Day Eight-An Embarrassment Of Riches

I have to be honest: I’ve been cheating at the whole blog thing recently.

We originally planned to alternate the responsibility of updating the blog on a daily basis. But my last two submissions have been point form thoughts converted and ghost-written by M, (although I have to admit, the witty stuff was added by me later on..just to give credit where credit is due). I feel that it makes perfect sense to have the English teacher do all the writing, but Melissa seems to think that sleep is more important.

Anyways, I feel shame and I have decided to resume pulling my own blog-weight.

But it’s late now, and sadly this entry will be a little bit of an unedited rant. Sorry in advance. Bethune staffers-- put down your red pens.


Amelia
Sometime overnight, Amelia will be moved into a private room- potentially her last bed change before finally coming home.

From a treatment perspective, really only the NG tube and the Lascix/Tylenol remain. The PICC line has been capped (but not removed as of yet) and all the abdominal drainage tubes are gone. The room air apparatus is present, but is no longer used. At this point, this is the least number of lines in (and out) of Amelia since birth and this is great news because it greatly reduces the chance of infection. It also makes it alot easier to cuddle with her.

We met with an Occupational Therapist and discussed feeding strategies. We are planning to talk to the Conclave about the possibility of having Amelia transferred closer to home- perhaps Markham-Stouffville Hospital- if they anticipate the balance of her stay being more than one week.

I recently received another more chilling piece of information.

Yesterday, as I was being funneled/gouged in the SC cafeteria checkout line, Amelia2’s mother tapped me on the shoulder. I believe that in an earlier posting, Melissa had mentioned that there are actually two Amelias in the Cardiac ward at the present time and both were scheduled for surgery on last Tuesday.

Amelia2's mother told me that on the day of the surgery, she caught one of the nurses tagging her daughter with our Amelia’s surgical orders. That, of course, would mean that our daughter’s surgeon would have received incorrect marching orders as well. I found it ironic—only moments earlier, the cook had crossed my order up with….Amelia2’s. Go figure. An easy mistake I suppose, but it could have had dire consequences.

I wasn’t there with Amelia when they wheeled her into OR last week. This had been a promise I had made to her at the end of every late night visit throughout this whole ordeal. If something had happened that day, I would have been heartbroken. Melissa assures me that she would have caught this miscue but it really doesn’t make me feel any better about it.

Always arrive early for surgery, and write the patient surname across the forearm. Better safe than sorry.

So now reality is starting to set in. How are we going to handle life with such a full house? I keep thinking of something that blurted instinctively from my mouth the moment after Melissa and I realized that twins were on the way. They really are an embarrassment of riches and we are lucky to have them. All three.

Day Seven- Eat!!

Amelia
Today was a really good day. When John and I arrived in the PCCU, Amelia’s nurse was taking the last of her major lines out – one of her central lines and her arterial line. She had also been moved out of her Ohio bed and was in a crib again. All of this was a prelude to the news that she would be moving back to 4D shortly, which is the milestone we have been eagerly awaiting all weekend. Amelia was not happy with all of the work the nurses were doing on her, but when they were finished, we got the greatest reward: we were able to hold her for the first time since her surgery. Clearly this made a huge difference to Amelia because she promptly stopped crying and went peacefully to sleep.

At about 1:30, I help the nurse take Amelia upstairs and she was put back in the step-down, or constant observation, room, which is the room she first came into when she moved to 4D from the NICU. It felt like we had gone full circle. The fourth floor was like a breath of fresh air. There is a lot more hustle and bustle, a lot more happy faces, than anything we saw in the PCCU. It felt like real life.


A nurse-practitioner examined Amelia and was impressed with her progress. Amelia’s job now is to learn to eat for herself and to prove that she can gain weight. Right now, at nine weeks of age, she only weighs 2.1 kg (about 4 ½ pounds). Her brother weighs about twice that. Once she achieves those goals, she can come home; the nurse indicated this will be in a week or two. If she gets tired while she eats, she may have to come home with an NG tube, but I guess we can handle that. We may speak to the staff about the possibility of having Amelia transferred to Markham-Stouffville Hospital for the last part of her treatment because it’s only a five minute walk from our house. That would be nice.

We’ve made such huge progress in the last week. Amelia is pink, her vital signs are good; it’s hard to believe that her heart is actually working properly now.

