Ni Hao

Which is how Tom says “New House”.  I was incredibly confused for a while, why had my son started saying hello in Mandarin? Where had he picked it up from?  It wasn’t until we were driving away from our new house and Tom started plaintively saying “bye bye ni hao” that I understood what he meant.  Tom is rather pleased with his new home, he has a proper sized bedroom at last and thanks to Great Granddad’s neighbour a (nearly) new big boy’s single bed.  (House clearance – I don’t think anyone died in it, no stains on the mattress anyway)  Bedtime is now Tom’s favourite time of day, ask him if it’s bedtime yet anytime after Waybaloo and he’s marching up the stairs to the bathroom to clean his teeth.  That he bounces out of bed almost as soon as we turn the light out after the last bedtime story is probably a surprise to no one, but he stays in his room, doesn’t play too loudly and is quite delirously happy with his new bed.  Mornings are a bit more challenging for us, he stands outside of our bedroom making a noise until he knows he’s woken one of us up, then he charges in with demands that Simon goes down stairs to make breakfast.  He does do this after 6am so we can’t complain too much but it would be a lot nicer if he didn’t do it at all on the weekend.

Emily is thriving – still a small baby but perfectly formed, she’s nine weeks old now, smiling but not for the camera.  I don’t get the time to take as many pictures of her as I did with Tom, and she’s perhaps not quite as photogenic as Tom was at the same age.  And shockingly I’ve not had the time to upload any recent photos to my computer *quickly connects the iphone to the lappy*

Getting used to having 2 children to look after has been hard but not as hard as getting used to looking after one.  We get out and about a bit, mostly short walks exploring our new neighbourhood, unpacking the house is taking a long time, either one or both of them need my attention and I’ve got the normal fight against squalor to win each day (for a given value of squalor and win)  I fear that Cbeebies has been on a lot more than I would like but I’m also pleased that Tom is beginning to show some discernment and doesn’t like either Zingzillas or Grandfather in My Pocket – that’s my lad!

I’m taking advantage of Simon taking Tom on a trip to the Tip and the shops to blog.

And they’re back with a compost bin and food.  A huge compost bin, we’re going to take a while to fill it.  I better go supervise its installment.

Emily

 

Update

I need to write a post of a decent length to cover all that has been going on, but I don’t seem to have the time.  Strange that!

So a quickish update instead.  Emily was weighed on Friday and was now only 95 grams off below her birth weight, which is excellent, she was also measured for length and head circumference.  She was 50 cm long and her head circumference was 35.6 cms.  She’s small for her age, because she’s not premature, but if she had been born just one day earlier she would have been considered as a preemie, and then she would have been above average.  If she stays small or catches up like her cousin Katy did (born at 38 weeks, in preemie clothes for a while, now threatening to be taller than me by the time she’s 12) it doesn’t matter as she’s just dandy.

Feeding is so much more rewarding and enjoyable than it was with Tom at the same stage, I’m not in pain from cracked nipples so cluster feeding isn’t an exquisite form of torture.  Also touch wood, she doesn’t seem to be developing colic.  Tom had it by now in the afternoons and evenings, it was hideous, very stressful as I couldn’t hold him for long enough to sooth him properly.

Emily is still all about the touch, she loves to be held and enjoys being swaddled.  I do find it a bit enveloping at times, especially over the last couple of days when the weather has been muggy.  I’ve found myself feeling all touched out, all I’ve wanted to do is lay on my bed and not touch anyone or anything more complicated than a duvet.  Being able to pass her over to Simon for a cuddle have been important.

We handed in notice on the house we are renting and have to be out middle of the month, we still don’t have a moving date for our new house, so we are moving in with my mum for the duration.  The children and I are going to move this weekend in order to give Simon a chance to pack the house up, move boxes to his parents etc before we have to hand over the keys.  It’s a bit of a bummer as we had strongly hoped that our house would have been ready by now, but we are fed up with living here, having my mum on tap to help with the children as I recover from the c-section and saving money on the rent were all very attractive reasons to hand in notice.

Right I better finish now as the girl child has done a “nappy” and I need to contain it!

