Thursday, December 30, 2010
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!
Hope everyone has had a wonderful holiday season and that 2011 brings you the things you want. 2010 has been quite a ride!
Saturday, December 25, 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!
Friday, December 17, 2010
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
Friday, December 10, 2010 9:43 AM, ESTLiterally 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 09, 2010
Thursday, December 9, 2010 5:02 PM, ESTJust 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 03, 2010
Friday, December 3, 2010 8:55 AM, ESTTori 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
Monday, November 29, 2010 7:21 PM, ESTTori 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
Saturday, November 27, 2010 4:21 PM, ESTTori 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
Friday, November 26, 2010 4:44 PM, ESTGetting 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
Wednesday, November 24, 2010 8:38 AM, ESTThe 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
Tuesday, November 23, 2010 5:31 AM, ESTTori'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
Sunday, November 21, 2010 8:28 AM, ESTTori 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
Saturday, November 20, 2010 7:05 AM, ESTI 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
Friday, November 19, 2010 9:07 AM, ESTTori 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
Wednesday, November 17, 2010 7:43 PM, ESTPrayers 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, ESTI 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!
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!
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.
Tuesday, November 16, 2010
Tuesday, November 16, 2010 3:09 PM, ESTIs this ever going to end?
I called to talk to Tori's nurse a little while ago and she had 2 brady episodes today while eating, once at 6 AM and once at 9 AM and then she refused to take anything by mouth at 12 PM. After doing well since noon on Saturday she is taking steps backward. So the clock is once again reset......I don't know that we are ever going to make it 5 days without a brady episode.
Monday, November 15, 2010
Monday, November 15, 2010 7:34 AM, CSTI placed my first NG tube! It was really VERY EASY (ok, I was a little nervous, but it was EASY!) and I am confident that I can do it! The amazing thing that was since they inserted the tube last Sunday after her surgery, she has had a 6 cm difference in the depth it needs to be inserted which means she is GROWING, aparrently like a little wildflower!
We watched the CPR video, so another discharge requirement checked off our list!
Tori took 21 ml and 40 ml for the two feeds we were at the hospital for yesterday. Jay fed her both times, focusing on making sure she didn't brady over her volume. We can't seem to win....they want her to take everything by mouth, but if she bradys she can't come home for 5 days. If we feed her conservatively, they aren't happy, if we feed her agressively and she bradys, they aren't happy. Hopefully they will agree to send her home with the NG tube.
Sunday, November 14, 2010
Sunday, November 14, 2010 7:35 AM, CSTI went to visit with Tori yesterday in the late morning. She had been doing so well! I gave her a bath (which she LOVED), it was the first one she got to take in a "big" bathtub instead of the rubbermaid style container they call a tiny tub and then she promptly POOPED all over the towel I wrapped her in, which I guess is better than pooping in the tub! Then we sat down to eat. After going almost 3 days without having a brady episode, 3 sucks into the feed, she coughed and bradyed....so little girlfriend earned herself another 5 days in the RCNIC. I told her that her staying IN the hospital was NOT the birthday gift that I wanted, that 45 days had been long enough, but apparently she has plans of her own. Jay said, only half joking, that we will soon be buying her a christmas tree to set up at her bedside.
Saturday, November 13, 2010
Saturday, November 13, 2010 6:40 AM, ESTIt dawned on me the other day that many of you following our story don't really KNOW us! I so appreciate that you shower us in prayer and love, so I thought I might tell you a little of the STORY OF TORI that doesn't have to do with her abdominal, eye or prematurity issues!
I am Laura, Tori's mom! I am 41 years old (as of today). I have been married to Jay (46), also known as Tori's dad, for 20 years and we have known each other for 24 years. We met when we were both working at a country club, me in the front office, him in the pro shop. Yes I have been married to him for 1/2 of my life and with him for more than half my life! Tori has 6 older brothers and 3 older sisters. Yes, for those stumped by even the simplest math, you did add that correctly, that makes Tori our 10th child! Yes, I carried each of them and no, there are no multiples, I don't enjoy being pregnant or have easy pregnancies. Each of our pregnancies has been high risk because our oldest child was born prematurely and has hydrocephalus (a continue which prevents his spinal fluid from draining from his brain and requires him to have a shunt) and because I have had gestational diabetes with the majority of my pregnancies. My pregnancy with Tori was by far the highest risk of all my pregnancies! At no point during the pregnancy was her survival or mine a certainty, but God is good and brought us both through it!
Our 6 boys are Brett (20), Grant (14), Jacob (12), Cade (10), William (6) and Luke (3 1/2). We also have a beautiful 15 month old grandson, Noel. Our boys LOVE sports, especially basketball and baseball and are extremely competitive, both amongst themselves and when they play against others. They love PS3 and the computer. The current favorite PS3 game is the newest release in the Call of Duty series. Even Luke at 3 has his favorite website (webkins) and his favorite computer game (Backyard Baseball) and can navigate both without help. Brett, in addition to working 2 jobs, manages to find the time to coach his 10 year old brother's basketball team!
Our 3 other daughters are Hannah (18), Emily (16) and Sophia (8). Our girls have enjoyed dance and gymnastics and are all strong, opinionated young women. The older 2 girls both work and are often out of the house either at their jobs or hanging out with their friends. Sophia loves girlscouts, 4H, Sunday school and her monthly cooking club!
We live in Loveland, OH, a city about 20 or so miles northeast of Cincinnati. We have lived in Loveland for 5 1/2 years but have been in the greater Cincinnati area our entire lives. Jay is the youngest of 10 kids, all his siblings live within about 4 hours of here, I have one brother. If I counted correctly, my kids have 26 cousins, cousin-in-laws and second cousins. Both of Jay's parents are deceased, as is my father, so Tori only has one living grandparent, my mother.