Visitors

Amelia’s Nana (my mom) came to see Amelia for the first time since her surgery. She has spent a lot of time looking after Sarah, but Sarah went to daycare today. Uncle Jeff and Aunt Jen came all the way from Ottawa this morning to see Amelia and each got a chance to cuddle with her. They brought a toy lion for Amelia because she has fought all of this adversity like a lion. We couldn’t agree more.

Day Six- No More Funny Stuff

Amelia continues to do pretty well. She is pink and her vital signs continue to strengthen, which are all positive signs, but we are now entering a phase where her physicians will more aggressively push to wean Amelia off the balance of her pain medication.

We are somewhat concerned about tremors in her hands. These fits seem to cease when we touch her (thereby ruling out seizures). We think they started about a day after Amelia’s team reduced her Morphine doses, and so we suspect that she might be going through some sort of withdrawal. We will wait for the conclave to come to that conclusion tomorrow.

One thing is for sure, reviewing Amelia’s prescription records as of late is like snooping through Elvis’ medicine cabinet circa 1976.

Amelia is much more alert as each day passes, but she seems to find it difficult to settle down to sleep. Her beloved pacifier has been returned to her, which helps, but she is awake far too much for an infant who is recovering from major surgery. Is she in pain? Is she suffering from withdrawal? Is it something else? Who knows. Melissa and I have uncovered a few settling tricks – she likes to be sung to, she likes to have her head stroked and her bum patted – but she really likes to be picked up and cuddled.

But really, who doesn’t like any of these things?

She still has a few too many lines attached to be cuddled, but hopefully we can hold her tomorrow.

Amelia had many visitors today. Granma and Grampa Woodward came by to see her and so did Uncle Mike and Carmela (pictured above with brother Jack). Like the rest of the hospital on the weekend, the second floor was relatively quiet, since only emergency surgeries are done. The best part of visiting on the weekends is the parking; the worst part is it’s hard to find medical personnel other than nurses, who know everything anyway, to talk to.

This evening, the nurse has just informed us that Amelia will be moved back to the fourth floor, the Cardiac Unit, tomorrow after rounds. Let’s keep our fingers crossed.

Day Five- We Are Not Alone?

Amelia continues to amaze us with her progress so far. The big news for today is that she was extubated at about 9:00 p.m. We were hoping to be there when this happened, as it can be quite a stressful procedure. Unfortunately, the necessary team could not be assembled before the evening shift change, and we had to pick Sarah up at my mom and dad’s house. When I spoke to the nurse, though, she was pleased with how Amelia was coping. If her trachea swells, she may have to be placed back on the ventilator, but everyone we spoke to is quite optimistic that this won’t happen. I was told to bring clothes for tomorrow, so I’m hopeful that she’ll actually be able to get dressed, which will be a special treat for Amelia. Imagine wearing nothing but a diaper for two months!

John spent quite a bit of time with Amelia today. He helped Habiba, her nurse, to bathe her and do some other maintenance. She also had her Foley catheter removed, but I’m pretty sure no one let John help with that. Habiba was Amelia’s day nurse on Wednesday, and she couldn’t believe how much progress she had made. Habiba is from Lancashire, which is near Manchester (in England, not Scugog Township), and she really likes to talk, so I feel like I know everything there is to know about Amelia’s condition.

Actually, I find that everyone on the second floor likes to talk. During our six weeks in the NICU, I never had more than a thirty-second conversation with any other parent, and I always found that reticence to talk very strange. After all, we were all going through basically the same thing and could probably understand each other better than anyone else. Here in the PICU, people are happy to share their stories. I met a family today that I had heard about from a few other people. On January 4th they had twins, a boy and a girl. They were born at 34 weeks and weighed almost the same as Jack and Amelia. The girl has a heart defect, although not the same one as Amelia’s, and the boy is healthy. Their daughter is currently awaiting surgery, but is struggling to overcome a few other problems first. It’s amazing how many similarities there are between our situations.