Emily Anne

Emily Anne

Originally uploaded by Jane Goth

A week ago I had the c-section that saw little Emily join the world. Weighing in at just shy of 3 kilos or 6lb 10oz in imperial. Her birth was a fun relaxed affair compared to the gruelling marathon that I had with Tom.

She’s a joy, beautiful when she’s not doing her cross spider monkey impressions. She loves being held. She seems tiny and delicate compared to Tom at the same stage but he was 4.20 kg, and 41 weeks whereas Emily was born at 37 weeks 0days.

Her tinyness bit us though. She was a sleepy feeder from the birth and although I thought she was getting better at feeding, she lost over 10% of her birth weight by day 5. So we ended up back in hospital on Wednesday. The hospital admitted us as they needed to check that there wasn’t any underlying issues with Emily, that I was producing enough milk and to get Emily feeding enough.

Fortunately there is nothing wrong with Emily and I am producing enough milk. After 24 hours of feeding “bootcamp” Emily has put on weight and her feeding has improved.

We’re back home now, I’m on the iPad, sitting in bed resting while Emily is sleeping besides me. Bliss.

Finishing Line

I blogged a few weeks back about how I wasn’t enjoying this pregnancy, it would be remarkable if I did considering all that has happened. What I didn’t make clear was how stressful I’ve found it since we got the first diagnosis. There have been mercifully few times of extreme stress, but I’ve lived with constant low level stress for the last 23 weeks or so. It’s really getting to me now, as I get bigger, slower, more pain and discomfort as we approach the birthing hour.

I’ve only had two periods of sheer terror where I thought we were not going to have a live baby. The first one was around when we got the diagnosis of TRAP Sequence. During the second dating scan the sonographer looked at the “dead” twin to confirm her colleague’s diagnosis that it was non viable. I looked briefly at the screen, saw that it had changed from the week before, but then the shutters must have gone down in my brain.  I looked away and put it firmly out of my mind. That was a Wednesday.

Friday morning, my brain woke up, I reached for my copy of “What To Expect When You’re Expecting” and turned to the “When Things Go Horribly Wrong” section. The only thing listed that described a changing “dead” foetus was a molar pregnancy, Dr Google added the very gruesome information that a molar “foetus” would, if left unchecked, continue growing until it enveloped and snuffed out its healthy twin. There was no recommended treatment that could save the life of the baby.

I screamed.

Simon had to leave me to go to work that morning, he apparently spent most of the morning looking for alternative diagnosis. He also contacted the obs & gyne clinic asking for someone to tell us what was wrong. He got one of the lead midwives, she told him that she had just been on the verge of ringing me; the sonographer recognised the dead baby as an acardiac twin and elevated my case to the consultant who had to review the ultrasounds herself. The midwife told Simon that they strongly believed that the “dead” twin was acardiac (no heart, no head) she also told him that it was treatable and the healthy baby had a chance. Si immediately rang me to pass on the news. “Good” news in fact as there was hope. That Friday morning, the time between reading about molar pregnancy to Si and the midwife ringing me to tell me there was a chance:  that was my lowest point.

The second time I thought we had lost the baby, was this Wednesday at my routine midwife appointment. She felt for the baby, then started to listen for a heartbeat and could not find one.  I don’t know how long it took her to locate it, but it felt like a lifetime to me. I tried to reassure myself that I had felt the baby move not just an hour ago but it didn’t work. When Jackie told me that she had got a heartbeat I broke down and cried and cried and cried. Which set Tom off so I had to try pull myself together for his sake. That was my other lowest point.

I can’t deal with this stress anymore, it’s a weight crushing me, I worry every time I realise the baby hasn’t moved for five minutes, I worry if the movement seems sluggish or too energetic. I told Jackie all this, she said enough is enough you need a date.

Jackie got in touch with the obs & gyne clinic and I got a call from my consultant yesterday. She was very sympathetic, offered to admit me until the birth if it would help reassure me and keep me rested. I declined as it’s not fair on Tom and I got hangar rash last time I was admitted. If I wanted I could have had a scan today for reassurance. She also told me that I could go to the day assessment unit anytime they were open if I was the slightest bit worried.

Most importantly she got how grim I was feeling. I don’t know what Jackie said but she must have got across the state I was in far better than I’ve managed to in the past. Maybe that’s because when I’ve seen my consultant we’ve all focused on the baby and how she’s doing, at my midwife appointments the focus is more on me and my well being. The result of all this is that my consultant said I could have the baby whenever I wanted, I’d been through a lot of stress with this pregnancy and I didn’t need anymore.

