Saturday, February 3, 2007

Vague Unease

Today is one of those days on which I wonder whether Wren's okay. He's just very sleepy - has only been awake for one long period all day and the rest has been brief periods of being alert followed by another nap. Its now the usual nap time and he is resisting my excuses to wake him. Perhaps he's tired because he only went to sleep at 11pm or perhaps he's having a heart crisis. Who knows.

He's also fussy when he nurses about half the time (again, often is when he really wants to sleep and is only a bit hungry) and he seems to be getting red more frequently but it quickly fades.

He has done this before and it passed but then it also turned out to be a problem at last checkup so I have no idea what to do.

I have called our nurse (Jenny) at the Heart Center to see what she thinks. I also want to know what "sweating" means. Does it mean a little damp when he's nursing snuggled up in a blanket or does it mean swesweating like an athlete? Sometimes, if Wren is bundled and I am holding him while he nurses, his forehead is a bit clammy. Again, not every time... but I am just feeling anxious and I wish he was as wide awake and chirpy and nursing with quiet industry.


Okay, she had me check Wren's feet which are lovely and warm and pink which is a good sign. She said that the sleepiness is only a problem if it persists for a few days and the same thing with his nursing behaviour. Other than another echo (scheduled for the 26th February) the only thing that would be diagnostic is a big pressure difference between upper right arm and lower extremity so she suggested we ask our pediatrician to take pressures on Monday or come in and have them do it if I am still worried.

When I asked about sweating she said I would see "beads of sweat" on his nose. Being a bit clammy when he's swaddled and nursing is to be expected because he has to work a bit harder than usual. I have to keep track that he is getting enough fluid - he is definitely managing to do that - and other than that just keep an eye on him for a few more days.

Actually, I never keep my eyes off him long so that doesn't mean much. Still, its reassuring.

Friday, February 2, 2007

Wren at 7 Weeks

Waiting for his bath.

On Monday I took Wren in to Newsvine and everyone commented that he did not look like the newborn they were expecting. Its true. He is now 7 weeks old and getting quite plump. His legs, which were little sticks when he was born, now have rolls of fat and even his calves have healthy curves. He has found places to fatten himself behind his neck and under his armpits as well as the usual cheecks and belly. His belly deserves special mention.

In utero, Wren was scanned a number of times to check on his rate of growth. These growth and size estimates always noted that his extremities measured 50-70%ile while his belly was a good 20% larger. This is how he remains. When we went into Cardiac Clinic last week and I undressed him for weight and length measurements Elisha was startled and said "his belly is distended! How long has it been like that?" He was unconvinced when I said "always" and worried me. I asked Dr Lewin to check his belly and he said its fine - nothing of concern there (even his liver is now normal). He said he just has a big belly.

Despite his heart condition and rapid breathing, Wren is quite strong. He loves to push up off his legs and stand holding onto my fingers. When he's in my lap he pushes up off my legs and quivers there a while before his legs collapse. While he does this his eyes are wide as if its a great effort. He also holds his head up almost all the time but needs some support after a while or it lolls back a bit. When he is on his tummy he lifts it up a little bit but not enough to really enjoy this process much.

He is much more talkative at this age than Frost was. I remember taking Frost to a language lab at UW and them wanting to record his "babbling" (months later) but Frost was always pretty quiet until he started talking. Wren likes to make noises. He doesn't "coo" but he grunts and hoots and makes other noises that sound like "nyah" and "hi" and "ooo-oh". Most of his talking is done at diaper change time when I lay him on the little wedge and chat to him while he watches the curtains. He usually replies after a while and waves his arms and legs around while he makes his own talking noises.

Meanwhile, he is starting to be a bit more interactive in other ways. He has a distinct cry and behaviour when he wants to nurse (which is all the time) and he smiles occasionally at irrational moments. He loves to watch the fish mobile in the living room and to listen to the sound of the bath running in. If he is crying Josh holds him next to the running faucet in the kitchen and he quiets down.

