Saturday, January 6, 2007

The tube is out

Bottles are in!

Our first "cardiac surgery clinic" visit went well. I thought it was going to be a short weight check and discussion on how we were doing but it took two hours and involved having a chest X-ray, EKG, all vitals, sats etc. Our nurse (one of those NPs who do a lot of the follow-up) said "I have no concerns".

Here is the summary:
1) Chest x-ray is completely dry - not even the suggestion of fluid around the lungs as there was at discharge.
2) EKG - normal sinus rhythm
3) Weight - 4.3kg = 60g gained per day.
4) BPs as they were before.
5) SATs in extremities 100%
6) He has reflux and will probably go on Reglan / prilosec from next week.
7) I was given a choice of doing 4 feeds by ng tube or 4 feeds by bottle. While the bottle won't be easy it is so tempting to try. So, she removed the ng tube and we are now doing all feeds by mouth.
8) Wound is healing well but still needs dry-packing.

Even though Mum left this morning I am feeling far better about everything to be ng-tube free (at least for a while). Thinking back over the past few days I think I am feeling so emotional as I relax a little - kind of recovering from the surgery and anxiety that has gone before. I think there were only two days on which I felt so emotional (the day he was born and while he was in surgery). The rest of the time I have been trying to C-O-P-E rather than collapse in a heap. There wasn't time to cry about things so now I get to cry about traffic and spilt milk (literally).

Anyway, this is a happy post. I got to eat some hot lunch at the Children's Cafetaria which was quite good and nothing can go wrong when you have blue-cheese dressing.

I have some phonecalls to make later (you know who you are!) but for now, I am going to nap while Wren sleeps too.

Friday, January 5, 2007

Reflux gridlock

This is from an email I sent Laurie. I don't think I can type anything else tonight. I am going to drink peppermint tea and try to get to bed before 11pm.

"I am having a weepy-sobby day again due [to hormones and] to Wren vomitting all over me 3 times. I am now in dread of feedings (again) because half the time they come up all over both of us in a vomiting choking mess. I am afraid he will be losing weight again because of this.

On top of this my Mum leaves tomorrow AND I went to fetch Josh and got caught in the I-90 collision gridlock for almost 2 hours on a trip downtown. I have never been reduced to tears by traffic but this was it. Josh says I was "making up pitiful little stories about myself". This is true. I was feeling tragic that I wasn't with Wren, that we were late for his feed, that I had only had a Luna bar for dinner, that Frost is miserable with me ... etc. I managed to weep all the way home and still refused to let josh drive. I think I almost agreed to buy a second car (except J wants a new Mini Cooper and I want a $2000 bomb).

In the middle of my day the Social Security Administration called to see whether we qualified for supplemental benefits due to having a child with a disability (or birth defect or medical case or something like that). I spent about 10 minutes explaining that we didn't need a means-tested benefit but the interviewer kept saying that she needed to do the screening to check on my son's eligibility. After 20 minutes she said "sorry, he is not eligible". Argh! He had been yelling and needing diaper change for half the time.

Taking all day to wash my face

Things are going a lot better today. Besides adding in 3 ng-feeds, a few dressing changes and 2 medications - I feel I am doing the normal baby routine of eat-cry-sleep eat-sleep-cry which most of you are familiar with. I start the day with an intention to do one thing like wash my face and manage to do it around 4pm (I hope, I haven't done it yet).

Wren is having a long sleep this afternoon and I had a nap which makes for great deal of happiness all round.

Thankyou for all the encouragment after my meltdown yesterday. I appreciate it - especially the reassurance that I am not doing too badly with my ng-tube fumblings. Today we have not had a failed feeding (other than a couple of episodes of spitting up half of what I gave him).

Tomorrow we have our first weekly checkup at Children's Hospital. I have a 9.30am at the Cardiac Surgery Clinic with a RN. She will do wound-care, weight and general vitals as well as check on his overall progress. Fingers crossed for a healthy looking baby and good weight gain.

