24 Weeks 0 Days: Overwhelmed

The appointment letters are all starting to roll in this week. Plastics, surgery, paediatrics, speech, hearing, high risk obstetrics, lactation...how am I meant to keep up with all of these? Not to mention I still haven't managed to call the Cleftpals about feeding help. There are so many questions to ask, and I'm keeping a list as I think of them, but who do I ask what? And how do I remember everything? On top of all of these appointments for Coco, pretty soon there will be a new set for Sophie with ENT and paediatrics as well. It's too much. I'm not sure how anyone manages this sort of thing.

23 Weeks 6 Days: What a Week!

I've barely had time to think about being pregnant this week. Wednesday morning Sophie seemed to be getting over her throat infection, but by Thursday we were rushing her out to the hospital. She had a massive temperature and she hadn't drank anything since lunch time Wednesday. We were admitted to paeds and they started pumping her with fluids and high strength antibiotics to try and get her throat open enough for her to be able to drink by herself.

If you've ever boarded in the hospital with a child, you probably know how uncomfortable those fold out beds that they give you are. I figured with my hip and my pregnant back that if I lay on one of those I'd probably never be able to get up, So I spent the night alternating between sleeping in the chair and laying in bed with Sophie.

During Thursday night her temperature spiked to 40 degrees, and they couldn't get it below 39. When the paediatrician came in Friday morning he said they could see she had tonsillitis, but there was something else causing her temperature spikes, the problem was that none of there tests were showing anything. He ordered a chest xray in case they were missing anything there.

Friday afternoon her cannula stopped working, and I had to hold her down while they first tried to flush it through and get it going again, and then when they gave up and tried to get a new one in the other side. After half an hour of her screaming and me being close to tears they gave up, and put her on oral antibiotics. She was drinking small amounts by then so they decided it would be safe enough to see how she went without the IV.

Friday night was her worst. Her temperature stayed over 40 degrees for the whole night and she developed an angry red rash from the antibiotics. It's no surprise, she's been on antibiotics since last Monday, and the dose they were giving her was almost 3 times what she usually takes. Friday night was when I started to worry that something was really wrong. Its horrible not being able to help her when she's so sick. She wanted me to cuddle her but I couldn't because we were trying to cool her down, the best I could do was sit there and wipe her down with a cool,wet cloth.

Drew spent the night with us on Friday, so neither of us got much sleep, but it was good to have someone there to keep me calm and stop me from worrying. I'd tried to tell him to go home because he had work on Saturday and he needed to get some rest, but he loves his little girl so much and he wasn't going to leave her no matter what. He is an amazing dad. Another night sleeping in a chair had my hip screaming though.

On Saturday she was obviously very sick of being sick, and sick of having people poking and prodding at her.When she saw the paediatrician coming in she hid under the blankets and refused to come out until he left, and then she spent most of the rest of the day hiding under there as well. Mum and dad kicked me out of the hospital Saturday afternoon, mum stayed with Soph and I went with dad to get a coffee. It was good to get out of the place but I was still thinking about my baby girl the whole time.

The lack of sleep and the lack of laying down was taking a toll on me by Saturday, and I could feel my hands, feet and legs starting to swell up. I figured that as we were on the same ward as maternity I better get checked out, so I asked our nurse if she could check my blood pressure. It wasn't exactly high, but seeing as how it's been low for the whole pregnancy it was higher than that, so I was told to get my feet up and she would keep an eye on me. After I went out with dad though it was a lot better.

Her temperature stayed below 38 degrees Saturday, and she had her best night by far. She slept through the night, and because her temperature was stable the nurses didn't have to come in and disturb her every hour, they just left her alone. I gave in and slept in the fold out bed for the sake of my blood pressure.

When she finally woke on Sunday she looked a lot brighter than she'd looked the whole time. We were finally discharged, with another course of the high strength antibiotics to take home, and instructions to get a referral for an ENT to have her tonsils and adenoids removed. The doctors weren't able to work out what had caused her temperature spikes in the end, so yet again Sophie is our little medical mystery.

I'm just glad to have her home and on the mend. She still gets very tired very quickly, and she's quite cranky, but she's coming back to our beautiful little girl again slowly.

