Saturday, December 16, 2006

Daily update: NICU Day Two

Its amazing how much goes on in the NICU - every little thing is counted and measured. Wren's 'care' routine is 4 hourly so every four hours they change diaper, weigh wet diapers, record blood saturations, take blood pressures at four extremities, temperature etc etc.

Wren HATES this.

His first objection is that he gets unbundled from his warm blankets. He also hates having any of the tubes and tapes fiddled with and the blood pressures using a plastic cuff are the worst. When the nurse does the procedure alone he cries the whole time but if Josh or I are there we can help soothe him and its much easier so we try and be there for care (aka torture) as regularly as possible.

Today we waited till 3pm to hear from the cardiologists. As it happens the big cardiology conference with Children's was cancelled due to the storm aftermath. One surgeon was trapped at home by fallen trees and the hospital was on backup power. Dr K has made copies of the tapes and had them sent to the surgeon and Dr L at Children's. They may get back to us on the weekend but otherwise Dr K will present the case at Children's on Monday. Apparently the process requires teh surgeons to accept him as a surgical case, get him on the schedule and then he can be transferred by the Children's team who will come to the NICU to take him over.

Children's is close to our home and the trip to the Swedish NICU is taking an hour since the storm so we are keen that he is moved but still very happy with how he is being cared for in the NICU now.

NICU News:
1) Wren lost 70g yesterday which is normal. His diet of sugar water has ended and he is now on a combination of fats, protein and sugar delivered through IV - nil by mouth until after surgery.

2) He has very sensitive skin and is getting red marks and blotches where tapes are left on to hold tubes in place. They are trying to avoid latex in case he has a latex allergy.

3) Blood gases are good (7.44, 7.39)

4) Blood sats in his upper body are almost 100% but lower extremities are 10% lower (88-94%). His legs are a little cold but still pink and he's still very active.

5) He had an x-ray to check on the central line positioning. It was okay but had a kink at the entry point which was occluding the prostglandin delivery. They have taped his hand to a soft board which is clipped to a blanket to improve positioning. He doesn't like this - he wants his hand by his face.

Meanwhile, I had a very good day visiting. I spent a number of hours in the NICU and got to help with 3 care routines. I took his temperature, changed diapers, soothed him and held him for 45 minutes after each session, only putting him down when he was asleep. His swelling (odema?) has subsided and he opened his eyes a lot - staring at me with dark blue-grey-brown pupils. He is very very beautiful and smells delicious:)

Josh came in for the 5pm session and between the three of us he had the best (most stable and normal) blood pressure readings. Normally they get higher and take longer as he yells himself into a frenzy. Josh held him for a while afterwards and then I was discharged.

We are going to head in for the morning session with Mum and Josh may visit overnight to check on him.

Thanks for all the support and good wishes and thanksf or checking in on us. I will post new pictures tomorrow morning.

Friday, December 15, 2006

Hospital power outages

Announcement: Due to power outages some IM critical systems may not be functioning properly. Please supervise system outputs."

Totally super long birth story

Around 5am I woke with mild cramping contractions. They felt hard and a bit painful but nothing that kept me awake. After that I dozed through the early morning till about 7.30am when the contractions were uncomfortable but not painful. When I went to the bathroom I had a bloody show and just felt a lot more pressure with the contractions so I had a feeling this was it. Frost was getting ready for school so I told him and Mum that I had exciting news that Baby Wren was coming out today or tomorrow!

Mum and I immediately realized we were not ready so after Frost went off with the carpool we made a long list of things to do and buy and headed off shopping for a few hours. First, I woke Joshua and told him not to go to work until he had checked in with me because I thought I was in labor. I also called our doula, Sarah, to give her the heads up because she has two little girls who might need childcare. She suggested I time the contractions but get on about my day as it sounded as if I was in very early labor. Then I scheduled the electrical inspector to come and do our final inspection that afternoon. I was feeling the same discomfit and decided Mum should drive but other than being unable to do anything during contractions I was very happy and keen to get out.

We did a HUGE shop at Safeway - over $200 - driven by this sense that it might be weeks before I had the ability to stock up on anything. I think this was a labor induced fantasy but it was fun. I even bought an extra case of Java-logs but asked Mum to carry and pack as I was feeling a bit physically distracted by the contractions which were about 8 minutes apart.

After our trip to Safeway we still had a few items on the list so we headed off to Whole Foods and had another pile of tasty treats in the cart when I decided we really should head home rather than having coffee there so I grabbed a raisin scone and we headed off home in the rain.

