Monday, September 8, 2008

You're Going Home!!!!... or maybe not.

There are few words you look forward to hearing quite as much as "You're going home" when you've been stationed in the NICU for months. I can tell you exactly where I was standing and exactly which neonatologist first uttered those words to me. It was the beginning of March 2006 and, truly, we hadn't expected to even consider going home for another month when we'd be approaching C's original due date. You could have knocked me over with a feather.

We were (tentatively) excited, but also pretty skeptical. We scheduled a meeting with the social worker and the head of neonatology to discuss the reality of this happening. Dr. L. felt that it was perfectly realistic to figure on going home within two weeks. Two weeks! We were thrilled.

Fast forward two weeks. C. had already had two laser eye surgeries to try to correct some early ROP (Retinopathy of Prematurity). Basically, her blood vessels were growing and branching too much and this can cause the retina to detach if left untreated. Laser surgery is usually all that is needed. When I received a call on my cell directly from the head opthalmologist, I knew it wasn't good news. Her eyes had gotten worse and she needed retinal surgery. Despite being in one of the top 3 NICU's in the country, she would have to be transported. You see, there are only three surgeons in the country who perform retinal surgeries on infants so small.

We left for Chicago the very next day. We spent three days there. When she was to be transferred back, we learned she wasn't "sick" enough for the NICU we had been at. She was transferred to a Special Care Nursery at a neighboring hospital. All our former plans for a "going-home-timeline" had to change.

And that happens. Often. It happened to other families too. You think you know when the big day will come, but then- nope- doesn't happen. Sometimes it is because your child develops a new illness or symptom and needs further treatment. Sometimes it's because your baby doesn't pass one of numerous tests required to leave the hospital. Sometimes it's because noone checks to make sure the equipment is actually recording during the test (ask me about that one...). It is frustrating, nail-biting, at times infuriating, but it's just another bump in the road. Months from now it won't really matter if you were released on April 5th or April 10th... but at the time, that's hard to take.

It's important if you're someone other than the parent that you be supportive, but don't go overboard. Let the parents share their enthusiasm, but don't go scheduling major celebrations just yet. Let them vent if (when) plans change.

When the big day DOES arrive, it's an amazing thing. Having your child safely tucked in the car seat in your vehicle is a joyful feeling. You are going home. Home! What could possibly go wrong now?

You could go back. And that happens too. We were very lucky to bring our daughter home in the Spring and have everything go smoothly and well. She did not need to be re-hospitalized after her release.

But some babies do. Sometimes repeatedly. And this creates a never-ending cycle of worry and waiting for the parents as they wonder when- WHEN- they will be able to just settle in and relax. To know they can just adjust to life at home with their precious child.

As the friend or family-member of someone caught in this revolving door, it can be difficult to know what to do, what to say. It's important to recognize that bringing a preemie home is not the same as bringing a full-term baby home. Preemie parents can't be quite so confident that they'll be able to stay there. As the loved one, by all means, be excited for them! Allow them to bask in the joy of having their newborn home. But don't be shocked or alarmed if the baby needs to be re-admitted. Don't make the parents go through the whole saga. Don't approach them with a dramatic, "Oh my gosh, what HAPPENED???"

Just be there. Like I advised earlier on, ask if there's anything you can do, anyone you can call. Tell them you'll be praying for their child.

Parenting a preemie is a roller coaster ride... and sometimes that ride doesn't end when the discharge papers are signed. But once you've ridden that ride, you learn better than most how to enjoy and cherish the simple calm. And that is a wondrous lesson.


Anonymous said...

Thank you for the post! My DD went back into the hospital 7 times in just over a month after coming home. We even got to the point that we stopped committing to be anywhere at a specific time or place, and would have to tell people that we would love to go or be there, but unfortunately we could never guarantee anything. It was hard for some people to understand, but we were in the hospital more than we were at home. The good news, though, is that she has now broken her own record, having been home a little over two weeks at once. It may not sound like much, but it is so wonderful for us!


Beth said...

2 week notice??? I went in on a Tuesday, I was asked what I was doing tomorrow night. Then they said that I needed to spend the night at the hospital to make sure I could handle all the meds and treatments. That he would go home on Thursday.

The most amazing thing happened that night. You get close to other preemie parents and babies while you where in the NICU. There was my son, another boy and a girl all born the same week with-in a few ounces of each other. At this point all three were in it step up nursery and off all machines. So I check into my room with my son, and around 11 at night all hell broke loose. There was a small fire in the room between the NICU and the step down. Nurse are running to get the babies out of the way. I walk in and grab the 2 other babies. I un hooked them, I put them in one basket and took them to my room. Then I ran back for a few more babies, but by then the fire was out. So I go back to my room to get the babies, as the girls dad comes running down the hall, smoke everywhere it's still was not a good scene. So I grab him take him to the far end of the ward. All three of our babies are sleeping. So we wait a bit, and return the babies. I don't think the nurses ever knew.

JessieLeigh said...

Liz- Big congrats on your new record! Sending lots of prayers that everything continues to go well.

Beth- That is a truly remarkable story. Glad to hear all the babies were OK!

Ryann said...

We were so nervous when Addy was moved from the NICU to the special care nursery. We stayed in special care for over a month because they were trying to get her to take a bottle and weren't interested in sending her home with the NG tube. If we had been in the NICU, they would have sent us home earlier. We finally convinced them that we could do the NG at home and we got to take her home. We spent the night at Special Care and did her full care by ourselves... we got no sleep. Once home, things fell into place and we got the swing of things. Luckily we've only had to be readmitted once, to get the g-tube surgery. We're glad we made that decision for Addy.