Sunday, April 26, 2009

Brave or Stupid and Crazy

It has been almost 10 months since I last attended all three hours of church, at first I loved only going to Sacrament meeting (I'd be lying if I said I didn't) but I realized I was missing it more and more with every passing month. Don't get me wrong, staying home with Gracie (when she was home) and protecting her was so much more important. Even on nice days, Jason would beg me to take her to church, even just Sacrament meeting and I refused, we either rotated every week or Jason's mom would come and watch Grace for us. Anyways...for the first time, we took Gracie to Sacrament meeting on Easter and she did great. We sat in the back corner, right where the accordion doors are, so no one would sit behind us. How wonderful it was to be together all four of us at church.

Jason and I talked and thought that maybe we might be able to take Grace to all three hours and attempt to go regularly. Well today we tried to stay for all three hours and it was so nice and Grace did great. Each class we sat in the back corner away from everyone. Whenever we went in the hall, Grace was in her car seat and covered. Since I'm new to the Ward, during Relief Society I was asked to introduce myself and I did---I also told them all why I sat in the corner and asked them to stay away if they had any signs of a cold and all the sisters seemed to understand.

I know we are still in the tail end of RSV season but there comes a time when you have to attempt to resume some type of normalcy. Plus I really have been needing the strength, uplifting spirit that comes from attending church and really focusing three hours on my spirituality. Though I try, it is so hard to devote time to reading scriptures and praying at home with Morgan and all of Gracie's care. By the time they are in bed and things are ready for the night, I crash--without fail I fall asleep praying in both my personal prayers and when I pray with Jason.

Hopefully Gracie will stay healthy and not catch anything and we can continue to reap the benefits of attending church---even Morgan was excited to be able to attend Nursery and play with friends for the first time in months.

Tuesday, April 21, 2009

A long update



Finally....both Gracie and Morgan are asleep for their naps and I am hoping that they will stay asleep for a while, they both need it.

I thought I would take this time to attempt to update the blog and share how being home for 2 1/2 weeks have been. It was rather bumpy in the beginning, in some ways it was worse than bringing her home the first time, but in other ways this was nothing compared to October. However, Gracie definitely 'bounced' back quicker than I thought she would. Its hard to imagine that she was just in the PICU two weeks ago, looking at her now she looks great!!

We just had a cardiology appointment yesterday and our cardiologist is very pleased with where Gracie is and where she is going. Her chest x-ray looked amazing, it was so clear you could almost see the details on the coils and wires in her chest :) Of course they want her to be on less oxygen and she seems to be tolerating the weans I have been making, she came home on 1 liter, has been on 3/4 liter for the last few days and an hour ago I dropped it to 1/2 liter and she is tolerating it great even while she sleeps. But I don't think the day will come where we can get rid of the oxygen permanently--if she pushes it out of her nose, her sats drop to the 60's so quickly. Even though oxygen is a tricky thing to live with, it is the least of our worries.

We go back to cardiology in a month and then we start the major wean off of Gracie's beloved diuretics. Hopefully she'll do better now that she is so far out from her surgery. We were given the ok to switch back to fat containing formula!! We are slowly working our way back up to 27 calories, I hope that she can tolerate it because we really need to get her growing. Gracie only weighs in at 6.02 kilos, that's just a little more than 13 lbs. Which don't get me wrong is an ok weight, but she is quite long, so she just looks so much skinnier.
Gracie still has her NG and lately has been getting most of her feeds through it. Last week before we went in to have her broviac removed, she was orally feeding all of her daytime feeds, but I don't know what happened, she digressed and has only been drinking 30cc, if we are lucky. Hopefully it is just because she is teething or something and she will start eating more, she really seemed to enjoy it. For the most part she did great, she would spit up some, but I think it is just because she isn't use to getting fed that fast, so we are working her tube feeds up in how fast they go through.


video

I have been letting Grace mouth different types of foods and she seems to love it. I'll give her bitter biscuits or animal crackers and she will chew/suck for a while and even leave a remnant on her shirt! Sunday she got to taste lifesavers and some fresh pineapple and couldn't get enough. I think I will try some baby cereal in the next few days.

Still no full out giggles but whenever we play I can hear whispers of them and it just melts my heart, I just can't wait to hear that sweet little laugh. No cooing either, but she sure tries. Occasionally she'll let out a little 'ahhh' and I think it surprises her. Gracie is so happy and full of smiles these days, all you have to do is smile big at her and she'll give you this humongous smile. Even when she isn't feeling well we get smiles, but they are the tight lipped smiles that you can tell she is just trying to appease us.

Physically Gracie is doing well too, we are back to where we were pre-surgery. Gracie is grabbing her feet and even trying to suck her toes. She rolls to her sides, but just won't roll onto her belly. Tummy time can be tolerated for almost 10 minutes before she lets us know she is done. I have sat her in the bumbo and in the high chair and she even tolerated that well. She still has very little trunk control and no desire to put any type of weight on her legs....but she will get there, I know she will.

Morgan and Grace are best friends, Morgan tries to play with Gracie and Gracie can't take her eyes off of Morgan. The other day instead of saying we were going to the doctors, I accidentally told Morgan that I was taking Gracie to the hospital. Morgan got a concerned look on her face and said no, Gracie no stay there. Morgan is a great big sister and loves and adores Gracie.



I was making dinner last night and went to check on the girls only to find that Morgan had dumped the basket of diapers all over Gracie. Grace doesn't seem to mind though.

I know this is a long post, I'm sorry. I just needed to get all the updates out there. I should go, I'm debating closing my eyes or folding laundry before someone wakes up.

