We are finally home!! Dave and I had to do a little convincing to get the green light this morning, but it wasn't hard to get the team's blessing. We arrived at the hospital around 9:00am and were home by 8:00pm. The trip went pretty well all things considered. Viv only cried when it was time for her 6:00pm feed (which we successfully administered at a rest stop) and when we were only a few miles from home. She slept most of the trip, but she was taking in her new surroundings during her calm awake periods.
She was asleep before we even got out of the parking garage.
She seems to enjoy the house and her room so far. We had to rush to get her 9:00pm feed ready soon after we got home. We also gave her a bath which she seemed to enjoy. Thankfully her eyes were closed as soon as she hit the crib. The one positive of having a NICU baby is their schedule. Viv has been sleeping through the night for a while now and only stirs every three hours when it's time for a feed, though lately she's needed to be woken up. She's also very used to noise which means we don't have to tiptoe around the house too much.
So here we are at the end of our NICU journey. I was getting emotional as we walked through the NICU doors for the last time. It's been an intense experience, and we are so grateful for the dedicated nurses and doctors at CHOP. Six months ago we were told our baby had a 40-50% chance of survival, and we decided to uproot our lives to make the most of those odds. It's been difficult, but we can honestly say we have no regrets.
Dave and I would like to thank everyone who has supported us throughout this process. Viv's story isn't over, but we've come a long way. We'll be back at CHOP for follow-up appointments and will be working on her feeding and development while simultaneously monitoring any lingering or new issues related to the CDH. We will continue to post periodically to let everyone know how Vivienne is progressing and how we're settling in. Thank you for coming along with us on this journey; we felt your love and found strength in your support. We hope you'll continue to follow Vivienne's progress as she grows.
Peeking over her blanket during a bouncing session. Mom and dad are going to have some big muscles.
Overall Vivienne had a pretty good day today. She enjoyed prolonged calm periods with a few fussy moments mixed in. We are currently considered to be "pending" for discharge tomorrow and feel pretty good about our chances. Viv did end up having one of her meltdowns this evening, but the general consensus seems to be that these episodes are related more to colic-induced discomfort rather than withdrawal. Regardless, it makes the team uncomfortable to see her so distressed, so we'll have to wait and see if they'll end up letting us go. She's definitely going to be a handful while she gets over this colic, but we know she will be happier at home - and so will her parents!
Vivienne had a better day today, but she still spent a few hours being very upset. It's pretty apparent that she is colicky and is still dealing with withdrawal symptoms (which makes her less able to reign in her emotions when she feels the discomfort caused by the colic). The team was originally planning on a Friday discharge but decided to push the date back due to Viv's continued distress. They want to see her improve before they send her home. Dave and I are a little annoyed since there's nothing that can be done for her here that we can't do at home. Plus we just think she'll be happier once she's out of the hospital. The team wants to ensure that there isn't another reason for her distress. This is very unlikely, but I suppose we can't blame them for being extra cautious. We are just beyond ready to get out of here.
Sorry for the lack of pictures lately. Viv has been keeping our hands full these past few days and hasn't had many photogenic moments. Hopefully I'll be able to capture a smile again soon!
Well, the good news is that Viv is still morphine free. The bad news is that she isn't really feeling any better. Today ended up being nearly identical to yesterday. Viv is just very uncomfortable, and she clearly feels terrible. It's a full time job to get her to calm down, and it doesn't take her long to work herself back up again. All we can hope is that she is exhausted enough to sleep through most of the night.
The team is currently looking at Friday for discharge but noted that Viv will have to be in a good place before they will feel comfortable letting her go. I'm not very hopeful based on her current state. Maybe she'll turn the corner tomorrow, and we can get out of here. If not then we will be extending our stay until she improves.
It's been a very long couple of days, and we're emotionally and physically worn out. Hopefully tomorrow will be better for all three of us.
Allison and I got married three years ago today. Around 7pm as we were rushing back from a quick meal in the hospital cafeteria to try to console our very distraught 8-week-old daughter, Allison joked that this wasn't the way she had ever envisioned spending our anniversary.
The good news is that in the big picture everything is really, really good. Viv is almost off of morphine. Her lungs and heart are in better shape than we ever hoped they'd be at this stage, to the point that we don't worry about them too much anymore. Last night Viv took 46(!) mls of breast milk from the bottle during one of her feeds and today Allison locked in our pediatrician-to-be.
We've got other things to be thankful for as well. Our first three years of marriage have been awesome, and despite facing some pretty significant challenges we are more connected and in love than ever. We have wonderful friends and family, and this past year has given us a great appreciation for how important that is. We have a great employer that has worked with and supported us through everything, something not terribly common among our compatriots at the Ronald McDonald House and in the NICU.