We are Christians, growing stronger in our faith each day! I know that it is only through God's grace and the power of prayer that our beautiful daughter has made it this far! We are surrounded by a loving church family! I have never felt so loved, blessed or covered in prayer as I have in the last few months. God is AWESOME! William and Sophia are both busy practicing for their parts in our church's Christmas play. Sophia even has a small speaking part, she is so very excited! We are all excited too, we can't wait to see the two of them on stage!
We are homeschoolers. We are CHRISTIANS that happen to homeschool, but about as far from the conservative, denim skirt wearing, long hair in buns, kids dressed in matching jumpers sew with my own hands, Christian homeschoolers that so many people envision. I don't grind my own wheat or bake my own bread in my solar powered oven. My 6 year old isn't studying quantum physics and my 12 year old is no closer to finding a cure for cancer or winning the national spelling bee than the Bengals are to winning the Superbowl. We believe that the world is our classroom and life is our curriculum and we LOVE the life we live! We didn't chose to homeschool to limit our children's experiences within the world but to expand it.
If they were to make a reality show about our family they wouldn't be able to air in on TLC, maybe MTV or VH1, but we definitely aren't TLC material. Our language is too rough, my children too rowdy, our friends too colorful! Our son was a teen father, our daughters free to date who they chose, our arguments are loud, our opinions are strong and often not politically correct, I don't spend my day with a smile on my face or gently reminding my children to not run through the house. My house is rarely clean and it certainly wouldn't make an issue of Good Housekeeping other than as an example of a "before" photo. I cook, but not well! The kids and Jay tend to have simple taste so I can keep them fed but a gourmet 5 course meal isn't coming from my kitchen unless someone else cooks it and drops it off here and if it is dropped off here it will most likely be eaten off of paper plates rather than matching china! Even with a large family, you will rarely find more than a day's worth of dirty laundry in my house, laundry, well that is my strong point! You never have to worry about having clean clothes if you live here! I do at least 3 loads of laundry a day, more if I happen to need to wash diapers. We go through more toilet paper in a day than most families go through in a 4 or 5 days!
So that is a quick peak into who we are and the family that loves Tori and can't wait to get her home. The picture at the beginning of the post is our annual family picture taken the end of last year, we are looking forward to updating it once Tori is home!
Friday, November 12, 2010
Friday, November 12, 2010 4:21 PM, ESTJay and I went and visited with Tori first thing this morning. We were there for her 6 AM and 9 AM feedings. She took 57 ml at 6 AM, completely pacing herself and with no bradys and then took 60 ml at 9 AM, once again pacing herself and with no bradys but she did spit up a bunch of the feed. She didn't take as much by mouth the last 2 feeds (12 PM and 3 PM--she took about 25 ml at each feed) but hopefully her volume will pick up with her later feeds. Her grandma visited with her late this morning (as Jay and I were leaving) and her two older sisters visited with her this afternoon.
We started part of our discharge process. We watched the carseat video--talk about a joke, the video is ridiculous and rather than require you to go and have the carseat fitted at a local firestation, they expect that parents will figure it out on their own after watching an outdated video that doesn't even note the latest changes in Ohio's carseat laws--a complete waste of time. But it is one thing checked off the list, well technically 2 things off the list, they let us skip the "basic baby care" video, I guess the figured that if the other kids survived we must at least have "basic" skills! We have to watch the CPR video and then we are finished with the videos. There will be other teaching we have to do, especially if she comes home with a feeding tube, but we are eager to take on the challenge!
I really DISLIKE her current attending....I can't wait for her to LEAVE on Wednesday and never breath the same air in the same room I am in again. I have never met someone so contrary and with such a superiority complex. Hopefully the new doctor we get will be a bit more agreeable, pleasant and actually remember what he/she told us.
Staffing issues are also really getting to me. There is absolutely no consistency with her nursing staff, she ends up with a different nurse every day, every shift, sometimes even 2x a shift. Someone seriously needs to take over staffing at the hospital. They also need to hire more patient care assistants/attendants (PCAs), they seem to be able to pay plenty of people to walk around and stock drawers, change sharps containers, and talk to each other, but not enough PCAs to make sure that patients that really need someone constantly at their bedside have them. It really irks me because since Tori isn't hooked up to any machines or with any critical tubes she tends to get "ignored", her feeds get pushed back, her alarms go off, she doesn't get changed or lays in spit-up yet we are being told by Dr. "I know better than you" that we aren't able to take care of her....believe me I KNOW I can do at least as good of a job as they are doing.....it is just so frustrating!
Can't wait to see my princess again tomorrow! Hoping to be down there by 10 AM to spend the late morning and early afternoon with her! Maybe she will give me a BIRTHDAY present and take her entire feed for me!
Totally FREE, all tested and tried. Find one you like or borrow what you like from all of them:
Ambleside Online -- A Charlotte Mason Curriculum for preK-12:
Lessons Pathway for K-5: http://www.lessonpathways.com/
Simply Charlotte Mason -- K-12:
An Old-Fashioned Education Christian Homeschool Curriculum:
Mater Amabilis -- A Charlotte Mason Style Curriculum for Catholics:
Thursday, November 11, 2010
Thursday, November 11, 2010 11:10 PM, ESTTori blew the 5th IV in 7 days....so they have decided to discontinue her IV antibiotics! I am THRILLED she isn't being stuck again, but worried that she might still need the antibiotics. Hopefully the doctors know what they are doing.
She is still getting antibiotic eye drops 3x a day through at least Sunday (possibly longer) and is on the nose drops 4x a day (until the stints are removed).
Slow goes the eating. She only took one full feed today by mouth, the other times she took less than 1/2 of what she needs to take. I just wish she would get the hang of it all so that we can get her home.
Since her surgery and them cutting the calories on her milk fortification, she hasn't gained much weight this week, not really a bad thing, since they really put weight on her over the past 2 weeks.
