Disney with a Micro Preemie, whould we go?

[Twice_as_Nice]

Hoping for some advice here. We've had a trip planned for a while now for June 2011, we booked just before we found out we were expecting baby #3 a big surprise. Going with an infant would be a new experience for us considering it's only our second trip as a family, our first was Dec 2010, but we figured we could do it and with less equipment then we imagined at first.

Now, unfortunately, I ended up giving birth a couple weeks ago at just over 25 weeks. Our son is in the NICU and is a micro preemie at 1lb 8oz. I'm distracting myself thinking of our trip and wondering if we could still do it.

He will be just over 5 months adjusted, so still little since he will likely come home under 5lbs. We could definitely use the trip, and it's already paid for, but should we take him? Do you think it would be okay for him to go with all the people and the travel etc.

Has anyone gone who's been in a similar situation?

If we do decide to go any advice on how to prepare and things to think of?

Sorry for all the questions I'm all over the place lately.

 

[debrapagliasotti]

First of all, I am so sorry to hear about your baby being born so early. I can only imagine how scary that must be.

In regards to your question, I dont think I would personally do it. I would just be so nervous with all the germs everywhere and how it might effect a preemie. I dont know if you ever watch "19 Kids and Counting" on TLC, but they had a micro preemie in Dec 2009. They waited a long time to take the baby out in public b/c of worries she would get sick.

I guess you could discuss it with the doctors, but I would suggest putting the trip off a little longer. I know you said you guys really need the trip, but I think in this situation, I would wait.

My #3 was a late term preemie, so I have no real-life situation to go on as far as a micro preemie, but I think I would err on the side of caution.

 

[canadianjovigirl]

Congrats on the birth of your son and prayers that he does well. I to had a preemie, but only 2 months early and RSV is very serious and deadly for a preemie so i would really consider that especially if you have your trip planned during RSV season. Other than that i really think its to soon to tell as the nicu is an emotional roller coaster so you may just have to keep dreaming of it and wait and see how things go before making a firm decision.

Sorry didnt see you mentioned June so you may be okay with RSV season : )

 

[MaleficentRN]

Congratulations! I hope your little one is doing well.
I would wait on this decision until he comes home for a couple of reasons. Hopefully your little one is a super star and will be home by his due date with no problems. But sometimes preemies do things at their own pace.Coming home on oxygen or a monitor is not unheard of for a 25 weeker. Could your travel with all of that?
How will you be traveling? Some preemies end up with lung disease.If he does, I would hold off on air travel until he's a year old. His lungs will be bigger and immune system stronger
But like I said, you never know. It will be June and not RSV season and good hand washing should be enough to protect everyone, including him, from anything icky that may be going around that time of year. It's not like you will be passing him from stranger to stranger and having him lick tables.
Good luck!

 

[kevhead23]

Sorry to hear about your little guy. I hope he is doing well.

We were in a similar situation a few years ago when my son was born at 29 weeks. We ended up going to Disney World when his adjusted age was five months as I was already signed up for the marathon. He had a lot of the typical preemie issues so we traveled with a lot of equipment including an apnea monitor and this large wedge he slept on due to his reflux. By that point in time, he was very much like taking any other baby so our pediatrician cleared him to go.

The concerns about catching something are certainly very valid and something you will have to discuss with his pediatrician prior to going. With all of that said, while you are riding the NICU roller coaster, it is nice to have something to look forward to and to dream about what it will be like once you have gotten through this time. I would say not to cancel anything until you see how your son progresses and then make a call.

The NICU road is a long and at times frustrating one. Like many others who have been through it, I can tell you to stay positive and you will get through it. My son is now five and has no developmental delays so there is a light at the end of the tunnel. Good luck to you and I wish you the best for your son.

 

[bopper]

I am not sure on the timeline. WHen are you going to WDW?
Have you talked to your doctor? I would think that you should consider:

1) Having your baby around crowds and how bad it would be if the baby picked up an illness.
2) Logistically handling the baby on rides...some the baby could ride in your arms and some they could not. Could the other parent handle the other two kids? Can you have someone else go with you to help?
3) Strollers...how old are the other kids? Can they walk or do they need strollers too?
4) Health of baby...is the baby still on an apnea monitor or anything like that?
5) Sharing a room...will sharing a room with a baby work out with all of you? WIll the kids disturb the baby or visa versa?
6) Feeding baby...is the baby nursing? on any special formula? That can be dealt with by shipping/ordering formula if necessary.