So we've got a lot going for us and we recognize that. Today was rough; however, and we're tired of being here and having to do stuff like this for hours in an effort to keep our daughter from spiraling out of control:
Viv has issues with gas, reflux and morphine withdrawal. The combination makes her uncomfortable and occasionally inconsolable. We are working hard to get her off of the morphine and one of the things that usually works is lifting her straight up and down. You can see from the video what happens when we try a different, less exhausting position.
That was our evening from about 5:00 until we left the hospital a little after 9:00. Allison and the nurse held down the fort when she was fussy/crying while I was at work. Allison estimates that she cried, fussed, or screamed for at least 9 of the 12 hours we were at the hospital today. The good news is that we were generally able to console her even though it took a lot of hard work. Viv finally settled down before we left and didn't end up needing a rescue. If she makes it through the night without one she'll be in the home stretch - her last rescue was at 4pm yesterday and they say it takes about 48 hours for morphine to be out of your system. Even if she does end up needing a rescue it will probably be her last one, given how close she got this time. The end can't come soon enough for us; it's unbearable to see her like this.
So all in all things are going extremely well for us here, in spite of having an exhausting and less than perfect day.
Vivienne continued to make good progress on her weaning today. As we expected, she ended up needing a rescue last night around 7:30. The good news is that she was able to make it about 21 hours before melting down and needing a fix (and boy did she ever meltdown). Hopefully she will be able to make it further and further each time until she successfully kicks the habit.
Viv also got a follow-up echocardiogram this morning. The detailed report wasn't available today, but the preliminary results look fabulous. She'll probably need the minimum amount of cardiac follow-up, which means no additional tests for at least six months.
We didn't get a discharge date today, and I don't really expect them to make any promises. The two main issues keeping us here are the drugs (the biggest hurdle), and the reflux (they want to make sure her new medicine is working). It would be nice to know when we're getting out of here, but it's hard to predict since it all hinges on Viv's ability to tolerate a morphine-free existence. Regardless, we know we're closer today than we were yesterday, and that's better than the alternative.
I had a lovely first Mother's Day thanks to my wonderful husband and my sweet daughter. The day started off with flowers from Viv and a gift card from Dave. I wasn't really expecting anything, but Dave snuck off yesterday to get a hair cut and apparently ran a few covert errands. A few surprises were waiting for me in the NICU as well. One of the nurses made a cute sign on Viv's behalf and Dave strung up an adorable "I <3 Mom" banner after I briefly stepped out of the room. I'm so lucky to have such a thoughtful husband, and I'm especially lucky to have my beautiful daughter.
Speaking of Viv, she had a pretty great day. She needed a rescue around 8:30 this morning but was very pleasant during our entire visit. We're assuming she'll need a rescue at some point tonight, but maybe she'll be able to gut it out. Either way we're very pleased with her progress. Overall the day was filled with love and lots of snuggles, and I enjoyed every second.
Happy Mother's Day to all you wonderful moms out there!
Viv's last regular dose of morphine was administered at 6:00am today! She'd been doing so well since they switched her to the 12 hour schedule that the doctors decided that it was time to start the last phase in her weaning schedule, which is to provide half-doses when necessary until she doesn't need them anymore. The nurse practitioner stopped by in the afternoon and told us that they'd give us a discharge date on Monday, so the end of our NICU/Ronald McDonald House days are in sight!
Most of the day was pretty normal. She's doing OK with the bottle but isn't anywhere close to where she'll need to be before we can get rid of the feeding tube. Fortunately, I passed my feeding tube removal and replacement test this afternoon. The hardest part was getting the layer of tape that goes over the tube into place after you've threaded the tube through her nose and down into her stomach. Allison held her down while the nurse talked me through it. Afterwards I think we were all a little worn out.
No more white tape mustache!
The nurse practitioner informed us that they are switching Viv's reflux medicine from Zantac to Prilosec based on the results of her GI study. Prilosec is usually more effective, so we're hopeful that it will help further reduce her reflux symptoms. Everything else with regard to Viv's upper GI function and structure looked normal.
Around 7:00 Viv started to get really fussy. She would have received her morphine at 6:00 on her old schedule and by 8:00 it was pretty clear that she needed a rescue. She didn't meltdown but she wasn't happy and her heart rate was a lot higher than normal. After the rescue, Allison and I traded off bobbing, rocking, swinging, and bouncing her for about 45 minutes until she got calm. Then Allison held her for another hour before she was ready to go back in her crib so that we could leave. A week ago this sort of thing was pretty upsetting for Allison and I but now that we're so close to the finish line and are used to the weaning process it isn't as bad.
We're expecting a rough day tomorrow (day two after a wean is usually the worst), but we are excited to keep moving forward!
Another look at her beautiful face without all of the silly tape that the NICU nurses love to use.
We're back in Camden after a short stay back at home. It was amazing to be in our house again, though of course we missed Vivienne. Our visit was a productive one, and we are officially ready to bring our little girl home.
