Kennedy Is Home!!!!!!!!

After 137 days in the NICU we finally got to take our baby home!

Now before you all come knocking on our door dying to meet her I would like to go over a few things. First- just because she is out of the NICU does not mean she is the equivalent of a healthy full term baby. She is a micro preemie and regardless of how old or how big she gets she will always be a micro preemie and have health problems related to it. One of those problems is Bronchopulmonary Dysplasia. Her lungs were not fully developed when she was born and they also were further damaged from being on a ventilator for an extended period of time. What this means is that she is highly sensitive to infection. She cannot be around smoke- even the lingering smell of smoke can hurt her sensitive lungs. We are also bringing her home at the beginning of RSV season. RSV is a common virus that causes cold symptoms in healthy full term infants, children, and adults. Babies who were born prematurely, at an extremely low birth weight, or who have a chronic lung condition are at an extreme risk for catching this virus and it can cause severe complications including being readmitted to the hospital and intubated and back on a ventilator. Because of this risk Kennedy will be given Synagis shots to help prevent infection and must be guarded carefully against sick people. She has to be kept away from crowds for the duration of RSV season. RSV season usually lasts from September/October to April depending on the area. Since we are not anxious to be back in the NICU we are going to be taking the following precautions:

No sick visitors- If your sick or you think you might be coming down with something or someone in your household is sick please stay home.
Masks- If Shawn or I feel your questionable or maybe you just have an allergy drip or a cold sore we may ask you to wear a mask.
Hand washing- No I probably won’t make you do the full three minute NICU scrub, but you will have to do a good scrub up to your elbows before you may touch her. Also we may have you use a hand sanitizer after washing.
Kids- School age children are big on getting colds and being exposed to them so during RSV season we really aren’t letting them touch or hold Kennedy.
Speaking of Holding- Preemies react very differently to stimulation and become over stimulated easily. Shawn and I will help you to know if she needs a break. She won’t be able to handle the passing around a typical newborn gets and we will probably limit the people who are allowed to hold her.

I am posting these guidelines so that everyone will know what to expect when they visit. Please don’t let the info scare you or keep you from visiting and please don’t take any of the precautions personally. We just spent 137 days in the hospital and like I said we are not anxious to go back.

So now that she is home is this the end of the blog? HECK NO! Its just the beginning. So here is something to keep in mind as you continue to follow the blog- Kennedy has two ages. Kennedy was born on May 11th which means her actual age is almost 20 weeks old. Her second age is called her adjusted age. It is how old she would be if she had been born on her due date. Her adjusted age is 10 weeks old. Her adjusted age is used when looking at developmental milestones. Kennedy will always be behind other kids born the same time as her. She will always be a little smaller and more petite but as she gets older (5 or 6 years and up) the differences will become less noticeable. Even though she is actually a little over four months old her development is closer to that of a two month old. It might take her a litter longer than average to rollover, crawl, eat and walk but she will catch up in her own time.

What’s will Kennedy’s life be like now that she is home? Well she still on most of the same medications she was on in the hospital. 8 to be exact. She also came home with oxygen since we are at a higher elevation than the hospital. They sent her home with the oxygen, but not on it. Shawn and I will be monitoring her breathing and deciding if she needs to go back on the oxygen for a while while she adjusts to the higher altitude. She will be followed closely by the High Risk clinic, BPD clinic, the eye clinic and the Gastroenterologists at the hospital as well as her local pediatrician. So other than her doctor’s appointments she will be on lockdown for the duration of the RSV season.