And, you know what, I immediately started to feel better. We discussed timings, I think we’re looking at either the Monday or Tuesday after I turn 37 weeks so Baby’s birthday will probably be the 22nd or the 23rd. Of course medical reasons may intervene and she might arrive before then, but at last we’ve got an end date.

Edited 12 August for sense and grammar.

Thirty Five Weeks

I had my weekly scan this morning. The baby is doing well she’s active and the dopplers are good but the amniotic fluid levels are only so so. The AFI has been yo-yoing over the last few weeks and today it’s back to being borderline. I don’t have to see her until next Monday as all the other measurements were good.

I caught Tom’s cold over the weekend and not shaken it off yet, the obs and gyne clinic is at one of the far ends of the hospital, I now find walking up from the car park to the clinic is exhausting. I was not at my best when I saw the consultant, which is probably why she ordered me to rest this week. So Tom is now at his Nana’s and I’m tucked up in bed with the iPad.

As I’ve got rest I’ll leave it there.

33 Weeks

The reason I didn’t post last week was that all was going swimmingly well, both for baby and me.  That was until Wednesday, when I woke up with a very sore right foot,  it wasn’t swollen or bruised but it hurt a lot when I put it on the ground.  Fortunately I was able to get a very quick appointment with my GP after my midwife appointment that afternoon, nothing broken just some soft tissue damage, but it was agony.

Wednesday night I started to feel most unwell with stomach cramps, and eventually a most unhappy bottom.  Thursday was spent recovering from a miserable night, Simon who had had the bug earlier in the week, tenderly took the day off to care for Tom and I.  By Friday evening I was finally feeling better when I discovered I had ever so slightly pink wee.  I immediately ruled out cystitis and remembered that it was the pink wee that finally made me realise that my waters had broken when I was pregnant with Tom.  Not that I thought my waters had gone, but a quick call the to delivery suite was probably in order.

They called me in.  Confident that it was just something that needed to be checked out rather than worried about, I set off to the hospital alone, leaving Simon to do an quick tidy up in case it was more serious and my mother in law had to come over to baby sit Tom.  I arrived at about 9:30ish in the evening, given a bed to rest on in the small recovery ward and a cup of coffee, while the midwives and nurses bustled around with quiet determination.  Even though it was a busy night, I was checked, monitored, sampled, examined, given a reason for the blood (“sensitive” cervix) and sent on my way again within 2 and half hours.

This morning I had my regular U/S scan.  Baby is doing well, good dopplers and she’s got yet bigger.  After having a smaller than average head circumference a few weeks back, she’s now packing away the brain cells. The first reading my consultant did showed a circumference measurement expected on a 37 weeker! So she checked the measurements again,  looking carefully at what brain structure could been seen on the ultrasound.  Happily baby’s brain looks normal, and the redone measurements while still over the 5oth are more reasonable. Baby’s leg and abdominal circumference are big too which also makes the head measurements not look so abnormal.

The AFI however isn’t good, from a nice measurement of 10.5cm last Monday it has dropped down to 6.6cm which now places me firmly in the borderline category.  The baby did have a full bladder and stomach so there’s a bit more amniotic fluid to be had once she’d done a wee.  However the levels keep fluctuating and each time they dip, they dip lower.  Because of this I’ve been “promoted” to the the twice weekly ultrasound club.  My next scan is on Thursday with a sonographer, hopefully the levels will have gone up again, if not they’ll call my consultant in and we’ll take it from there.

I’m not worried, even if the baby has to be delivered this Friday, she’s big, she’s healthy and she’ll be 34 weeks then, so the risk of adverse effects from prematurity are so much lower than they were even a week or so ago. Of course 35 weeks is better than 34, and we are aiming for 37 weeks, but whatever happens now, I’m pretty confident she’s going to be ok.

Edited 26 July for sense and grammar.

