The New Floodgates of the Mind

Seeing as I didn’t get home last night, I figured I’d post both updates now 🙂 Luckily, as it seems we’re coming into the home stretch, these will be quite short!

Post-Op Day 10 Round-Up: Basically, Charlize’s medications were modified. She is now taking Lasix once a day instead of twice, and taking Morphine and Valium every 6 hours instead of 4. Outside of that, she’s feeding well!

Post-Op Day 11 Round-Up: For today, a few more changes. First, the Holter was hooked up on her to record her EKGs for 24 hours. Then, her Morphine and Valium were dropped to .35 ml from .5 ml. The current plan is to remove her Pacer wires tomorrow afternoon (plus decrease her meds to twice a day only) and have an Xray and an Echo on Wednesday (stopping all meds in the morning). Chances are quite good that we’ll be home Wednesday night. Here’s hoping!

She basically spent the day sleeping and eating today. It was very relaxing in that way. What made it a little stressful for me was the amount of noise/ volume going on all around us! Today, I must admit to having gotten very close to my “it’s time to get out of here” feelings. You know how it is. The longer you stay in recovery, the less the doctors and the nurses do or need to do for you. Which means, you spend a lot of time daydreaming about being in your own home…

She’s doing really well and even gained weight. She still absolutely adores when I sing to her and her favorite song (always makes her smile) is Strawberry Fields. Go figure 🙂

On another strangely related note… I’ve been wanting to post for a few days now that I finally found out/ remembered that my cousin is back playing for the Toronto Blue Jays. That’s right, Sal Fasano is back on their roster. Now, what makes this a little bizarre (and for which I can now finally talk about since it’s in the news) is that his wife is pregnant with their third son. A few weeks ago, it was discovered that the baby is going to have to undergo heart surgery shortly upon birth! How freaky is that? I found this post over on Fanhouse talking about it: “Family First for Sal Fasano”

Another incredibly good day today! 🙂

After an evening of not sleeping due to way too many noises and goings-on in the Ped.Ward (ending off with a weird-ass hallucinatory dream this morning), it was a really great day.

As I mentioned previously, I spent the night in the ward sleeping by Charlize’s bedside. I gave her a bottle of breast milk at regular intervals which worked out great as she drank very well. This morning I decided to up the amount and held her in my arms as I fed her. It felt great and she ate a lot more than she had overnight! Everything was going great (her taking her meds, eating, interacting, and we even took off her Oxygen Saturation monitor after removing her feeding tube!!!!) up until 930am. After her valium, her heartbeat got very erratic and her pacemaker kept going off but it wouldn’t really resolve what we saw on the monitors. I was sure the leads needed to be changed but the nurse didn’t think so. She knew there was an issue as she checked Charlize’s heartbeat and it was what was registering but couldn’t understand what the pacemaker was doing.

A call down to Cardiology and soon enough the head of the department herself (the woman who had discharged us last time as well as help us get the bloodwork done quicker) shows up and reviews the situation. Sure enough, she states that the pacemaker is acting weird and pacing whenever it felt like it. Since the sensors weren’t working well and Charlize “doesn’t really need it” she disconnected it!!

So there we were, heading into noon and Charlize suddenly had ONLY her regular monitor “stickies” on, plus the IV line in her left hand, and the pacer wires taped to her tummy! A lot freer to hold her! 🙂

The Doctor did confirm that the Holter test would take place on Monday with an Echo on Tuesday meaning we could potentially be leaving on Wednesday! This, of course, as long as there are no complications with the weaning off of the pain meds! Great news! 🙂

In the afternoon, Chantale showed up with my mom who immediately teared up at seeing Charlize. Tears of relief and joy to be certain as I know how difficult this ordeal has been for my parents. My dad didn’t come along today because he was not feeling well (plus being somewhat stressed about his own upcoming operation). James and Melyssa couldn’t make it today either because James ended up catching some kind of cough that hurt his chest and made him spit out phlegm. Sorry, can’t come and be around sick kids if you’re that sick. He felt really, really bad about it – especially after wanting to come see her from the moment she went into the hospital!

Anyhow, it was quite an emotional moment watching my mom stand by Charlize, watching her sleep while she held onto her finger. I told Chantale that she was thinking of my sister and Chantale answered that she didn’t think so – it was too long ago and why would she be thinking of that now? Sure enough, within 2 minutes, my mom started talking about how she wished they were as advanced in Italy as they are here so that I would today have another sister. I looked at Chantale and said, “told you”.

