Monday, December 5, 2011

The Nanny Trials and Help From Friends & Family (by Meghan)

Monday, November 28th: It's 6am after my first night with the nanny.  For the moment, the girls are quiet, I'm rested, and we're heading together, full speed ahead, into our first day without any help.  I might need more prayers than Isabelle today. :)

Saturday, December 3rd: The good news is I made it through that day wonderfully.  The bad news is, after one night, that nanny never showed up again. It's one week later and I'm just now getting to finishing this post!  We have no idea what happened to the nanny.  After one night she stopped communicating with us altogether and even blocked my phone number.  Jeremy and I were left unexpectedly to take care of them on our own 24 hours/day without any help.  Thank goodness for Sarah, who showed up on Thursday to relieve two very exhausted versions of Jeremy and me.

It's been a whirlwind since she arrived!  Thursday evening she was just in time for a nanny interview at 6.  We decided to hire Amanda pretty much on the spot because she had experience with triplets and could start the next day.  Honestly, I think she had the job when she said she'd start tomorrow.  That was music to our exhausted ears. :)

Sophie (lower right) is obviously very happy to see Sarah!





Sarah, thank you so much for coming to see us!



On Friday, we had a home visit with Early Intervention at 10 am and a doctor's appointment 1pm.  With Sarah's help we wanted to squeeze in a trip to the NICU too.  The sad part about the lurch we were in without nanny coverage, is that I didn't get to see Izzy for 6 days.  Jeremy stopped on Monday to see her after work because we thought we had a nanny showing up to cover the night shift.  The rest of the week he came home as quickly as possible after work so I could go to bed and wake up in time to spend the night taking care of the girls and allowing him to get a good night's sleep for work.  The good news is we made it, but I can't help but think I'm getting used to having an extra set of hands around again and it makes me fearful for that day in the near future when I'm on my own yet again.  At least, I can now depend on some help at night.  For a girl who doesn't like to accept help and likes to do things on her own, raising triplets is a rude awakening.  :)

There are so many updates with the girls since we haven't written in forever!  Let's start with Sophie and Maddy who are changing every day!  They are both doing very well at home.  As you know Maddy's reflux has been so bad it was keeping her from gaining weight.  At our last appointment, she had gained 7 ounces in one week, weighing in at 6 lbs. 6 oz.  Due to the holiday, we had a week off between visits.  After 14 days, Maddy gained 13 oz and now weighs 7 lbs 3 oz.  Sophie gained 18 oz weighing 8 lbs 4 oz. We can feel them getting heavier and heavier every day.  Sophia is getting lots of baby chub on her body and it's making her cuter and cuter!  Both girls have started smiling in response to silly faces and high pitched voices.  It doesn't happen all the time yet, but we an usually get at least one smile/day from each of them.  What a great moment that is, one we've been anxiously awaiting for 3.5 months!

Sophia, celebrating a Penn State touchdown in her sleep


Meg, and (almost) all of her girls


Baby Madelyn, sleeping soundly


Each day is truly a science experiment.  We decreased Maddy's volume to see if she would spit up less.  That worked for about a week.  Now she's wanting to eat every 1.5 to 2 hours, so we tried to increase her volume a bit again.  Last night she had a lot of spit up, but she didn't take any of the extra volume so we try to rack our brains to figure out which variable change may have caused this.  The trouble is keeping all other variables constant in order to isolate the problem.  Some days we're sure breast feeding is better; others we're sure bottle feeding is better for her.  All I know is I need to go back to grade school and tell the kids in Mrs. Heasley's science class that the stuff they're learning about scientific method actually will be valuable some day! :)

Now on to Isabelle who's taking great steps forward while having some setbacks at the same time.  The biggest problems recently have been Anemia, bottle feeding, and liver damage.  Izzy's crit levels have been slowly dropping and dropping, meaning she was becoming more and more anemic.  Luckily, she wasn't showing any signs of being sick from it before they decided to give her another blood transfusion.  The next day her crit levels were back up at 38 (anything over 30 is considered not to be anemic).  Her color was better, her breathing slowed down to a better rate, and they tried to take her off the oxygen altogether.  As of today, she's been off O2 for almost a week and doing great, a huge leap forward for her!



With one big hurdle down, the next goal looming overhead was getting off the TPN.  This past week the girls were 3 months old, which is a long time to be on TPN.  It's definitely taking it's toll on her liver.  Her direct billiruben level was hovering around 2.2-2.4 for the longest time. If this number gets too high it could be a sign of severe liver damage.  On Friday when I asked, her level was up to 3. While 3 isn't horrible, anything over 2 is sign of some liver damage.  I decided to express my concern to the doctors and try to ask some questions to get an idea of how bad a 3 really was.  I also don't really understand why it seems to be continuing to increase even though they're decreasing the TPN and increasing her breast milk daily.  As a result of my questioning, the neonatologist called a GI specialist.  They've decided to put her on medication to help the direct billiruben  level and only keep her on TPN for 20 hours a day, giving her a 4 hour break each day without any TPN in her system.  After a few more days with that plan, she was able to increase her volume enough to get off the TPN.  Now that it's disconnected she should be able to have her PICC line out very soon.  They'll just leave it in for a few days to make sure she does ok off the TPN.  Slowly but surely, her liver should begin to recover.  Thankfully, the doctor expects a full recovery.

