of emotions.

I am taking part in the Capture your Grief 2012 for Pregnancy and Infant Loss Awareness Month. Basically I’ll add/take a photo a day on a theme, to show my grieving and how it affects my life throughout the month. Also this is a way for me to show that my son is very much still a part of my life, I haven’t forgotten him. He is my first born and that will never change. When this little baby gets here and people ask if he’s my first I’ll still say no. I have two sons, no matter what happens.

I missed Day 1 of capture your grief yesterday, where I was supposed to take a picture of a sunrise. Of course I’m on  bedrest and I wouldn’t be able to do that anyway, so I’m using a picture of a sunset that I’ve always loved. Taken at my local beach a couple of years ago, it truly is beautiful. It also serves to remind me that the most beautiful of things in life are often around for only the briefest of moments. A sunrise or sunset is only around for mere minutes, but it doesn’t change the beauty of that short time, just like our angel babies.

Day 2: Today the instructions say a “before loss self portrait.” Something that represented me before I lost Gideon. I spent a good while searching through my pictures for something that was fitting. It’s hard because I’m normally the picture taker, so frequently I’m not in pictures. I think my wedding was the only day I didn’t bring out my camera. The pictures I do have are generally not just with me. And secondly I hadn’t realised how much weight I’d gained before I lost a load and got pregnant with Gideon, so I don’t particularly like many of the photos.But in the end I decided on this one, it’s while I was in hospital, so not exactly before tragedy struck, it was precisely 13 days before Gideon was born and at this point I was feeling a little hopeful that we would be just fine.

There you go, day 1 and day 2. Day 3 to come tomorrow “After loss Self Portrait” more photo searching for me.

Femara

I received my femara today, it came in 2 days! I was very surprised but happy to see it. I have 15 tablets of 2.5mg, I think I’ll start with 5mg days 3-7, next cycle, because I need 100mg of clomid, so I assume I’ll need two tablets of femara too.

I am very eager to start them. Please, please, please be my ticket to a take home baby. I’m ready, I have my plan, I have the cause of my pPROM,

I have coped through a year of grieving and pain, and loneliness and faced all the challenges along the way.

I have kept my kindness, my love, my gentle nature through the worst of times.

I have faltered and fallen, but always climbed back up again.

I have refused to be bitter or cruel.

I have supported others through the same pain.

And I am so HAPPY that I didn’t get pregnant before this. It’s so hard to admit, but I am. I am happy that I didn’t get pregnant months and months ago, otherwise I’d have lost another child. That is too heartbreaking to imagine.

I am so grateful to my little Gideon for looking out for us, for protecting us from living that pain again.

I am so grateful that he came to us, to let us know that my cervix would never hold a pregnancy without help. In doing so, he protected all his siblings. He is my angel.

And now I am ready to face the challenges of pregnancy and what follows, in light of what I know.

I am ready. The time is right.

The rainbow is fighting it’s way through the dark storm. My rainbow, from my little boy.

An answer at last

The appointment went well today.

Dr F is going to do a vaginal cerclage at 10-12 weeks. He feels my cervix is incompetent because it was already open before he even did the hysteroscopy. He doesn’t want to do the TAC because of my weight. Which I understand, but I really wanted that TAC. But instead I’ll do bedrest.

But aside from that, which I already suspected, I also have BV, bacteria vaginosis. This is a bacteria that lives in the vagina in some women. Mostly, it doesn’t cause any issues, unless you also have an incompetent cervix. Because my cervix opened prematurely, the bacteria (entrococcus) was able to bypass the cervix, and infiltrate the amniotic sac, and weakening it. The sac then burst, either because it was funnelling through the cervix, or because of the infection, probably a combination of both.

He said only 1 in 10 women have TWO causes of their pPROM, and I was unfortunate to have both.

Had I not pursued this appointment…had I listened to Dr Clarke who told me to “wait and see”….had I not listened to my intuition that my cervix opened, I would almost certainly have lost another baby. It IS a good thing I haven’t got pregnant yet, or I wouldn’t know all this, and I would be visiting two babies in the cemetery. There are reasons for everything, and I think my Gideon was making sure we didn’t conceive until we were sorted with these plans.

My lupus test was negative BUT my ANA was positive. Dr F said this wasn’t a big deal, and it can positive in women with no issues, BUT I DO have issues, I have an unexplained chronic illness, and a positive ANA with my symptoms sounds like a certain autoimmune in my view. So I want that looked into further.

My progesterone at 8dpo, and on 100mg of clomid (of course Dr F did not know this) was 53!! Without clomid it was 11, so a HUGE improvement. But because I couldn’t tell Dr F this, he assumes I’m ovulating well.

