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

more milk!

Good progress on Little Ella's Feedings.

Over the last week, she has gradually been given more milk and less IV fluids, and her belly is taking it. As of today, she is being fed 11ccs per hour which is almost a full feed. Over the next day or two, she will get up to the full feed rate of 13ccs/hr. At this point, she will no longer need her main IV line for feedings, so they could potentially take this out! She is now getting most of her medications through the feeding tube in preparation for taking out her last med line. Next steps will be to feed her in larger doses with short breaks instead of continuously, eventually working up to bottle or breast feeding.

Increasing her feedings is really important for her now, as her biliruben levels have been rising, and her skin is slightly yellow. She is now on two medications to protect her liver from damage. More feedings will allow her liver to process the excess biliruben and send it out with the poop.

She is getting older and more awake and aware. Sometimes not so happy - the nurses think that she has gas from the breast milk, and give her doses of baby beano, which seems to help out a bit. And the auto-rocker is her new ride (do they make this in big kid sizes?...).

Things seem to be going very well, and the doctors brought up the H word... Potentially we could be transferred to Elmira for the final weeks of recovery for Ella. Fingers are crossed.

Little Ella now weighs 4lbs 9oz.

Love Bill Denise Ella T

Milk Please.

Over the last four days, little Ella has made some excellent progress.

Her feedings have resumed, starting with pedialyte (a sterile eloctrolyte-water solution) which is pumped slowly into her stomach through a tube. Very little residuals and no green bile in her stomach confirmed that the stuff was moving down the line. Sooo, they started her on very small amounts of breast milk on Saturday.

Seedy Mustard Poo on Sunday! This is the ultimate confirmation that her surgery went well and her bowels are working. Relief. Since then, her feeds have been increasing in volume - 3ccs an hour, up to 4cc/hr today. Still getting most of her nutrition from the IV, but going in the right direction. For babies this size, she would have to get up to about 2 oz per feeding which comes out to about 15ccs/hr.

Other stuff - she is finally off of her morphine and versed pain meds, all of her IVs except for the main line have been removed, she is back in a big kid crib, and can wear her ever-expanding wardrobe of pink outfits and blankets. She is up to 4lbs 4oz.

Extubation at last!!!

Ella has made speedy progess on the standard ventilator and was deemed ready for extubation this morning! However, it was a busy morning and we almost got pushed back to Thursday, but at 3pm we got the green light for removing the tube. Mommy got a little nervous when we were waiting for the respiratory therapist and Ella got a little cranky and started dropping in her oxygen saturation. Then out of nowhere, Ella let one rip and was calm and happy as can be again. Lo and behold...a monster poop! Yes...Ella is pooping again...and doing it the old fashioned way into a diaper! We are all pleased that things seem to be starting to work in her belly...especially Dr. Lee. One of the nurses said she would have loved to have bottled up the joy Dr. Lee had over this big step. So now we are back on the FP nasal canula sitting pretty at 26% oxygen and the next step will be to try out her reconnected intestines with some pedialyte sometime in the next few days and after that restart tube feedings. First, we will let Ella adjust to breathing on her own again and make sure she doesn't have too many secretions backing up in her belly before we make her do more work... but we are making excellent progress!

Lots of love - Denise Bill and Ella T

Venting

Great progress for little Ella yesterday. They finally gave her a chance on the ventillator, and she is doing very well. The vent is still a tube directed into her lungs, but it only supplies a lower pressure and assists her with breathing if she falls below a set rate. So far, she has been primarily breathing on her own, and at a low oxygen setting of 24%. Doctors are very pleased, and say that she is now not far away from getting off of the vent as well - maybe a few days.

Also, they doubled-up on her lasiks meds to help her pee out additional fluids. Her appearance is much less puffy now, and she looks almost back to normal. She still has lots of fluid and goo in her lungs which are suctioned out regulary, so they will continue her on the lasiks to help eliminate the extra fluid. They are gradually lowering her morphine meds from surgery and oscillator - should be off of these soon.

Her weight is now 4lbs 4oz.

Love - Bill Denise Ella T

oscillating...

Eight days after her surgery and Ella is still on the Oscillator. She wants to breath on her own, which works against the machine to respirate her, so the doctors have increased her sedation several times over the last couple of days. Even so, she has been awake, sqirmy, and still tries to breath over the machine.

