Five Weeks Old

Well, we made it through our first weekend at home! With every day we get more and more settled in and into a 'routine.' Not so much of a eat and sleep routine (that's always changing) - more of a how to prepare before each feeding. So far the routine includes, first, changing Ella and not messing each diaper cover. Yes, we're using cloth diapers - and very thankful seeing how many diapers we've already gone through and the fact that Ella likes to wait for a clean diaper before she goes poop! (PS- The laundry isn't as bad as everyone assumes. And knowing that there we are saving our landfills from thousands of disposable diapers along with saving us from buying packages and packages of diapers sure makes it worth the little extra effort cloth diapers require!!)

Next, we come downstairs and get Ella's medicine ready. She takes one med every 8 hours to help get rid of the bilirubin (she is still quite jaundice), another med every 12 hours to help with acid reflux, and a vitamin supplement with iron once a day since she left the hospital slightly anemic (which is not a surprise with all the blood that was drawn from her). Of course, she is unable to take it by itself so that means breast milk needs to be defrosted (our freezer is stocked with about 40 4-ounce containers that I pumped while Ella was in the hospital), a calorie fortifier added, poured into a great bottle called ReliaDose to help administer the meds, and then warmed up. Finally, we sit down to eat, give the meds, and then rock to sleep.

This routine is done every 3 to 4 hours because we are in Operation: Beef Ella Up!! Since Saturday Ella has gained 1.5 ounces which doesn't sound like much but for Ella it's pretty good! We'll have another 'weigh-in' later this week.

Since we've been home we've gone for two walks, taken many naps, visited a neighbor's house, had a visiting nurse come see and weigh Ella, and had two doctor's appointments with one more Wednesday and one Thursday. It was so great to spend the weekend at home!

Little by little Todd and I are becoming accustomed to being a family of three. Todd is learning that Ella's eating schedule is now our schedule - which is different day to day and hour to hour. He cracks me up when he says, "Why do you have to feed her now, we're just about to (eat, go for a walk, etc.)." Like Ella and I get to choose when she is hungry - ha ha ha!!!

I think that's it for now, but keep checking back for more updates!!!

Day One

Weight: 5 lbs. 13 oz.

We made it through the first night - which was VERY scary for me! I was going through monitor withdrawal - which I hated. I became so dependent on the vitals monitor and tests to tell me that Ella was okay. Therefore, I hardly got any sleep worrying about if Ella was still breathing (even though she hasn't had any respiratory issues).




But after our first pediatrician appointment today, Dr. Trask made me feel much better by reminding me to take care of Ella as her mom not her nurse - which I think I was starting to feeling like in the NICU.




Other than Ella's first doctor's appointment, Ella received her first bath at home which she was not so fond of. Ella and I also took a nice long nap together - she's so snuggly!!




Thanks for all the e-mails!

We're HOME!!!!

You read correctly - Ella came home TODAY (Thursday)!!!! We are SOOO excited; however, it doesn't feel as though it's really sunk in yet! We were hoping to have her home by tomorrow but Ella's attending, Dr. Bommeraju, wanted to get her home before he went off service - which was today - and we didn't object!!

As mentioned before, Ella has a slew of follow up appointments - the first being tomorrow with one of her pediatricians. But it will all be worth it!

I'm sure many of you in-towners are now thinking, "When can we visit???" If you all don't mind, Todd and I are going to take this weekend to enjoy our time with Ella without nurses, doctors, monitors, and other babies. Furthermore, because Ella's immune system is still not to its fullest we really need to try our hardest to keep her healthy with A LOT of hand washing and keeping ourselves healthy as well!!!

Unfortunately, our journey is not over quite yet. A full recovery could take up to a few years. Therefore, keep those prayers, get well wishes, and good vibes coming Ella's way!!!

Gotta go change another poopy diaper!!! Don't forget to keep checking back!!

We love you all!

We're Getting There

Our big girl is 4 weeks old today!! Thankfully Ella had a good week last week - we only had to deal with two hiccups in her recovery. First, a slight dysrythmia was detected in her heartbeat. After an EKG and echocardiogram, the cardiologists are relating it to the fluid around her liver that's causing the belly to distend and push up on her heart. Therefore, they have decided not to treat it.

The second minor set back is that instead of gaining weight Ella has being losing about a half an ounce a day. Unfortunately, there could be many different reasons as to why she is losing weight. Her weight could have been artificially 'pumped up' because of the many products she had been receiving previously or because of her belly being distended. And now that her belly is starting to go down a little bit, the weight loss could be from the fluid being absorbed and discarded. Luckily, we can help her gain weight by adding calories to each of her feedings.

Our parents have been rotating through night duty so we can try to get home, shower, and eat before 9:00pm. We've bribed them with being able to hold Ella while they babysit!! Unfortunately, because Ella's immune system is still suppressed, Grandma, Grandpa, YaYa, Papa, Pops, and Mops need to dress in a gown and gloves when they hold her. Lucky for us, they understand and have not complained.

Little by little Ella has been reaching some goals. Ella's complete blood count (CBC) is nearing the normal range; her liver functions are nearing normal range too; and she is breathing room air on her own, therefore, she has been able to stay off oxygen for a few days.

When Ella does end up coming home we will be busy with outpatient appointments with the hematologist, gastroenterologist, cardiologist, among a few others. But I'll go to a dozen follow up specialists as long as it means we can get Ella home!