That's one way to pass a week of the pregnancy anyway, although I'd like to not have anymore like that thanks!

22 Weeks 6 Days: Sick again

Sophie has done a lovely job of sharing and passed on her germs to mummy. I have a hideous throat infection and its making my ears and and head ache as well as making swallowing near impossible. But rather than tough it out like I normally would I figured I better go get checked out for the baby's sake. Doctor Naiker put me on antibiotics and "rest". It always makes me laugh when he tells me to rest - he's seen how much energy Sophie has even when she's sick!

No appointments this week so hoping for a nice cruisy week to just enjoy being pregnant instead of having crap chucked at me. Probably jinxed that now....

22 weeks 4 days: back to the nursery

I finally found the courage to get back in the nursery and do some more work. Its stupid to think that just by sticking some silly stickers on the wall I made all of this happen. I need to just get on with it and do what needs to be done. So I built the cot and set it up. And aside from the missing mobile, it looks pretty good. Bub will be out of the bassinet and into the cot in no time.

22 Weeks 1 Day: No Amnio for us

I had a terrible night last night. I kept waking up feeling all tense and scared. I gave in at about 5am and got up. Even as we were in the car on our way to Burnie I still wasn't really decided on what I was going to do. Drew kept saying he was happy with what ever I decided so he was no help at all! I warned him though that he had to leave his sad eyes at home because I couldn't deal with holding myself together as well as him!

Doctor Hingston took one look at me and knew that I wasn't happy with doing the test. She explained the results of the scan again to us and said that because of the type of cleft there is a 50% chance that there are other defects present. She then said that because nothing else can be seen on the scan other than the cleft then our risk factor drops down to less than 15%. We were given a 52% chance of the 3 trisomy's with sophie based on her scans, so I'm happy enough to believe that nothing else is lurking around the corner for us.She did reiterate that it looks like one of the worst clefts that they have seen in a while and we will have a lot to deal with, but that we will be in very good hands.

In terms of what I was told yesterday about not being able to deliver at our hospital, I think the lady I spoke with probably didn't have all of the information at the time and was be overly cautious. But that's fine, I'd rather they start off over cautious than not cautious at all which is what I would have expected at our last hospital. Actually its pretty much exactly what we got at our last hospital with sophie considering they waiting so long to tell us there was a problem!

In the end she said she was pleased that we were so certain that the result wouldn't change our minds because it makes it easier for her to help us decide what to do. She said ultimately its about what we could live with easier - losing the baby now from a complication of the amnio or delivering a baby that has little chance of survival. And I know it might sound strange to some people, but losing the baby now would kill me more. I lost enough children I never got to meet for one lifetime.

My antenatal care does change without the amnio to confirm that everything is ok. They need to keep a closer eye on things, so I'm being transferred to Dr Hingston's high risk clinic and I'll be saying goodbye to Dr Jensen. I can't say enough how good he has been to us through the early stages, and I'll be a little sad to move on!

The plan is now that we have regular scans to check that she is growing properly, and unless her growth slows there is no reason to expect a problem. Dr Hingston is off to Fiji for a month (lucky thing!) so she had me meet her replacement today who I will see in 2 weeks time, and in the mean time they are organising for the surgeon and paediatrician to contact us, as well as the local cleftpals coordinator. We will have appointments coming out of our ears for the next 16 weeks so time is going to fly by so quickly.

I see my midwife in 3 weeks, and I'm going to just make sure that when we deliver the staff will be aware that we will have feeding complications and that they'll be prepared, and not trying to push the "breast is best" party line on me as I've heard that some midwifes still wrongly believe that cleft Babies can be breastfed and that sort of pressure will be the last thing I need.

I'm also going to sit down and make a big list of questions I need to ask everyone, and things I need to read up on like feeding with an NG tube, and financial assistance and all of that. Lots and lots of research coming my way, I'll be a cleft palate expert in no time!

So that's where we are at today. Who knows what tomorrow has in store....

22 Weeks 0 Days: Roller coasters

Just as we start to come to terms with one thing, another comes up and knocks us off our feet again. It's like riding a really stupid roller coaster and not being allowed to get off. Well here's the thing: I want off now!