Slight reductions in her settings. Doctors have been monitoring her blood gas levels by taking samples every four hours. They look in particular at her oxygen and CO2 levels - these levels are critical, especially now as her brain is developing. Her lungs have not been healthy enough to sustain proper levels even on the respirator, which is why the oscillator is being used.

Rumors are that they might be able to take her off the oscillator and go to the respirator maybe today. We will believe it when we see it...

They have re-started her lasiks (dieuretic) medication to help her eliminate all of the excess fluid. She is starting to look better - like our baby instead of puff-baby.

Love - Bill Denise Ella T

better Os

Sunday, Ella still has problems breathing due to lots of fluid and goo in her lungs, and a partially-collapsed right lung. Adjusting her position and the position of the tube has not had much affect.

Doctors decided to try giving her some nebs last night - atomized medications that she breathes directly into her lungs. Within an hour, x-rays show that her lungs are clearing up, and her right lung is mostly open. She has stopped fighting the oscillator by breathing on her own and seems relaxed. By morning, they have been able to turn her Oxygen down to 30% - compared to 60-70% yesterday. This is the best progress that we have seen since her surgery.

Most likely she will still be on the oscillator for another day or two.

Love - Bill Denise Ella T

still oscillating

Little Ella is still causing us extreme heartache.

She puffed up to lil' sumo Ella (eyes swollen shut, and belly stretched taught and shiney), but finally started to pee Thursday evening - 36 hours after surgery with the help of a diuretic. And the pee was huge - 50+ccs went around the catheter and overflowed her diaper onto the bed!

She continued to pee and her swelling has gone down gradually (now looks like big lil' Ella), but she has still required high pressure and oxygen settings to maintain her respiration. Contributing factors are her underdeveloped/damaged lung tissue (BPD condition), lots of extra fluid around her lungs, and a partially collapsed right lung.

Got a scary call on Saturday AM - Ella had a respiratory incident which they had a hard time getting her to recover from. We rushed in to the NICU and spent a long day at her side. Her potassium levels were also down due to all of her peeing - so they have increased her dosage in her daily IV feeding to keep this from happening again. At the end of the day, they turned her onto her right side to help with opening her lung.

Doctors predicted that she would probably continue needing the oscillator over the weekend, and probably into Monday, but it is difficult to watch. As of this morning (Sunday - I lose track...) oxygen settings are slightly lower, but she has been fighting the oscillator and tries to breathe on her own, so they increased her Morphine dosage.

The ups and downs wear mom's and dad's nerves thin, and patience is difficult. But we are still hopeful that she will pull through. Will keep you all posted...

Love - Bill Denise Ella T

Re-Connected and Recovering

8/20/2009
Re-connection surgery took place yesterday morning. They took her away at 9AM for preparations, started surgery at 10 and lasted until about 12:30. Surgery prep included aenesthesia and re-intubating her for the ventillator.

Good news from surgery. The Re-connection went well.They found no necrosis (dead tissue) or constrictions of her intestine which would have needed to be cut out. They did find sections of intestine that were twisted from the previous surgery and could have contributed to her difficulties with digestion. These they straightened out before re-connection, so they should heal up fine. Also found - several spots of adhesion, where scar tissue had formed from the previous operation and attached her intestine to the inside of her abdomen. They freed these spots before closing her back up.

Tough news - little Ella is having difficulties recovering from surgery. Coming out of surgery, she is heavily sedated and the ventillator is doing all of her breathing for her. Her face and body is really puffy - also typical of post-op liquid retention, but it is difficult for us to see. They have started her up on a Morphine drip to control her pain as she comes out of sedation. Also, she has "soft" blood pressure readings, and doctors have put her onto several medications to help her bring these up. She was not peeing, so a catheter was inserted.

Several hours after surgery, she still was having difficulty breathing - her lungs are not very strong due to her BPD condition, and she has quite a bit of fluid in her lungs from the surgery. She needed a transfusion to help with her blood pressure. Due to her breathing problems, they had to switch her to the oscillator machine. We placed a couple of late-night calls into her nurses, and this appears to be helping her breathing.

So, her recovery is coming along slowly, but it is difficult to see her regress and hard to be patient. Her next steps need to be improvement of her blood pressure and breathing, and removal of the ventillator. Once she has stabilized, and she starts to pass poop, we can again try to start feeding her. No estimate at this point how long before we can try, but we are hopeful.

Side note - Ella's original due date was to be August 23rd, which will be this Sunday. She is now over 10 weeks old, and has grown to over 4 lbs.

