Ten Weeks Old

Whoa - this past week Ella slept from 10pm until 4am twice!!! Of course with that comes the couple nights in which she awoke at 2am, 4am, and 6am. I have to admit that as long as Ella and I have one good stretch of sleep (usually from 10pm to 2am) it doesn't bother me to get up as much as I thought it would. It's when I only get an hour or so of sleep that I find it the hardest to wake up and stay up. Although even then I can't really complain because she is good about eating and then going right back to sleep.

We had a chance to reunite with Chris, Ella's primary nurse while in the NICU, this past Friday. We also got to see Chris' nursing student, Kristen, who helped out with Ella and who is now training to work in the NICU. She was great with Ella as well and will be a great addition to the NICU nursing staff! Chris was quite impressed with Ella's appearance, growth, and development and couldn't get enough of her - even shedding a few happy tears. We were so lucky to have her take care of Ella and even happier that we've been able to stay in touch.

This weekend I had my first night out with some friends for a bachelorette. Granted I was home by midnight and only had two drinks all night but it was nice to get out especially since I missed Amy's wedding shower while Ella was in the hospital.

And now that school is done and my teaching friends are off I look forward to spending time with them walking, visiting, swimming, eating, and more as this is my first summer off since 2000. Although this may end up being my hardest working summer!!!

In the meantime, counting down the days (1 week from today) until DJ, April, and the twins arrive on July 8th! I am so excited to see both all of them and to hold and snuggle with Maya and Zachary.

Finally, wishing a very Happy 34th Birthday to Todd on July 3rd!

Nine Weeks Old

Weight: 7 lbs. 6 oz.
Length: 20.5"

Well our big girl is getting even bigger!!! Ella weighed in at 7 pounds 6 ounces yesterday at her two month appointment! That means she gained 9 ounces in the past 7 days - way to go Ella!

Little by little we have been getting out more and more. In fact our pediatrician gave us the go ahead yesterday to start bringing Ella around children as long as they are not symptomatic. She said they can play with her feet but should not be giving her kisses or around her face at this point. And of course, as with anyone who is close to her (or really any infant) hands need to be washed, washed, washed!!!

Last week Todd put out his first 'Red Alert' call to me while I was at my principal's retirement party. It began with a text that read "Ella is a beast" which apparently translated to Ella hadn't stopped crying since I had left. After panicking that Ella was getting sick and rushing home - all it turned out to be was that Ella was hungry. We now know that Ella basically only cries if she is hungry (which is a blood curdling cry) or wants to be picked up.



Todd and I also got out to play our first round of golf on Friday. Aunt Kim came over to watch Ella while Todd and I went golfing with Todd's dad and brother at the Buffalo Tournament Club. Todd had a fantastic game of golf! I had fun too!


We then ventured out to Niagara Hartland Campground in Royalton Hartland on Saturday to visit our friends Joe and Chris who have parked their fifth wheel there for the summer. It was our first mini trip away from home and we learned that Ella needs to be on a full stomach if she is going to be happy while travelling in the car.



Yesterday (Monday) Ella met Great Grumpa for the first time. He got a kick out of holding his first great grandchild. Just wait until the twins come into town (July 8 -18th)!!!


Today I was able to get into school to say goodbye to my kindergarten class as it was the official last day of school. Other than the kiddos, I absolutely don't miss school at this time of the year - doing report cards, packing up the classroom, end of the year paperwork - nope, don't miss it at all. I also officially submitted my letter requesting to take at least the first half of next year off to stay home with Ella. I can't wait!!!

And the most exciting news to come in today...my step-nephew, Braiden, came home after 10 days in the NICU. Brian and Barb are, of course, thrilled to be able to finally bring him home (we definitely know that feeling)!!! We are excited that Ella has another cousin to play and grow up with!


In the meantime, I've rearranged Ella's pictures since we are building up quite a collection. You'll still find them to the upper left but now they are sorted by month. I try to add new ones each week so keep checking in.

Eight Weeks Old

Two months old and so much to report on!!! Where to begin? Let's go chronologically...

Last Tuesday night Ella made the move into her crib! Ella likes to sleep with her arms out which were then hitting the sides of the bassinet. Furthermore, she would end up scooching herself down and I would find her smooshed against the foot of her bassinet. So we prepped her crib and room and tried it out. So far so good - she has slept in it every night so far!

On Wednesday I went to visit my kiddos at Ledgeview. It was Fun Day so I was able to not only visit with my kiddos and some of their parents but also get to see many of the teachers and staff that I missed so much but received so much emotional support from during the past two months. Of course, the children were upset that Ella wasn't there, but I hooked my camera up to the TV and gave them a little slideshow.

I also received our webcam on Wednesday and, of course, called up DJ, April, and the twins. We're loving it!

On Friday, Ella had an appointment with the cardiologist. Upon entering the waiting room we saw one of Ella's last roommates, Molly, and her mom from the NICU. Ella had one last EKG and was discharged from cardiology because all looks well!! We then took a walk up to the NICU to visit with Sara, her PA, and Lynn, one of her nurses. It was so great to see both of the them and show off how well Ella is doing!

On Saturday, Braiden was born to my step-brother, Brian, and his wife, Barb. But you'll never guess where he is now. Yes, in the NICU at Children's. In fact, he is in the same room as Ella was - Golden Raintree. I believe he is in there because of immature lungs as he was born about 4 weeks early and possibly an infection of some sort. Therefore, please add Braiden, Brian, and Barb to your prayer and good vibe list! I, unfortunately, know exactly what they are going through - and it's not fun!

On Sunday we had my Mom & John, Dad & Heather, Gram, Todd's parents, and Jeff & Kim over to celebrate Father's Day, Mother's Day, Jeff's birthday, my birthday, and Ella coming home. We had a great time! Ella enjoyed all the company was well. We had not all been together since one of the worst days we experienced in the NICU.