 

[MSSANDRA]

Ok. I had just typed a long response and realized I read wrong and thought you were thinking of going in December and said NO WAY. I am a mom to a former 24 weeker the size of yours!

June is still a big IF. So many things to work though, and bridges to cross and unknowns to face.

I would not make any plans or involve my other kids in anyway yet, but maybe keep the whole idea in the back of your head to focus on in the coming days and weeks as you go though this difficult time.

Prayers for you all,

 

[dansamy]

June is going to be very crowded. I wouldn't. I would honestly wait until he was older and then plan for after RSV season. WDW isn't going anywhere.

 

[dntd]

If possible I would try and rebook for late sept or october, relatively quite time with less heat. This will give your baby plenty of time to grow.

 

[dansamy]

If possible I would try and rebook for late sept or october, relatively quite time with less heat. This will give your baby plenty of time to grow.

October is the beginning of flu and RSV season. Nope. Maybe mid-September, but I would honestly wait until after baby's 1st birthday and after the RSV season of that year.

 

[jdb in AZ]

You really need a trip to look forward to, but I would wait til it's cooler, less crowded, and your baby is bigger.

Congratulations, and I hope he outgrows any complications. My nephew was a preemie and as a PP described it, the NICU is such a roller coaster. He's fine now, all grown up and a daddy himself.

 

[ireland_nicole]

As the mom of a 26 and 32 weeker (what can I say, I undercook) and a huge Disney fan, I understand your dillema, and need to plan something "normal". That being said, I would def. not take a trip until the following summer. The first year my son was in the hospital 12 times including 4 surgeries-plus his nicu stay- and he seemed "healthy" coming home from NICU. My DD ended up w/ pretty significant apnea and reflux issues and a mild immune deficiency. I know this isn't what you planned, and I hope your baby does even better than mine (although they're much more medically stable now), but I could not advise you to go on a trip w/ your little guy still so fragile. I promise, Disney World will still be there in another year- and as a bonus, the Fantasyland expansion will be done too

 

[jmartinez1895]

If you do go be sure to go to guest services and tell them about your situation. They might give you a stroller as a wheel chair GAC and that would give him a little bit of a buffer zone while in lines, but not a lot. Also, if you have to put off the trip Disney is very helpful with that. You just have to call them as soon as you know you need to rebook ( the sooner the better) and they will change your reservation. You will have to pay if the price for the room has gone up, but at least you would not lose out on all the money you paid.

 

[deegack]

Honestly I wouldn't do it. Dd was born at 35 weeks and we were under house arrest for three month and then avoid all crowds for another six. She still ended up in the hospital with rsv at seven months. A friend had her son at 26 weeks and she was under house arrest for almost a year. I would have a good long conversation with your doctor before going. Are you driving? Because honestly the airplane would freak me out more. I always get a bit of a cold after flying.

 

[minkydog]

Speaking as a former NICU nurse, I would say no, don't do it. As you may already know, your little buddy has got a looooong row to hoe and he may be VERY susceptible to infection when he finally does come home. As callous as this sounds, I'm going to suggest it anyway--perhaps your family could plan a trip down to WDW while your baby is still in the NICU. I know, I know. Of course, you want your baby to go with you. But that is probably not feasible from a safety standpoint and may not be possible for over a year. When I worked in NICU we often had families who would take their older kids on "one last big vacation" while their premies were recovering and stable in the hospital( and not when they were still on ventilators!) They knew how circumscribed their lives were going to be when the baby came home. The first time I encountered this I was pretty horrified. I mean, how could parents leave their baby in intensive care and go off to Hawaii for a week? But with time and experience i began to understand that they just wanted to have a little normal life before they walked into the whirlwind that was coming right at them.

 

[Canajan]

I hope your baby is thriving, and that everything goes very well!