Love - Bill Denise Ella T

Wide Awake

Not much.

Ella is now bulking up to 3 lbs 12 oz.

Still on the nose canula , without much reduction in flow since the last update. She has stabilized a bit, and with fewer "incidents" of low oxygen.

She had an eye exam, which so far shows no sign of ROP (Retinopathy of Prematurity), but her eyes are still immature - she will need another exam in two weeks.

Also, she had a lower GI study to check to make sure that her large intestine has healed any previous perforation in preparation for surgery. This involved injecting a dye into her rear hole and taking a series of time-delayed x-rays. Pretty cool actually - it shows how the dye progresses up through the system. Good news, no leaks were found and her lower GI looks in fairly good condition. Green light for surgery.

Feedings have been up and down for the last week. Doctors have switched her to a broken-down formula (Neocate), and have changed up the schedule several times. Sometimes she digests her dinner, sometimes not - it gets sucked back into the feeding tube when checked by the nurses.

Her re-connection surgery is quickly approaching - this wednesday Aug 19th. We have talked to the surgeon (Dr Lee) and his team - they feel that her re-connection should help to address her digestion issues. Could be a twist in her intestine or some scar tissue from the previous surgery that is interfering. Depending on what he finds during the surgery, it could take between 1 1/2 to 4 hours. The bad part about surgery - she will be stressed and medicated, NPO (nothing by mouth ) for 2 weeks and will need to go back onto the ventillator for a while. Hopefully she will recover quickly and will get off the ventillator and will be able to feed soooon. Fingers crossed - she can come home by mid-september.

Love - Bill Denise Ella T.

mostly pics

Hi!


Ella's first smiley-face tie-dye onesies.
Thanks Kathryn.

Belly News

Ella continues to grow. She is now up to 3lbs - 8oz.

Her breathing has improved significantly. Recently the doctors have tried giving her a diuretic medication that has helped to flush out fluid from her lungs (and makes her pee lots...). This has really stabilized her breathing and reduced the amount of extra oxygen that she needs. She still gets too comfortable at times when sleeping and stops breathing for short periods (sleep-apnia). This is something that she will grow out of as she gets older. Of course we cannot take her home until she decides that she is ready to cooperate...

This improved breathing is good news - makes it easier to hold her, and less stressful for mom and dad since her monitors beep much less often.

Her feedings have been up-and-down. Feedings of breast milk resumed on tuesday, but resulted in lots of residual stuff coming from her stomach. This means that her intestines are not processing the feedings fast enough. So, doctors have tried switching to formula instead of milk, and have tried lowering the rate of feeding, both with marginal results. Next we will try a pre-digested formula that may be easier for her to tolerate.


Ella's Nurses have come to the conclusion that Ella is sensitive to the light in the room since she breathes and sleeps much better when the lights are dimmed. So, they hooked her up with her own version of a 4-post canopy bed. Livin in style.

Probably the most significant news of the week - Dr. Lee has scheduled her re-connection surgery in 2 weeks - Wednesday Aug 19th. He feels that she has grown enough to tolerate the stress of surgery, and the sooner that he can get her hooked back up, the better. We are really nervous, but hopeful that she will come out of it and make a quick recovery. This gives us a light at the end of the tunnel - after surgery, it will take several weeks of recovery, but if things go well we could potentially be ready to take her home sometime in September (fingers crossed!!!).

This week mom and dad went home for a visit, and picked up a cradle, carseat, stroller, and other stuff. Ouch, this parenting stuff is not cheap. Also Ella had some good visits from Grandma and Grandpa T, Kathryn, and Grandpa C.

Thanks for all the continued well-wishes.

Love - Bill Denise Ella T

holding pattern

Not much news since the last post.

Little Ella continue to grow, and is now up to 3lbs 3oz. She is now over 7 weeks old.

In a holding pattern with her feeding and breathing.

Friday night she had about 3oz of green bile in her belly, but since then almost nothing. So, her belly seems to have calmed. We are hoping that the doctors will allow the feedings to resume on Monday.

Friday our little vampire got a transfusion since her hermatocrit (red blood cell) level was on the low side. This seems to have made her happier, but still she swings on her oxygen levels - mostly she just gets lazy and decides not to breathe for about 20 seconds at a time. Hopefully as she ages, she will see the error in her ways.

Love - Bill Denise Ella T