The biggest issue for her now is something the speech pathologist calls Oral Aversion.  Due to all the negative stimulation around her mouth (suctioning, breathing tubes, NG tubes, repogols), Izzy doesn't want anything in her mouth.  Also, due to all the NG feeds, she doesn't associate being full with putting something in her mouth.  So, unfortunately, at this point she has forgotten how to eat from a bottle and has no interest in learning how to do it again. There are exercises we need to do with her before every feeding to try to give her positive oral stimulation. The nurses do it with her when we're not there, which is most of the time.  There aren't many times during this process when we've gotten down, but this news is heartbreaking.  Some kids never get over this.  They just won't eat.  We can't help but feel so bad for our little Izzy.  She has yet another huge obstacle to over come. From what I've read, it seems unrealistic to hope for her to move past this while still in the NICU.  Most likely she'll come home with the NG tube and need in-home nursing, speech, and physical therapy.  All of which I'm fine with, I just worry about her weight gain with all these eating issues.  As of yesterday she was 5 lbs 13 oz, which puts her 2.5 lbs behind her identical twin, which seems to be a gap that continues to increase instead of narrowing. When I went to the NICU yesterday, they told me they're worried that her troubles are from aspirating instead of oral aversion.  She is starting to eat a few bottles each day since last week and she does take her pacifier, but they are concerned at the amount of choking she does when she's eating.  If she's aspirating, they'll stop oral feedings together and only feed her with the feeding tube because she could get pneumonia.  She'll have a swallow test with barium on Monday.  After that, we'll have a better idea about the medical plan for her going forward and when she'll be coming home.  We've heard rumors that she'll be home for Christmas!

The hardest part about all of this is not being there for Isabelle.  We try to get to the hospital daily, but it's really difficult with trying to take care of the other girls, too.  It's especially difficult for me with breast feeding.  Also for the next few weeks we have limited help during the day, which adds a new challenge.  On Friday after speaking to the doctor, they started to take care of her anemia, allowing her to get off of oxygen, and started to treat her liver issues.  Maybe this isn't the case, but it really feels that, had I not been there questioning the levels and asking for information, the doctors would not have taken any action.  A new doc was on rotation and she wasn't familiar with Isabelle's last few weeks of data. My questioning led her to take a good look at her history and make some pretty big changes for her care.  It is amazing to me how big of a role parents play in the NICU roller coaster.  It's also very frustrating and heart breaking when you feel that you can't be there.  Why did the docs wait until I pushed to treat the anemia?  Why did they wait for the GI consult, to stop TPN for 4 hours/day, and to add medication to help with the liver damage?  I was able to be there every day discussing their care when we were all there together.  I feel so guilty about Izzy being there, often times without her mom and dad and sisters, left on her own to heal.  The only saving grace is the amazing nurses that have all started to bond with our long-term NICU visitor.  We're especially thankful for Melissa who takes time to hold her and color Christmas pictures to decorate her crib and track down swings and other baby toys to entertain her, but the reality is it's time for her to come home and bond with her family.  Too bad Melissa can't come home with her! :)

Grandma Jo Anne just wrapped up a two-week stint at our house.  She has to go take care of her family for a few weeks, then she's coming back for the last couple weeks of December.  Thank you for all of your help!




Uncle Sean, stealing some cuddle time with Maddy


So, how does this work?  I don't think the wishbone ever broke like this before.  I say, we both get our wish :)

6 comments:

  1. while izzy doesn't have Ds, i would suggest visiting a Ds forum, like http://www.downsyn.com/phpbb2/index.php , for more information on feeding tubes, oral therapy and things of that nature. kids with Ds have more issues with that kind of thing and you may find some good information. your baby girls are super cute and i know you can't wait to have them all together for their first real family photo!

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  2. I know how hard it is to leave the third one in the NICU all alone. Splitting your time between two locations is a nightmare. I hope you get her home very soon.

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  3. I feel for you having two at home and one in the NICU. We did it for five long weeks and don't wish it on anyone. I feel so sad for you and can totally relate to the guilt you feel not being able to be there with Izzy as much as you want/need to. I hope she comes home very soon! As for the feeding issues, I wanted to refer you to a friend's blog. We met this family in the NICU when their twins were born at 24 weeks. Cade had a significan oral aversion to the point of needing a g-tube. I'm not saying that is what Izzy will need, but I wanted to share their story because even after all that he is doing great, is a big healthy one year old, and loves food now! www.camdyncade.blogspot.com.
    ~Andrea

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  4. I totally understand your frustration with having to be SUCH an advocate for our kids. While it is certainly our jobs and we question everything anyway, it doesn't seem right that the Doctors change their plan of care because WE thought to try something new...kinda scary. Nevertheless, it sounds like Izzy's in good hands. I'll continue to pray for her.

    On a much less important (but equally interesting) matter, Brian and I just broke our wishbone from Thanksgiving and we broke ours the EXACT same way! Like you, we said it means we both get our wish! :)

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  5. Know that I'm praying for your little bitty still waiting to come home. My heart breaks for you as you long for her to be home with you.

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  6. Hey folks, thanks for the links and prayers! We're working our way through it, one day at a time :)

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