2 Year Check

Now that Tom is out of warranty, he gets a final check up before being signed out of the Health Visitors’ books. He had that check up today with one of the nursery nurses. The nursery nurses that work in the team are really good, they know their stuff. She checked Tom’s hand eye co-ordination then gross and fine motor skills. Then it was on to the all important language skills. She put out a few objects on the floor and asked Tom to pass them to her. He did ok on those except for the ball and cup which he was very engrossed in and when he did eventually respond to her request for the cup, he gave her the ball. She tested his language skills asking what things were called, he was ok with most things except the cup again, she asked “what’s this?” silence from Tom, finally she said “cup” he replied “ball”

We’ve been worried about Tom’s speech for a wee while, a few weeks before his birthday he only had about 20 words and then we were interpreting the different intonations he gave to “baa” to mean about 4 of those words. Then about 2 weeks before his second birthday he had a speech explosion, he learnt new words everyday, he now tries to repeat a word after we’ve said it, instead of staying mute as he did before. His pronunciation is becoming clearer with every day. Although he is still mostly talking scribble, there are hints of English in there, he does seem to think that we should be able to talk scribble too, but he’s out of luck there.

He doesn’t form sentences though apart from “bye-bye x” including the lovely “bye-bye wee wee” when the loo is flushed. If he doesn’t have a prop he won’t ask for something. So unless he’s got a book in his hands to show me, he won’t ask me to read to him, same for drink and food, he needs to show me the cup or the bowl.

Sally, the nursery nurse said she was going to refer him to the Speech and Language therapist to look into the delay. She said it would take between 6 to 12 weeks to be seen and we might find that in that time he catches up verbally. She did ask about his hearing, I think that there’s nothing wrong with it apart from tendency towards selective deafness when we ask him to do something he doesn’t want to. She doesn’t think he’s autistic, nor do we.

She gave me some hints to help him along with his language, be very verbal when playing with him, keep the language simple, over emphasis can help. Songs and nursery rhymes are good – which I knew but I’ve forgotten so many of the tunes.

She said that he was a “bright, energetic boy” and seemed pleased with him, even with the speech delay. I think the big sloppy kiss he gave her may have helped.

31 weeks

I had my latest scan today but not done by my consultant as she’s on holiday.  One of the hospital’s sonographers whisked me away to the blessedly air conditioned examination rooms.  Healthy baby is healthy, she’s turned during the week so is now head down, I think she must have done so yesterday as I could feel her moving about, in an alien about to burst out of my belly sort of way.  The doppers were good, nice shape and boringly average for this stage of gestation.  As the sonographer said, we like boringly average.  The AFI* though was down, last week it was about 11cm today it was approximately 8cm.  Still within limits, just, for 31 weeks gestation but the sonographer was not unduly worried as the baby has enough fluid to kick her heels in and had a full bladder, once she has done a wee the levels should perk up a bit.  Yep amniotic fluid is basically baby wee with added skin cells and discarded hair and the baby drinks it – no wonder Tom prefers the taste of water once he’s had a chance to “bathe” in it.

The sonographer wasn’t worried, so I shouldn’t be, even if the levels drop down lower next week, they may not take action as I don’t seem to be leaking fluid, therefore no tear in the membranes so we’re at a low risk of infection, and the baby isn’t showing distress.  However I’m glad that I had decided to pack up a bag of baby stuff.  No preemie nappies or clothes as I’m reluctant to spend money on stuff we hopefully won’t need, but I’ve collected up a bright toy for her to look at, a crocheted cotton blanket, baby bath towel and the smallest newborn clothes I could find, some stuff Tom never wore as he never fitted into them.

So how has the last week gone? As I’m getting bigger, the more I’m feeling this pregnancy.  Heartburn is my almost constant companion, Gaviscon is my closest bosom pal.  I’ve got a mild touch of SPD which makes walking and turning over in bed painful.  I seem to be affected by the humidity more than I am by the heat.  Last night according to the Weather Pro app the humidity levels were up in the 90s yet it wasn’t that hot, only 15C, Simon was happily comfortable but I felt like I was in a Turkish Bathing House.  Today it’s pleasantly warm, 21C feeling like 23C but as the humidity level is a more civilised 55% I’m far more comfortable.  The swelling of feet and ankles is getting more pronounced, but that’s just part of pregnancy for me.  My boobs haven’t really changed this time, well as far as I can tell, they didn’t suddenly get bigger when I got pregnant and they quickly conceded the fight to be the first thing in the room to my belly.  I have a feeling that they’ll turn into comedy balloons after the baby is born, might be worth holding off getting nursing bras until the last minute I think.