My hormone tests were all fine, even testosterone, which should be raised with PCOS. These were taken on cycle day 3, like the hormone panel normally, is but they were all normal and low.

I still have a yeast infection, still from the pregnancy and nothing will get rid of it. But all my liver, thyroid and full blood panels were just fine.

I wasn’t able to get the clotting factors done as I didn’t give them enough blood, so they re-did it today. It took them 4 attempts, but they got it.

I will get scans every month (ish) from 16 weeks, and cream for my BV every month for 1 week from 12 weeks. I will also visit Dr F every 1-2 weeks during pregnant. It is a long way to Liverpool 2-3 hours one way, I am very concerned that doing this in later pregnancy, with my TVC could cause issues. I don’t know if it’s safe, but I’m telling myself he wouldn’t suggest it if he didn’t think it was. I might have to lay down in the back of the car instead of sitting during that journey.

I’ll be honest, it wasn’t all I’d hoped it would be. Of course I hoped he would give me the TAC, which as a 95% success rate. He offered me 70% success with the TVC. Not the odds I wanted,  but better odds than doing nothing. And he seems confident we will have a successful pregnancy next time.

He is very insistent about my weight, but he doesn’t seem to understand that this is the LOWEST weight I’ve been in years, it’s been a long, tough road, and I’m not giving up, but it isn’t easy.

Emotions wise, initially I only felt relief. Then crept in the sadness. Likely it was the BV which caused Gideon’s delivery in the end. The doctors had stopped the antibiotics a week before we went into labour, if I’d known I had BV I would never have stopped them, he could have had a week, two weeks, 10 weeks longer. And it’s all me, it’s no just a random event, it’s my body, my crappy cervix, my BV. All me. It gives me a feeling in the pit of my stomach, grief, and anger and guilt.

But mostly, I am very excited and happy to have answers. This was a long time coming and I knew that I probably wouldn’t get the TAC. I also knew, in my heart, that I had an incompetent cervix, I knew that it funnelled, just as Dr F confirmed. The TVC wont stop the funnelling, but it will stop it opening from the outside, so no infection should pass.

It will mean bedrest, at least I am doing bedrest. From after my TVC until around 32 weeks, I’m am on  bedrest, not as strictly as I would have been had I not had the cerclage, but around all my appointments and scans, I do intend on resting, just relaxing in bed, and not climbing too many stairs,  which is hard as my toilet is halfway upstairs and halfway downstairs. So, I’ll need to go up there.

But all in all, it’s good. And after the appointment we went out to a museum in Livepool (well, they’re FREE) and then went out to lunch to celebrate.

And all I can think, is that Gideon saved all my future babies lives – all his brothers and sisters. I would never have known I had these issues without him.

He is my wonderful angel. And I miss him so much. But I know he really is watching out for us.

My appointment at the miscarriage clinic

Well, it was today and it went well.

I saw a lovely nurse called Anne-Maria. She took all my history and all my weird symptoms down.

She said she had spoken to Dr F and they had agreed that it seems likely it was my cervix that caused my pPROM and loss. But they want to test for absolutely everything else that could cause it, so they can  be sure.

They took many, many vials of blood. Testing me for sticky blood and lupus and I don’t even know what else. But they had trouble getting my  blood, as usual and had to call the anaesthetist in to try and draw blood from the stone that is me. He made a lovely mess by getting blood all over the floor, over him, over me…but he got his blood. Ouch, I hate having blood taken from my hands.

And on the 7th of February I have my hysteroscopy. Under full anaesthetic, but that’s just how it is.

I am nervous, but I know it’s important. They are going to check my internal and external cervix for weakness and dilation, so they can decide whether to TAC me or TVC me. I’d love a TAC of course, it would mean no bed rest, and a much higher chance of carrying to term. But I trust Dr F, he knows what he’s doing.

So, it’s all happening here.

On the only minus side, I can’t try to get pregnant from now on until about 2 weeks after the procedure. So next month is out.

So unless I get pregnant this month, which I am deeply hoping I will, then I have only March to get pregnant, otherwise there will be no 2012 rainbow for me. I feel a bit sad about that. But I know this is important. I don’t want to get pregnant just to lose the baby. I always said I would go through my last pregnancy, even if I knew Gideon would die, because for the time I met him, it was amazing. I would never take away those 17 days.

But I couldn’t do it again, I want to be able to bring home my baby next time.

I love my angel, but my heart hurts that I must love him from afar.

Talking of my perfect angel, he sent us this, wonderful double rainbow on the way to the clinic today. How amazing is that? Gideon is so wonderful, I love him so much, I know he was telling me it’s going to be OK, our rainbow(s) is on the horizon.