I am a mom of a former micro preemie. Although she ultimately did well, it was a very, very bumpy road for the first couple of years at least. We were advised to take great care to minimize risk of infection, which essentially meant keeping the baby away from crowds as much as possible. So, for a year, we didn't take her into a grocery store, mall, etc., and we were told that anyone with a cold or other infectious illness should not come to our house. All others needed to scrub up thoroughly as soon as they came in our front door.

Having a baby in NICU is exhausting, as you well know. I can definitely understand the desire to plan out a holiday now. What about planning a holiday in a more tranquil setting, removed from crowds, but still a refreshing experience?

All the best to your little one and your family!

 

[MrsJackSparrow4Life]

I wouldn't.

As much as I love Disney there are just too many issues involved with taking a preemie to a crowded destination like WDW, especially during the summer. I would move the trip to at least June 2013

 

[nmmom95]

I would definitely postpone WDW. You will have a better time when you don't have to worry as much about germs. I have 2 friends who had micro-preemies, and they are both teenagers now, with absolutely no lasting effects of the prematurity. One is a boy born at 26 weeks, the other is a girl born at 24 weeks. They are now happy, healthy 7th graders. You will have many wonderful family trips to WDW!

 

[luvmy3jewels]

I think you've already gotten a lot of great advice, but i couldn't resist giving my 2 cents. I think you should hold off on making any major decisions about your family's Disney vacation for a few months (maybe even wait until Spring). The trip is giving you something to plan and look forward to and right now you probably need the distraction. June is 8 months away and in your situation a lot can happen during that time.

From what I know, doctors usually recommend that preemies (particularly micropreemies) are kept away from crowds for at least 1 year after they are born and sometimes longer depending on their individual health issues. So yes, there is probably a good chance you could end up eventually having to cancel this trip. But anything you plan can most likely be transferred to another trip in the future when your baby is big enough and healthy enough to enjoy all that Disney can offer. And if thinking about this trip is helping to get your mind out of the NICU for even just a few minutes, then allow yourself those moments to dream.

Last Fall my family went through something similar to yours when my niece was born at 25 weeks. The NICU is such an emotional rollercoaster of ups and downs that unless you have been through it, it is impossible to ever imagine what a physically and mentally straining situation it is. Moments of hope and humor helped us get through the really worst of it.

Although my niece developed NEC and had to have several surgeries relating to NEC, she was able to pull through and was released from the NICU when she was 3 months old. I'm proud to report that 13 months later she is thriving with no (apparent at this time) long term complications from her birth and surgeries. If you didn't see her scars, you would never know what she has been through just by looking at her. She is living proof that miracles do happen.

Good luck with your baby and I hope that the next few months go as smoothly as possible for you and your family and that you are all able to enjoy a wonderful Disney vacation in the future!!

 

[hops&dreams]

I personally think you should postpone the trip. As the mom of a preemie (30 weeks, 2lbs, 9 oz), she came home after a month and a half in the NICU (at 4 lbs, 3.4 oz), and we didn't go anywhere public with her for at least 6 months. This was a HUGE change in our habits, as I had to make sure DH was home so I could grocery shop on my own, to the mall, etc. If DH and I wanted to go somewhere together, we had to have a sitter.

Disneyworld for a preemie is like the mall times 1000. Think of all the germs Christmas shoppers bring into a mall, from schools, different workplaces. Then think about all the germs on an airplane (all those germs are brought into the parks as well). Then all the germs from all over the WORLD that people are bringing into the parks since it's an international destination. I'm not trying to scare you, I'm just wanting you to understand the gravity of your decision. If you feel that your little one will be able to fend off all those germs, then you should go and have a great time. Otherwise, I'd put the vacation off for a year.

In my situation, we wouldn't have been able to go around that age anyway. DD was in physical and occupational therapy 2 times each a week. We couldn't have missed that many sessions. (therapists came to our house, which was AWESOME!).

DD is now 7 and one of the brightest students in her grade level, district wide. She did physical and occupational therapy for 2 years, didn't walk until she was 18 months, but now has very few lasting effects of her prematurity. She's struggled with texture issues (especially in foods), but she's even overcoming many of those.

If you have any additional questions or just need someone to talk to who has been where you are now, in the NICU, PM me. I'd be glad to be there for you as so many were there for me!

I'll be thinking of you and praying for your little miracle.