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Home again, home again...jiggity jig!

Well, Lily is home once again!  This post will not be long, but I wanted to personally thank everyone for their prayers and well wishes.  Although they do not know exactly what the problem is, they are leaning toward it being a problem with Lily's formula.  Last night went well at home and today is going well, too.  We are so very thankful to all of you for joining us on this journey.

Blessings, Nicole

The Importance of Family

In just a few short weeks, our family has become complete as Lily and Chloe have come into our lives.  I have been saying over and over that our family will be complete when Lily comes home.  I realized recently that I was wrong.  Our family is already complete.

We spent Easter with Lily still in the hospital, but made the best of it by dressing her up and taking pictures with her.  Jan and Melissa even gave the girls beautiful Easter baskets.  Even though it wasn't the Easter I pictured in my mind, we still got to enjoy time with our girls.  I think it is all about reframing.  I have learned that often, I have these ideas in my head about the way things "should be" and when they don't work out as planned I am disappointed.  I also miss out on opportunities because I am disappointed.  I am trying to enjoy every minute, no matter where it is.  Below are two pictures we took of the girls this Easter.  They are absolutely precious!

 Chloe

Lily

Lily was released from the hospital last Friday and as you can imagine, we were overjoyed.  It was like a dream come true to have all of us together.  I couldn't wait to put the girls together and take their picture!

Unfortunately, our happiness was short-lived.  Lily got very sick over the weekend.  She slept a lot and then refused to eat.  After that, she began vomiting.  Brice took her to the emergency room and she was then transported back to our original hospital.  It was absolutely heart-breaking.  It hurt to see her in that much pain and it was like our family was ripped apart.  Again, this is all about reframing.  Our family is still very much together.  Yes, this is a huge setback, but feel confident they will determine what the problem is.  I am happy to say she is no longer vomiting and is taking formula again.  We just need to determine how this happened in the first place.  We LOVE our girls and would do anything for them.  As we head toward Mother's Day (my first one) I am appreciative just to be a mother.  My daddy always told me "this too shall pass" and I know in my heart this is true.  It's hard to stay positive when I just want to break down and cry, but the girls need our strength and faith.  I believe we have many more adventures ahead and when I hold them in my arms, I know I am blessed just to be a mom.



Movin on Up!

Yesterday, Lily moved "up" to the 8th floor.  This is a big deal because that is the floor Chloe was on before she went home.  It is the less critical floor.  Lily has her own private room and it is MUCH quieter up there.  On the 7th floor NICU where the more critical babies are, there are approximately eight babies in a "pod." It was a big open room with cribs, isolettes, and "tarmacs" so the nurses could get to the babies quicker in case of distress.  Imagine how loud it was in there...monitors beeping constantly, babies screaming...I seriously don't know how she slept through all of that, but my guess is that she just felt so icky that all she wanted to do is sleep.  This is how Lily looked yesterday in her new room.

I have been accepted as a contributing writer for Yahoo and I think the first story I am going to write is going to be about navigating the NICU.  There is no way you can even imagine what you are up against until you actually experience it.  I've said before, it's like this secret society that nobody wants to join, but when forced to be in the NICU, you bond with other parents who are in there for the sheer fact that they are the only other people in the world who understand your frustration.  I was fortunate to be on 7th with another mom who had twin boys born on the same day as Lily and Chloe.  She also had one home and one at the hospital so we were able to share how we felt about not having the twins home together.  I just can't wait to have Lily and Chloe side by side!  I have two special friends, one from high school and one from college, (Lisa and Laura-this is for you!) who have been sending me messages of support.  Both had twin girls in the NICU and have coached me through this.  I am so very appreciative to them. 

Lily just before feeding a few days ago



Lily just got moved last night and already her doctor has contacted me to let me know how she is doing today.  That was amazing and what's even more amazing is she was assigned the same doctor that Chloe had.  Without naming names, let me tell you, she rocks! I was having a particularly stressful day when both girls were in the hospital so she took me through a private exit door so I could see these beautiful floor to ceiling glass windows that overlooked the zoo.  We could see the giraffes out that day along with other areas.  We were just squealing with delight and other doctors and nurses kept stopping by to look with us.  It was just like being back in elementary school and taking a field trip, if only temporarily.  It is that kind of personal attention from special doctors and nurses that go the extra mile to take care of us that really keeps us sane. 

Chloe is doing amazingly well.  She is growing by leaps and bounds and already weighs 8 lbs 3 oz. and is 21 inches long.  She looks like a healthy newborn baby and has come so far since birth.  I'll leave you with a recent picture of our darling Chloe.  Thank you so much for being a part of our lives. Your support means so much to us!

Practicing Patience

While I originally started writing this blog to keep friends and family informed, it is my sincere hope that someone will read it who is going through a similar situation and will be helped or comforted by it in some way.  When we started the adoption process, we never thought it would play out like this.  Our situation is unusual, but parents who either have children in the NICU currently, or have been through the NICU with a child, will understand what it's like.  It is all about practicing patience.  It seems like we have a different nurse every day.   We have to advocate for Lily, ask questions, request to talk to the doctor, etc.  We rarely receive phone calls.  Instead, we have to call them ourselves.  I get tired of calling up there and hearing a new nurse say, "It's my first day working with her.  She's pretty fussy."  I want to say, "No kidding?!  She's hungry because she can't eat a lot or she will spit up!"  I know that when I'm on a diet and I'm hungry I'm not the easiest person to get along with.  I'm gripy, whiney, etc.  I want people who know my child and understand the situation and it certainly doesn't help me feel any better to know she is hungry or in pain because I'm at home with Chloe and can't help the situation be any better.

Chloe looks in the mirror of her play gym

It's common for twins to go home from the hospital at different times and while I know this time will pass eventually, it's so hard right now.  I can't just go up to the hospital with Chloe and see Lily because Chloe can't get back in.  I am fortunate to have a husband and mother-in-law who are at the hospital pretty much every day.  I see Lily every other day when Brice gets home from work, but the last few times I've been there it's been hard because she is really fussy.  I don't want her to be uncomfortable.  I just want to love her and hug her and tell her everything is going to be all right.

Lily loves to snuggle and be swaddled in blankets

The hardest question we get from people is, "When is she coming home?"  Trust me, if we knew the answer to that question, everyone would know.  It hurts because 1) we want her home with us so badly and 2) we have no answers.  The answer from the hospital is always, "She'll come home when she's ready."  I can promise all of you one thing, when she comes home there will be a big announcement and big celebration!

We are not unique in our struggle.  There are countless families navigating the NICU every day.  I have met so many of them and heard their stories.  It's like this secret society I did not know existed, yet, there is very little support other than just chatting with the other families when they're in there and sharing our experiences.  You have to be strong, have faith, and stay positive and that is difficult sometimes.  I think that's true for anyone going through an extended hospital experience.  While I'm on the subject, I'd like to send a "shout out" to my student Teja who reads this blog.  She is one of the strongest, most brave young women I know and I send her many blessings.

Thank you all for reading and for being a part of our lives....the adventure continues.

Chloe Comes Home

Of course, the day after Lily had surgery Chloe was released to go home.  It was very bittersweet.  We were thrilled to finally get to take one of them home, but it was so hard to leave the other, especially just one day after surgery.  One of the things NICU babies have to go through before they get to go home is the car seat challenge.  They have to sit in the car seat for an hour without freaking out.  She passed.

The first night, I don't think either Brice, I, or our dog Sunnie got any sleep.  Every time she made a noise, one of us would get up.  Sunnie was truly amazing.  I knew she was a great dog, but she sat by the bassinet to protect Chloe.  She still watches over Chloe closely and alerts us any time Chloe does something that makes her worry. 

Finally, Chloe had her first trip to the doctor's office for a check up.  She slept through most of it, but it was exciting for Brice and I.  Now to bring Lily home and start all over again!

Moving Forward

It seems like so long since I've written.  Sometimes it just feels like you're going along fine and life just rips the rug from underneath you.  Lily ended up having to have surgery after all and it was one of the scariest things I have ever been through.  Life in the NICU brings a lot of ups and downs and after Lily had been doing so well, she began spitting up and no longer tolerating her feeds.  They did another upper GI and quickly found a blockage.  The very next morning she went in for surgery.  It all happened so fast.  We had the very best surgeons, but it was still so scary. 

Lily held Brice's finger in her tiny little hand just a few days before surgery.

 My heart was in my throat as the transport nurse prepared Lily to move to the operating room.  I just kept thinking, "Why does she have to go through this?  Why can't I take her place?"

Lily just after surgery.

The surgery took about 1 1/2 hours and what they found when they operated was not what they were expecting.  Her pancreas were wrapped around her duodenum, causing very little food to flow through her intestines.  She recovered quickly and no longer needed pain meds after three days.  I think Lily is one of the strongest young ladies I know and I can't wait to finally bring her home and see her true personality.

Lily just five days after surgery, completely alert and clasping her little hands together.

Having a child go into surgery was one of the scariest things I have ever been through.  When those doors closed behind her and all I could do was sit in the waiting room, all I could do was pray.  And yes, I cried.  I tried really hard to be strong, but I was so exhausted.  In the end, it was such a huge relief to know that the problem was fixed and we could all move forward.  Getting here was just part of the journey.