I have started to get used to the idea that she might be coming home sometime soon and Sophia and I put some of her things in her drawers today. We have some small clothes for her, many of which I have taken to the hospital so that they can dress her everyday, but I realized today that we really have next to nothing in 3-6 month or 6-9 month size for her for the coming months. Since we didn't know if we were having a boy or a girl I didn't really do much shopping before she was born and haven't had much time or any money since she got her. Sophia can't wait to get her home and start "dressing" her, she keeps asking if she can pick out her outfits every day. I think she sees Tori as her very own live baby doll! I pulled out the carseat and washed the cover and the pack and play is out but not set up. I just can't handle seeing it set up and not having her here to put in it. I don't think I will set it up until she is actually home, it will only take a few minutes and it will be easier on me emotionally, far easier than looking at an empty bed. I have a hard enough time with tripping over the carseat!
Tuesday, November 09, 2010
Tuesday, November 9, 2010 9:03 AM, ESTTori is EATING! She took full feeds by mouth at 3 AM, 6 AM, 9 AM and 6 PM! She is now up to 70 ml (2 1/3 ounces) at each feed! She didn't stop breathing at all when I fed her at 6 PM and there was no mention of her having any brady episodes at other feeds (we know for sure she didn't brady at 9 AM because the occupational therapist fed her and they stop the feed immediately if they brady). Maybe we will finally get to bring her home!
Unfortunately there is something wrong with her right eye (not the eye with the infection). The lid is a very odd shade of pink/red (even according to the eye doctors) and they have been up to look at it twice. They thought maybe it had been scratched during surgery but there is no sign of trauma to the inside of the lid (on the side that touches the eyeball) or to the eye itself. Since they don't know what it is, they don't know what to do to treat it! She is still on IV antibiotics, hopefully that will keep it from progressing to anything else!
Sunday, November 07, 2010
Sunday, November 7, 2010 5:27 PM, CSTTori came through her surgery with flying colors! She still really isn't awake but the surgeons said everything looked great and they will most likely go in and remove the stints in a couple of months! Her little face looks bruised and swollen! Poor baby!
Of course the surgery was supposed to start at 10 AM and it didn't start until noon, poor baby was STARVING and not very happy with any of us! It was really weird to be the ONLY people in the surgical waiting area, there wasn't even a receptionist at the desk. About 50 minutes after they took her back I heard the phone at the desk ring and after about the 3rd ring I said to Jay "I think we better answer that, since we are the only people here" It was someone calling from the OR telling us the surgeons were on the way out to see us. Even though it seemed like a fairly simple surgery, the surgeon said she would need to be in the hospital at least 3 days post surgery (not an issue since she is still having feeding problems but he was unaware of that issue), so I guess there is a lot of fear over infection since they released Brett 2 days after brain surgery!
By 2 PM we were back up in her room and she seemed comfortable. Hopefully she will continue to rest tonight and tomorrow start working on her feeding!
Prayers for her healing and comfort are appreciated!
Saturday, November 06, 2010
Saturday, November 6, 2010 3:58 PM, EDTTori is having surgery tomorrow at 10 AM. When they did the CT scan they found a cyst (mucoceles) in her nasolacrimal duct system and since her tears can't move in her closed lacrimal drainage system, it caused the infection known as dacryocystitis (which they have been treating since Thursday with antibiotics). so they have to go in and do something called bilateral (meaning both eyes) nasolacrimal system reconstruction and she will have stints in her eyes to keep the system open for a few month. We were told that the surgery will last about one hour. She will have to have surgery in a few months to remove the stints.
On a very POSITIVE note (remember typically with Tori for every step forward there is one back, well today we took a step back--surgery--and a step forward!)....Tori took 53 ml at her 8 AM feed, 50 ml at her 11 AM feed and 51 ml at her 2 PM feed! Way to go Tori!
Prayers are much appreciated for Tori, her surgeons (both an opthalmologist and an ENT), the residents, the members of the anesthesiology team, the nurses and all of the staff working with her tomorrow!
Friday, November 05, 2010
What great fun! We gave each child/team 100 popsicle sticks and glue and had them build bridges! Who would have ever thought a bridge made of popsicle sticks would hold the amount of weight that they did!
1 pound- William
2 and 1/2 pounds - Cade
3 pounds- Sophia and Sarah
7 and 1/2 pounds - Shelby and Joseph
10 pounds- Grant and Jacob
15 pounds- Kyle
27 and 1/2 pounds- Samuel
31 pounds- Michael
37 and 1/2 pounds - Bret
71 pounds - my bridge! (go me!)
120 plus pounds - Jessica and Brenda
Technically the WINNING bridge didn't really follow the directions (they didn't build a suspension bridge) but their design was innovative and impressive! I would love to see how the kids would modify their bridges if we tried the challenge again. 3 participants didn't finish their bridges, all 3 of which probably would have held even more weight than the ones we tested as they were well researched and planned out!
Here is the email I sent to the group prior to the event:
When: Friday, November 5, 2010 10 AM to 12 PM
Where: Symmes Township Library
And here is a slideshow of my kids bridges:
Thursday, November 04, 2010
Thursday, November 4, 2010 6:24 PM, EDTPoor Tori!
Her blocked tear duct is now infected. They had to start her on IV antibiotics and on an antibiotic ointment. Dr West ordered a CT so that they can make sure that the tear duct into invading the nasal cavity, they did it at 3:30 PM, hopefully we will get results in the morning. She looks miserable, like someone punched her in the eye, she can't even get it open!
They confirmed our meeting for 4 PM tomorrow, it will be interesting to see if we leave with more questions than answers!
She was so upset at her 11 AM feed after the eye exam and getting her IV started that she promptly puked up the entire feed! She did much better at 2 PM (maybe because she was starving!) and took 44 ml by mouth! Her best EVER! The 5 PM feed didn't go so well, she was sleepy and only took 10 ml!