There's a lot to share today, and I want to do it in a way that people can understand, so this is a long post I'm afraid. Bear with me, hopefully by the end you'll have a better idea of what's going on, even if I'm still trying to work it out myself.

We went to Hobart yesterday for the tertiary scan. And again a small part of me expected them to tell us they'd got it all wrong. Why do I keep doing that?! It never works out that way does it? I have to say though that I wish we had a facility like that up here, the staff were all so friendly and welcoming, and both the sonographer and radiologist talked to us the entire time and explained everything they were seeing.

Before we get into the bad stuff, let me tell you something good. We are having another little girl. The sonographer wasn't certain, but the radiologist was able to say straight away when she looked. So Sophie is going to have a little sister.

The sonographer took a lot of pictures and explained that she could definitely say there is a cleft. But it's worse than we expected. Coco has a bilateral cleft lip extending into both palates. If you run your tongue over the roof of your mouth, that's your palate. The hard palate is the bit thats hard (duh!) and the soft palate is that bit at the back where it's all squishy. So our baby's cleft goes right through the lips and back into that soft bit. Here is a picture I found on google that shows what the lips might look like:

 

 

Because the cleft in the palate goes so far back, there is a very high chance that she won't be able to feed without help. Even the special bottles might not be enough, and chances are she will need to spend some time in the special care nursery being tube fed while we try to figure that out. I may even have to come home without her, which terrifies me.

 

The radiologist broke some even scary news than all of that though. It seems that with the bilateral cleft like the baby has, rather than the unilateral cleft that Drew had, there is a much higher chance of it being caused by other chromosomal abnormalities such as trisomy 13 and trisomy 18. The radiologist mentioned that we might want to do an amniocentesis to find out, but I brushed it off at the time, mainly because both Drew and I were chromosonally tested earlier in the ear and both came up clear. I figured that that meant we were in the clear now.

 

This morning though we got a phone call from an obstetrician that works with Doctor Hingston. As it turns out Doctor Hingston is the only OB on the north west coast that is able to preform amniocentesis, and as chance would have it, she is going on holiday after tomorrow. So I need to make a decision between now and 9am tomorrow morning about what I'm going to do.

 

I said originally that I wouldn't do it unless it changes our pregnancy and birth care. We turned it down with Sophie when they expected problems at 32 weeks. But the lady I spoke to today thinks that we need to know in order to organise for the rest of the pregnancy care in the high risk clinic, and to arrange for the birth. So I don't really seem to have much choice.

 

I'm really scared of the amnio. There's a 1 in 300 chance of going into early labour once you have the procedure done, and we all know how me and statistics like that don't get along too well. I asked about Doctor Hingston's success rate, and the lady I spoke to reassured me that she has never had a single complication in the entire time she's been doing them. So that's something.

 

I haven't completely decided to go ahead with it. I've agreed to meet with Doctor Hingston in the morning, and I can ask her as many questions as I like before I decide. I just don't know how I'm meant to decide that's all.

 

I feel completely overwhelmed by everything. To be honest, I really don't know how much more I can take. And how much should I be expected to take anyway. Surely enough is enough already?



21 Weeks 5 Days: Gulp.

The big scan is tomorrow. We'll hopefully get to find out just how bad this cleft is, and then maybe I can start to work out a real plan. I've been trying to organise and prepare myself, but its hard when I don't know how bad it will be. The feeding is the part that's worrying me the most. I watched Sophie get so sic because she wouldn't suck, I don't want to have to see another baby go through that.

I think it's mainly the thought of the baby needing to be taken away to the special care nursery. They wanted to take Sophie but I refused to have her away from me. I made them bring the heat bed in to my room so I could see her and touch her still. And then if we're in special care there's no way we'll be going home after a couple of days, which is going to make the adjustment so much harder for Sophie too.

I'm off to Doctor Naiker today. I'm supposed to have my mental health review that I've been putting off for weeks. But I know that if I tell him everything that's been going on and how I've been struggling he'll want to put me back on the meds straight away. And I just feel so much more like a failure having to take them.

Sophie needs a good check up too. Pretty sure she has a chest infection, a throat infection and a couple of ear infections. And I have to be a terrible mother and leave her at nanny's tonight because we'll have to leave at 5am tomorrow. I hate leaving her when she's sick.

