There's No Place Like Home

After yet another delay last week, and a close call today (trouble digging up a monitor), we are thrilled to announce that we will be taking Ella home this Friday!! However, there are still lots of challenges ahead: she will be coming home with an NG feeding tube while we continue to work with her on taking her bottles, and an apnea monitor. The announcement below I have blatantly stolen from another NICU mom (thanks Rachel) who wrote a thorough and informative update on her own blog on keeping our girls safe now that they are home (at the worst time of year.)

As I have already explained to many of you, we are unfortunately not going to be welcoming alot of people to meet Ella for some time as she is still so very fragile (any sort of illness would surely put her right back in the hospital) & has a compromised immune system. Until RSV season is over (more about that below), our wonderful friends & family will be getting to know Ella primarily through photographs.

Now onto RSV:

For those of you who plan to visit us over the next several months, and even if you are not, please take a few minutes to read this.

If you are not aware of RSV, respiratory syncytial virus, you are among the majority. Most people have not heard of RSV, even though nearly every child has had the virus by age two. For full-term babies, RSV typically is not any worse than a common cold, but for preemies, the virus can be quite different. Babies born earlier than 36 weeks are at the highest risk for serious complications like pneumonia, bronchiolitis, and other sometimes fatal complications.

Our baby was born premature and had low birth weight; these are among the highest risk factors for contracting RSV and developing serious complications. (This website offers a great visual comparison of a preemie’s lungs compared to the lungs of a full-term baby: http://www.preemiecare.org/LungsTrees03-4.pdf)

Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Ella safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands and up to twelve hours on objects, and it spreads very easily, especially from child to child. Studies have also shown that infants pose an even higher risk of spreading RSV to others.

You may ask, “Can’t they fight it off and build up their immune system? Kids need to get sick, right?” The simple answer is NO. Since our baby was pre-term, she did not acquire the necessary immunities to fight off infection. If she were to contract RSV, she would be hospitalized and could develop serious complications.

We’ll be asking our visitors to follow a few guidelines to help prevent Ella from contracting RSV or any other illness.

We ask that all visitors do the following:

1. When you arrive, please wash your hands and use hand-sanitizer as needed before touching the baby.

2. Please, if it is possible, get the flu shot.

3. Please refrain from coming over if you are currently sick and have not been symptom-free for at least 5 days, if you live with someone who is sick, or have been in close contact with someone who is sick.

4. If you smoke, we ask that you change your clothing and refrain from smoking prior to and during visiting, as a preemie’s lungs are very sensitive to smoke. Most RSV sites recommend against passive smoke exposure.

5. If you are parents to a baby or toddler, please refrain from bringing them to our house during RSV season.

Unfortunately we will not be attending many events during RSV season. Our goal is to make it through this and the next RSV seasons without Ella contracting RSV or any other serious illness. Her lungs are still very fragile until she is 2-years-old, especially since she has chronic lung disease.

Please understand that this post is not meant to offend anyone, just simply to provide an explanation.

We hope you understand, and we appreciate your help keeping Ella safe.Here are several resources with additional information about RSV below.

http://www.preemiecare.org/rsv_resourceshtm.htm

http://www.preemiecare.org/rsvfaq.htm

http://www.preemiecare.org/rsv2.htm

http://www.mostonline.org/preemieBB/viewforum.php?f=82

I would like to think that we will continue to update this blog monthly. For more frequent updates you can always check out Denise’s Facebook (Bill is still holding out on the whole FB experience.)

Love – Bill, Denise & Ella T

4-plus months...

Ella News Flash:

eye exam - good

nose blockage - bad

hearing test - good

feedings - full bottles!

diaper rash - baaaad.

biliruben down - good, and eliminate another med.

breathing - good, removed all test leads except for one.

"H" word - great!



Monday's Eye Exam showed that Ella's eyes are making some progress. She still has ROP but it has improved into Zone 3 (perhpiral vision) of her eye....closer to full maturity.

She passed her hearing test in both ears - she did not pass her initial test last week in the right ear.


Little Ella has started taking full bottles occasionally. She still gets tired out, especially at night and needs the balance of the bottle pumped into her stomach. Unfortunately we cannot let her eat only what she wants because calories and growth are critical for her development at this point. So, she still has a feeding tube and an O2 sat monitor which can be removed once she is doing full feeds consistently on her own.


She has been diagnosed with choanal atresia on the right side of her nose, which is a permanent obstruction of the nasal passageway. Turns out she's been breathing with only one nasal opening since birth. She will eventually require surgery to repair this, but since she is doing okay with just the one side and breathing through her mouth, the docs will wait until she is much much bigger to do this - probably until she is 2-yrs old.

Mom and Dad want to finally bring little Ella HOME, and looks like we will get that chance... perhaps this weekend? Even though she is not taking full feeds, we will be getting some training on how to insert the feeding tube down her nose, operate the pump, give her meds, and CPR just in case. Scary stuff, but parenting aint always easy.

Ella is now weighing in at 5lbs 3oz!



Next update - HOME report.