Hospital Discharge Alone: Lily’s Story

Hospital Discharge Alone

When you go to have your baby, you don’t expect to have your hospital discharge alone. You expect to bring a newborn baby home with you, and start your family.

Prematurity robs you of that experience.

There is no celebration, no flowers, and no one trying to sneak a peek of your baby as you’re wheeled out.

Watching other new families leaving together can be heartbreaking and unbelievably difficult.

There is sadness and jealousy combined with fear and guilt.

Not only do you have to experience that hospital discharge alone, but you then have to endure a NICU stay. You don’t get to take your baby home or take care of them, and you must leave a piece of your heart every time you leave the hospital.

I still remember experiencing my hospital discharge alone, and I think it will always be with me. 

Today’s family is still experiencing the NICU, and having that hospital discharge alone is still fresh in their minds and hearts.

Please read their story so far, and leave some supportive comments for this beautiful fighter.

Lily

1. Tell us about your baby

Lily was born on November 4th, 2017 at 26 weeks, 2 days. She was 1 pound, 1.3 ounces and 11.61 inches.

2. How long was your NICU stay? What was the hardest part?

She is currently still in the NICU, but so far, I remember the hardest part was in the beginning. It was when I was discharged from the hospital and then recovering from surgery.

My husband and I thankfully only live a few miles from the hospital, but when I was discharged, it felt like states away. I have never in my life cried as hard as I did when we were sitting in the car in the parking garage because I felt so much sadness. I felt like a terrible mother leaving without her, even though I would be coming back. There was a deep sadness at the fact that I was not leaving with my baby like so many other moms got to. It was gut wrenching pain that I hope I never experience again.

We do see her every day, though. My husband goes by before work, and I go sometime in the afternoon. There have been a few days I have been unable to see her while recovering from surgery, or I was afraid I was getting sick. My husband Facetimes with me on those days. Those days are hard too because I feel like a terrible mother too. However, on the days we are there, it helps with any sadness.

Lily is a fighter, and she shows me what strength is.

Her medical team is beyond amazing and she has so many people praying for her.

3.Do you know what caused your premature birth?

I had been going to see maternal fetal medicine specialists, in addition to my OB, because I have Epilepsy. I hadn’t had any seizures during my pregnancy, but I was going as a precaution.

At my appointment on November 2nd, I felt fine. A bit of swelling showed up the night before, but I thought it was a normal pregnancy symptom. It turns out I had pre eclampsia and placenta previa.

They admitted me immediately and were hoping to keep monitoring me until 28 weeks, but very early the morning of the 4th, I got a debilitating migraine. My doctor said she needed to come out.

She was delivered by c-section at 8:26 am and came out crying and kicking (she was nicknamed ninja). Because of the problems with the placenta, she was measuring at 23 weeks.

4.How are you and your baby doing now?

Lily is doing great now considering.

She decided to extubate herself on Dec 23rd, and her doctor put her on SiPAP rather than re-intubate her because she was getting near that soon anyway. Lily has done great on SiPAP oxygen-wise. Her heart rate has just been elevated because she is working hard and coughing up the crud that was in her lungs.

We have FINALLY gotten to hold her again, and she seems so big which is crazy. She is only 2 pounds 9 ounces, but that seems so big compared to what she was before. Lily has started packing on weight because they are priming her feeding tube with cream. She gives mommy and daddy lovely diapers, which is wonderful.

She is hopefully going to be moved to a crib soon. Lily is so beautiful, and I can’t get enough of her sweetness. But, I have (finally) learned to take care of myself too, and if that means I can’t go in as early as I wanted,  that’s OK.

I have healed from the emergency c-section. The only thing that bothers me sometimes is my back from the spinal.

I will never forget everything we went through though. Even though this was not at all what we planned, it has made my husband and I closer.

5. What advice would you give to a new preemie family?

When Lily first went into the NICU, one of her doctors said this journey would be 3 steps forward, 1 step back. I understood that, but when Lily started making strides, I thought well he just had to say that, and it doesn’t apply to us.

Then she got pneumonia.

It TRULY is 3 steps forward, 1 step back.

Even though it is hard to believe, your baby will get through these setbacks. I have never met a stronger human being than my daughter.

I have also realized strength that I never had. You will find the strength to get through this because that is your child.

Don’t be afraid to ask questions, or point out something you think may be questionable. You will have a wonderful team to take care of your child, but it is your child, and if you think something is wrong, or don’t understand something, speak up. You learn A LOT being a NICU parent, more than you ever thought you would.

Also, if your partner is in the picture, don’t let this drive a wedge between you. Lean on each other and talk to each other. Get through this together because it will make your relationship stronger. If you need extra outside help too, that’s OK. Just don’t be afraid to ask for it.

Once your baby comes home from the NICU, you have to make sure that you are stable physically and emotionally, so that you can care for them.

I go back to work next week, which I know will be hard. Luckily, I work for the hospital a few buildings away so I can go see her on my lunch break if needed, or if the NICU calls I can go right over. I also have 4 weeks to take when she comes home.

Thank you so much for sharing your story, Melissa. I’m so sorry that you had to experience your hospital discharge alone, but I hope your family will be complete and together very soon.