Coping On My Own

Things have sort of changed and not changed over the last few weeks. Amelia is still doing well. She is smiling lots now and making some of what the baby books call “pleasant noises”. She is more active and likes to sit in the bouncy chair and look at the fish. She is up to 3.54 kg now (almost 8 pounds), so we’re pleased. Better yet, she has a long sleep during the night and usually gives John 4-5 hours uninterrupted. Now, if I could just convince him not to fall asleep with her on the couch, he’d probably feel better. She is scheduled for a catheterization to stretch her pulmonary arteries next week. I saw the cardiologist today and he told me that the arteries must be stretched so they will continue to grow as she grows. Otherwise, her heart is working fine. We find that she is somewhat less interested in her food than she was about two weeks ago, which might be a sign that she needs the catheterization. She’s still really cute, but, man, can she cry. Every time she really works herself up into a lather, I can hear the alarm at the hospital ringing (crying causes blood to shunt through the hole that was created between her atria and that causes her oxygen level to decrease), which makes me feel a bit nervous.

I see that I wrote that Jack is a fussy baby. Not anymore. The crying peaked at six weeks (corrected) like it is supposed to, and since then he has been very good. He smiles a lot, he coos, he plays, and he is a great napper. He even went to a wedding shower on the weekend (only boy there) and he behaved remarkably well. Nighttime sleep is not so great. I don’t know why I’m sitting here writing this when I could be in bed – last night involved feeding him at least every two hours. Maybe he sleeps too well during the day. By the way, I weighed him today, and he weighs 12 pounds. There is no part of him that does not look fat.

I have been looking after them more on my own, and it has not been too bad. Mornings are usually good and they both have a long sleep. Then, around noon, they are both awake, which is fun while they are playing, but less fun when they are crying. They sleep again in the afternoon, but I find Amelia difficult to settle. Up again around dinnertime and early evening, then they both fall asleep sometime between 9:00 and 10:00. Amelia usually has her last feeding between 11:00 and midnight. Now, add Sarah to all of this, and it can be challenging. Thank goodness for T.V.! We have been trying to get outside as often as possible, but haven’t been too lucky with the weather. Last Thursday morning was grey and cool and I tried to play with Sarah while attending to first one baby and then the other. That wasn’t very much fun, and I got a bit stressed out, but then they both finally slept and Sarah and I had a tea party.

I will update this again after the catheterization. Unfortunately, we’ll miss the fancy, new, state-of-the-art facility at Sick Kids by only one month!

Life with Twins

Well, now that everyone is home, we hardly have time to update this blog. I'm not sure if anyone is still checking this, but if you are, this is what we're doing.

Jack
Jack is a very fussy baby, so he cries a lot. Usually, he's tired, but he finds it difficult to relax into sleep. On the plus side, when he finally gets to sleep, he sleeps for a long time -- both naps and at night. The twins are about six weeks old, and he is developing normally. Actually, he rolled over from his front to his back yesterday, somewhat ahead of schedule. I'd think it was a fluke, but he did it three times. Perhaps he's somewhere between the 12 weeks of his actual age and the six weeks of his corrected age.

Amelia
Amelia is gaining weight a bit faster now and she looks more normal. She's only about six to six and a half pounds, which of course is ridiculous for six weeks old, but the contrast between what she was and what she is now is considerable. She doesn't look like we've starved her. Her NG tube was removed before the end of her first week at home, and she's eating well. She's had a couple of heart checkups, and everything looks good. She is scheduled for a catheterization to stretch her pulmonary arteries, which are quite narrow, on May 9th. We'll probably have to stay overnight at Sick Kids because she'll need a general anesthetic. She's a pretty good baby. The one problem I find with her is I second-guess everything. For example, she has been very sleepy at two of her last three feedings, and I don't know whether that's a problem or if she's just sleepy. With Jack, I'd probably hardly think twice about it. We'll see what happens for the rest of today. As for her development, she's definitely behind Jack, but she's starting to come along. She smiles a bit, she follows us with her eyes, and she's holding her head up.