I should mention that it was a very very stormy day. There were gale force winds and horizontal rain. Trees were falling over power lines, half the traffic lights in our area were out and the lights in the house kept flickering. Outside, through the wind and grey skies we saw flashes of orange where a power line was grounding out. It had a Wuthering Heights feel to it and I think that helped add to this urge to stock up on provisions for the long winter!

We returned home around 11.15 and had some tea. Josh was up and we discussed what to do because while the contractions were uncomfortable and made me feel the need to be silent or breath, they were still widely spaced and I felt totally normal between them. Sarah suggested I have a warm bath for about half an hour to see whether that reduced them or made them more efficient. Apparently, in "false" labor a bath can stop the contractions while active labor is unaffected.

I had a long bath and finished my sci-fi book. The contractions almost vanished in the bath so I was starting to wonder whether I was really in labor or whether this was a phantom experience. The tough thing was that I was in two worlds that seemed to have completely different priorities. During a contraction I felt urgency and fairly spacey. I felt I needed to call the OB and get to hospital because THIS WAS IT. During the time between contractions I felt normal, keen to be busy and watched TV, rested, read, checked the web etc. I had a few meals and even started to make gingerbread!

Sarah was checking on me regularly and during these calls suggested I take a nap and that Josh have the job of timing contractions to see how frequent they were actually (I hadn't been timing them very well). We went to take a rest and figured out they were exactly 10 minutes apart. By this time they were serious enough that I felt the need to find good positions during the contraction. I also liked to make a nice loud exhalation which felt like riding down a wave. Standing up and leaning over was a lot better than lying down (when they felt much more intense) so I did a bit of that but groaning and imagining my uterus opening was the best thing so I did that for about 30 seconds each contraction. As you can see, the contractions were hard work but they were so spaced out that I had lots of time to relax and recover between them.

Sometime around 2pm the electrical inspector arrived - I heard his boots on the porch as I had a contraction in our bedroom - so Josh went to show him around. After the contraction passed I went out and had a chat with him and it seems we should get final approval after only a few small corretions. Hooray! We were all happy.

Around 4pm I started to think that I really SHOULD talk to the OB. I had called a few times during the day and spoken with the nurse who said to come in if I had contractions 5-7 minutes apart for 2 hours OR my waters broke. Since neither of these things had happened I hadn't spoken with them for ages. I called again around 4.30 and spoke with the nurse, telling her that the contractions were very serious but still 10 mintutes apart, what to do? She told me to call at 6pm unless something changed, that Tracy would probably want me to come in for a check.

I think I called before 6pm because I was having increasing difficulty dealing with the contraction pressure and they were slightly more frequent - about 8minutes apart. I think this was in part due to Sarah's recommendation that I walk up and downstairs sideways to help open my hips and get labor going. That seemed to make them a bit more intense. Anyway, Dr J wanted me to come in because they felt that once my waters broke labor would be rapid. Turns out they were right!

We left for the hospital a bit after 6pm and drove slowly through peak hour traffic, stormy rain and traffic lights which were out with the power. By the time we were in the parking lot I was like "just let me out of the car right here, I can't have another contraction in the car" - being seated was just plain BAD. We made it to L&D with me clutching my pillow and they set us up in a triage room for monitoring.

I remember groaning very loudly and not caring who heard me (last labor I was very quiet and quite anxious about making a noise) but I was still pretty okay between contractions. They ran a strip which showed my 8 minute contractions and the occasional milder one between these (this had been happening during the day too - 10 minutes between major ones with the occasional five minute minor one thrown in). Baby Wren's heartrate was reassuring and he didn't seem affected by the contractions nearly as much as I was.

By triage(7pm+) I was starting to feel more nauseas. Nausea had been building from about 5pm but I threw up for the first (and only) time in triage which felt great afterwards. Finally, I was examined by the nurse and she said I was 6cm. 15 minutes later my OB examined me and said I was 6 to 7cm and 80% effaced with a bulging bag of waters. Baby was head down so I could be admitted.

Admission took ages (another 30 minutes of groaning and jiggling my hips side to side during contractions) because all the L&D birthing suites were full except one which had yet to be cleaned. Apparently the storm had driven us all into labor! By the time we were ready to waddle into the room Sarah arrived. It was great to see her and have some different (less serious) energy. She was all happy and encouraging, telling me how well I was doing which was very helpful.

Here we are in the room, finally.

When I reached the room Sarah asked for a birthing ball and our nurse (Amanda) found one somewhere. I was trying laboring on my side but nothing felt good and in fact I was feeling a lot of pressure between my legs. Sarah held my leg so I could lie on my side but then suggested I try leaning over the ball or holding the end of the bed.

At this point things got a little crazy. I suddenly felt the contractions increase in frequency - I just wasn't getting a break between them and felt like fighting them instead of just relaxing. It was too hard. I still needed to rock and yet felt trapped with my uterus shuddering and starting to push even though I wasn't ready.

