Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, October 20, 2011

There's No Place Like Home!

October 19th will always hold a special place in our hearts - it's when our baby girl came HOME!

Meagan was discharged from the NICU!! The Neonatologist we've been working closely with there was very efficient at getting all our paperwork together and getting things moving.  We went there on our "normal" schedule (normally we'd be at the NICU from 9am to 6:30pm everyday). We thought we'd go hang out with Meagan and then by the time she got discharged, we'd at least be with her.  Well, to our surprise, we were driving home before noon!

It was a very overwhelming experience to a point because we left with a LOT of stuff.  We had all her feeding supplies, her pump, her apnea monitor, all the things they couldn't reuse with other babies (wipes, gauze, syringes, etc..), my cooler full of frozen milk they had stored for me, her blankies, clothes, etc.. the list goes on and on! Brian loaded up the wagon and we waited for the nurses to complete the discharge orders.  The NICU doctor signed off on us early, which was very nice.  He stopped by and said he was going to go ahead and sign everything so the nurses could to ahead and push us out the door. :)  The nurse worked hard to get everything completed correctly, but quickly.  She gave us all the phone numbers for Meagan's follow up doctors and had me start making appointments while she worked on feeding instructions. 

The follow up appointments added to a little of the overwhelming factor of the day! In the next two weeks, Meagan has follow ups with 6 different doctors - Pediatrician, Eye doctor, Hearing doctor, GI doctor, Neurologist and Neurosurgeon. Whew! This doesn't even include the therapists (Occupational, Physical, Speech, and Vision) that will be contacting us to set up home appointments.  I know this is just life now for us! I'm not too nervous about fitting everything in - to be quite honest, I'm more organized now with 5 children than I ever was with just 2.  I'm more anxious to get everything going so we can get into a groove with our new life. 

Some other good news is that Meagan got her date set to go to Duke for the Hydrocephalus study! She is going up in early November, and we are forever grateful to the other Hydro families who first let us know about this study.  We feel it will give Meagan every chance at the best development possible... while at the same time, hopefully helping future Hydro babies with the research Duke will gather from our families.  I'm so excited to get there and give her something back that may help her down the road!

Meagan settled in well when we got home.  She was pretty calm and actually slept soundly the WHOLE day.  I had to really wake her up for feedings, and at each bottle feed, she didn't take that much - maybe 20-30ccs total.  We successfully had our first tube feedings at home to give her the rest, so I felt much more comfortable using her pump and feeding bags/tubes once I did it a few times on my own.  I'm sure she was so tired from the travel and just the change in environment.  The hospital, while necessary for a time, is really a hinderence after a while.  It's not cozy and not comfortable for anyone.  So I can only imagine last night the relief Meagan must have felt being in her own home.. listening to us talking, her sisters playing and giggling (and yes, sometimes fighting), the TV here and there, the dog barking, and cars driving by outside.  Yes, noisy, but, all NORMAL noise.  It must have felt so good instead of all the alarms, beeps, and buzzers that would constantly be going off at the NICU.

Her first night home went great.  We all had dinner as a family.  A fellow family from our parish who brought us dinner was nice enough to make Meagan a welcome home cake - so we all had that for dessert. YUM.  The girls couldn't get enough of their sister. They were holding her hands, touching her feet, gently rubbing her forehead.  They were looking at her shunt area, her fluid pocket, her belly stitches.... examining her all over, and asking 500 questions out of curiosity.  But most of all, they were just SO proud. They were so proud of themselves for having this new little baby that made being a "big sister" new all over again.  The older girls printed off pictures of themselves with Meagan to take to school, and the little ones just keep loving on her and entertaining her.  I think the therapists at the hospital were right when they said Meagan's big sisters will be GREAT therapists at home. :)

Meagan also did great sleeping her first night in her crib.  We have her set up next to our bed so we can keep tabs on her apnea monitor and her feeding pump.  She is on a continuous feeding drip at night for 10 hours - so she can sleep through and gain her strength to build up those daytime feeds.  I still have to get up, though, at the 5 hour mark (around 2am) to add more milk to her drip because the milk can't sit in the feeding bag for more than 5 hours at a time.  So it's great Meagan can sleep through and get her rest - but Mama is still getting up. Go figure ...  The rest must be helping her.. or a combination of that and being home because for the FIRST time EVER, Meagan finished her 9am bottle - ALL 60ccs!! And she did it in about 10 minutes.  So I'm hoping this is the start of a new trend for her.  Even if she doesn't do it again today, we'll take it once a day! One bottle at a time, one feeding at a time, one day at a time.

Overall, it was a great day.  And her finishing that bottle this morning told me that she is only going to grow and get stronger.  Sure, life will have bumps as we deal with her ups and downs as she grows - but - we are extremely happy she's HOME, right where she belongs.  She's surrounded with a comfy home, lots of love, 2 parents, 4 big sisters, and a goofy old Labrador.  And this is the best place for any baby to be - but especially one like Meagan because while her future is still up in the air, her purpose is not. She was meant to be.. and meant to be in this family.  We love you Meagan Theresa... Welcome Home.  The journey begins!!

One sneaky picture in between changing out her feeding tubes. Hopefully in the near future, all our pictures can be without her tube!

Bye Bye NICU Bed 23!! Going HOME!

All ready for her ride home!

Maura is a big sister for the first time. She loves her new baby sister!

All of my girls together at last!!!

Reilly meets her littlest sister!

Kaitlin meets Meagan (who looks JUST like her but with brown hair!)

Anna and Maura can't get enough of Meagan!

Dudley already standing guard! 

The 4 older girls will always be protective of our little miracle!!!


  1. I just found your blog...I am currently 20 weeks pregnant, having my own "D-Day" about 2 weeks ago. It helps to read what other families with this diagnosis are facing, as we have NO IDEA what we need to prepare for...I will continue to follow, and keep Meagan in our prayers as well.

    1. Sarah - I was going back and found this comment - oh how far we have all come :) Love you girl!

    2. Sarah - I was going back and found this comment - oh how far we have all come :) Love you girl!