In the meantime, being at the hospital 8+ hours each day I have been able to get to know some of Ella's roommates and nurses. Ella shares the Golden Raintree 'pod' with 5 other babies. Over the past month we have seen many babies come in and out, but during this past week or so the babies have stayed pretty much the same so I had the opportunity to get to know Max's mom (who is also a kindergarten teacher in Cheektowaga and teaches with a parent of a child I taught this year) and his grandma, Alizah's mom (who is an art teacher at Heim) and her grandma, and Joseph's parents (who are Amish). Unfortunately, as of today all three of them were moved to Ironwood (another pod). I will miss them, but I am hoping to get together with Max's mom and Alizah's mom once we all get home.

Furthermore, we have gotten to know many of the wonderful nurses (some of our favorites are Chris, Lynn, and Peggy) as well as find out first hand the theory of six degress of separation. For example, Ella's primary nurse, Chris, happens to be Emily's (the Ledgeview librarian) good friend and college roommate's sister. My mom's cousin's wife, Judi, also works in the NICU along with my mom's manicurist's good friend, Shannon, who happens to live around the corner from us. Another girl from school's aunt was Ella's nurse one day too.

Finally, thank you for all the support we have received from you all whether it's a daily prayer, a simple gift left on our doorstep, a dinner prepared, a phone call, a text, or an e-mail. We can't begin to express our gratitude for the support we have felt over the past month. All we can say right now is thank you, thank you, THANK YOU!!!

PS - Keep checking the photo links to see new pictures that have been added!

In a Waiting Game

What to see more pictures of Ella?? Click on the Ella Michele's Pictures link in the upper left corner of this page!

Today is Ella's three week birthday! She has officially been off treatment for 7 days - the hematologists say the effects of her treatment can stay with her for 7 to 14 days. Right now Ella is stable...which is good. The ultimate goal, of course, is for her blood counts and liver functions to be 'normal'. But being stable is at least a step in the right direction.

Unfortunately, as predicted in the NICU, there have been bumps on the way. Ella developed bacteremia (a bacterial infection in her blood) last week. She has been on antibiotics and is expected to make a full recovery. Ella also has fluid accumulating around her liver which is making her belly look quite distended. However, after ultrasounds, x-rays, and further consults, she is able to continue to feed - which is good. Because of her distention, it does mean she still requires some oxygen since everything is pushing up on her lungs. So the sooner we can get her belly down, the sooner we can wean her off the oxygen.

Some of the exciting things that Ella has been able to accomplish is that she began breastfeeding! I am able to feed her at least three times a day. Furthermore, the amount she bottles has been gradually increased to what she should be eating and, therefore, she's been taken off fluids! We have also been able to hold Ella once again - sometimes for hours! Today we were pleasantly surprised to find that Ella had 'graduated' from an enclosed isolette to a crib. The nurses had also dressed her up in a cute pink outfit when we came in this morning.

Please, please continue to keep Ella in your thoughts and prayers!! We need many more good vibes to get her liver functioning at a 'normal' status, her blood count back to 'normal,' her infection cleared, the fluid out of her belly, Ella off oxygen, and, ultimately, to bring Ella HOME!!

Thanks again for all the support and help we've received!! We couldn't be getting through this rough time without YOU!

Ella's Treatment Done

Let me first apologize for not returning phone calls, e-mails, and text messages. Please realize that we appreciate hearing from so many of you; however, my day is pretty much spent at Children's. Todd went back to work last week and, therefore, has been coming up directly after work. And when we finally do get home there is just enough time to eat and go to bed. I have learned quickly that if I don't get enough sleep I become an emotional wreck (not to mention a little crabby).

Ella made it through her 7 days of treatment like a champ! She's proven to be such a fighter in her first 13 days of life! So right now we enter a waiting game to see if her liver will begin to function properly on its own.

As far as how much longer Ella will be in the NICU, we do not know. Besides getting better she also needs to be weaned off of her oxygen (which she is getting close to), weaned onto a bottle (which we started on Tuesday), and then weaned to take and digest the appropriate amount of breast milk for her age.

Little by little Todd and I have been able to take part in some parental 'duties' such as changing Ella's diaper and bottle feeding her. We can't wait to be able to hold her again when her immune system becomes a little stronger. It's amazing what we once took for granted!

My sister, Alysia, has pretty much taken over our household duties - cleaning, laundry, grocery shopping, and making goodies for the nurses and doctors. And between our dads and neighbor, Mike, our lawn and yard has been taken care of this week and last.

My mom is playing the role of chauffeur (as I am still unable to drive) as well as babysitter so Todd and I can feel comfortable leaving Ella's side 'early' some nights.

Todd's mom has been our 'cook,' making us a casserole to last a week so we don't have to worry about making dinner. And Todd's brother, Jeff, and sister-in-law, Kim, have supplied us with medical translations and gift certificates to restaurants near the hospital.

And when we were just learning about Ella's condition my brother's friend, Tom, came up to the hospital and calmed our panicked nerves by provided our whole family with a complete 'lowdown' using as simple of terms and analogies as possible.

Finally, thank you to all of those I have not mentioned for your phone calls, e-mails, text messages, prayers, and well wishes. Those are just as important! We appreciate and will take all we can get!!

In the meantime, keep your fingers crossed, candles lit, prayers going, and good vibes coming our way so that Ella only gets better so we can take her home ASAP!!