The hormones seemed to have found the tear ducts.  Until a few days ago, I was quietly pleased that I could read sad news items and watch cynically manipulative TV ads without howling my eyes out, not any longer, the other day the flood gates opened.  Since then I’ve stayed away from items about kittens, babies or brave doggies trekking across Africa to find their masters.

I find it very hard not to worry about the pregnancy.  From Thursday to Saturday evening the baby was very quiet, even though I could count 10 kicks within one hour, I worried.  They were feeble kicks, why was that Braxton Hicks really painful, what if it wasn’t a BH but a real contraction.  Even when everything seems to be going well there is a low grade constant worry, grumbling away.

I haven’t enjoyed this pregnancy, I’m not excited by it either, the worry has been too great.  I’m torn between wanting the baby here now, even as a preemie.  Because at least that way she’ll be in the caring hands of the NICU with dependable machines to help take care of her rather than relying on a placenta that may start failing at any moment.  The more rational part of me thinks no, right now she’s best off where she is, the placenta isn’t failing at the moment, she’s growing well, the longer she stays in the womb the better her long term chances are.  The faff of trying to be with a preemie in NICU, caring for toddler at home, recovering from a C-section, while in the throws of moving house in late August would be horrific.  Far better to be still pregnant and able to do more stuff, even if it’s limited to packing the occasional box and entertaining Tom with books.

The end of this nightmare feels in sight.  We’ve got a roughly 5 more weeks of this at the most.  If all is well at the 33 week scan, we will ask about setting a date for the c-section around the start of week 37, roughly 19th August.

*AFI – Amniotic Fluid Index – the amount of amniotic fluid around a foetus.  Not a precise measurement but calculated by measuring the depth of 4 pools of fluid around the baby.  The pools have to be clear of arms, toes, umbilical cord.  The result is given as a depth in cm rather than as a volume (cm cubed), calculating the volume could well be an assumption too far.  The absolute limits are between 5cm and 25cm but  there are relative limits which relate to the gestational age.

30 Weeks

Another good scan, the baby is doing well, she’s growing apace, the dopplers are good and so is the amount of amniotic fluid. If we carry on like this we are good for 36 weeks, possibly to 37 weeks. I’m in a lot better state too, I’m tired and achy but no longer shattered.

However there are two main things that could stop us getting to 36/37 weeks.

I’ve had a procedure that involves puncturing the amniotic sac I’m at a higher risk of my waters breaking early than for a normal singleton pregnancy.

Of course this isn’t a normal singleton pregnancy – it started out as being a twin pregnancy with one placenta, a placenta that was wired up wrong causing the malformation of the acardiac twin. The placenta has already had a “wobble” four weeks back, we are very fortunate that the baby hasn’t suffered, she isn’t small for dates or show any other stresses from placental insufficiency. We are also very fortunate that the placenta started performing its part again. But because it wobbled once, the chances of it doing it again are far higher than in a normal pregnancy even for a woman of my age.

The frustrating thing is we can’t put a figure to those increased risks, the consultant is very loathe to even try, partly because she doesn’t want us going away with a false sense of security and partly because the factors and events of my pregnancy are if not unique, pretty darn rare. That rareness means the medical literature almost stops being scientific data and starts to be scientific stories. I read in one abstract about TRAP Sequence that since it had been first described in the 17th century there had only been about 400 recorded cases, that not a lot to be going on with.

Even though the risks are higher than for a normal pregnancy it is not a racing certainty that the baby will be born preterm, it’s probably not even likely that she will be, but being prepared for it makes sense.  I have my hospital bag packed, it’s sat waiting by my side of the bed.  I’ve tried to research what might happen if the baby was born prematurely, but as it is so common the information Dr Google gives is somewhat garbled, repetitive, and loaded with anecdotes from mothers who have had preemie babies in the past and are now trying to reassure those who are going through the same thing.  Worthy and comforting but not really useful.

I asked my consultant to run through what would happen if the baby was born today, at 32 weeks, at 34 weeks and at 36 weeks, she and the midwife on the unit did one better they got me a visit to the NICU.