On Monday Ella had an appointment with GI. According to my appointment sheet I received from the NICU the clinic was at Children's. Unfortunately, upon getting there I found out it was really at a satellite location on Sweet Home Road. After a few phone calls they were able to see Ella later that day. In the meantime, my mom, Ella, and I went up to visit Brian and Barb in her room. I had gathered a bunch of things that I found really helpful while Ella was in the NICU and passed them on to Barb. We finally got to the GI appointment and got a bunch of good news - she now weighs 6 pounds 13 ounces, her liver functions are normalizing (her direct bilirubin is trending down), her blood counts are normalizing, and she has been taken off of two of her meds! She only needs to continue taking the vitamin with iron.

While going back to the waiting room we ran into one of Ella's first roommates, Greyson, and his parents, J.J. and Chris. It was so great to see all three of them! It was also at that time that we got hit with that hail storm. And our new VW felt it as it now has pock marks all over it.

Finally, Ella actually slept for a good 5 hours last night: 9:30pm-2:30am!! But that didn't last long, because her next stretch was not even 2 hours.

Thanks for checking in!!!

Seven Weeks Old

Has it been almost two months...wow! Ella has finally hit the 6 pound mark. She was weighed at the pediatrician on Friday and tipped the scale at 6 lb. 3 oz.!!!

On Saturday, Ella got to meet her cousins, Maya & Zachary, via iChat at YaYa's house - they really hit it off - we couldn't get a word in edgewise!! We just bought a web cam for our computer so we can Skype from our home too soon!

Ella is becoming much more alert, beginning to talk a bit, able to entertain herself for a few minutes when laid down on her own, and enjoys her swing...as long as it is vibrating and on the fastest setting! She loves talking walks (which we try to do everyday) or being pushed in the stroller around the yard when we are watering the gardens.

Ella and I are also getting somewhat of a routine down - at night at least. We all go to bed around 10:00pm, then she is up about 2:00/2:30am - like clockwork - to eat and get 2 of her meds, then goes back down until 5:00/5:30am to eat again, and, up again around 6:15am (argh). That is about the time Todd gets up, so often times Ella and I end up snuggling in bed until around 8:00am when she eats yet again. Then our day begins. She's not a fan of napping on her own during the day so that makes getting stuff done around here little challenging.

Wednesday I am going to try to get into school to visit my kiddos during Fun Day! I have missed them and can't wait for their hugs! Unfortunately, they will not be able too see Ella as she is going to stay home with YaYa. However, I can thank the NICU experience for getting me to express and freeze my milk and bottle feeding Ella. Because of these two things, I am able to leave for more than an hour's time!

On Friday we are going to the Cardiology Clinic and then we are going to stop in at the NICU to visit Sara, our favorite physicians assistant, and Lynn, one of our favorite nurses.

And then on Sunday we are getting ready to celebrate all the events we missed being in the hospital. We are going to have YaYa & Papa John, Pops & Mops, Grandma & Grandpa, and Uncle Jeff & Aunt Kim over for a brunch on Sunday in which we will celebrate Ella coming home, my and Uncle Jeff's 31st birthdays, Mother's Day, and Father's Day!

Check out the new photos. We'll keep you posted!!!

Six Weeks Old

Wow! I can't believe it's been six weeks already! I'm trying to soak up every minute of it and not wish away any of the 'stages.' Therefore, I think we are doing a good job of spoiling her with lots of cuddling. I just can't seem to get enough of holding her!!

I am doing much better with the night sleeping. Ella will actually sleep at least one block of 4 hours in a row and then another 3 hours or so most nights. And then I have taken every one's advice and sleeping whenever I can - day and night! Todd has taken over basically all household chores (in and out) as Ella is not liking when we put her down. But after not being to hold her all the time for the first 30 days - I definitely don't mind it now!!!

We went to the hematology clinic on Thursday and her blood work came back good. Only her red blood was down a little bit (making her anemic) - but nothing Dr. Ambrusko was overly concerned about. And her bilirubin is at a plateau right now but she doesn't seem as jaundice.

Unfortunately, with the 'advisement' from the doctors to stay away from children it gave me total anxiety when I had to go to the clinic for the appointment and was surrounded by kids and icky parents. Thankfully my mom came with me so I could wait with Ella outside until she was called.

We have also had another appointment to Dr. Cavalieri, Ella's pediatrician, and he said other than her liver being enlarged (which appears to be functioning) she looks and sounds good! We are still working on weight gain, but she is eating and pooping so much more and more consistently now that we're home!

Now that I have been able to start calling and e-mailing again, I have had people ask me for clarification as to what was wrong with Ella. So with help from my brother's great friend, Tom, here it goes. The easiest way to explain it is that the blood disorder part presented itself like leukemia and those cells tend to clog up the veins and arteries. Since the liver is basically a huge filter that runs all the blood through it, it can get clogged and damaged. In addition, unlike adults where blood cells are only produced in bone marrow, children produce blood cells in bone marrow, the liver, and the spleen. Therefore, the liver was probably affected by the extraordinary production of yucky blood cells since so many were produced. Therefore, Ella actually received a small dose of chemotherapy as her treatment (so small that she did not have any side affects) which was like giving her an oil change since yucky oil (Ella's blood) gets thick and can clog up the engine (Ella's liver). Fortunately, as of the bone marrow biopsy that was done before she left the NICU, her bone marrow appears to be making all good blood cells - yea! Now we just need to keep it this way!!!!

I still cannot express to you the gratitude we have for all the support we have received and continue to receive! I mean it when I say we could not have gotten through this without knowing how much we are loved and supported!

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!