Thursday, November 4, 2010 5:44 AM, CDTTori did well with most of her feeds yesterday! Although her volume was typically pretty low (20 ml or less) she didn't quit breathing during any of her feeds! She took 31 ml for Jay and I last night at 8 PM and had one episode where she choked herself, but she recovered pretty quickly! Her left tear duct is blocked, her eye is all goopy and she looks like she is miserable. The little girl who NEVER cries, cries when you touch it. Hopefully it will clear up soon, I hate to think of her with a crusty, yucky eye, laying there in her crib all alone!
The are supposed to be setting up a parent meeting for us to meet with the doctors to discuss getting her home. Tentatively it is set for Friday afternoon, I will find out today if the time is definite of not.
Wednesday, November 03, 2010
I got to feed Tori 3 times yesterday! At 2 PM she took 30 ml for me, at 5 PM she took 34 ml for me and at 8 PM, she was exhausted and I ended up using her feeding tube! It was great to spend so much time with her. Another one of her nurses is encouraging us to take her home with a feeding tube, we will see!
Grant got to see her for the first time yesterday, it was so cute to see him hold her, he has gotten so big over the past few months and she is so small!
Tuesday, November 02, 2010
Tuesday, November 2, 2010 11:11 AM, EDTTori took 42 ml (almost 1 1/2 ounces) for us last night at 5 PM, but she had a brady episode during the feed. I wonder if we aren't pushing her too hard, as much as I need her home, I don't want her to stop breathing each time we feed her! Her nurse showed us how to check her feeding tube for placement using 2 different methods, I think she is thinking the same thing I am, bringing her home on a feeding tube may be the answer. They have cut her back to 24 calories in her fortifier, since she is gaining weight so well! When they get her back to 22 calories, supposedly they will start letting her nurse, of course I won't believe it until it actually happens!
During the parent meeting, they gave us all "safety kits" to childproof our homes with. Jay and I laughed about it since all of our kids have managed to outsmart any safety device we have ever used. We are hoping that the cabinet latches might keep the puppy out of the kitchen cabinet, he likes to climb in there and chew on the hose for the water sprayer. I am willing to bet that even our puppy is smarter than the safety devices but we will see!
I am taking the little kids to the zoo in a little bit and then heading to the hospital (my friend is bringing them home) so I am hoping to see the doctors and talk to them. It is so hard to figure out just when they will be there to talk to them!
And my public service announcement for the day-----> GET OUT AND VOTE! I was so disappointed when Jay and I walked down to the poll at about 10 AM and saw that we were the 64 and 65 voter in our precinct. Just pathetic if you ask me! Of course voters #66 and #67 might also be from my household once they get themselves dressed and out the door!
Monday, November 01, 2010
Monday, November 1, 2010 2:13 PM, EDTSince today is the 1st of the month, Tori will have a new group of doctors following her. Apparently the residents rotate once a month on the first. It should be interesting to see if the new doctors opinions agree with the old ones.
Jay and I will go down later today and hopefully see the doctors and of course visit with Tori. Each Monday there is a parent meeting and we want to be there to attend it. Don't want to end up with a "black mark" because we didn't attend! It is a nice opportunity to meet with and talk to other parents and well as complete items needed for Tori to be discharged!
Tori is now typically taking something by mouth at each feeding. She didn't do that well for us yesterday at her 2 pm feeding, she only took 20 ml. Her nurse, Kari, said she did well at her early 2 feeds that shift, so I guess I can't complain. She didn't brady during those 2 feeds, although she did brady once on me. Little stinker!
It is hard to believe that her first halloween has come and gone, the first holiday (and hopefully the ONLY holiday ever) spent in the hospital! I tried dressing her up for halloween and she let me know what she thought of her frilly pink and white tutu by spitting up all over it! Maybe my princess is a tomboy at heart!
One of our friends is having surgery this week. Please keep Carrie in your prayers tomorrow. And remember our friend Benita next Thursday (11-11) when she has surgery as well! Continued prayers for Tori's room mates, as they recover from their surgeries last week and prepare for upcoming surgeries is also appreciated!
Saturday, October 30, 2010
Saturday, October 30, 2010 1:57 PM, EDTTori did well with her feeds yesterday, taking between 10 and 30 ml each time. Unfortunately it isn't as much as they want her to be taking by mouth each time, but it is better than she has been doing. It is so frustrating to sit there with her and know that her eating is all that is keeping her from coming home. Unfortunately when she took the 30 ml for me at 5 PM, she had a brady episode. It is scary to be feeding her and have her face turn blue and her hold her breath.
I can't believe that she is already a month old. Honestly the entire month of October is a complete blur. The days all melt together, the faces of the doctors and nurses, all the same. I hate not having my baby with me...to realize that she has been here an entire month and I have never laid with her in my bed, never woken up at night to feed her, that her brothers and sister Sophia have never even met her. I just want it all to be over. I want her home with us.
I think that the nesting I should have done while I was pregnant has hit! I made William and Sophia help me clean up their bedroom/playroom and move stuff around. Then I decided to rip up the carpet off the floor, it was horribly stained and really bothering me....well now the floor is FREEZING cold, guess I will have to try to find some area rugs to throw over the floor. Sophia LOVES the floor now, because her bouncy ball will bounce all the way to the ceiling, just another reason for me to recover the floor!
Friday, October 29, 2010
Friday, October 29, 2010 9:07 AM, EDTTori was awake for almost 2 hours when we visited yesterday! She took 34 ml, her personal best, at her 5 PM feed! We were so excited! She didn't spit anything up! 2 of her room mates, Lucas and Abigail, are having surgery today, so if you could cover them in prayer, we would much appreciate it! I know I have some powerful prayer warriors following Tori's journey and praying for her!
Thursday, October 28, 2010
Thursday, October 28, 2010 8:18 AM, CDTBad mommy hasn't updated Tori's page!
On Tuesday Tori did her best job ever with eating! 30 ml...one full ounce! We were so very excited!
