Thursday, December 30, 2010 9:12 AM, EST

It has been a busy few weeks in our household! Everyone except for Cade and Jacob got a virus that was going around, possibly the flu, it put most of us in bed for 2 or 3 days and included a horrible headache, congestion, coughing and a general feeling of exhaustion. Tori seemed to be spared some of the symptoms, she only ended up with a stuffed up head and was extremely crabby, but it was enough to produce a very significant brady episode on Monday December 20th. Apparently eating with a extremely stuffed up head messes with her newly coordinated suck-swallow-breath skill. Unfortunately when she quit breathing she didn't seem to know what to do to recover so I had to stimulate her (rub her rather roughly and pat her back and gently shake her) to get her to start breathing. It all happened very quickly and she was fine as soon as she took a breath, but it was very scary! In my heart I know that she would have self recovered, but I just couldn't wait for her reflexes to kick in! Since then she has been doing really well, although still crabby and stuffy but she seems to be battling through her first real head cold like a trooper!

I had to cancel her follow-up appointment with her surgeon because of us being sick, I didn't want to make anyone else sick by going into the hospital with a bug, so I need to reschedule it.

She is growing like a little weed, hitting her 3 month growth spurt right on schedule, nursing all the time and outgrowing most of her tiny outfits! It feels strange to NOT pack away her outfits, since for the first time ever, we know there won't be another baby!

Sorry everyone, I am doing some much needed site maintenance and also trying to copy over Tori's Caring Bridge journal entries since it occurred to me that if her journal isn't active, they might delete it and I would hate to lose all my thoughts from those months.......I plan to dedicate more time to the blog in the upcoming year........

Hope everyone has had a wonderful holiday season and that 2011 brings you the things you want. 2010 has been quite a ride!

Wordless Wednesday:

Merry Christmas 2010!

Through the blessing of friends, the love of family and the fellowship of our church family, Christmas is especially merry this year! Hope that you have a wonderful Christmas and marvel in the wonder of God's gift of his Son to each of us!

Just a few pictures! Jacob, Tori, Luke, Noel, Sophia and William on Christmas Eve....and the family, minus Noel and Sarah (who were sick) on Christmas at my mother's house!

Christmas Craft Day
Submitted by Melodie

What an absolutely GREAT TIME! The kids were so excited with all the ornaments they made, I completely forgot to take pictures during the event and by the time I got around to it, some of the ornaments were MIA, but here are a few that we made. I don't have pictures of the cards the kids made, the round foam ornament or the beaded snowfllakes. Hopefully this will become an annual event with the homeschool group!





What: Christmas Craft Day
When: Friday, December 17th 10:30 AM to 1 PM
Where: Wyoming Public Library Meeting Room (located in basement) 500
Springfield Pike Cincinnati, Ohio 45215 Phone 513-369-6014
Who: Homeschoolers of all ages
RSVP: Melodie by Tueday December
14th so that I can get a count of participants to everyone
What to bring: Christmas themed craft to share and your lunch/snack
if you wish to eat

Join us for a fun day of crafting! Each family will be asked to bring
supplies to make one christmas craft for each participant (example, if
we have 12 kids attending and you want to make candy cane reindeers,
you would bring the supplies to make 12 reindeers plus bring a sample
to show the kids). Hot glue guns will be provided, if you want to use
a different type of glue for your craft, feel free to bring it with
you, or if you want to use no glue at all, even better! I will
provide additional supplies and coloring sheets. The kids will leave
with crafts to decorate your home and tree!

The Wyoming Library is centrally located, not far off of I-75 or off
of Ronald Reagan if coming from the east side of town. The library is
located on the corner of Springfield Pike and Wyoming Ave (mapquest
has the location off by about a block).

Any questions, just ask! Hope you can join us!

Friday, December 10, 2010 9:43 AM, EST

Literally minutes after I posted the update yesterday the following happened.....Because life is never dull here...

