Settling in after 4 weeks at home!

The drive home from the hospital was a fun one. It seems that Ella loved being able to look out the window and explore this strange new world she was in. She was awake for almost the entire ride without a so much a a single grunt. But the day was a busy one...visits with a nurse from the chemung county health department, two different equipment companys making drop offs for her feeding pump and her oxygen saturation monitor, and a trip to Ella's pediatrician. Exhausting and there was no rest to come. As some of our nurses had warned....Ella makes a lot of noise when she sleeps. And she slept fine...mommy and daddy not so much. Over these past few weeks, she is doing better and has a few quiet sleeping moments, but we have had to adjust and sleep in shifts. Hopefully as Ella gets older we can have more normal nights.

Once we were home, Ella continued to be afflicted with the most severe case of Diaper Rash I have ever seen. It continued to get worse and worse, and was so raw that it was bleeding whenever we changed her diaper. To try to help the healing, we began airing out her butt...and it was during this time that we started to noticed that she was also having blood in her stools (not good.) So off to the ER we went (as advised by our home visit nurse.) After spending almost an entire day at Arnot Ogden, we were able to rule out an infection (thank goodnes, since this would have required admitting her) and began to suspect that she was not tolerating her formula. We put her on Pedialyte for 12 hours that evening until we could see our regular pediatrician in the morning and almost overnight her cute little bottom was healing up...and no more bloody poops. So now we are on a special, very gentle formula (so special it costs $35 a can and is only available with a prescription.) She seemed to enjoying this much better....however we are now faced with finding the right balance with the calorie content. Ella liked the formula prepared at the normal 20 calories, but we need her to grow. So we have been increasing the calorie content gradually and the higher it gets...the more she hates it. Figures! So no end to the feeding tube in sight yet.

In other good news...Ella finally passed her eye exam! Her eyes have fully matured and no more signs of ROP! Her lungs are also doing really well and she is having much better oxygen saturatin numbers...and because of this we are beginning to wean her off some of her lung medications. Will be nice to get down from 7 medications to 3.

As of Friday (11/13) Ella was weighing in at a whopping 7lbs 4oz! Ella is really enjoying this time at home and is beginning to develop an entirely new personality different from her days in the NICU. She loves her swing...as does mommy and daddy. We are finding that she is a wee bit ticklish and she is growing stronger and stronger and likes to push up on her legs to show us she can stand (with some help.) We look forward to making even more progress this next month and are excited to have her home for the upcoming holiday season!

Thanks again to all for your love and support!

Love-Bill, Denise & Ella T

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.

The good and the bad.

Bad first.
Ella may have been exposed to Chicken Pox, so she has been put on IV medication as a precaution.
Her eye exam this morning still showed no improvement to the ROP, but typically this condition will take 4-6 weeks to turn around. Not too bad...

Good news now.
Her blood test today showed that her biliruben count is down from 5.7 to 4.8. This means that her liver is starting to recover. Soon she will no longer need the liver medications, and her yellow skin will return to normal.

Also today Ella had a special x-ray study done to determine if she has kidney reflux. Almost since birth, she has been on antibiotics to prevent a Urinary Tract Infection, which could be caused by fluid leaking back into her kidneys (common among preemies). The test involves injecting radioactive dye through a catheter and then doing time-delay x-ray snapshots to check for leakage into her kidneys. Good news - she has no leakage.

Feedings are going really well. Her total feeds are now up to 65ccs, and she has taken 45ccs of this from the bottle.

Doctor Stevens stopped by to discuss the H word!!! Apparently he thinks that Ella is doing extremely well with her feedings - if she can get up to the full feeding of 65ccs by bottle, then he thinks that we can take her HOME. Even if her eyes have not fully recovered, we can return for testing once-a-week until they are good. Maybe HOME by early next week! Fingers crossed!

Love - Bill Denise Ella T

Delay - the sequel

Transfer to Elmira delayed again.

Ella's eye exam results on Tuesday showed no change in her ROP. This is good - she will only need laser surgery if the condition worsens, but the opthomologist wants to keep a close eye on her (wink wink). He wants to have her eyes checked weekly, but OK-d her transfer to Elmira.

We were getting set for transfer to Elmira again. Turns out that the opthomologist in Elmira is on vacation for three weeks and would not be able to check her eyes. So, we are still stuck in Rochester until further notice.

Not all bad. Ella will continue to get good care from her loving nurses here, and she will make further progress on her feedings. She is still being fed primarily from a tube, but working up in her feed volumes. If she can get up to a full feed from bottle/breast, then we might be able to take her straight home and skip the transfer to Elmira.

Dad has to go back to work starting Monday, so mom will be in charge of Ella for the weeks to come. Shooting for home by the end of October??

Love - Bill Denise Ella T

Clicking our Heels together...

Since our last installment, little Ella is now breathing freely on her own, and has started breastfeeding.

Her 53cc feedings are still primarily delivered through a tube into her stomach - pumped over 2.5 hours with a 1.5 hour break in between feedings. Docs are gradually compressing the time to allow her stomach to get used to processing the full amount at one time. She will need to be able to do this before we can finally take her home.

Breastfeeding is going well. We were initially concerned because some premies develop oral aversion and reject breastfeeding after not having any feedings by mouth for so long. But little Ella is a natural - she latched on at her first try. Mom makes about three or four of her feeding times every day, and the other times the nurses feed her a small amount (10ccs) in a bottle.

Even though feeding is going well, she is not gaining much weight. Docs have added in a suplement powder to beef up her calorie intake.

Her breathing is better, and over the last week she was reduced on her oxygen flow to the nose tube. Finally yesterday she had even the nose tube removed, and is now breathing on her own.

Lastly, we await her eye exam tomorrow. Recall that her last week's exam showed initial signs of retinal scarring (ROP). This should clear up by itself, but if not Docs will need to prescribe laser surgery. This may be the last thing to keep us in Rochester - we may be transferred HOME to Elmira for Ella's final weeks of recovery!

Love - Bill Denise Ella T

transferrus interruptus

We were definitely on the schedule for transfer back to Elmira sometime this week.

Then, Ella had her eyes tested again on Tuesday - the results will keep us here for at least another week for re-testing. Ella was diagnosed with Stage 2, Zone 2 ROP (Retinopothy of Prematurity) and depending on how her eyes are progressing, she may need laser surgery. Another roadblock, but not derailled.

Other than her eyes, Ella has been doing very well with her feedings. She has now totally switched over to breast milk at about 2 ounces (52ccs) every four hours mostly through her feeding tube. We gave her a first taste of breast milk (a tiny 10ccs) in a bottle on Monday also, and she seems to like it. It will take her a while of practicing to coordinate the sucking and swallowing before she can take her full feeds by bottle or breast. As of today, we are up to 15cc bottles three times per day with the rest of her meal by tube.

They removed her final main IV line on Monday (that had been in place for 3 months), which is confirmation that her belly is working well and will not need further surgery. Relief. She still gets medications, but all of them are now given orally with her feeds. Much easier on the nurses also.

We are still not totally sure how long before we can take her home, but the end is in sight.

Her latest weight is 4lbs 12oz.

Love - Bill Denise Ella T