It’s hard not to think about it. My mother gave birth to her first daughter after 7 months of pregnancy. The baby looked fine except she slept a lot. A doctor came to their village and told her that the baby was a preemie and should be taken up to the city for care. They made their way there and put her in an incubator and for the next month and a half, my mother would trek to the city to see her baby. In those 90 days, my sister did grow and put on weight. However, every morning she was taken out of that incubator to be weighed. One day, she caught a fever which turned into bronchitis, and soon after… my sister was dead. My mother, today, staring down at her 2 month old granddaughter, could not help to remember seeing her own child at that age and losing her. Definitely something that scars a person.

Charlize was wonderful, though. Very much all smiles and bubbles for her Nonna which made it a very nice visit. Afterwards, I drove my mother home, spoke with my dad a bit, and then came back to the hospital. Chantale and I chatted, worked on a crossword puzzle together, and took care of Charlize when she was awake. Chantale even got a couple of chances of breastfeeding Charlize and it was a really special moment to see. (Go ahead and shed a tear, Alex, I know you will 🙂 ). Yes, there will be pictures one day.

Like I said, it was a really good day. To top it off, our favorite ward nurse, Alissa, was our nurse tonight so I know Chantale will be well taken care of 🙂

I got home and within minutes my sister-in-law showed up. Once her dad left, we cracked open some Coronas and talked for hours 🙂 It’s so great having her here that when she’s not around, it seems a little strange! Of course, as you can see, the time was getting late and we do have to head to the hospital tomorrow so it was time for me to post this and get some shut-eye!

It’ll be great to have my family home again! Soon!!

Since I’m not going to be home tonight, I figured I’d put up a quick post this afternoon.

I went to visit Charlize at lunchtime and she was happily being entertained by her Grandparents. Grandpa even got a Happy Birthday smile 🙂

It’s very reassuring to post that she’s sucking on her pacifier. That’s such good news, even to the level of her having slept all night! Her eyes still cross a little when she gets tired, but she’s otherwise quite good. We can see the hints of our daughter in her eyes again!

I think we’ve mentioned before the drawbacks of being in the Ped.Ward versus ICU… but it just seems so much worse. You’re literally left to fend for yourself with the feeling that the nurses are there more to simply feed you your meds (either religiously and to the point, or haphazardly). Any deviation from that and they scowl. And don’t touch or look at their equipment, even IF your baby is hooked up to them and is being monitored by them.

Unfortunately, I don’t take that kind of attitude very well. I’m quite happy to be the sole caregiver for my child and if that’s the case, then let me go home where I can take care of her in comfort. Anyhow, we’ll see how my overnight stay will be. I’m just not as friendly with folks acting like jackasses, especially when they’re charged with ensuring my child’s comfort.

So, anyhow, there you go. She seemed to be good at lunchtime and I’m hoping/ expecting more improvements this weekend. Tomorrow, I’ll be picking up James and Melyssa as well as my parents so they can come for a quick visit, too.

I’m still amazed at how fast time flies in the ICU. It’s quite shocking to be in the general Pediatrics Ward now because that “fast time” isn’t there. So, you do feel the time go by. Anyhow, here’s today’s update.

We knew we were to be transferred to the ward this morning but Charlize wasn’t doing too well in ICU. According to the Pain Specialists, she was suffering from a classic textbook example of Sedation Withdrawal. She had not slept in a long time (I would say anywhere between 24 and 36 hours), was all jittery with the shakes. She spent the entire morning just wailing in pain and nothing could soothe her or calm her down (including her pacifier). The Cardiology Nurses affirmed that they have seen a number of babies go through the same withdrawal symptoms and that they all go back to normal after a couple of days.

To help with the pain and discomfort, they were giving her Morphine, Valium, and Tylenol every four hours. She had become so agitated that she seemed to have “forgotten” how to suck. Thus, her pacifier no longer calms her and obviously no breastfeeding. In fact, they’ve had to put in a feeding line so she can get some food because the small amounts she had been taking yesterday was not really enough.

I went to the hospital at lunchtime to find that Charlize hadn’t been moved to the Ward yet because they had been having a devil of a time trying to get an IV in her (poked and prodded four times without success). I sent Chantale away so she could take a break since the ICU was worse than yesterday which meant that she had been alone with an inconsolable baby all morning. I held onto Charlize’s hands and managed to get her to stop screaming. While talking to her, I noticed that her left eye had shifted and she’d become cross-eyed. Another symptom of the side-effect of the withdrawal.