Yesterday (Wednesday) she didn't do nearly as well and stopped breathing during 2 of her feeds. It was so frustrating, since she had done so well the day before! I spend 6 hours with her at the hospital yesterday, just holding and feeding her. I want her home so badly! We gave her her second bath yesterday, she loves the tub and is completely relaxed while you bath her, so totally different than my other kids who kicked and screamed when you put them in the tub!
We talked some with the resident about criteria for discharge. They want Tori to be taking 85% of her total volume BY MOUTH to send her home. I just wanted to cry. I am willing to bring her home with her ng tube, I feel like they aren't really doing anything for her at the hospital that I can't do at home but they aren't willing to budge. I suspect that an epic battle will soon be waged, I want my daughter HOME!
Monday, October 25, 2010
Monday, October 25, 2010 10:09 PM, EDTWe spent about 6 hours visiting with Tori this afternoon and evening. She was pretty sleepy when we got there and her nurse didn't attempt to feed her by mouth at her 3 PM feeding, but she took 24 ml for me at 6 PM! She didn't choke or drop her sats or brady or turn blue! I probably could have gotten her to take a bit more, but I didn't want to push her and have her spit up! She was very alert for about 1 hr from 5:15 to 6:15 PM and then again from 7:30 to 8:30 PM. It is so nice to interact with her when she is alert, although I love snuggling with her when she is sleeping as well!
The parent meeting went well, it was nice to talk to other parents and we played BABY BINGO! We won a couple of hats for Tori, a quilt, a blanket and also 2 doll outfits (that I brought home for Sophia). Talking with other parents was a nice way to pass the 1/2 hr each night that you have to wait during shift change!
Monday, October 25, 2010 9:03 AM, EDTTori got her first TUB BATH yesterday during our visit! The tubs they use are literally plastic storage containers! She LOVED being in the tub, when Jay put her in the water this calm look came over her, like she remembered being surrounded by water in the womb! She never let out a peep, she loved us washing her and pouring water over her.
They have upped her feeds to 2 ounce every 3 hours. She is tolerating it well. She still spits up every time they give her that stupid vitamin, I requested that they ask the doctors to discontinue the order for it, I don't know that it will happen, but I do know once she is home she will NEVER get it again!
So Tori is doing well, me, well, that's another story. We came home to find my mother cleaning my kitchen. It made me so angry because I had asked the kids to do it and like everything else I have asked them to do lately, it didn't get done. I know my mom was doing it to be nice, but I didn't want her to do it, I guess more accurately I didn't WANT her to HAVE to do it. Of course the kitchen looks great, except for the floor, I refused to let her mop it. The other thing was that I had wanted to go to a pig roast, and she was here and had brought food, so I couldn't leave, so I was upset because I had been looking forward to it. Hannah and Emily went, they took the baked beans that I had made with them. I just went to my bedroom and cried. What a stupid thing to cry about. So even though my mom brought dinner, I didn't eat anything, rather wallowed in self pity. I think I am starting to remember how much I hate post partum hormones!
We will go down to see Tori later today. Monday evenings at 6 PM they have a parent meeting for all the RCNIC parents.
Saturday, October 23, 2010
Saturday, October 23, 2010 2:59 PM, CDTTori did amazing at her noon feed today! She took 24 ml by mouth before she decided that eating and breathing at the same time were too much work! A new BY MOUTH record for Tori! They have upped her feeds to 58 ml, so almost 2 ounces, every 3 hours.
She took something by mouth at every feed since we visited yesterday except at her 6 AM feed. Her night nurse said she was acting like she wanted to gag so she didn't want her spitting up. Most of the time she took about 10 ml by mouth.
I really treasure the time I get to spend with her, I can't wait until she finally gets to come home! If she keeps eating like she has been, hopefully it will be sooner than later!
She is so expressive! Jay has names for most of the expressions she makes, it cracks me up to watch him interact with her. Princess Tori already has daddy wrapped around her teeny tiny pinky finger!
Friday, October 22, 2010
Friday, October 22, 2010 4:51 PM, EDTWe just got back from visiting with Tori! Since we left yesterday after her 6 PM feeding, she has taken something by mouth at each feed! It varied from 6 ml to 18 ml, but it is a HUGE step forward because prior to 6 PM last night, she was typically only taking something by mouth at one feeding per day!
I fed her at 12 PM and she took 11 ml, Jay fed her at 3 PM and she took 6 ml.
She got a sponge bath this afternoon, she didn't seem to mind too much, other than not liking the cool aif hitting her naked body! Her cord fell off yesterday (FINALLY!) so she will get a tub bath soon--they couldn't find a tub to use today so she was only able to get her sponge bath!
Friday, October 22, 2010 7:56 AM, EDTWe spent about 4 hours down at the hospital with Tori yesterday. For the first feeding we were there for, she refused to wake up, so all we got to do was drip milk in next to the pacifer, she only took in 1 ml by mouth, but at her 6 PM feeding SHE WOKE UP and took 13 ml by mouth from her bottle, she did VERY WELL the majority of the time, her heartrate and breathing stayed steady, until the very end where she decided that breathing, sucking and swallowing was too much work and she decided to stop breathing and turn a little blue! She recovered quickly but it was enough that we all decided she needed to be tube fed the remainder of her milk!
She didn't spit up her vitamin! It was the first time she they started her on it that it didn't come back up!
She managed to poop all over the covers again when I changed her. I think she thinks that is her "party trick", as soon as you take the diaper off, she starts pooping! I am not going to complain about poop! I find it kind of funny!
Progress is slow, but I won't complain as long as we aren't moving backwards.
We have the van back thanks to a wonderful family at our church and the kindness of the church itself. It has been so nice the last 2 days to not have to depend on the kids or friends to get us down to see Tori. Every minute I get to spend with her is such a blessing, she really is a miracle!