Then I had this huge contraction that was half a push and my waters broke in a huge gush all over the bed and I felt his head descend and pressure build up. Someone called my OB saying "spontaneous rupture" and also paged the NICU to call the "critical care team". Amanda was covering the table and telling me that I would now need to take off my underwear (at this point I was still wearing my own clothes!) and I was saying "I AM NOT MOVING".

Then my OB came in and told me to turn over and lie on the bed so we can have "a nice controlled delivery for this little guy". I think I said "NO!". Suddenly, everyone was urging me to move a bit, do this, do that between contractions and I yelled at them "THERE IS NO BETWEEN CONTRACTIONS!!" because there was a contraction then a push then shudder it just went on and on. Josh and Sarah tell me that this whole period lasted 10 minutes and was, of course, transition but for me it felt like a substantial period of time.

Eventually they got it through to me that turning over and lying down was necessary - not as a new position but in order to deliver the baby RIGHT NOW. I think I asked "what, you mean I am fully dilated? He's coming out?" and someone said, "yes" which made me a lot more helpful.

My OB told me to push and I gave one push then I could feel his hairy head coming out. She told me to wait a moment while she oiled his head and then I gave a slow push, another slow push and then one big one and WOOSH... he came out in one big slide. I could see him lying there and he started crying with gusto within a few seconds. Dr J offered Josh some scissors to cut the cord but he said Sarah could do it... but then I decided I would like to and SNIP.. he was free.

The time was 8.44pm... just over one hour after I was given the room and 2 hours after we arrived at the hospital. I am still in shock.

He weighed 8lbs 6 oz, 13" head, 21.5 " long.

First photos

Shannon holding Wren.

Josh and Shannon visit Wren in the NICU.

Second echocardiogram - aortic valve borderline

This morning we spoke with Dr K, our primary cardiologist. She repeated the echo and had far better quality scans. She feels that the diagnosis is not as clear as we were told last night.

She measured the AV at 5mm, not 4mm, and says this is borderline - not stenotic. There is some mild turbulence but not severe. The coarctation is clear as is some narrowing in the arch. The left side seems viable.

On her opinion we might do the anastamosis arch repair first and then evaluate the AV function. The valve is bicuspid. She does not think the Ross Kono procedure is indicated yet.

We are waiting to hear whether she will be able to have a full consult with the Children's surgical and cardiac team tomorrow morning

Central line

I was woken at 4am by one of the perinatology team with a consent form. They needed to put in a central line (a PIC line?) to delivery the prostglandins reliably. Apparently he pulled out one IV line and they couldn't get another in and they always need two sites for the IV in case one fails or is "lost" (ie. Wren yanks it).

It was dark and I was exhausted and I signed the form after they said the central line should be good for 3 months and was needed for surgery anyway. It involved sedation to put it in and is threaded into his heart (as I understand it???).

After they left I couldn't get back to sleep for ages.

First postnatal echo.

The cardiologist came to see us after they finished poking and echoing Wren. There was good and bad news.

Good news:
1) Left heart looks normal size. Right heart a bit enlarged as expected. Left heart makes apex and is doing what is needed now.
2) Sats are in the 90s.
3) Pulses good.
4) Have started him on Prostglandins successfully.

Bad news:
1) Coarctation confirmed.
2) Couldn't get good images "he imaged better in utero, getting a lot of lung shadowing"
3) Aortic arch seems hypoplastic. Not clear how much.
4) Unexpectedly, the aortic valve seems stenotic (measured 4mm). This is a shock as it appeared normal before.
5) The foramen ovale is smaller than normal and with the left side pressures higher from the pulmonary circulation there is some retrograde flow decreasing left side efficiency. This could lead to cardiac arrest so they are considering a "cath lab" procedure to open this hole and keep him stable longer.

The on-call cardiologist said that he will need a series of repairs: valve replacement, arch enlargement and removal of coarc. He mentioned the Ross procedure, Norwood, elongated end to end anastamosis and/or a aortic patch as possibilities. However, the timing is vague and what surgery best treats these conditions is also a matter of debate. We will wait for morning for consults with our cardiologist and later the surgical team at Children's.

Birth Announcement

I am very happy to announce the arrival of Baby W, now known as Wren Ambrose Y. He was born after three pushes at 8.44pm. He weighed 8lbs 6oz and cried with gusto. We have not yet received his measurements because he was too big for the NICU board.

The NICU staff are evaluating him and have said they are very pleased with his oxygenation, pulses etc. We wait to know more.

I will post the birth story separately.

He is VERY cute and looks a lot like Frost.