He likes to look around the room when he's in a quiet state and is particularly happy when I carry him around in the sling. Sometimes its hard to get him in there if he is already fussy (mainly because I have trouble positioning his feet now he pokes them every which way) but he usually falls asleep pretty quickly if he is at all tired.

He likes to wave his hands about if I lie him on the floor but he doesn't seem to find them when he wants them. He likes to suck on his hands but I have to bring them close for him to get a hold of them and just when he is happy sucking that hand he is distracted and the hand flaps off somewhere else and he gets pissed off.

Here he is flapping about waiting for bath:

Wren can follow me with his eyes if I move around in front of him and when I hold a particularly interesting toy he will move his head around to follow it, even arching backwards as if he could see behind his head if he tried hard enough.

He continues to have a lot of baby acne on his cheeks, around his one ear and under his chin. It could be a sign of the dairy sensitivity I have been worrying about. I've been trying to remove dairy from my diet but its too tempting with the ice-cream floating around in the freezer. Perhaps, starting Sunday I will make more of an effort to stick to goat cheese.

Thursday, February 1, 2007

Listening Mothers

I went to the Listening Mothers group this morning. It was fun. Most of the babies in this group were born in November but there is one who is almost 6months old and one who was a premie so is smaller than Wren.

Many of them are noisy sleepers. The mother of one of the other noisy sleepers ("sleeps" from 11pm - 7am already) said her baby sleeps in her own room in a crib. At first they had the baby monitor on but it kept her awake hearing the almost-cries and resettling so they keep the nursery door open and turned off the monitor.

I wouldn't go that far but perhaps some kind of earplug is in order :)

Scientific Obsession

Last night I took a step back and redefined Wren's "sleep problem". The problem is not that he wakes too often but this:

Wren sleeps in the wedge. He has Zantac at bedtime. Firstly he has 2 or 3 periods of 2 hour peaceful sleep starting around 8 to 11pm. Then, around 3-5am he enters a very disturbed period of sleep lasting 3 hours. He thrashes, grunts and half cries, strains, flails arms and legs (kicking of swaddling blanket) then settles for a few minutes then repeats the grunting, snorting and flailing. I turned the light on and watched him... his eyes are flicking under this eyelids and he looks like he is about to wake but doesn't. He falls asleep for a short period and repeats.

If I interupt this by nursing he usually latches and nurses for 5 minutes and then falls into a better sleep for about 20 minutes before staritng again. He naturally rouses himself every 45 minutes to and hour.

This is the behaviour that is most disruptive to my sleep because I can't sleep through it and worry about him. I have some theses I will type in later. Any ideas?

Wednesday, January 31, 2007

Freakish kind of normal

Today was a moment of calm. Wren and I had a good day and didn't do anything momentous other than the laundry. He slept a lot (but not in a worrying way) and did some smiling. He just seemed a bit more predictable in his behaviour and I even took him for a walk to the bookshop (in the sling) and he slept all the way.

Last night wasn't a great night of sleep but I can't be bothered to go into it. Suffice to say I managed to remain in good humour despite stepping in cat vomit in the dark, Josh voted not to move to the spare room when the ship of sleep was sinking and I was grumpy in the dawning until my cup of decaf coffee.

There are, of course, always some new freakish things going on. our rats are both afflicted with massive tumors and lumber around the cage dragging great pink protrusions. We had one undergo surgery to remove the first tumour but they returned. This is a very common problem for domestic rats of their age. It hasn't affected their behaviour one bit and all I have read says that they are not in great pain nonetheless they are getting very bent out of shape and the time has come to have them "killed". We talked to Frost about it and he said that we should have them "put to sleep" instead. I think I explained to him that this is what people say but its the same thing as dead. He prefers to stick with the euphemism.

Wren will be 7 weeks tomorrow. I'll post more about him then.