The therapist said they will work with us again today on feeding her. It seems strange that after 9 other children and 20 years of childcare that we need to be taught how to feed a child! I decided that since she rarely is awake that I would rather work on getting her to take the bottle (and get closer to bringing her home) than I would with putting her to the breast right now since she tires out so quickly. My breast literally ache to have her nurse, hopefully it will become a reality in the near future. For now, the pump and I will continue our love/hate relationship. I am so happy that she is completely on breastmilk, I just wish she was able to get it from the source!
Wednesday, October 20, 2010
Wednesday, October 20, 2010 7:27 PM, EDTTHEY LET TORI NURSE!
Well...technically, she was put to a dry breast (I pummped prior to her nursing) and she "nursed" while they tube fed her, so she would associate sucking with a full stomach! She latched on beautifully and sucked well, she seemed to even coordinate the sucking with breathing (of course she wasn't swallowing at the same time). Even though it has taken us 3 weeks, it felt so amazing to have her at my breast! One of the therapist said that we can actually try to let her nurse tomorrow, that we will weigh her before she nurses and then after she nurses to see if she actually takes anything in. They are now offering her a bottle at each of her feedings, although if she is tired, they aren't supposed to "force" her, just go ahead a tube feed her.
Jay snapped a ton of pictures, but I think there is only one I can share without them flagging them! So here is my peanuts head as she nuzzles at mama's breast for the very first time!
Tuesday, October 19, 2010
Tuesday, October 19, 2010 3:49 PM, EDTTori drank 10 ml of breastmilk from a bottle today at her noon feeding! The speech therapist came and worked with her and we had to use a special hold and tilt the bottle so a whole bunch didn't flow into her mouth at once, since she can't suck, swallow and breath all at the same time! She spit up a bit, but I really think it is that horrible vitamin they gave her at the beginning of her gravity feeding.
She was awake and alert for about 45 minutes of our visit. It is so nice to visit with her and have her be awake and alert!
Tuesday, October 19, 2010 9:01 AM, EDTWe had an amazing visit with Tori last night! We dropped Hannah at work and borrowed her car to go down and see her. When we got there, a fellow homeschooling dad came down to visit. He pastors a small church in Covington and he came to offer prayer with us for Tori. After his visit we spent a few more hours with Tori and she was awake for almost an HOUR! We couldn't believe it. She is usually only alert for a few minutes at a time, but she was so awake and alert! She was really sucking on her pacifer, hopefully that will translate into good news when the speech and occupational therapists work with her on feeding! She is up to 50 ML every 3 hours and is feeding at 9, 12, 3 and 6. She spit a little yesterday in the afternoon (I personally think it is the vitamin they are giving her) but none last night or overnight!
Yesterday afternoon I was just hanging out, waiting to go see Tori and dreading having to pump. I have such a love/hate relationship with that stupid thing! Jay brought in the mail and there was a package for me. I wasn't expecting anything but eagerly opened it. I was totally surprised by what was inside. A mom from one of the email lists I am part of sent me a a hands free nursing bra to use with a breast pump. My initial
reaction was to chuckle and then I thought, what the heck, I have to try this......well 20 minutes later I think I could be the newest spokeswoman for the product....it was so comfortable and worked to well to hold the flanges in place (a better seal than I usually get when hand holding), I ended up with more milk and also was able to continue pumping for about 5 minutes after the milk seemed to "stop" (which they have been encouraging me to do to increase supply, but I
never do because I am uncomfortable). It has to be one of the most thoughtful gifts I have ever received and certainly something I would have never considered buying for myself (especially given our current financial situation). I will think of her and her kindness every time I use it (which would happen to be at least 6 if not 7 times a day!, I usually sleep through the one time at night I should pump!).
I am hoping to go see Tori in a few hours if the girls are up for visiting her. If not, I may bum a ride with a friend whose son has an appointment at Children's later this afternoon!
Sunday, October 17, 2010
Sunday, October 17, 2010 1:40 PM, EDTBack from our visit. They kept Tori's feeds the same for today, but if she continues to spit up, they are going to go back to feeding her with the pump over 1 hr. She doesn't seem upset or anything when she spits up, she doesn't even wake up sometimes!
She gained a little weight overnight, I think about an ounce!
Her nurse had her dressed in an adorable little dress today! She really is a beautiful baby! Jay and I spent the visit cuddling with her and trying to make her wake up, but she wanted nothing to do with being awake and preferred to just snooze in our arms!
I promised Sophia and William I would get them to church next weekend, they haven't gone the last 2 weeks and they are really missing their church friends and Sunday school. Things are so chaotic here still, I really plan to try to get more things back to normal this upcoming week. I am starting to feel a bit more human, my incision looks great and the bladder is working (although it still feels rather weird). I can't believe that the month of October is already half way over and I can barely remember that the month has even changed, it really is totally and completely a blur!
Continued prayers are much appreciated!
Sunday, October 17, 2010 8:27 AM, CDTJust spoke to Kristina (Tori's weekend day nurse) who said Tori spit up quite a bit overnight, enough that she is holding back on her feeds. She also had a lot of food still in her belly when they checked (yesterday before the changes she was only holding a few ML in her stomach, since the change she is holding 15-20 ML)...so with the 2 things together, they are waiting for the doctors to do rounds to see if they are going to make any changes.
Jay and I are heading out to visit with her. I guess the advantage to have a nocturnal teen is that she doesn't need her car early in the morning!
Saturday, October 16, 2010
Saturday, October 16, 2010 1:19 PM, EDTSince we weren't able to visit Tori yesterday, we went down first thing this morning to see her! She is now up to 5 lb 8 oz! While we were there she got her first gravis (?) tube feed, where rather than being pushed in by a pump, the food goes in using gravity. It took about 15 minutes for her whole 49 ml feed to get into her belly, much faster than the 1hr she had been used to. She spit up just a tiny bit but otherwise tolerated it very well! Another step closer to eating by mouth! I believe that the OT and Speech Therapist are supposed to start working with her on Monday to progress towards feeding by mouth, but won't know anything for sure until they are back at the hospital Monday!