(Melissa)

Day Four -- Eyes Wide Open

Amelia’s condition is improving. Both of her chest tubes have now been removed, and her medical team is working on weaning her off the ventilator. To give you an idea of her progress, one number on the ventilator, and I have no idea what this number means, was set at thirty just after her surgery. By the time John and I left the hospital late this afternoon, it was set at ten. (Actually, I just called the hospital – it’s 11:30 – and it’s now set at zero so she’s breathing on her own. The tubes won’t be removed until they’re sure she can handle this.) She looks much better without the chest tubes and the suspension system, both of which were rather grisly. She opened her eyes today and was awake while John and I visited, but she doesn’t seem comfortable. She doesn’t seem to be in a lot of pain, but she’s not exactly thrilled to be there either. In fact, she was awake for too long; the nurse was planning to give her some medication to help her sleep by the time we left. Aunt Karen also came for a visit and peppered the nurse with detailed medical questions. The nurse later asked me if Karen had any medical background. Anyway, all of her numbers are better today than they were yesterday, and John and I are both very pleased with her progress. We can only hope that she continues to improve and will be taken off the ventilator soon.

And how’s Jack doing? Jack, or, as I like to call him, Twin A, is doing very well. He weighed about 8 ½ pounds as of last Sunday, so he’s already doubled his birth weight. He’s starting to settle down a bit and become more predictable, with regular awake and alert periods interspersed with lots of eating and sleeping. This newborn period feels like it’s going on forever – he’s almost nine weeks old, but is only like a two-week-old baby. Last night, he decided to wake up at midnight and so wasn’t asleep again until 2:30. Then, he woke up to feed at 4:30 and, because of his cold, I didn’t get back to bed until after 6:00. Those of you who have older children are laughing heartily right now. I shudder to imagine nighttime parenting with twins. Will I ever sleep again? As I write this blog, Jack’s hanging out with Dad, who is dozing in the chair while Jack waves his hands around. I hate having to take him to the hospital every day, but that’s breastfeeding for you. Tamar came today to help us with Jack. She took him for a nice walk in the stroller, and he behaved quite well. She also brought us some very good bread.

Thanks Tamar!

Day Four- Cutting the Lines

I phoned Amelia’s room this morning and the nurse gave me some more good news.

Amelia’s respirator was turned down from 30 to 15 breaths per minute over the course of the evening. That means that Amelia is currently breathing ½ on her own.

As always, the medical team is cautious about this stage. They tend not to pull the kids off ‘cold turkey’ but typically wean them off slowly over a period of days. In alot of cases, kids are very slow to respond and spend weeks on ventilation.

This stage of the recuperative process can be very difficult, but Amelia seems to be responding well.

During rounds, the conclave has also decided its time to remove Amelia’s abdominal (drainage) tube. While this is a positive step, it means sedation will be increased for a few hours this morning. From what I am told, it’s a two second procedure, but its big enough that they prefer the patient be out.

We will keep you all posted.

Day Three -- Amelia's Progress

Things are still very positive.

Amelia

Amelia actually had two nurses today- one RN and one student. Both were busy throughout the day removing tubes, and dismantling Amelia’s suspension system. When I arrived, they had already lowered her morphine dose. Over the next few days, Amelia will be brought out of her sedation so that her reliance on the ventilator can be reduced and eventually discontinued. This, apparently, is a slow process, especially for a premature baby. She will have to be weaned off oxygen and learn to breathe for herself again, which seems ironic to me because she needed almost no support for her breathing when she was born. One of Amelia’s chest tubes was removed today; she still has another one to drain fluid from her chest cavity. The nursing staff changed Amelia's dressings during my visit, and so I saw her scar for the first time. It isn't exactly what I would call a beauty mark, but it is something that I have been told will fade with time. I consider it a medal of bravery.

I have posted a photo of Amelia without her bandages, so, if you’re squeamish, you might not want to look. But it really isnt as bad as you would expect.

The best part of the visit today was that Amelia opened her eyes for the first time since the surgery. I had a nice chat with her. I told her that she had been very brave and that she needed to continue to be strong. As I talked to her, I watched her heart rate drop to 161: a much better number than the 188 of yesterday. And as of this evening, her resting heart rate had dropped to the low 150s.

Support

Many people continue to offer their support. Melissa’s friend, Tamar Nelson, came in for a visit, hoping to help us with Jack. She didn’t know that Jack was home today with his cold. Don’s company, York Marble, sent a lovely basket of flowers and a Pooh Bear, which had to stay at the hospital or run the risk of joining Sarah's minion of stuff toys! As far as the flowers were concerned, I had to keep an eye on them throughout the day as the staff circled. But they do look very attractive in our family room.

Thanks again to everyone who has been calling and emailing with their best wishes. We really do appreciate it.