Another decrease - change in feeding

Wren lost another 70g in the past 24 hours so his feeding routine has changed. He is now allowed only 3 breastfeedings a day and has 5 NG tube feeds with 30 calorie supplement + breastmilk.

I went in to give him his noon tube feed and he was very upset that I wouldn't nurse him. He was rooting around and crying even when he started getting the milk in his tummy. It was very distressing and I ended up in tears. Finally, the (nicest) nurse suggested I nurse him for comfort after he'd had his 85CCs and both of us liked this. It settled him immediately and he had a snuggle instead of yelling.

People have also started asking me about my diet. The idea is that my breastmilk may not be calorie-rich enough. I suggested that my diet was just fine but confessed to skimping on my prenatal vitamins. Now every nurse I see seems to know I am not longer taking them and "reminds" me. I talked to our day-nurse who is a lactation specialist about the idea of pumping first then Wren getting the hind-milk. She thought this was an idea to try so I will do that at 6pm.

We are still talking about going home tomorrow IF HE GAINS weight. I am not feeling very confident after the weight slide of the past 3 days but you never know.

Discharge discussions continued

The charge nurse has been talking to us about discharge on Saturday. They say it depends on the echocardiogram coming back okay. The X-ray of his lungs was clear (yahoo!)

We have to learn to insert and test NG tube placement, administer tube feedings, administer medications, pack and clean his incision, recognize signs of respiratory/cardiac distress.

I am still feeling both hopeful and unprepared. The house is not set up and our first attempt to insert the NG tube may have been in the lungs. This freaks me out.

Anyway, he nursed 66g tonight (up from 50g this afternoon). Sorry this is so short I am starving. I am forgetting to eat and do basic things like clean my teeth. Tonight I am using my birthday present to give myself a hand spa. You don't want to know the details but it involves parafin wax and heat and watching TV.

Confusion

So the same day that Wren is losing weight they are discussing sending us home on Saturday - with an NG tube, medications like Zantac and instructions on how to identify a respiratory emergency. Ho hum. I am both anxious and excited.

Wren had another chest X-ray this afternoon and we are waiting to hear how it looks. He will have to have another echo before discharge. Waiting on that too.

Another day down

Wren lost weight again today. He was down from 4.070 to 4.040ish (so about -30g). The nice nurse said he could still be losing fluid and so its not necessarily bad. I don't know.. but I feel discouraged.

Last night he received 3 GI tube feeds of 100g each and this morning he would only nurse 70g each time. Perhaps he wasn't as hungry now he is getting more overnight but I really hoped for a little gain.

He is also breathing a bit more noisily today, having minor retractions and tired of nursing soon none of which are good signs. Still, it was barely noticable to anyone else so I have asked the nurse to watch the quality of his breathing closely.

His vitals have been stable for so long that he is now off the monitors during the day.

Shrinking?

Wren seemed to lose weight again today although I have to wait for the morning weigh-in to confirm. Before the 6pm feed his BEFORE weight had dropped 170g from the last time I fed him at noon. I spoke to the nurse and suggested his supplemental feed (of 65g) was not enough. When I nursed him at 6pm he drank 122g of milk - a new record.

She called the doctor and received approval for an increase to 100g per feed. I hope that helps him out a bit.

Happy Birthday to me

Today is my 40th birthday. I spent the early morning with Wren at the hospital and just returned home for some eggs and salmon (and presents). Yum.

Wren had a bad night - lots of discomfit - probably from the 'mistake' at the hospital in which he was given formula instead of calorie enriched breastmilk. I came in this morning and found that no breastmilk had been used overnight so I looked in the room trash and found bottles of Alimentum. I was then told he was up every 10 minutes through the night. Ugh.

I have sorted this out with the medical team and apparently the nutritionists orders were not entered by the doctor so he was on formula as a default. Ugh. Ugh.

This morning he had lost weight instead of gaining. He has to gain daily for us to take him home. The good news is that this morning he nursed:

6am - 98g
9am - 90g

I hope he gains tomorrow - that can be my belated birthday present.