Afterwards, I ended up holding her down while the Fellow tried, unsuccessfully to get another IV line started in her left foot. And then, again, the Nurse tried in the same foot at a different spot when the Fellow was pulled away on an emergency. After a LOT of trying and screaming on Charlize’s behalf, she was successful albeit with a lot of blood spilled due to shaky hands and nervousness.

I worked to calm her down again and then we inserted the feeding line. Not pretty. Again, after I soothed her, Chantale reminded the nurse about the baby’s meds and she prepared them. I administered the valium and, happily enough, Charlize finally fell asleep. At that point we all took a break. The Nurse left for her lunch and I headed out to get some food for Chantale and myself.

I headed back to work and went back to the Hospital at the end of the day. We are now settled in the Ped. Ward and Charlize slept all afternoon. In fact, she was still sleeping when I left at 9pm. She’s not running a fever and the nurses are getting in the swing of her routine. Chantale spoke with the Pain Specialists who explained how they were going to monitor the baby to ensure she’s properly weaned. They’ll assess her daily and see, after a 24 hour period, how she’s doing and the next steps to take. We *were* warned that this could potentially be a long battle (up to 10 days!). We’re hoping it won’t take that long.

We do know that a Holter exam is scheduled for Monday (basically, a 24 hour ECG to confirm she’s not having any arrhythmias) followed by an Echo on Tuesday. If she’s doing well (and the withdrawal stuff is done with) we’ll have the pacemaker leads removed from her and we’ll be able to go home. That’s what we’re concentrating on at any rate.

In the meantime, we’re not leaving her side. The big difference between ICU and Ped.Ward is that there is 1 nurse to 4 beds. They’re just not there very often. It really falls on the parents to fully take care of their kids. So, Chantale is taking tonight’s shift since I have to work tomorrow, and I’ll be taking Friday night’s shift. James is adamant that he and Melyssa come to see Charlize so I’m trying to work something to go pick them and my parents up on Saturday to bring them over for a visit.

Of course, everything depends on how Charlize is doing tomorrow.

On the funny side of life, I came home tonight to find my driveway had finally been paved. I wonder if I’m allowed to wait 3 months before giving THEM the first payment for it? You think they’d like waiting 3 months for me the way I enjoyed waiting 3 months for them? Hm?

By the way, I really wanted to thank everyone for their replies and posts to my and Chantale’s entries. I know you understand that we barely really have time to reply to them, but we truly and honestly appreciate ALL your comments, thoughts, prayers, well-wishes. Thank you SO much for taking the time to reply. Your support really means a lot to us.

Today was another good day! Great, even! 🙂 So much happened that I don’t remember exactly!

Firstly, we showed up and there seemed to be a lot more of her. It took us a moment but we realized that her catheter had been removed overnight as well as the tube which was helping to keep her stomach empty of acid. Plus, since the physical respirator machine had been removed, there was more space for us to be around her bed.

Before we knew it (but hours in reality) her arterial line was removed (painful, but it freed up her right hand) and then so was her central line in her neck (much more painful).

With all these changes, her bodily functions were back in full force which lead to my being able to hold her for a bit while we changed her bed 😉 Along with the usual help of being able to give her medication, today, I also gave her her first ounce of expressed breast milk! And then, best of all, Chantale was actually able to hold her and feed her for a little while! True, the sensation wasn’t the same, but then again how could it be with all the wires still attached to her? 🙂 It’ll be a little rough going as Charlize first regains her appetite and secondly regains the habit of breastfeeding.

But, it’s great that she’s pretty much on her own now. She’s not being fed intravenously, she’s not being given oxygen, she has no extra lines or tubes inside her! All that’s left is a regular IV hookup in her left hand for administering medication if required. Again, another step closer to taking her home!

Today was an incredibly intense day in the ICU. Pretty much packed to overflowing at the point where we were almost expecting to be sent down to the Ward already. However, before that happens, Pediatrics there have to come to an agreement with ICU in regards to handling Charlize. So, it may be tomorrow that we go down, just as it may be Friday. We’ll play it by ear – the same as we do every day.

Chantale’s mom managed to organize a delivery of Schwartz’s smoked meat (for about 25 people!) to be delivered to the ICU today as a gift from Charlize. To say the folks there were appreciative would be to not give enough weight to how happy they were. One guy basically told us that had there not been food today, he would not have eaten. On 12 hour shifts, you can imagine what that means, especially for the staff there who took no or little breaks (many of the nurses were handling two patients and helping out on 3 or 4 others). It was insane. They were all so touched, and we were just so very happy to help out. They’ve done an incredible job in taking care of Charlize (and us), it was the least we could have done.