Apparently sometime after we left Thursday afternoon, Tori pulled out her feeding tube. No one bothered to tell me any of the times I called Thursday or Friday, but now her feeding tube is in her other nostril. Hopefully she will leave it alone, since it isn't too pleasant for her to have a new one placed!
Last night she had a huge blow out poop while her nurse was changing her....poop went everywhere....in her crib, on the wall, all over her clothes....she shocked herself so much that she even spit up during the whole thing! I explained to her today that such behavior would not be acceptable once she got home! I don't mind poopy diapers, but poop everywhere is not acceptable!
The van is supposed to be ready sometime Monday or Tuesday so until then our visitation schedule with Tori will depend on who can get us there when....I know she is in wonderful hands and being surrounded by prayer all the time, I take such comfort in that!
Friday, October 15, 2010
Friday, October 15, 2010 10:56 AM, EDTMy friend Nancy came and took me to see Tori yesterday! She brought her camera and got some great shots of Tori, I will share them once she gets them to me.....of course I might not show the ones of me with her, I hate having my picture taken! We stopped and had lunch at PF Chang's on the way (I had a coupon for a free lunch and just ordered water to drink, Nancy picked up the tip so I ate for FREE!)! It was my first meal out in months, since Jay and I went out for our anniversary using a gift card someone gave us back in July. It felt nice to just sit and have lunch with a friend. She was so funny though, when we got to see Tori, I realize that tiny babies scare her! She is great at taking pictures of them, she just doesn't want to touch them!
I am overwhelmed with the generosity of our church and a family at our church. Yesterday after I posted about the van breaking down and not being able to see Tori because of it, the phone rang and we received an offer to help fix the van. I just sat and cried. I can't believe that people are so willing to go out of their way for people they don't even know. I hate being the person that needs help, it is so against my nature to the person looking for help, but this has all shown me that God is watching over me. Jay took the van over this morning, hopefully the exhaust issue is fixable! We had another family offer us use of a car for the weekend if the van is still not drivable. Like I said, I feel nothing but blessed right now!
The only real changes with Tori is that they are increased the number of calories she is taking in. She is being fed over 1 hr now instead of over 2 hrs, getting closer to being able to try to feed her by mouth and she hasn't spit up since Jay and I visited with her on Wednesday! They also removed her PICC line, her arm seems a little tender, but she seems to like her new added mobility of being able to move it a bit more!
Thursday, October 14, 2010
Thursday, October 14, 2010 5:46 AM, EDTJust got off the phone with Tori's nurse, she did well overnight, no spitting up, she had a few poopy diapers and she only had a couple brady episodes.....
We went to visit yesterday afternoon and were a bit worried because Tori spit up twice. Not a lot, but enough that it worried us! With moving to the consolidated feeds, it was to be expected, but everything seems to be magnified when dealing with her. I would have never worried if one of the other kids spit up, especially the small anount she did, but with her, there is a heightened sense of anxiety!
We also found out that it will probably be next Monday at the earliest when we get the results of the CF test. Whatever the results are, they are, there is nothing I can do to change it, but I really just want to know.
On the way to the hospital the van started acting up. We think it is an exhaust issue, we sounded like a souped up drag racer clunking home on the expressway, windows down despite the rain so that the exhaust fumes didn't overpower us, but it means that I might not get to visit with her since that is the only vehicle we have and we don't have the money to fix it. I will have to do some problem solving later today to figure out how we are going to continue to visit with her. I really don't think I can handle much more of this! They say God doesn't give you more than you can handle, but I am starting to wonder why he thinks I am so darn competent!
Not the best picture (I can't figure out why it looks so blown out near Jay's hands) but I loved Daddy and Tori in this picture!
Wednesday, October 13, 2010
Wednesday, October 13, 2010 1:43 PM, CDTBad mommy forgot to update Tori's page this morning!
She has moved to consolidated feeds...meaning she will get the same volume (1 1/2 ounces) but over 2 hours instead of 3 hours. If she tolerates that, they will keep decreasing the time until her stomach can handle the feed in 30 minutes....at that point they will start trying to feed her by mouth (if I understand correctly!).
They are leaving her PICC line in for one more day, in case she starts "stooling out" when the milk just passes through without digesting on the new shorter schedule. If she doesn't stool out today, they will remove it tomorrow! A HUGE STEP FORWARD!
Still waiting on the results of the CF test, apparently they misinformed us when they said it takes a week for results, but no one seems to be able to tell us how long it takes, hoping to track down a timeline today!
Heading out in a bit for a visit! We have found late afternoon to be her most alert time and want to take advantage of it! We got to kangaroo for 90 minutes yesterday, Tori loved it and only had one brady episode the whole time...if feels so good to hold her .....it was HEAVEN, made things feel almost "normal", when I closed my eyes and just felt her skin touching my skin....of course the beeping of monitors (mostly other babies, she only had one brady episode the whole time I held her) and the activity of the nurses brought me back to reality every so often......I can't believe that she will be 2 weeks old this afternoon!
Tuesday, October 12, 2010
Tuesday, October 12, 2010 6:30 AM, EDTTori is doing well but seems to have hit a plateau....they have her at her max feed (15 ml per hour--which is 2 ounces every 2 hours) but she isn't digesting everything (or should I more accurately say enough of each feed), so until she starts digesting more we can't move forward--or at least that was the new overnight, you never know if that will change when the doctors do rounds! I guess as long as we aren't moving backwards I can't complain. She is such a doll, she just sleep and when she is awake just looks at you.....She only seems to cry when you change her diaper! Her poop is transitioning to the more typical breastfed baby poop, yellow and seedy! She is continuing to poop well on her own! She is almost back to her birthweight!