 

Referral to Liverpool Women’s Hospital

Today, I received one of the most exciting and scary letters ever. My referral to Liverpool Women’s Miscarriage Clinic.

Apparently, first I have to go the Miscarriage Assessment Clinic and see the Miscarriage Clinic Nurse. She will do a whole pile of miscarriage blood tests and arrange for a hysteroscopy as a day case, then 6-8 weeks later I get to see Dr F to discuss the results.

Very scary, I’m not looking forward to that procedure, but anything in the world to get my baby, even scary invasive procedures like a hysteroscopy. And all those blood tests should be very helpful in making sure I have no underlying issues that caused my pPROM.

All this is happening in only 9 days, on the 19th January. I have butterflies in my stomach, and feel excited. Finally something is happening.

Of course I wont be able to ttc next month if I need that hysteroscopy, but who cares? I’ll take a month off, I’ll enjoy my month off.

This month is looking a bit strange, I haven’t got a positive OPK yet, my temps are VERY erratic and no sign of ovulation. I would normally expect ovulation today or tomorrow, but my temperatures look as erratic as my many annovulatory cycles. So, I really don’t know. Either way, I’m just happy to have the ball rolling towards either an answer to my pPROM or reassurance that I wont need any additional help next time.

I am so grateful my doctor agreed to the referral, I really am.

Alternate Realities and Time Travel

One thing that many baby loss mothers wish for, is a second chance. To go back in time and change what happened, or just to try to change what happened and save our child’s life.

We were strangely discussing alternate realities yesterday. Is there another reality out there where Gideon survived? What if every possibility is played out, and out there Gideon lives, somewhere. Somewhere, I am holding him, somewhere he is laughing and playing and growing.

Of course this led to the idea of time travel, what if I could travel back to before my pPROM, and went straight on bedrest, or told myself to go straight on bedrest and Gideon survived and that therefore becomes my reality. Gideon alive, my other half never knowing what happened to me and Gideon in my timeline. But where does that leave my other half from the original reality? Without Gideon, AND without me, because I left to go back in time, leaving him alone.

So even if I could time travel, it would hardly seem fair to him. Even if we both went back in time we would leave our families without us. Would we do it?

If someone came to me and said “I am giving you the chance to travel back in time,” or Doctor Who came along (David Tennant of course) with his tardis and offered me the chance to go back and save Gideon (although he wouldn’t because it’s already happened in my personal history). If I agreed and went back and told myself to be careful and stay in bed, and Gideon survived, then we went back to the future and Gideon would be alive and well…it wouldn’t be same reality that we left behind. The reality we left would be missing a Gideon, me and my other half, and my family would be missing us all.

You might wonder if this is a strange topic for anyone to discuss, but the reality is, I have spent many a night, wishing and praying for a second chance, the chance to go back and re-do it all. And not just with vague hope, but fervently wishing and praying it would happen, that I would wake up and suddenly I would be pregnant again and it was last February or January and I would have the chance to change it all. I still do it, although less fervently, 6 months down the line.

But what if I did wake up and it was last January. What then? What of this reality? It’s difficult to imagine I would be happy to leave  my other half grieving the loss of his son, and then suddenly grieving the disappearance of me.

It’s probably a good thing time travel doesn’t exist, or my mind would explode with all the thinking.

Pregnancy and Infant Loss Awareness Day. The Wave of Light

Today is pregnancy and infant loss awareness day. Today at 7pm thousands of people are going to light a candle for one hour, to participate in the wave of light.

When I think about all the babies that never made it, never got a chance to grow up, I cry.

My Gideon should be here with me now. He should be in my arms, or bouncing in his bouncer or sleeping in his cot. He should be experiencing new things every day, learning to laugh, to smile, he shouldn’t be just a memory. But he is.

Everyone’s aware this is breast cancer awareness month. No one knows that it’s also pregnancy and infant loss awareness month. Even though 1 in 4 women will experience pregnancy and/or infant loss in their lifetime.

When I think that Gideon could have survived, I get a hollow feeling in my stomach, a lurch of sickness. He could have survived. There are so many what-ifs, so much guilt, and us baby loss mother’s live with this pain, this agony, this grief, these endless what-ifs and the guilt of wondering if we did something wrong.

When I light the candle today, I don’t just remember my Gideon, but all the babies lost and all the mother’s (and fathers) suffering, I remember them.

I will leave it burning in my window all night, not just for an hour. Burning so my Gideon and all his angel friends can look down and know that I remember, that we are thinking about them. They are never forgotten.

Light a candle today. Remember.

Just because a child lived only a few hours, or days, or was born sleeping, doesn’t mean they didn’t influence lives, that they aren’t missed. I’ve lost a lot people in my life, and Gideon’s loss hurts worse than all of them.

