NICU Life

Not gonna lie guys, NICU life is hard.  And hectic.  I seem to be running in circles most of the time.  Our NICU is an hour and a half away from where we live, but I'm blessed to have someone to stay with who also allows Linus to stay with us.  Jon stays home to work and visits on the weekends.  I'm also blessed to have someone to take Linus a few hours each day so I can go see Lydia.  So many blessings and it is still hard to manage, not to mention exhausting.  No matter how good your little one is doing, it's still hard to have to visit your own child.  I would hold Lydia all day if I could. I get excited about changing her diapers.  I can't wait for the day she is home and I'm the one rocking her back to sleep when she fusses and getting minimal sleep at night.  Being away from her is so hard it hurts.  Especially when you have to leave her and she looks at you and you know she must be wondering where her momma is going.  I am dreading going back to work because that will mean no weekday visits.  Ugh.  And then there is Linus, who is amazing and handling everything well.  Being shuttled from place to place and not knowing who will be with him what days. He's really a champ, but I feel guilty for putting him through this unstable time.  And then there is my husband who I only get to see for a couple days a week and even then we are distracted by hospital visits and big kids needing our attention and time.  Our lives are completely on hold.  It's summer and I would love to be able to take Linus fishing or go hiking or plan a day out, but there are so many hours in a day and with travel time and hospital visits, plus trying to fit pumping in every couple hours, there are only so many things we can do.  I feel like Linus is missing out on his summer and there comes the guilt in again.  Yes, NICU life is hard.  So worth it in the end, but the journey home is rough.

Oops...

So it's been a minute.  Actually a lot of minutes, I know, but in my defense we have had a lot happen since last August.  So let me catch you up.  We had a baby.  Yeah that happened lol! Shortly after my last post we found out we were expecting again.  Then j had the morning sickness from hell.  Then we got a devastating prenatal diagnosis, then life got really crazy, then we had a baby girl, and now here we are.  That's the short version.  The long version is much more complicated.  In August we found out I was pregnant. We had only tried once, like literally one single time, so I was surprised to see that positive so soon.  Also, we had just lost Eleanore two months before so it was just a whirlwind all around.  We were excited but cautious.  I was sick my first four months of pregnancy and just wanted to sleep lol!  We had a first trimester genetic screening done due to our history and it came back clear so we felt good at that point.  We had our anatomy scan done in December right before christmas.  I was absolutely convinced it was a boy so I was shocked when they said girl!  Then i was worried because the ultrasound tech got quiet.  After the scan, the doctor told us that our little girl had a congenital diaphragmatic hernia.  Essentially, her diaphragm didn't form all the way and there was a hole allowing her stomach and other organs into her chest cavity.  Survival rate is never higher than 60%.  I pretty much retreated into myself at that point.  If not for Linus, I don't know how I would have handled this.  Why was this happening?  How could we have two girls with these life threatening defects?  Answer is that we were unlucky.  No one knows what causes this.  The next several months were filled with doctor visits and more ultrasounds than I ever imagined.  I was diagnosed with polyhydramnios ( excessive amniotic fluid) and was told to go to work, go home, and do nothing else. Even walking became extremely painful and took all my energy.  Jon had to take over all the housework and we were all exhausted and more than a little cranky.  At the beginning of April, I was relocated to Indy to be closer to the hospital I would deliver at.  My fluid levels were so high they were worried I could go into labor at any time.

On April 25 I was induced and after 6 hours of labor and three pushes (what?!) Lydia Odette was born.  She was immediately taken by the NICU staff to be intubated.  They let Jon take a couple pictures to show me then she was taken to the NICU.  Once she was stable, we were taken to see her.  Not gonna lie, it was hard to have to see her like that. She was in the NICU for about 36 hours and it was determined she needed to go in ECMO, so she was transported to the PICU and put on ECMO.  She was on it for 6 days.  They took her off and she had surgery to patch her diaphragm and move her organs back into her abdomen.  A few days post op and she was moved back to te NICU.  On Mother's Day, I got to hold her for the first time and she pulled out her ventilator.  She was doing well enough they left her on forced air and oxygen through a nasal cannula and she's been on that since.  She is receiving feedings through a feedin tube.  She has amazed us all with her progress.  It's hard to believe that this little girl who we were warned very well may not make it is doing as well as she is.  She is our warrior princess and we are so proud of her.

Linus got to meet her and he handled it very well.  Josh isn't ready yet, and we are respecting that.  Right now, Linus and I are still relocated to be close to Lydia so we only see Jon on the weekends.  So basically life is crazy.  But I'll try to update as i find the time.

Sarah