Tuesday, January 30, 2007

Post-cath pediatric cardiology appointment update

This morning we met with Dr Lewin to discuss how Wren is doing post-cath. To sum it up, its going to be a long road but he's not having immediate difficulties.

To start off we had the weight check (5.65 kg = 12 lbs 6 oz approx). His (sleeping) blood pressures are good for him (84/48 in upper right arm and 77/40 in lower leg). The pulse in the left leg is good but the right leg is still faint.

The echo followed. It was not so good. The turbulence seen last week remains - only slightly less. Apparently it is often seen post-cath but decreases as the left ventricle adjusts. In Wren's case it is still turbulent. The trouble areas are the inflow tract and the coarc next to the left subclavian artery.

Dr Lewin sensed I was feeling discouraged so he said we should step back and look at the big picture and how we started wondering whether his left heart would cope or we needed to do a norwood. We repaired the most obvious problems and then it seemed to be looking good so we got all optimistic and felt that he might not need any further surgeries. Perhaps we jumped the gun and became a bit complacent because then we were shocked when we saw the problems with the aortic valve and arch last week. Now, we shouldn't be too discouraged or too optimistic about not needing future surgeries. The truth is we will jsut have to see.

In Dr Lewins mind Wren will probably need an OHS sometime in the future to remove some tissue obstructing his aortic inflow tract. It could be years from now but it could be just months away depending on how stable the obstructions and left side remains. He described the obstruction as moderate nad said some kids live with this for years and years. The key will be to follow him closely for now to check the obstruction is stable. We have another appointment in 2-3 weeks.

We will monitor:
1) Turbulence via echo.
2) Blood pressures.
3) Overall appearance and weight gain.
4) Behaviour (nursing, color, breathing)
5) The performance of the LV on echo (and muscle size).

If there are signs of heart stress Dr Lewin suggested we are aggressive in pursuing surgery for the inflow tract as prolonged difficulteis in this area could damage the valve which is doing well now (no leakage or obvious blockage). The open heart surgery for the tract is not on bypass and is generally well tolerated so its not the most serious form of surgery. By contrast he would hold off on the coarch area in the arch as long as possible as its likely that (if it is stable) and the arch grows in diamter the coarc area would be less critical. Also, due to its position it requies OHS on bypass (cutting circulation to the brain) which we would rather avoid.

So, that's the plan.

I asked about sleep stuff and that is not a cardiac symptom in this case. The fact he fusses sometimes and refuses to nurse when he's upset may be but its not serious since he is gaining well.

I asked about travelling to FLorida in early May, assuming it was out considering our month to month plan. Dr Lewin said that may well be possible but we won't know for 2-3 months. He said that was a decision to be made in about 2 and a half months but he wouldn't rule it out. I am not sure where that leaves us. Josh and I are both a bit apprehensive about leaving home, let alone flying anywhere. Perhaps if Wren seems to be really stable we would feel better but the prospect of kind of waiting for open heart surgery to be necessary puts a damper on things.

Apparently the longer he can wait the better. Firstly, it would be best if he never needs it and secondly with larger babies/kids the heart is easier to operate on.

I feel happy that he isn't getting worse right now but I'm also very sad that he will have to suffer again through all this stuff. I mean, I used to get teary when Frost had his baby vaccinations now Wren is probably going to be cut open and sedated and all that once again. I wish it wasn't even a possibility.

Dr Lewin still feels we are on the right path in terms of fixing his left heart rather than the Norwood. He hopes we will need fewer overall surgeries and his left heart pumping function (the ventricle) is strong. In the long term this is a plus. Still, we are now in it for the long haul not a one-fix wonder.

Monday, January 29, 2007

Feeling anxious - ped card at 9.30am tomorrow

We have a follow-up appointment with Dr Lewin tomorrow. It is to discuss how Wren is doing and the continued turbulence in the arch and inflow-tract area. I have been reading about inflow tract obstruction (subaortic stenosis or sub-vulvular AS) and its not too great. It all requires OHS (open heart surgery) to correct it and its recommended not to leave moderate stenosis as the high blood velocity (indicated by turbulence) can lead to damage of the valve leaflets over time.