And no matter how many children I have in the future, they will never replace Gideon. He is my first born, my little warrior.

I shall not be temped into optimism!

My temperature was high this morning, after a very low dip yesterday at 6dpo. Those in the know will understand why this might cause optimism. However, I shall not be tempted into feeling hopeful and excited. Mainly because I feel feverish, I think I ate something that upset my stomach, which isn’t hard to do. I’ll see what the temp does tomorrow, as I’m expecting my period in 3 days anyway. It could be a little longer because of my vitamin B6 and progesterone cream, but I’ll know by the temps. Last time my temps were near 37 C when pregnant as opposed to 35.6.

Anyway, as I said I refuse to get excited this time, last month I felt so nauseous and gaggy, and my temp slowly dropped and then on the day of my period it suddenly jumped up and my period came anyway.

So, staying calm and realistic. 6dpo would be kind of early for implantation anyway, especially as on Gideon’s cycle it was 8-9dpo.

If I don’t get pregnant this cycle, I’m going to the doctor and trying to get metformin, to help me along, especially with weight loss which I’m struggling with. And I have a dentist appointment in a couple of weeks, I went yesterday but he asked if there was any chance I was pregnant and I couldn’t exactly lie so I told him we were trying and he refused to do any x-rays or treatment. He says to come back if I’m not pregnant, otherwise just live with the pain. Luckily I’m used to just living with pain.

I was starting with my monthly “flare” yesterday, felt like I’d been run over by a truck. Wish I could figure out what was causing these “flares” and if there were related to what happened in Gideon’s pregnancy. But the doctor’s think I’m mad, so mad I had a really, really rare and unexplained pregnancy complication (insert eye rolling here).

Another blog reminded me I haven’t finished writing or uploaded my pPROM story or Gideon’s birth story, both on my to do list by the way. Watch this space, so to speak.

On the brink

A day of near misses, slow declines and tears. He is very swollen today, a sign of sepsis, he cant get his sats higher than the high 70s, even though he is on full ventilation, maximum support, They told us there is nothing more they can do for him, now it is up to him. If he can fight this, they will support him, if not…the despair overwhelms me.
I cannot help him, I cannot fight his fight. He looks so ill and I can’t even hold him. I can only stand back as they try to bring him back time and time again. And believe, I can believe in him, and that he can win. A long night lies ahead, will he make it?

Hold on tiny warrior, this is a battle worth fighting,

Hold on

So, hes stats aren’t dropping as fast, they called the doctors at Alderhey for advice on his bleed. Although it was resolving, the fluid is building up in his brain, putting pressure on his brain and causing damage. After much discussion, they decided to put a needle into his ventricles to drain the fluid, I was terrified. but they did one scan before beginning and saw it had shrunk, so there was no need for the big brain needle for now.  But the damage is done though, we know this and accept this. His sats are still dropping when handled too much, they often drop really, really slowly, like going 88, 87, 88, 87, 88, 87, 87, 86, 87. 86. 87. 86. 86, 86, 85 etc, etc. until they are really low after about an hour and then they use the neopuff to bring him back. And when climbing back it takes that long too. His oxygen is still near 100% on his vent, which I don’t think is necessary, even if you reduce the oxygen it makes no difference at all to his stats, same with increasing the oxygen, it does not increase his stats.

It has been really hard, they didn’t let us know just how close they came to losing him this morning until we spoke to the doctor later. We were outside and no one came out to tell us what was going on, we had no idea. The doctor in charge was actually stopped working on him, because he’d had 3 shots of adrenaline, they’d bagged him and were doing compressions, so they thought it was over. When they stopped he picked right back up. I was really angry to discover they hadn’t called us in, I would want to try kangaroo care to bring him back, or at least to hold him.

But he is doing a bit better, he is still really unstable, this infection is being  kept very hush hush. No one has even mentioned it to us directly, instead I read his chart! No one has talked to us about it, no one has even tried to explain what it is, where it came from and his prognosis. What’s more, another baby on the unit is under “barrier nursing” and no one is talking about that to her mother either (I asked the mother – she had no idea her baby had an infection). The other two are not well either, and no one is telling the twins mother anything. I asked directly about the infection and it was glossed over. No one told us he was on antibiotics, we found out on rounds, no one told us his CRP was 47!!! I overheard doctors talking! This infection is pretty bad from what I’ve read and I wonder if there is an outbreak in the unit, and they are trying keep it hush for now.

Either way my dear Gideon is in a lot of trouble, he is trying so hard still. He is heavily sedated but when I fed him he tried to respond to me, tried to wriggle. I left him at 92% sats, but I am not planning any time in the future, just hour by hour. My Gideon, I love him so much.