The babies were tiny, the atmosphere was calmer and more cheerful than I had imagined based on what I’ve seen on TV, and far more hopeful too. If the baby is born tomorrow, if she is pink, wriggly and making all the right noises, I would get a chance to hold her almost straight after birth before she’s transferred to the NICU.  Assuming that she didn’t need surgery, she would stay in the QEH NICU until term, getting out early would be a bonus. Surgery would mean transferring to a different hospital.  At first she would be in an incubator with various tubes going in and out as she would have difficulties with breathing, eating and maintaining her body temperature.  Survival rates are roughly 95%.

If she was born at 32 weeks exactly the same things would happen except they would expect her issues to be reduced and survival rates are even better.

At 34 weeks her weight comes into play, if she weighs more than 1.8 kilos at birth, she may not spend that much time if any in an incubator, she may go straight into a cot in the NICU – it does depend on her health of course.  If she’s a heavy 34 weeker she is far more likely to come home early, probably not with me but hopefully before her due date.  Survival rates are pretty much the same as for term babies.

At 35 weeks she’s very likely to be over 1.8 kilos, if she’s healthy at birth, there’s a very good chance that she would join me on the delivery ward after birth, only going over to the NICU for checks and tests.  Theres also a very good chance that she would come home with me.  At 36 weeks those odds are even greater and at 37 weeks she would have to be poorly for the NICU to see her.

Warning – these are typical timescales – our baby may not be typical, and for anyone landing on this page researching what happens with preterm babies these timescales are only good for the Queen Elizabeth Hospital, King’s Lynn and in this year.  Check with your hospital to see find out how they manage preemies it may well be different.

It doesn’t work for everyone, but I feel a lot more in control, (no matter how illusory it may be), now I know what the typical scenarios are for a preemie baby.  I don’t feel as scared of the NICU as I did before I went in, I was worried I would see the tiny tiny babies and burst into tears – I didn’t, I did have a wee cry but that was over something different.  And finally having seen the staff and the parents tending to the parents I have a good feeling we’d be in good hands.

Rest And Observation

I was supposed to go home Monday after a weekend of resting and being observed, however I ruined my chances of that when I had the chest pain again every early on Monday morning.  Having been told off for ignoring it, I was a good girl and reported it to the midwife on duty.  One ECG later a tired looking doctor came into my room and told me that it was, judging by the description skeletal-muscular in origin rather than a heart attack, palpitations or a pulmonary embolism.  However if I had any more I was to press the buzzer by my bed to report it (I walked down to the nurses’ station with the first one)  Monday morning while waiting to see when I was going to have an Ultrasound scan so that I could go home, I got the pains again.  Cue another ECG and tired looking doctor  in scrubs talking me through the results and the next steps, though as his speciality was gyne he would have to get one of his “medical” colleagues to confirm this with me.

The next steps were a chest x-ray and ultrasound of my legs to check for blood clots, if there were none there it was highly unlikely that I had a “PE” to rule out a heart attack they would have to wait about 12 hours to take a blood sample which would show if I had one.  That 12 hour wait put the kibosh on me going home on Monday.

Having one’s legs ultrasounded is icky, warm gel squirted over the length from ankle to groin, it felt spectacularly wrong and no doubt looked it.

The bloods were taken by an incredible efficient Russian doctor who had the needle in my left arm almost before I had the chance to point out I was left handed and could the blood be taken from the right arm please.

The results of the tests trickled back over the next few hours – no sign of clots so the risk of it being an embolish are very small and the blood test was negative.

This morning I was packed ready to go at 8:15, I didn’t get discharged until 18:45,  We complicated cases have our individual consultants who are the primary contacts for our care.  Our consultants are busy being on call/in theatre/clinics/consulting with colleagues/having cups of coffee and a bit of a breather before the next thing so despite chasing and nagging by the lead midwife on the ward, we poor inpatients are not necessarily the highest priority especially if its just a case of OKing our discharge.  It’s not an idea situation at all, but to put a spin on it, even though I was bored out of my tiny skull I did manage to get more rest.

But it’s so nice to be home, put Tom to bed, a happy smiley, tired and kissy Tom too.  And to be able to sit on the sofa and give my husband a proper cuddle.