I am feeling dreadfully anxious and pessimistic.

To top it all I think Wren looks good physically but I want him to seem happy. Can a 6 week old seem happy? He smiles occasionally but they are those elusive first smiles that don't seem personally directed. He could almost be smiling at the ceiling or the curtains. I don't feel he is energetic or happy and alert as much as I expect. I know, its ironic that I want both sleep and not-sleep but I just want him to be normal and healthy and happy.

I read a post on the Babies with Heart Problems Board about a baby born on the same day as Wren. The poster wrote her baby is "smiling and cooing" - hoping this meant the defect is not severe. I can't say Wren is smiling and cooing. He looks around with interest but that's about it.

I will feel better if tomorrow is over and surgery isn't on the schedule.

This has to stop, well improve

Another rant about sleeplessness coming.

Last night Wren fell asleep early - 6.00ish he was deeply asleep in the swing and still sleeping at Frost's bedtime so I nursed him and put him to bed in the wedge for the night. I went to bed around 9pm and he slept till 11pm ...then started that grunting and groaning and stretching and kicking - waking every hour right through till 3.30am. Finally, he slept two hours till 5.30am and then the hourly or 45-minutely until 7.30 when Frost woke up. I moved him to the swing and he is still sleeping - now in silence.

He (and I) must have woken 9 times during that 12 hour period.

I swear I am at my wits end. When he's doing all this super-noisy straining active sleeping I check him carefully and he is really truly asleep until he finally rouses himself and cries. If I nurse him he nurses for about 2 minutes then falls into a deeper sleep. Other times I pick him up and rock him a bit then he falls into a deeper sleep so its not like he really wants to wake up. Its so confusing. But what is not confusing is that I can't exist happily on one or two 2 hour stretches a night and most of it this hourly waking, straining and grunting pattern.

Josh sleeps under the blanket and I cover my head with a pillow and I can still hear him clearly.

At 3.30am I completely lost it and told Josh "something is wrong with him, this is not normal". Josh said "every baby is different" but I can't believe the human race would have a problem with overpopulation if any meaningful percentage of babies did this. I kept thinking how sleep deprivation is a form of torture and then feeling guilty at my resentment of Wren because we are so lucky to have him in bed with us at all after all his heart complications. So, at 3.30am I was having an emotional breakdown smelling his lovely little head and then just wanting to get in the car and go and stay in a hotel for a night.

Honestly, its now 8am and he is sleeping better swinging in that swing than he did in his wedge all night and I am wondering whether I could use the coffee grinder and not wake him.

Sunday, January 28, 2007


You can stop feeling sorry for me now. I have just spent over an hour at a salon having a facial and getting my eyelashes tinted (thanks for the birthday present Mum!). People in crisis do not get their eyelashes tinted so things must be getting better.

Josh did not have such a great time as Wren is having trouble settling for naps. He used to have nice 2 hour naps every day but now he only catnaps for 10-45 minutes at a time and gets very worked up before he can manage even that. We are having some peace now as he naps in the Moby Wrap which seems to prolong the nap quite a bit for him but none for me.

Last night he was a little devil - not settling for long until midnight and then doing that grunty rem-sleep thing for hours before getting deeply asleep again around 6am. Frost woke me at the usual school-wake-up time with a few Warzone manuals and some sticker pictures he wanted me to admire. I was less than stellar in my parenting.

Meanwhile, Wren is due for his monthly RSV shot - I think I posted before about Synagis and he was scheduled for one the day after we came out of hospital. Because of the uncertainty it was cancelled and when I asked the ped card about it Dr Lewin said he didn't think it was necessary for Wren and kids have so many vaccinations anyway. This is kind of how I think but our pediatrician seemed to think Wren needed it. Ugh. These are the kinds of decisions I would rather not have to make.

I think I will round up some second and third opinions. Anyone?