World of Warcraft

Josh has gone in to sleep the night in the room (aka play World of Warcraft all night.) He swears he lets his guy die if Wren wakes up but I am not entirely convinced of his immediate priorities.

Unlike ICU where there were always nurses on hand, Wren is in a room on his own some distance from the nursing station so it really breaks your heart leaving him there. He's so small and I doubt they would hear his little bleats when he loses his binky.

I am also entertaining disturbing fantasies in which someone steals Wren. When I come in at 5am I sneak along pretending I am a thieving villain and hope that someone sees me. So far, I have not been spotted on many occasions. I am hoping there is some high-tech covert surveillance system that would prevent me making off with Wren but so far I have only been asked for my little cardboard "parent ID" a couple of times.

Then again, who steals a baby from the surgery ward?

2 weeks old - his job is to gain weight

I slept at hospital between the 6am and 9am feeds and managed to wake up for rounds. The second surgeon came by and debraded his incision. He says it is not infected but has failed to close properly. He opened it up and we packed it with a kind of gauze strip to keep it moist. Apparently it needs to heal from within.

The goal for the next phase is for Wren to gain weight which can be hard with a heart issue and post surgery. A nutritionist came by with a plan - I am to nurse him 4 times a day with the goal of having him take 65g of milk. He gets a supplement of breastmilk in his tube if he tires before that.

So far today he ate:
6am - 38g
9am - 56g
12pm - 58g
3pm - 64g
6pm - 78g

So he is improving although it is a lot of work and fussing to get him to latch.

During the night (or when I am not there) he will get calorie fortified breastmilk through the tube. This is because babies with heart 'problems' tend to work harder with circulation using more calories than other babies. Wren breaths a bit faster than normal which takes more effort. Nursing also takes effort and he sleeps immediately afterwards for a long while. The idea is that the supplement and tube feeding is giving him extra gain with no effort.

I am not thrilled about it - I am really enjoying nursing him and think he is doing well - but he has to show weight gain to go home so if this is what it takes I will go along with it.

Once again the surgeon implied that the jury is still out on how Wren's left heart is going to cope with doing all the work. They said they will watch for signs of fatigue such as sweating, rapid breathing and such. They will also watch echo's at longer intervals to see whether his left ventricle becomes "less stiff" and how the valve does. However, for now weight gain is going to be a good sign.

Thanks again for all the support and well wishes.

Nursing treadmill - Christmas day

Since Wren started nursing this morning I have been running back and forward to the hospital. He is in his own room and with help from the lactation consultant he has finally managed to eat all he requires by nursing - once!

Before he nurses we weigh him on a special scale. Then I nurse him (with lots of complaining from him about how hard he has to suck and how he dislikes lying on his sore side) and after 30 minutes he gets weighed again.

He eats or is fed every 3 hours on the dot.

He must be fed 45 ml of milk.

If he doesn't eat 45 ml by nursing he gets it via his tube.

I know its best for him to nurse now.. he is very very sweet and interested in looking at us while he does... but, ye gods, I am even more exhausted than I was with rushing back and forward and settling him and having 1 hour at home before rushing off again.

Tonight I am planning to do the 9pm and 6am ones and try and sleep at home between those times.

Yawn.

Merry Christmas

I went down in the darkness to visit Wren and found him fast asleep and in a new ward. He is now in the general ICU (not cardiac). He is looking great.

I was there for rounds and this is the big news:
1) Wren is being transferred to "the floor". I gather this means he gets a bed in the general surgery ward as soon as one is available.

2) The surgeon looked at his incision and said it is probably opening because of infection and his skin is weakened by cortisone and the prostglandins. He feels it will heal from the inside with wet-dry dressing.

3) Wren's "work" is to eat. He has to get his calories by mouth before he can lose the tube. He gets fed 3 hourly and can nurse! I tried this morning and he complained mightily but managed to nurse for about 10 minutes on one side.

4) His last central line can come out.

All good news from us. I am very happy.