While we were away Viv's team continued to wean her morphine. Overall she's been doing really well and only needed one rescue dose. The nurses did an amazing job keeping her happy during our absence. She's currently getting morphine every 12 hours, and she may be cutoff completely (except for rescues as needed) as early as tomorrow. Discharge will be on the table once she proves she can go at least 48 hours without needing a rescue.
In other news, Viv continues to work on her feeding and is getting better at it every day. The quality of her feeds is very good; she just isn't taking very much. It seems like the reflux is the main issue when it comes to quantity. She does really well at first but then stops as soon as she refluxes and is in pain. We traveled up to fluroscopy today for an upper GI study. Viv consumed some barium so the doctors could observe her function and the extent of the reflux. We haven't received detailed results yet, but it sounds like everything is working like it should and the reflux is definitely present but isn't a cause for major concern. The team will continue to monitor her reflux and may end up trying another medicine in place of the Zantac if they feel it would be more effective.
It's looking more and more like we'll be heading home for good sometime next week. We are so excited to bust Viv out of here. She's changing so much and growing so fast - we can't wait to expose her to life outside of the NICU and make up for lost time!
Remember that time I kicked you, scratched your chest with my claws, and screamed like a demon in an hour-long fit of withdrawal? Yeah, that was pretty funny!
Viv has basically had the same day for the past three days. She sleeps all night and morning, is awake and vacillates between calm and fussy for most of the afternoon, freaks out and needs a morphine rescue, and then settles down. Her freak out yesterday occurred approximately half an hour after we left the hospital (and so wasn't included in yesterday's blog update). Today it happened a little after 2:00, probably as a result of her morphine dose being administered a little late.
That's Viv a few hours after her episode. Amazing what a fix can do. I'm back to working remotely full-time so I wasn't around for today's meltdown, which meant Allison had to endure it all without a tag-team partner. The photo caption describes what happens during these episodes. One of us holds her in a variety of positions (none of them effective) while she lashes out in a fit of anger and screams at the top of her lungs until her voice starts to go. This usually lasts for at least a half an hour but usually more (it lasted about an hour today). By the time I clocked out from work and came down to the NICU Viv was back to being adorable. Mom on the other hand was looking exhausted.
This is probably our last blog entry for a couple of days. After our hospital day tomorrow we are headed home for the first time in over two months. I need to be there for work and Allison is going to get a few things ready for Viv. We'll return to Camden on Thursday night. Unless something momentous happens while we are away from the hospital we won't be posting again until Friday. Hopefully we'll be able to report that Viv has graduated to the final stage of her weaning plan when we return!
Not a very eventful day for our family, which is perfectly fine. Viv got close to her bottle feeding record on two separate feeds this afternoon. She was a bit more calm today than she was yesterday and didn't need any morphine rescues (at least as of 8:30 when we left the hospital). She had two minor freak-outs, but we were able to calm her before she went completely haywire. If she has a good night we suspect that they'll wean her morphine to every 12 hours (currently at 8), which is the last step before she's done with scheduled doses. We're almost there!
Allison and I had a very nice day with Vivienne. She lost her umbilical stump yesterday and can now be submerged in water so we got to give her a proper bath. I held her in place and lifted her while Allison washed. She didn't like it much at first, but once Allison started washing her hair she stopped crying and really seemed to enjoy herself.
This is Viv getting dried off. No tub pics as we wanted to get her in and out as quickly as possible to stave off a potential meltdown.
We thought the headband was adorable; Viv was a bit more skeptical.
They weaned her again today - from six hours to eight hours between morphine doses - and she was a little cranky but did really well during the day. She still has issues with reflux but the antacid that they put her on seems to be helping. Her main sources of discomfort now are the weaning and anything related to digesting food. We're learning different techniques for holding, patting and bouncing her to calm her down, depending on what it is that is making her upset.
In the early evening, just as we were about to leave, Viv had a massive meltdown. It was pretty clearly withdrawal-related so they gave her a small "rescue" dose of morphine that helped but didn't completely calm her. Allison handed her off to me while she pumped and Viv wailed for just about the entire half hour that I had custody. I fled to the back to wash the pump stuff and by the time I got back Viv had stopped crying thanks to Allison's efforts. She's got the magic touch. Mom spent the next hour holding, rocking, bouncing, and talking to her until it was clear that her fit had passed and we could leave her in peace.
Vivienne's team gave her a day off from the sedation weaning schedule. She seems to have leveled out well from yesterday's wean and only had one mini-meltdown. Overall she thankfully had a happy and comfortable day.
In other news, Dave and I completed the required feeding tube class this morning. The instructor was great, and we feel pretty confident that we will be able to place and maintain Viv's NG tube at home. We just have to place the tube before discharge to prove that we can do it competently and safely. Obviously the thought of sticking a tube down our daughter's nose and throat is kind of scary, but it must be done - and I'm glad our first attempt will occur under the nurses' supervision.
Now banish those unpleasant NG tube-related thoughts with this video demonstrating Viv's much improved pacifier skills:
