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.



Coming Home

Today is the last day Brice and I will have as a couple without children in the home for a long time.  Chloe comes home tomorrow.  We have spent most of the day cleaning, organizing, and getting ready for her.  One really cool thing Brice has been doing is working with our dog, Sunnie, to help her prepare for Chloe.  We brought home an outfit Chloe had worn and put it on my doll from childhood.  Brice put the doll in the car seat and bassinet and gave Sunnie treats as she behaved appropriately near the baby doll.

Chloe is now 5 lbs 12 ounces.  She is taking eight bottles a day and is growing stronger each day.  It is so hard to bring home Chloe and not Lily, but I know Lily will be with us soon.  These are a few recent pictures of Chloe.

The wonderful news we received this week was that Lily does not need surgery.  It appears her issues were due to maturity.  She is now bottle feeding and has doubled her feeds in two days.  She is now 5 lbs 10 ounces-almost as big as her sister!  We now need to make sure she can digest her feeds and pass them.  The only recent issue she has had was spit-ups, but I feel she will do better as she gets used to feeding again.  She has had multiple procedures, including blood transfusion and biopsy, and she never complains.  The only time I have seen her be fussy is when she is getting a bath.  She hates baths!  She is our little fighter and amazes me every day.

If you go back to the beginning of the blog and compare pictures from one month ago to now, you will be amazed at how far they have come.  They are both close to 6 lbs and are alert, looking around, and are proceeding developmentally.  I just can't wait to have them home together.  I wonder what it will be like when I put them together.  Will they remember each other?  They have been separated since they were born.  Do they know they are twins?  The one thing I do know is that all of us, friends and family included, have a lot of exciting times ahead with these adorable girls.  Lily and Chloe...let the adventures continue!

Grandpa Ben, Nana, Uncles and Aunts come to visit!

My dad and my stepmother Diane visited the girls.  Dad got to hold Chloe.  She snuggled in his arms and was so comfy.  He said the girls looked like the little doll I had as a child.

Sam and Melissa visited the girls this week.  Melissa had already met the girls in Port Arthur, but Sam saw them for the first time.  For some reason, even though he is the "loud man," they were calmed by his presence.

Next to visit was Uncle Carter, my brother.  He saw both girls and also held Chloe.  Chloe gets to be held by visitors a lot, but to be fair, Lily still has her IV and a lot of lines hooked up so it is harder to hold her and feel comfortable.  She loves to be held, though, and gets a lot of attention from mom, dad, and Nanu.  Carter thought the girls looked great.

Finally, Uncle Thomas got to met the girls.  There is a running joke in the NICU that the girls sure have a lot of "uncles and aunts."  That's okay.  If it takes a village to raise a child, we're going to need a metropolitan city.  The girls love to be held and loved.  Thomas took lots of pictures and spent time talking to the girls and telling them stories.  They both loved it!

We are so blessed by so many friends and family.  It is going to be hard when one comes home and one is still in the hospital, but I know Lily will still have lots of visitors and people to love her as she gets stronger each day.

My Supportive School

I won't go in to the state of public education these days.  Everyone knows it's tough.  Positions are being cut and great educators are losing their jobs.  Even though my school will not be immune to these hard times, it is filled with amazing educators who care.  We are a family and that is why I have chosen to remain at this school for the past six years.  You can always find someone who is willing to help you out.  Sometimes, when I'm having a really hard day, I can go hang out in a friend's classroom for a few minutes and just being there makes me feel better.  Last Thursday, my school hosted a shower for me and I was amazed by how many people were there.  These are just a few pictures of the shower at my school and my special co-workers who go above and beyond to help kids succeed.

I get by with a little help from my friends!

Our dear friends hosted a shower for us on Saturday, February 26.  We showed up and our house was full of people, drinks were flowing, and delicious food was cooking in our home.  They went out of their way to put this together and we were blown away by their kindness and support.  More than anything, it was so nice to just hang out with the people we love.  I don't know how some of you escaped being in pictures, but want you to know we are thankful you were there!  We laughed a lot and had a great time.

Brice and I with adorable outfits from Jennifer D. and Elizabeth

Karen, Elizabeth, and Amy

Cedric, Abby, and Brice

Long day for Ethan

Brice and Jan

Amy wins the "adult" door prize!

Denise with Lawson who won the kids door prize

Thankful

Today I got my cell phone bill from last month and it was $400.  I never realized how much love and support we have received from friends and family wanting to know about the girls through phone calls and texts.  There are some days where the inquiries are too much for me to handle, but then I take a step back and realize that people love us very much and want to support us in this journey.  I wish there was a special phone discount for parents who have their kids in the NICU!  I am thankful for good friends and family who care.

Lily's pod is nicknamed the "Princess Pod" because there are only girls in there.  It just worked out that way, but we have used this to our advantage.  Everyone has decorated their little girls area with cute decorations, blankets, stuffed animals, and balloons.  My school gave me an amazing baby shower Thursday and I used some of those decorations to dress up Lily's area.  I am thankful for wonderful co-workers who take extra special care of me.

The other day, it was just myself and two other mothers holding our babies in the pod.  We started talking about our NICU experiences.  I found out that one of the mothers has been there for six months.  Her baby was only one pound when she was born and has already had three surgeries.  She doesn't even live in town and has been commuting to Houston every weekend for the past six months.  It costs her $300 every weekend just to come in to see her little girl.  The other mother has been there for nine months.  Her baby has had multiple surgeries and was 1.5 pounds at birth.  I decided to stop complaining about my one month journey.  My babies are both doing extremely well, considering the situation.  Yes, we have been through a lot, but when I heard the other women tell their stories, ours is minimal compared to theirs.  I am thankful both our girls are moving forward and getting healthier and I pray for the children and families of the other mothers in our pod.

Hurry Up and Wait

Nothing about our lives has been normal for the last three weeks.  We were thrilled to find out we were chosen for the twins, loved meeting our birthmother and her boyfriend, and then four days later the girls were here...two months early.  I am very much a "roll with it" kind of gal.  I try to make the best out of every situation so I thought, "okay, we're not ready, but we have lots of wonderful friends and family that can help."  I also thought that we'd be in the NICU a few days, the girls would get released, and we'd go home and happily start our new lives together. 

I have battled frustration with my job because although my paycheck said I have 61.5 days of leave, they have informed me that the paycheck is wrong and I only have 34 and will be docked pay for being out.  In my preliminary calculations, this will be just over $7000.  I love my job and have been in my career for 16 years.  I was even a finalist for district teacher of the year.  I cannot imagine doing anything else and thinking that I had double the days they say I have, only to find out that my paycheck is printed incorrectly really crushed me.  Because I am spending an average of 14 hours a day at the hospital, I do not have time to research this.  My focus has to be on the girls.  I just keep praying for a solution.  I do; however, think it's bad business practice to print one number on a paycheck and then tell your employee that number is incorrect due to a computer error.  I am trying to just put this aside and focus on the girls, but it still hurts.  I have always gone above and beyond in my job and have had perfect evaluations.  When I return, I will still do what I do the same way because I believe in what I do and I care so much for my students.  I feel called to my profession and want to see my kids succeed. 

We are no longer living in Beaumont and that is a true blessing because we racked up a $2000 hotel bill while we were there.  The girls were rushed by ambulance to Houston and, to me, that indicates a sense of urgency.  The girls got settled in, but the communication has been lacking, which has frustrated us to no end.  Chloe's doctor has been wonderful.  She has been by the room, has called every day with an update, and told us what the plan is; however, Chloe is not the real reason we are home.  Lily has been assigned a team of specialists.  There have been so many people through her pod that it is hard to determine who her actual doctor is.  When we ask, we gave gotten answers such as "we're evaluating the ultrasound" to "we just have to wait for the barium and formula to exit her body."  She has trouble eliminating waste and we have been extremely concerned that she has only eliminated when given a suppository.  What we have been seeing is this beautiful little girl lying there and people just looking at her making notes.  I have been in tears a lot.  Part of it is frustration and some has been exhaustion.  Fortunately, Brice and his mom were able to sit down with two of the doctors yesterday and get some open communication going.  They did an additional ultrasound and a surgeon came in to evaluate.  Now we wait for answers...and we pray.

Am I happy I became a parent?  You bet.  I certainly did not expect the process to be this complicated, but when I hold those sweet little gifts from God in my arms, I know that there is nothing I wouldn't do for them.  Sometimes life throws adversity in our path.  How we deal with that adversity determines our true character.

Home Sweet Home...Sort Of

On Sunday, February 26, Kerry came to visit.  She was in town to see her dad so she stopped by the hospital to meet Lily and Chloe.  She was able to hold Chloe, who slept snugly through the whole visit.

On Monday around 11 a.m. as I was feeding Chloe, our doctor told me she decided it was best to send the girls to Children's Memorial Hermann so the specialists there could determine what was going on with Lily.  She was able to get them to accept Chloe, too, since it would be difficult to have the girls in two different cities.  While we were thrilled to be going home, we had mixed emotions because the reason we were leaving was that Lily needed additional help.  I had about two hours to run to the hotel, throw everything in the car, and run back to the hospital to be there in time for the transport. 

The transport team arrived from Children's Memorial Hermann and packed the girls snugly into their transport isolettes.  Lily even got to wear her cool pink hat for the journey!

Chloe slept soundly through the ride and got to wear her custom hat, too!

Our wonderful doctor supervised the load in of the transport.  It was very hard to leave her and the nursing team.  They gave us such personal care and support.

Lily is ready for her trip.

I followed behind the ambulance on the way to Houston.  They went a lot faster than I expected and I lost them at one point (probably because I was so flustered and went the wrong way on I-10)  but I caught up with them in Houston.

Chloe settled into her room nicely.  She was given a private room and a crib on a separate floor from her sister.  The NICU pod Chloe is in is for less critical patients.  The room is really nice and even has a couch that folds out into a bed.  I tried to take a nap on it, but the beeping from the monitors kept waking me up.

Lily is snuggled soundly in my arms for the evening.  She looks good, but it is so frustrating that we can't figure out what is wrong with her tummy.  I hope the specialists will figure it out soon.