Now, I’m almost certain I’ve forgotten something about today, but if so I’ll remember tomorrow 🙂 I’m quite tired again and since I’m heading to work tomorrow morning, Chantale will pretty much be by herself for most of the day. You know, I must say something else. It’s pretty incredible to think that we’ve been spending 12 to 14 hour shifts at the hospital lately (as opposed to some of the 20+ hours of Pre-Op) and it’s amazing how quickly the time flies. I could never imagine a regular day at work basing THAT quickly, let alone 12 hours of it! 🙂 It’s just amazing what kind of a rhythm you can find yourself in while at the ICU…

After the shift change tonight, I spent a good while trying to calm Charlize into a lull so she could finally fall asleep. She had not slept since the time she woke up this morning! Talk about fighting the sandman! 🙂 In the end, I was leaning close to her on the bed, fingers of my right hand holding onto her right hand while my palm warmed her head, my left hand held her left hand while the fingers of my left hand held her pacifier in place, and I sang and hummed Beatles songs to her. No regular lullabies for my daughter! 🙂 And, pretty much like her brother at that age, she prefers the Lennon tunes more to the McCartney ones 🙂 Unfortunately, every time she got close to falling asleep, having closed her eyes and her breathing slowed down, a machine would go off and wake her up. Sigh. 🙂 Still, it was just so heartwarming having her just stare back at me for hours on end…

Lots of excitement today, but really very little energy to write about it! We spent the entire day at the hospital and we might be extremely tired right now (heck, Chantale is already asleep having fallen asleep on the drive home) but we’re also quite ecstatic, too.

Firstly, the most important news: Charlize is awake, alert, and breathing on her own! That’s right, the respirator was finally removed today after all her medication was slowly weaned from her. In fact, right now, the only thing she’s receiving is an IV. She’s slowly getting her voice back and should probably be sounding like normal tomorrow. Her last chest tube (on her ride side) was also removed which made us very happy.

She spent a lot of this evening staring at us, sucking on her Horsie pacifier, and had even started to respond a little to our talking to her 🙂 There was one little moment of a minor arrhythmia issue, but it was regulated with a pacer-pulse and the hiccup was all gone.

We do expect everything to continue being well and stable overnight and into tomorrow. She is quite hungry but we can’t feed her until we know for sure she won’t need any intervention (it’s a regular precaution regarding CO2 in her blood).

So, seriously, we’re one step closer to liberation! 🙂 Today was a very good day, indeed 🙂

I spent the day with Kyle today, basically enjoying a leisurely Labor Day while Chantale spent it at the Hospital with Charlize.

It felt weird not seeing her, but considering how much time I spent looking at photographs and videos, I can still feel her in my heart so I’m not missing her as much as I probably could 🙂

There has been some news, though. After a very quiet night, she had a bit of a racing pulse this morning for about half an hour (at 160). But then, it all went back to normal. During the day, they slowly stopped giving her two more drugs (the ones she had been taken off of a couple of days ago) in an effort to begin getting her ready to wake up and remove the breathing tube.

This afternoon, they also removed the chest tube from her left side, still leaving the right side in. Those suckers are painful so it’ll be great when she’s finally free of them. With that big event out of the way, we’re simply waiting around for her to slowly come around. The ease and speed at which anyone does this isn’t a given (could be a couple of hours, could be a day) but, again, it’s encouraging to see the progress being made.

Bit by bit more tubes will be coming off and we’ll be able to interact with our baby again. I don’t know how to properly convey the feelings of anxiety and anxiousness with which we await that moment. I know how hard it is and has been for Chantale to be away from Charlize – especially how she’s missing the skin-to-skin contact that comes with breastfeeding. At least she can be at ease while at the hospital knowing that Kyle is not being deprived in any way and having a blast with me 🙂 Taking care of him is also quite helpful and healing for me. Boy do I miss him when he’s away…

So, tomorrow, I get him ready and take him to his guardian’s. Then, I head down to the hospital and spend the day with Chantale and Charlize. Considering my work commitments, etc, Chantale’s parents will be picking Kyle up tomorrow night and he will be staying with them for a few nights. It’s only been four days since the surgery, and yet it feels BOTH longer and shorter than it is. Kind of hard to think of anything else, really…