We got to do KANGAROO CARE yesterday during our visit. We only did it for about 35 minutes because the chair I was sitting in wasn't very comfortable but you could see an immediate difference in Tori, she only had one brady episode (and it was very short) and she looked so very happy and content. We plan to do kangaroo care with her during each of our upcoming visits as long as she tolerates it!
Kangaroo care is a technique practiced on newborn, usually preterm, infants wherein the infant is held, skin-to-skin, with an adult. Kangaroo care for pre-term infants may be restricted to a few hours per day, but if they are medically stable that time may be extended. Some parents may keep their babies in-arms for many hours per day.
Monday, October 11, 2010
Monday, October 11, 2010 5:41 AM, EDTThey capped Tori's PICC line! She is now completely on BREASTMILK! Guess that means that mama needs to keep up all the pumping, since Tori is now dependent on me for food! They have decided that if she isn't laying on her right side that she is very slow to digest food (it is staying in her gut 2 hrs or more) but that when she is on her right side she is only keeping about 20 minutes worth of her feed in her gut. They said it has something to do with gravity, guess I will believe them and hold her laying to her right.
They are going to start offering her a pacifier dipped in breastmilk to see how she handles it. Babies of her gestational age rarely can coordinate the whole suck, swallow, breath thing and given that she is still bradying (forgetting to breath) every couple of hours we certainly don't want to add another element that stresses her out too quickly!
Bradycardia: Definition: A slower than normal heart rhythm. In newborns, a heart rate is termed bradycardia if it falls below 100 beats per minute in a baby less than 1250 g (2 lb 12 oz) or to less than 80 beats per minute in a bigger baby. Bradycardia is often associated with apnea of permaturity, and when apnea and bradycardia come together they are often called “As and Bs.” When babies are in the NICU, their hearts are monitored, and episodes of bradycardia are treated with stimulation. If bradycardia continues, medications such as caffeine may be used to treat the condition. Pronunciation: BRAY-dee-CAR-dee-uh Also Known As: Bradys, "Bs" (in "As and Bs")
And now onto the daily Laura update! The swelling in my ankles is starting to really go down, there is now definition in my legs below my knees, for days they went straight down from my knees to my ankles with no distinction, but now I can actually see that I have ankle bones! Another step towards feeling human. My incision is still very tender, but I suppose that is to be expected, it is clean and closed, I guess it will just take time.
The food keeps showing up. I am so grateful, words can't even begin to express just how amazing and surrounded by love I feel! The food has all tasted so wonderful (apparently my friends are all very decent cooks!) and knowing that the kids have dinner makes it easier to be away from the house. Jay and I usually just reheat food when we get home, the kids seem to be eating earlier in the evening. They will probably be disappointed when it is back to mom's cooking!
Sunday, October 10, 2010
Sunday, October 10, 2010 12:46 PM, EDTTori did well overnight! They have continued to up her feeds and if things go well by Monday morning, she will be completely off the lipids and only receiving breastmilk! It makes me so happy to even consider that it will be only MY MILK that makes my baby grow and heal from then on out! We have come a long way in a very short time.
Once she is only on breastmilk, they will stop the continuous feeds and go to something called a consolidated feed, where instead of the milk being dripped in continuously, they will feed it to her more quickly (instead on one ounce over 3 hours, they will feed her one ounce over 2 hours, then 1 hour, then 30 minutes--this is if I understand what they have told me correctly, sometimes I get the details out of wack!). After she shows that she can tolerate the consolidated feeds, they will start working on getting her to eat by mouth (she will be offered her feeding and what she can't suck from the bottle will then be fed to her through her ng tube).
She pooped a few times yesterday, again, we are so excited! The poop is dark green, like meconium would be, but much more of a liquid, nothing like the breastfed baby poops I have been used to with the other kids!
We visited with her for about 4 hrs yesterday and then I suddenly felt like a truck ran me over, my stomach was killing me, I was in pain......Jay brought me home and I slept off and on until morning.....maybe I am trying to do too much, but it feels so right to sit with her and hold her.
We plan to head down later this afternoon to spend some time with her! Hopefully we will miss all the Bengals traffic heading into town for the game and the Reds traffic later tonight!
Saturday, October 09, 2010
Saturday, October 9, 2010 7:43 AM, EDTIt's a 3-peat.....or a 3-poop!
I have never been SO OBSESSED with peeing (me) or pooping (Tori). Yesterday was the day I went back to see if my bladder was going to work. I was so scared, could feel a panic attack building as I waiting for the appointment and as they filled my bladder with 150 ml of saline and then ordered me to pee! Talk about PRESSURE.....fill that bladder up and be told to pee with people standing there waiting on you! There were a few minutes there when I thought I wasn't going to be able to void, I started to cry and turned on the water in the sink to drown out my sobs....and lo and behold, the sound of running water.....well, the pee FLOWED! I have NEVER BEEN SO HAPPY to see PEE in my life! The doctor still freaked me out, talked about how sometimes it works the first time but then not after that and about teaching me to self-cath.....believe me I flooded my body with fluids and was trying to pee again as soon as we got to Children's.....so far so good! I am trying to void every few hours because I am freaked out about stressing out my bladder! She also tested me for anemia, saying I am extremely pale, but honestly I am the same color I always am, some of us just can't help that our natural color is ghost white!
Tori had a AMAZING day....they have agressively upped her feeds and she POOPED not once, not twice but THREE TIMES between 4 PM and 9 PM last night! Her first poop without the help of a suppository! 2 weeks ago you would have never been able to convince me that wiping green sticky poop off a baby's butt would have made me so happy! She does seem to be having a lot of food left in her stomach every time they check, but the didn't seem overly concerned. Her belly is still nice and soft and she doesn't seem to be in any pain! Jay and I spent about 5 hours with her and Hannah came and sat with her too for awhile. My mom sat with her while we were at my appointment at Good Sam.
Her weight went up, She is just over 5 lbs now! Hopefully the gaining weight and pooping with be her new pattern!
Waiting a bit and will call for her overnight update!