Sarah
Sarah is finally starting to toilet train. She's a bit jealous and is acting out, but, considering that she's now competing for attention with two babies, she's not too bad. When the babies are awake, and not crying, she seems to like them a little bit. She still goes to daycare two days a week, thank goodness. I wish it were three. It's been good for her, but on Monday the teacher told John that she's been pushing kids. She takes her favourite toy with her -- Curious George -- and that might be causing the trouble. Perhaps George will have to stay home from now on. She's very possessive about her things right now.

John and Melissa
We're pretty tired. Luckly, we've had live-in help for the last three weeks. My mom was here the first week and this past week. John took a week off and his mom came for a few days too. With two adults, twins and a pre-schooler are manageable, although Sarah ends up watching quite a bit of T.V. I have looked after the twins on my own for short periods of time. I have figured out how to pick both of them up at the same time, but I can't do too much to console them. There is definitely more crying than there would be if I had only one baby, and I'm not talking about myself! This morning I dealt with all three children while John slept in -- he'd had a bad night with Amelia. (Not bad -- he was just up a lot -- oh, the benefits of bottle feeding.) All in all, though, it's still easier than going to the hospital every day.

Thanks again for the phone calls and emails and offers of help and food. We really appreciate it.

Assorted Pictures

Day Fourteen- First Impressions Of A Mother Of Twins

For the first time, I feel like the mother of twins: tired, unwashed, overwhelmed, but also very happy to have Amelia at home.

The first couple of days have actually gone quite well. Amelia still sleeps quite a bit, although she was a bit more wakeful today. She is on a strict feeding schedule as she must gain weight quickly since she is so desperately underweight. I’m not used to schedules in terms of baby-care – Jack and Sarah are/were both demand fed – but I’m doing my best. I am coping with the NG tube. As long as she doesn’t pull it out, it is a convenient way to deliver her medications. I do not want to ever have to replace it. The home-care nurse was here yesterday and she assures me that she can do it so I’m perfectly happy to leave it to her. Actually, Amelia has done very well with her oral feedings, especially considering that she’s only been feeding by mouth for less than a week. Breastfeeding is another story. I’m trying to tackle one challenge at a time.

My mom has come to stay this week to help me and I definitely need help. How will I ever be home alone with three kids? Jack has started to smile, which is a lovely sight, but he is still quite fussy, and I’m terribly unsuccessful at getting him to sleep in any place other than my arms. John took him to the park for the first time today because Sarah wanted to go. I think it went pretty well, and he had a great nap afterwards. We may try an outing again tomorrow. Now that we don’t have to run to the hospital every day, I’d like to try to do more routine care more regularly. Jack had a bath tonight. His last bath was on Thursday. Not too impressive.

John has been very good about getting up in the night to feed Amelia. I’m grateful for the chance to stay in bed and feed Jack. I don’t know what John thinks of nighttime parenting, but with twins, I think he’ll become more familiar with it than he ever really wanted to. Sarah has also been coping well with two babies. She doesn’t seem jealous of them. She was home from daycare today, which made our day somewhat more challenging, and she watched a lot of T.V., but she’s doing her best to deal with being housebound, more or less. I’d like Amelia to gain more weight, or the weather to get considerably warmer, before I try a walk with her. Actually, I’d also like to avoid the question that many people will probably ask: why is one baby so much larger than the other one?

We return to Sick Kids on Thursday for the Post-Op Clinic. Poor Amelia will be having an X-ray, an Echocardiogram, and visits with the nurse practitioner and the dietician. I think she’ll also be getting the last of her stitches removed. This kid has already had more X-rays in her short life than John and I have probably had combined!

If anyone wants to help us out, now is the time. Come on up and change a diaper, give a bottle, pop in a soother. And bring food!

Thanks to Sheri and Spencer for lending us a basket for Amelia to sleep in. Being able to carry her from place to place without disturbing her has been great. The box of diapers is also useful, but in a much different way.

Plls, gifts, and postings on this blog. Your concern and best wishes for all of us have really helped us get through this difficult time. Keep ‘em coming.

Personally, I’d also like to thank everyone for all of their emails, phone calls, gifts, and postings on this blog. Your concern and best wishes for all of us have really helped us get through this difficult time. Keep ‘em coming.

Day Eleven-Thirteen- Amelia Is Home

Melissa and I spent Saturday night at the hospital and brought Amelia home with us Sunday afternoon.