Thursday, April 16, 2009

Cardiology...A love--hate relationship

I have been meaning to post an update on how we are doing at home, but have had no time, that post will come within the next few days. But for those of you who may need a Gracie fix until then enjoy this little video.

videoI don't think she is enjoying it as much as I am, but she did try to laugh, hence the hiccups.


As many of you other heart families may know, these little ones get addicted to some major narcotics and as a result must experience detox and to help them wean off of the narcotics they are given other controlled substances to help ease withdrawal. Anyways, Gracie again came home on an ativan/methadone wean, slower than they typically try to wean, but faster than I think is really necessary... Well Gracie has been struggling with the wean, so I have slowed it down with the advice of our family doctor, as a result we have run out of the liquid life saver since the docs only prescribe the exact amount with no refills.

Wednesday I realized that we were very close to being out of methadone and didn't know what to do. Our doctor is out of town, so I couldn't call her office, so I called Cardiology up at Primary's, I left a message and waited. No return call, so first thing this morning (8am) I called again and spoke to the receptionist. I explained that we HAD to slow down the wean because Gracie was having severe withdrawals--increased vomiting, diarrhea, and fevers once we went from three times a day to twice a day. I told her that this morning I used every last drop and it still wasn't enough to equal the does she was getting. The receptionist told me she would mark the message as priority and that I should hear back within an hour or two from the nurse, once she got in. I asked if she wanted to know where we were on the wean process, but she assured me that the nurse would find all that out.

So I waited and waited, finally around 3pm I called again, I spoke to another receptionist that wasn't too helpful. She checked the notes and I guess the nurse was waiting to hear back from the cardiologist to know what dose to prescribe. I asked why I never got a phone call and the receptionist said that the nurse must have been waiting to hear from the cardiologist. I explained that it didn't make sense because how was he to know where we were on the weaning process, especially since we slowed down and deviated from what was prescribed. The receptionist assured me that the cardiologist would know since he could look back at Grace's discharge orders---stupidity if you ever asked me---unless the cardiologist is psychic too---he isn't going to know. So I explained again that Grace had no more methadone, that she is highly addicted and extremely aware of when she is late with doses (ask any nurse who has ever worked with Grace). All the receptionist could do was tell me that hopefully I would hear from someone today.

Well 5:30pm rolls around and nothing, so now I'm freaking out, I have 2 1/2 hours to figure out what I'm going to do. I thought, well I could increase her ativan dose, try to knock her out with Benadryl all night and get through till morning. I called our home health nurse for advice and suggestions, because she is wonderful and knows so much and she said I could increase her ativan dose if I had to but that I should try calling again and ask to speak to the cardiologist on call. What brilliancy, because, within 5 minutes I was talking to a cardiologist, who understood the urgency of our situation. He wrote the prescription and was even going to fax it down to the pharmacy, but because it is a controlled substance I had to go up to get it. It now being 7pm I had to get the prescription and fill it all as close to 8pm as I could. So I left home rushed up to the hospital (about 45 minutes away), waited about 10-15 minutes for the cardiologist to meet up with me and rushed back down to the pharmacy to fill the prescription which took 30 minutes.

I am pleased to announce that I went to Primary's and back in 1 hour and 15 minutes, got the prescription filled and had it in my little Gracie's stomach by 8:30pm, only a half an hour late! I'm super mom! So I love the cardiologist that we get to work with, but absolutely despise working with the clinic over the phone, they need to learn how to better assist and help their clients....lesson learned--if you need to speak to a cardiologist, just wait till after hours!

Monday, April 6, 2009

Home and loving it

When the day finally came that we got to bring Gracie home, I wanted it to be a surprise for Morgan, so we didn't tell her and got Gracie all settled and then brought Morgan home from Grandma's. This video is Morgan's reaction, its almost two minutes long, but I don't have the time or the energy to edit right now...sorry.

video



Being home is wonderful, but oh so difficult. Gracie loves being home but she is still having a hard time, she sleeps a lot but is awoken easily due to all the secreations in her throat and nose--all I have to do is turn the suction on and she freaks out. We were sent home on an ativan and methadone wean and well Gracie is despising every minute of it, why do the doctors at Primary's always want to rush the weaning process? Luckily our doctor is willing to extend the wean to help Gracie so we don't stress her out too much because we all know how much she loves her 'drugs.'

The hardest part about having Grace home has been the nights, she wakes up easily and when she isn't waking up she has meds due, I'm hoping now that we have finished her IV antibiotics things will get easier and the nights will be better--at least I won't be up for an hour at 4am giving her the IV.
But as much as I can complain, we are so happy to have Gracie home and be able to do normal things. Today, Morgan, Gracie and I all played tea party, we went for a walk and read books and just enjoy being together. Morgan and I almost had Gracie giggling today---our homework for this week is to get it to slip out.
Here are some of my favorite pictures from the past few days.


Thursday, April 2, 2009

Unfortunately.....


Well, we are very disappointed that we will not be going to the floor anytime soon. When we got to the hospital today we found our little girl on regular nasal cannula!!! She is doing great and is even on 1 liter, tolerating bolus feeds and even nippled 9 cc first feed. So I strongly persuaded and fought hard and won---we are going home from the PICU tomorrow!!! Yes after two months, 8 1/2 weeks we are going home, it is very surreal and overwhelming, but I'm so excited.

The Attending on spooked me a little because he was hesitant to send Grace home, considering her history, but I know she will be fine and we could always come back if we need to. Plus there are several nurses who said that I could call them even at home if I need to. But really Gracie is doing great.

I'm sorry if this post is a little jumbled, I just can't believe we are bringing her home tomorrow!!