Thursday, January 4, 2007

Losing it

I have been fighting with the ng-tube all day. Yesterday it kept getting "blocked" in a way that made it impossible to retract fluid to confirm that it was in his belly. The help line said it was a placement problem and that the tube was pushed up against his stomach lining. I felt awful - had I been sucking holes in his stomach?

They assured me this was not the case but that it could cause "a hicky" in his tummy. A hicky? I am sure this is not a lovebite situation.

Today, the 9am feed was fine but each time I tried again I failed to clear the tube and couldn't do the 3pm or 6pm feeds. I ended up in tears, feeling I was failing to give him what he needs AND/OR was hurting him. The whole process of placement and trying to clear the tube involves pushing a bit of air into his belly, then a few CC's of water, alternatively warm water and/or cranberry juice. The whole process is a nightmare as he cries, I cry, Frost tries to sing (loudly) to calm Wren and then turns on a baby CD (loudly) and Mum gives her views (that this isn't working, try later, try with Josh, just nurse him etc).

I called the help-line about 5 times today and he different advice each time. Some said try a new tube, use 5CCs of fluid to flush the line, try OJ, try COCA-COLA!!!, dissolve the crushed aspirin in hot water first, separate the meds delivery with a bolus of 1CC of water... blah blah.

Finally, he most experienced NP said it is just a matter of placement and suggested that we not hold him while we do the feed as the tube can move into a part of the stomach that blocks uptake but it still fine for the feed. She told me to lay him on his back and/or just do the air-pop test (I won't go into this for everyone) and then deliver the feed. She told me to do a bolus feed for the short nursing I gave him to calm him (and myself). I keep thinking "what would the neighbours think?" if they see me sitting sobbing into the phone on the glider-rocker. Its not a matter of the neighbours thinking anything but they have had lots of guests today!

So, finally, I followed her advice and gave him 40ml of enriched BM and it went in fine and Wren fell asleep (finally). With the schedule so messed up I am not sure whether I am starving him or overfeeding him.

Weight gain

Our home-help nurse came by again last night. Apparently the cardiac team were not happy that she left without a weight.

The scale was set out and Wren was unwrapped in all his glory. He weighed 4.260kg a weight gain of 230g since discharge while we need to gain 25g a day. On the basis of this good news I am "allowed" to replace one ng-tube feed with a BF. This brings me to 4 BF / 4 NG feeds.

The next checkup is on Friday morning, the day Mum leaves (weep).

It wasn't such an easy night last night. Wren wanted to nurse every 2 hours and grunted a lot between times. Josh managed to sleep through it but I will definitely need a nap - possible today because Frost is BACK AT SCHOOL!

The poor guy had to be pulled from bed. The alarm didn't stir him at all. As I put breakfast in front on him he asked "is it still the night?" He is indignant that Wren gets to "stay up late" and now Wren is allowed to sleep in too? Hopefully much fun will be had seeing his friends again and perhaps bedtime will be a bit smoother for both of them tonight.

Wednesday, January 3, 2007


Since Wren's birth and surgery Josh and I have gained an expanded vocabulary. Today, as we drove down towards Elliot Bay I shared my thought that:

Shannon: "...the bay is occluded by rain"
Josh: "I'd say 'the bay is occluded by silt'"
Shannon: Okay, my view of Elliot bay is occluded by rain.
Josh: And I should extubate the old kitchen walls.
Shannon: Extubate the plumbing?
Josh: Mrrmm
Shannon: And use the sander to debrade the old drywall joints.

Occluded is definitely my favorite. As used by Dr Cohen: "When the PDA was tied off the arch was completely occluded"

As per Occluded
–verb (used with object)
1. to close, shut, or stop up (a passage, opening, etc.).
2. to shut in, out, or off.
3. Physical Chemistry. (of certain metals and other solids) to incorporate (gases and other foreign substances), as by absorption or adsorption.
–verb (used without object)
4. Dentistry. to shut or close, with the cusps of the opposing teeth of the upper and lower jaws fitting together.
5. Meteorology. to form an occluded front.
[Origin: 1590–1600; < L occlūdere to shut up, close up, equiv. to oc- oc- + -clūdere, comb. form of claudere to close]

Home help nurse visit

We had our first nurse practitioner home-help visit this morning. It was a bit chaotic. At the time she arrived he was mid ng-feed, had just had meds, we due for dressing change, diaper change and then the nurse wanted to listen to his heart/lungs and get a temp.

By the end of it Wren was yelling and tubes were trailing, the table we do dressing change on is in a corner and has dim light and there were three of us trying to squeeze in to see what was going on (Josh with the forceps, me with the binkie and the nurse with a clipboard).

I think we passed and she had some suggestions to streamline operations. It is so much harder to do scheduled administered feeds than simply responding to his needs via breastfeeding. Honestly, I don't know if I could do bottle feeding if I wanted to. There is just so much washing and prepping one girl can do!

Days are passing in a blur of feedings, meds, trying not to ignore Frost and simply pacing myself for the next required activity. As soon as I sit down Wren is awake again... I am typing this as my lunch microwaves but I can hear him gurgling so odds are I will have to soothe him and will forget to eat lunch till a few hours pass. I don't mean to, but that is about how long it takes to have another empty moment.

Meanwhile, the weather is a wonderful combination of wind and rain that is blowing all the extra Christmas garbage around our neighbourhood. Car lights reflect in puddles and Frost had a fun time this morning "showering" in the overflow from the guttering (soaking his raincoat and boots). He also had a "test cook" in which he threw together baking ingredients in a fairly random way and "made Frost's special chocolate Chip cookies". The recipe is available to all who want it, he says.

Josh is back at work today for the first time since Wren was born. He says his whole day will be taken up responding to email. That sounds delightful!

Tuesday, January 2, 2007

ng tube confusion

Well, it seems we have been disposing of our pump-kits every feed instead of every 24 hours so we have almost run out! The pump-feed kits include a bag, lots of tubing and little valve kit. It doesn't look disposable. Anyway, we checked our discharge instructions and it says dispose bag every 3 hours but on the bag is says replace every 24 hours.

When I noticed we had only 4 left (for 5 feeds every 24 hours) I called the 24 hour help line and the trainer was most apologetic for her mistake. Apparently we should have been keeping these things for 24 hours in the fridge. Ack. Now we are short of supplies and have to have them air-freighted to us.

I am glad the error was in the pump plastic stuff and not in medicine dosage but it is a bit alarming.

Meanwhile, we had a good night. Wren was awake from 2am - 3am and managed to need three consecutive diaper changes before I could put him down but after that I managed to stay in bed until 7.30am which was splendid.

Frost stayed up till 12.30am with Josh but didn't see any fireworks. Despite his new year revels he was up at 8.30am and isn't showing signs of wear just yet.

Monday, January 1, 2007

Happy new year

I don't have a lot of time to post what with trying to get ourselves sorted out at home, but the quick and wonderful news is that Wren came home this afternoon at about 2pm.

After all we have been through the discharge was rather uneventful. The nurse came in and went through a long sheet covered with scrawly writing which detailed subjects such as "wound care 2X a day", "ng feeds 5X per day at 3hr intervals", "hydrocortisone at 8hr intervals", "other meds 2X daily or 1X daily as per pharmacy instructions"... etc etc.

We have weekly appointments sheduled, first with the cardiac surgery team next Friday, then with our pediatrician and finally another cardiology appointment and echo in 3 weeks time. We have decided to see Dr Lewin at Children's rather than Dr Krabel (although both are great). Children's is so close and we feel that Dr Lewin was instrumental in advocating the CoArc repair rather than the Norwood and believed Wren could do well. We like that optimism.

Frost is very happy to have Wren home. We have a little baby-monitor which I asked Frost to keep track of to see when Wren wakes up. He carries it around and whenever he hears a murmur he runs into the bedroom to "check on Wren". I think it is important for him to have a role.

Josh is also happy. I learned about the discharge at 6am but didn't wake Josh with a phone call. Instead, he woke without the news and assumed Wren was not to be released. He lay in bed a while making up various rants about how Wren should be released because he was just having baby-sitting at the hospital and we could do everything else just as well at home. He has been holding Wren a great deal and looked after him for a few hours while Mum and I went out to buy a crib-mattress and more supplies.

I confess that even with homecoming so close for days we have not had the house ready. I haven't bought any baby things until the last few days and so the basics are lost or mislaid. Other stuff is in bags all over the place (we came home with tons of bags of stuff - only some of which is essential).

I feel we are coping with all the medical stuff we have to do, the part I find hard is worrying about Wren all the time. At hospital, I could just ask a nurse or doctor about something that I was obsessing about but now the things he was doing in hospital are freaking me out. Is he breathing too fast? A (Josh): No, he always breathes like that. He just breathes fast. You couldn't hear it in the hospital [where fans were always going]. Are his hands cold? (Josh) Well, he's not wrapped up. I am just scared I will miss something and he will be ill or in trouble.

Anyway, I hope that we get some sleep tonight. There seem to be so many scheduled events - feeds, meds, etc - between now and 8am!

Coming home!

Wren gained 80g today and the surgeon has entered his discharge orders. Josh is getting "pump training" now and we should have him home this afternoon.

More news soon!

Sunday, December 31, 2006

Comments confusion

I've had a number of emails from friends who have tried (and failed) to post comments on this blog. I was looking at the settings and it was on "registered users only". I changed that and I think it will now allow anyone to post.

Thanks again for all the support - email, comments, playdates, food and good vibes in the ether. I feel quite guilty for my lack of feedback to many of you. I am sure we shall one day emerge from this fog of immediacy: wake, nurse, snuggleWren, drive, eat, nurse, snuggleWren, drive, play-with-frost, eat etc etc. Note, sleep does not appear very often on this list. Neither does face-washing, teeth-cleaning and lying with my feet up. I'm not complaining but I am starting to get grumpy about having him so close to being home-ready and just not making it each day. It puts a lot of stress on everyone having to have two home bases.

2 1/2 weeks old pictures

Today, Wren has been more alert and interested in the world. He is nursing well but in a distracted way: 5 minutes then a break to look at things, 10 minutes then a burp and gazing around again. He ate 75g, 50g and 66g at his three allotted sessions.

We had a scheduled "pump and NG tube" training session but unfortunately the wrong pump was ordered. It was the supplemental feed pump not the main feed pump so we would not have been able to go home today anyway. We have to have the right pump and training. Its now scheduled for noon Sunday. 6am is the next weigh-in "go home" chance. Fingers and toes are crossed for a weight-gain. We are exhausted with trying to be at the hospital when he is awake and Josh and I seldom see each other as we do opposite shifts.

Frost and Granny went swimming today which was a great event for all concerned. Frost learned to dive down and retrieve hoops from the bottom of the shallow end. He was very proud. Meanwhile, I slept in the stands.

Later, Frost came for a visit at the hospital and held Wren on his own for the first time. He is incredibly careful with him - worrying if he cried and trying hard to hold him steady. He is clearly alarmed by the hospital - when we asked him to wash his hands he said "because if he got a cold he could die" - and was upset when we insisted he wear shoes in the ward because there could "be germs and dirt on the floor". He enjoys the hospital cafetaria - managing to score a few take-away boxes of sweetened cereal which he is storing up for unhealthy breakfast options.

Discharge .... Sunday?

Wren lost weight again today but such a small amount (10g) that the surgeon said it was as if he was the same weight. The upshot is that he can't come home today but they are hopeful that he will "turn the corner" tomorrow and be discharged.

Dr P said that Wren is not showing any of the signs of extra heart or respiratory effort which would explain his weight loss so he believes it is more a matter of establishing fluid balance and calorie intake after surgery. Wren is still 200g up on his birth weight and was very odoemic until last week. Once again, we wait till 5am tomorrow for another chance to "get out of jail free".

Meanwhile, Wren looks good. He is able to lift his head up quite a bit, looks around and is alert for longer periods. He seems pretty content - especially when he is held. It is getting a lot harder to leave him at the hospital because he is so attentive and sleeps less.