Sophia (8 year old): "Mom, Tori just sneezed and something is coming out of her nose"

Me: "it is just snot, you can wipe it with a diaper"

Sophia: "it isn't snot, it looks like a clear wire"

She brings Tori to me....EGADS...her freakin' stint is sticking OUT of her nose! Of course it is now AFTER HOURS so I have to call the answering service for the Cincinnati Eye Institute and try to explain to the woman who is answering the phone that 1) "yes, Dr. Kulwin is an eye institute doctor", 2) "yes, my 2 month old sees a plastic surgeon" and 3) explain and spell twice for her nasolacrimal reconstruction. Finally she figures out that she can't transfer me to the doctor on call because Dr. Kulwin returns his own patients calls (how amazing is that?) and says she will page Dr. Kulwin. All I am imagining is turning around and driving back to Chrildren's after just getting home! Literally he calls back 3 minutes later. He tells me that I can take a q-tip and gently push the stint back into the nose and that it should stay. Of course it didn't. Every time she sneezed it popped back out. Hopefully it will stay in after a good night's sleep! If not, I will be back on the phone and probably heading to see the doctor sometime today!

Thursday, December 9, 2010 5:02 PM, EST

Just got back from Children's! Tori's appointment went well. She weighs 9 lb 15.79 oz (OK, let's just call it 10 lb), measured 21.5 ", has a 15" head and the doctor was thrilled with everything about her. I was apprehensive about telling them that she wasn't taking the multivitamin or the sodium chloride and that we had transitioned to nursing full time. He was fine with everything! I am amazed. She goes for her follow-up with him again in early Feb.

She has a follow-up with her surgeon next week!

On another note, I walked out of my OB appointment today. I was supposed to be going back for a 10 week post surgery follow up and had told them that I needed to be at Children's by 1:30 PM, they assured me that the 12:30 appointment, the first one after lunch, would be PERFECT......well at 1:20 PM, after NOT SEEING THE DOCTOR, I walked out of the office so that I could get her to her appointment. I was so pissed off.....wasted over an hour of my time for NOTHING.

Friday, December 3, 2010 8:55 AM, EST

Tori is NURSING!

For a baby with feeding issues, who forgets to breath while eating and a lazy/weak latch on her bottle, Tori is doing AMAZING when put to the breast. She has an ironclad latch, although a little low on the nipple, but she sucks strong and swallows hard and has only had one brady episode (very short and self recovered) while nursing!

I am trying to let her nurse at night rather than use the bottle and hopefully soon we can transition away from the bottles completely! Although I love the fact that Tori is getting breastmilk, I really HATE the breast pump and the whole pump and feed cycle we are experiencing. We are still doing bottles during the day, so that I can see what she is taking in while she is still figuring out the whole nursing thing! She doesn't seem to have any nipple confusion at all!

Without her feeding tube it is pretty much impossible to get her to take her sodium chloride suppliment. She HATES it and will literally hold it in her mouth and then SPIT it ALL out at you....not like she is spitting up but a forcefully SPIT IT ACROSS THE ROOM kind of spitting out, she would certainly win a watermelon seed spitting contest with the force she uses. I keep trying to figure out how to get her to take it, but even mixing it with all 3 oz of breastmilk, she refuses the entire bottle. She doesn't like the taste at all. Going to talk to the pharmacist at Children's to see if it can be flavored or something.

We have our follow up with the high risk clinic at Children's next Thursday, hopefully she will have gained weight and grown!

Monday, November 29, 2010 7:21 PM, EST

Tori had a follow up appointment today with her eye surgeon. I don't know if I should laugh or cry......

First I start asking about her NG tube (which wasn't in because she pulled it out earlier today and I figured they would want it out to look at her nose) and the surgeon, who happens to be the man who pioneered the surgery that Tori had, looked at me and said "They should have NEVER put an NG tube in a child who had nasolacrimal reconstruction. I would have never done the surgery if I knew she needed an NG tube"......OK.....so just another example of too many cooks in the kitchen....why the heck didn't someone, ANYONE, know that they should have never replaced her NG tube and why didn't anyone who saw her after surgery mention it, she was seen by ophthalmology almost every day for 2 weeks after surgery and by numerous other doctors.

Second, they want to remove the stints in early March...fine...right....NOPE......since her age will be under 60 weeks gestation, the simple OUTPATIENT surgery is going to be INPATIENT...she is going to have to be READMITTED TO THE HOSPITAL......

At least everything looks fine according to the surgeon and the staff at the office was wonderful about immediately getting us back to an exam room to wait rather than having us wait in the crowded waiting room full of coughing patients! Even though we still had to wait an hour to be seen, at least we weren't being exposed to a host of germs!