21 Weeks 1 Day: Finances

On top of not knowing if I'm strong enough to deal with the emotional strain that's in store for us, I have to say I'm seriously worried about the finances.

Drew doesn't get sick pay or holidays. He's already working 6 days a week to keep us afloat, and I can't go back to work because of Sophie. When coco arrives we will be even more dependant on his income, with the extra nappies and formula and all those other things that pop up thanks to a newborn.

But because I don't drive he will have to take time of work for each doctor's visit, each surgical appointment, each treatment. Some of those will mean we have to travel to Hobart, and even though PTASS think its easy enough to do in a day, it's really not. So we'll be staying overnight and he'll be missing at least two days of work at a time.

How are we going to manage that? The best I can come up with is we start putting some money aside each week now, but I doubt that's going to add up to much. We have a very long road ahead of us.

21 Weeks 0 Days: Special Bottles?!

The bottles we will need for coco are $47 EACH. And here I was planning to ditch our "expensive" Avent bottles we used with Sophie and get the kmart cheapies. I wanted to have at least enough bottles to get through the day without needing to steralise any. That's going to cost hundreds of dollars.

Maybe we should ask for bottles instead of baby shower gifts?

20 Weeks6 Days: A quick share

I want to share something that I stole from the Cleftpals Victoria website. I thought it might help to explain to those that can't understand why we are so upset about this problem that can "easily be fixed with surgery". It is taken from a speech given by Rosie Giddings at the Anual Scientific Meeting of the Aus Tetrology Society:

 

When a couple are expecting their child they may have an intellectual understanding that they stand a 2% chance

of having a child with a birth defect but emotionally they usually cannot accept this could happen to them. If they

are one of the 2% it is often very difficult for them to accept emotionally that their child isn't perfect.

Parents need their own time to grieve the loss of their perfect child. For some parents this may take only a few

minutes, whilst for others it may take years. Parents need understanding and support to come to terms with their

grief. Parents who have dealt with these emotions are usually better able to cope with the problem themselves

and thus support, care for and love their child.

So, while we appreciate that those people are saying that to try and help, its important to understand that we ARE hurting in this. Over all though, the support is amazing and I can't quite beleive it. So thank you to every one who is standing by our side :)

20 Weeks 5 Days: Confirmation

A part of me really thought that we'd see the specialist today and she'd tell us there was a mistake and everything is fine. But it didn't work out like that. Kind of the opposite really.

She did a scan, and straight away said that yes she can see a cleft in the hard palette, and most likely in the soft palette as well. She thinks the lip is probably affected but couldn't get a look at it. So we are looking at a pretty nasty case but wont know more until next week.

She referred us to a special ultrasound clinic in Hobart that specialises in OB/GYN. We have to go down Tuesday morning. So once we have that scan done we will be able to see what we are dealing with and come up with a plan for when to do the first surgery.

Dr Hingston also said that they will need to look at other markers as well, because there is a chance that it could be an indicator of a genetic condition, but not to panic because there is also a chance that it's just because Drew was born with it.

There is 5-10% chance of if being inherited from a parent or sibling. 5-10%. What is it with me an percentages? There is a 1% chance of a subchorionic hemorrhage, and I've had 3. There is a less than 1% chance of a 2 vessel cord. 1 in four pregnancies end in miscarriage, I've lost 2 from 4. I have some sort of statistical disability I think. But then when you look at the other side: we were told there was a 3% chance of falling pregnancy naturally, and we've done it the last 2 times. Sophie had a 52% chance of being really sick, and she's fine. So maybe I'm not completely unlucky.

I think I should probably be freaking out right now, but I'm actually really calm. It's nothing like Friday when we found out. Now I'm just preparing to find out as much as I can and get ready for this thing that I can't do anything about. We are going to have such a long road ahead of us, with a lot of really painful surgeries for bub and a lot of time off work for Drew and time away from home for all of us, but we will get through it.

I'm hoping to find someone in Drew's family who can tell me more about his surgeries. It's hard not knowing what to expect. And I'll call cleftpals and see what sort of support they can give too. We'll get through it... eventually.