Amelia
Amelia came home with her NG tube and 7 types of medication. I don’t mind getting up at all hours to do feeding, but I will hide from the NG tube at all cost. Fortunately, Melissa has accepted responsibility for NG maintenance until I build up enough courage to step up to the plate.

Around 10pm last night, we discovered that one of the medicines doesn’t sit well with our little patient (we have the laundry to prove it) but like the naïve parents that we are, we soldiered on with another batch of food to replace the evening feeding lost.

Discharge Dog-Tired
Throughout this whole adventure, we had always thought that the two of us would be choked up as we made our Sick Kids departure.

But the fact is—we are just too spent to be emotional about it. We are sick of the late night/all day trips to the Cardiac ward. We are fed up with having to fight through the commute. We are sick of being separated from our sickest child, but are also mildly offended that the hospital has the expectation of 24 hour parental presence on the floor (how is that possible with two other ones at home?).

The whole ordeal has left us completely drained.

When you spend really any length of time at Sick Kids, you develop a ‘sixth sense’ that is attuned to what everyone else is going through. In very little time at all, in addition to the concerns for your own child’s welfare, you also shoulder stress for all the other families that are in the same boat as you.. You don’t know anything about them, but you can’t help but care for their kids as you worry about your own. It’s an odd feeling— sort of like tunnel vision with portholes. And it can wear you down.

We are happy Amelia is home, and while we can’t help but feel some sense of relief, we know that there are still a lot of challenges ahead.

Day Ten- Intuitive Care??

To be honest, not much happened today but here is a brief.

Melissa, Jack and I talked to the sub-Conclave about Amelia’s impending homecoming. Well, I suppose Jack was more of a passive participant in the discussion.

To be honest, we are a little worried about Amelia coming home too early. Her vitals have steadily improved, but occasionally she still has bradycardia and shows decreased SAT. The nurse’s response to this has become rather concerning. Just today, the nurse simply turned the monitor off and told us to develop and rely on more of an intuitive sense of her medical status and condition! I laughed out loud and I think that this response sort of offended her. Within 30 minutes, the Nurse Practitioner was down to the room for a discussion.

The end result of this little meeting was that Amelia’s homecoming has been pushed off from potentially tomorrow (Friday) to sometime into middle or late next week. In exchange for this concession, I am probably going to be spend both nights this weekend at Sick Kids sleeping on Amelia’s couch. Imagine that…my 2 month old is putting me up for the night. I am going to nursing bootcamp.

Spending the day at the hospital is becoming pretty boring. Last week at this time, I spent alot of time pacing and hand-holding, but now Melissa and I just sit around in Amelia’s room and watch her sleep. Sure, things get pretty crazy when its diaper changing time, but really I seem to be spending much of my time watching TV.

I watched the Beachcombers today…I haven’t seen that in a long time, (that Robert ‘Relic’ Clothier is a national treasure). During my next visit, I’m going to watch the Sick Kids surveillance camera. Im sure that will be television at its finest.

Day Nine- Caer De La Lista Crítica

Melissa and I rolled into the hospital this morning to find Amelia comfortably settled in her own private room. Within about 10 minutes of our arrival, Mary walked in as well (she was downtown for an appointment and dropped by). We spent a few hours visiting with our little girl and discussing her current plan of care with the sub-Conclaves. I always suspected that that it was the nurses that keep the modern hospital running, and this whole experience has only served to confirm that. Since Amelia emerged from OR, I don’t think we’ve spoken an actual cardiologist more than twice. I suppose this is a good sign—Amelia has fallen off of the Critical List.

Amelia had an echo today. We were told that her patch (separating her left and right ventricles) is still leaking a bit, but this is normal and it will close over time. The test also confirmed that her pulmonary arteries are rather small, which means that she will require stents sometime in the next 3 to 6 months. But this procedure is not quite as invasive as what she went through last week. For now, our focus must be on Amelia gaining weight and getting home

The big question is now when Amelia will be coming home. Melissa and I would have preferred for A to have gained more weight (and escape the clutches of the NG tube) but, at the end of the day, there are other kids coming in and her bed is needed. It’s scary to think that there are other kids in worse shape.

I suppose that’s one of the sad things about Sick Kids Hospital—no matter how bad things are with your own child, there is always another child in worse shape. That’s life.