BTW, it is kind of weird to hear an entire crowded office say "so this is the little lady we have heard so much about"...apparently Tori and her surgery were the talk of the office, I guess they usually don't see or operate on patients so young!

Like I said, I don't know if I should laugh or cry!

Saturday, November 27, 2010 4:21 PM, EST

Tori went to the ped this morning. I forgot how long it takes to get out of the house with a newborn, especially one that has feeding issues, since you never want to put a hungry baby in the car! We were running about 20 minutes late, good thing that our ped office is really laid back on Saturday (mainly just sick child visits). Thankfully they didn't make us wait in the waiting room at all and took us right back to the exam room.

She has gained 5 oz since being discharged so they are thrilled! They kept telling us how great she looks and how beautiful her scar on her stomach has healed. They want to see her back in a week or 2 for her 2 month check-up, to get her "on schedule" but I am not sure, we have 2 follow-up appointments at the hospital in the next 3 weeks plus and appointment with the eye surgeon, I think having her in so many waiting rooms probably isn't the best of ideas. Going to have to really think about that one! We may wait and go back in at 4 months instead unless she gets approved for the RSV vaccination, then we will have to go back every month.

She took almost all her feeds yesterday completely BY MOUTH, but was lazy today at her last 2 feds!

She has discovered her voice since getting home from the hospital, she lets us know what she likes and doesn't like and cries to get our attention. I think she realizes that everyone here jumps if she fusses, very different from the hospital and nurses who were too busy to drop everything an pick her up!

Friday, November 26, 2010 4:44 PM, EST

Getting used to being home! Tori took ALL of her 3 AM, 9 AM, noon and 3 PM feds today by mouth! Hopefully this a pattern she will be repeating! I love being able to sit on my bed and snuggle with her as she eats! Hopefully soon we can transition to the breast!

William was so funny when we first came home, he kept looking at Tori's feeding tube and after about an hour, he asks me "so who has to cut up the food small enough to go in there?". I couldn't help but laugh!

Sophia is becoming the most excellent of diaper changers! She even manages the poopiest of diapers with very little stress! She really has been waiting FOREVER to have a baby sister to take care of!

Hope everyone had an amazing Thanksgiving, ours was the best ever! Only bad thing, my grandson was sick so he couldn't spend the day with us because we don't want to expose Tori to ANYTHING! If he had been there, it would have been perfect!

Wednesday, November 24, 2010 7:00 PM, EST

Thanksgiving came early for the Riesenbergs......

Exactly 8 weeks to the day from her arrival and 4 days before her scheduled delivery......

TORI IS HOME!

Wednesday, November 24, 2010 8:38 AM, EST

The video swallow test showed NOTHING! She even managed to spit up at the end of the test and nothing refluxed into her lungs! It was a bit unnerving, she has the test at 8:30 AM and our phone rang befor 9 AM, we both thought there must be a problem, but no, it was just Allison calling to tell us the "good" news! Their conclusion is that she just can't coordinate falling asleep and eating and breathing at the same time and that she also can't coordinate screaming and starting to eat at the same time. Unlike a normal baby who is quieted when the bottle enters their mouth, she breaths in when she gets the bottle if she is overstimulated or upset, so Tori can only eat when she is pefectly calm! Certainly a challenge for a hungry almost 2 month old!

Tuesday, November 23, 2010 5:31 AM, EST

Tori's video swallow test is at 8:30 AM this morning. Both speech and OT will be going with her to the test. Hopefully we will get the results later today.

They actually said the words "go home" during my visit yesterday. I won't believe it until we are walking out of the hospital, but it appears there is an end in sight. Of course things depend on the results of the video swallow study and her not having any brady episodes, but they are ordering home supplies for us and making follow up appointments for us!

I placed my 2nd NG tube yesterday during my visit! Mostly thanks to my own stupidity, I caught her tube on the side of the tube when I was getting her out of the bath and then when I laid her down, she started sneezing and the tube came out even further, so we pulled it and placed a new one. Thanks to some tips from her nurse, the placement went even more smoothly than the last time, she taught me to bundle her arms with a blanket and to have her suck on a pacifer while placing the tube!

I skipped the weekly parent meeting last night, mainly because it was a topic we have already attended two times, guess that says we have been there TOO LONG!

Sunday, November 21, 2010 8:28 AM, EST

Tori was wide awake during our visit yesterday, full of smiles and looking around everywhere. She did well with her feeds, in that she didn't brady, but she is still not taking much volume by mouth! She managed to spit up all over her nurse Christina, to the point that she had to go and put on new pants and wash the ones she was wearing! I guess that beats getting pooped on, which is one of Tori's other tricks for her nurses!

We have heard that the swallow test is scheduled for Monday but no one has confirmed a time for it.

Jay met the new doctor for the first time yesterday and he laughed as soon as he left because I had mentioned about him touching my arm every time he talks to me and he did the same thing to him. Of course he had no answers for us, but at least he is pleasant enough to deal with.

The hospital is starting to look a lot like Christmas, trees and decorations up everywhere! Who would have though when we entered the hospital on that warm fall day in September that we would ever be around to see it transformed into a winter wonderland?

Saturday, November 20, 2010 7:05 AM, EST

I spent most of the day with Tori yesterday. When speech therapy fed her at noon she had a brady episode, so she reset her clock once again, 5 more days at least until we can bring her home. Apparently this isn't only frustrating me at this point, but her therapists and doctors as well. They are sending her for a swallow study on Monday (or Tuesday if radiology is booked Monday) to see if there is some reason that she keeps having these episodes while she eats. The study might show a problem or it might not, it depends on if she has an episode during the test or not, and even if she has an episode, it still might not show anything. Prayers would be appreciated, that if there is an issue, that the test will show what is going on.

I think I like her new doctor. Although I have to laugh about something he does. Each time he talks with me he touches my arm. It reminds me of an episode of the show "The Secret Life of the American Teen" (ok, yes, I admit I watch it) where one of the main characters, Grace, has returned from a summer camp for kids that want to be doctors and she has been taught to "connect" with patients by touching them. At least he seems to value my opinion and my concerns and he doesn't say "I KNOW WHAT YOU ARE GOING THROUGH...." (man am I sick of hearing that)......during every conversation!

Tori stayed awake from 2:30 PM and was still awake at 6:30 PM when I left the hospital. After being sleepy most of the week, she seems to now like being awake! It was great to be able to interact with her for such a long time!

Friday, November 19, 2010 9:07 AM, EST

Tori looked and acted better yesterday evening when I was with her, although still not completely like she usually does, but at least she was full of smiles for me and awake, something that hasn't happened the 2 previous days. Throughout the day her poop transitioned back to what we think of as "normal" for her....the doctors have no explanation for any of it other than them agreeing with me that maybe she picked up a virus.

Right around her 3 PM feed, she sneezed and apparently did something to the stint placement in her left nostril, you can now see the bottom of it. They called in opthomology and they had no idea so they called the reconstructive people and they are just going to watch it. It doesn't seem to be bothering her at all but it is a little worrysome since I would be afraid to place an NG tube on that side because of it, hopefully it doesn't happen to the other side as well!

She once again had a DIFFERENT nurse, even though her primary was working. She actually ended up with 3 different nurses throughout the day, 3 people that had never worked with her before, when all the discharge coordinator and doctors keep saying is that consistency is the key to getting her eating and home. Someone seriously needs to look at the staffing at that hospital. It is hard for me to believe that this is the 3rd best newborn intensive care unit in the entire country. I really worry about what the 6th best or 10th best or 200th best hospital must be like!

Wednesday, November 17, 2010 7:43 PM, EST

Prayers please!

I just got home from the hospital, Tori has had a change in her poop, it is orangish, bloody and mucousy....they did an abdominal x-ray and can't see anything that indicates a problem and she isn't running a fever, but obviously something is wrong. She really isn't acting like herself, she is very, very sleepy and hardly taking anything by mouth. I spend most of my time at the hospital today crying with her in my arms or in the breastfeeding/pumping room crying. I am not dealing with this very well at all.

Wednesday, November 17, 2010 11:14 AM, EST

I spent a few hours with Tori last night. She took 45 ml for me at 6 PM and I gave her a bath after she had a HUGE blow out diaper! She LOVES getting a bath!

They called this morning with her update, the only change, they have once again UPPED the amount they are trying to feed her. She is now at 80 ml every 3 hours! We are NEVER going to get home if they keep upping what she has to take in!

Going to go down and visit sometime later today, haven't decided at what time yet, we try to plan around traffic so I don't want to be heading there or heading back during rush hour!

Two Upcoming Christmas Events:

Yes, I know Thanksgiving is still a week away, but I found the info on two local events the kids and I enjoy and I thought I would share them!

Living Nativity:

This is one of our favorite Christmas activities to attend as a family and it really focuses on the true meaning on the season. I don't know which day we will attend (depends on the kids basketball schedules and the weather) but we will definitely go. I tend to like to go earlier rather than later, but that is just me. Definitely dress for the weather!

9th Annual Presentation of "The Living Nativity" Loveland United Methodist Church 10975 S Lebanon Rd. Loveland, OH 45140 www.lovelandumc.org Saturday December 4th and Sunday December 5th from 4:30-7:30 PM

An outside guided walking tour through 21 stations featuring a dramatic presentation through drama and song of the sotry of Jesus' birth. Live animals, including donkeys, goats, sheep and alpacas! Hot cocoa and cookies will be served inside. This is our free gift to you! Sign language interpretation available at Sat. tours.

Ohio National's Victorian Holiday Village:

This is something else the kids and I went and did last year, the trainrdie in the parking lot was HYSTERICAL, I have never been so "scared" on a train in my life, of course the kids LOVED it! Again, this is outside, so you have to dress for the weather, but there was a great opportunity for photos with santa (it was a 5x7 print and FREE and santa was decent looking)....probably more for the 10 and under set, although I took Grant and Jacob with me last year......I will most likely go on the Thursday it is offered......and get there close to when it starts.....we forgot our canned goods last year and no one said anything.....but I plan to try and remember to bring something this year!

From their website: Back for its ninth year, Ohio National's Victorian Holiday Village is a holiday tradition for Greater Cincinnati families. Since 2002, nearly 20,000 guests have visited the annual free holiday event and enjoyed its complimentary cocoa, cookies, free 5x7 photos with St. Nick and more. This year, Ohio National's Victorian Holiday Village will be open the following evenings:

• Friday, December 3 from 6-8:30 p.m.
• Saturday, December 4 from 5-8:30 p.m.
• Thursday, December 9 from 6-8:30 p.m.
• Friday, December 10 from 6-8:30 p.m.

The lights, child-sized houses decorated with holiday scenes and family-centered holiday fun takes place over a four-night period in early December on the grounds of Ohio National Financial Services at the intersection of I-71 and Pfeiffer Rd. Staffed by Ohio National associates who volunteer their time, the Victorian Holiday Village continues the company's commitment to community outreach and service.

Returning this year is the Century House. A miniature scale replica of a Habitat for Humanity home, this Victorian Holiday Village home celebrates Ohio National's 100th anniversary commitment to build 10 new Habitat for Humanity homes in the Cincinnati community over the next five years. Ohio National announced this gift, the largest ever one-time donation to Cincinnati Habitat for Humanity, in 2009. To date, two homes are complete and two more are nearing completion (with November dedication dates pending) in Cincinnati's Avondale neighborhood.

Back by popular demand will be the ONtime Express, a miniature train that takes guests from the parking garage to the Village, and balloon artist elves. The Village will remain lit throughout December, but the refreshments, photos and entertainment will only be provided during the four nights above.

While admission to the event is free, all guests are asked to bring a nonperishable food item (no glass containers, please), which will be donated to the FreestoreFoodbank. Since 2002, Ohio National associates and Village guests have donated nearly 16,000 pounds of food to the FreestoreFoodbank. In addition, Ohio National will make its seventh consecutive donation to the FreestoreFoodbank to mark the opening of the Victorian Holiday Village.

Ohio National's Victorian Holiday Village will be open rain or shine. Please note that due to the outdoor terrain and gravel path, the Village is not handicapped accessible. On-site covered parking for 800 vehicles is available. Ohio National is located at the southeast corner of the Pfeiffer Rd. (Exit 15) and I-71 interchange. Pfeiffer Rd. is the first exit south of the intersection of I-71 and I-275. For more information, please visit www.ohionational.com.