Grateful

Of all the years I should of mailed Christmas cards - this would have been it. I wanted to share with everyone how grateful we are to have the wonderful family and friends in our lives. We are grateful for all the prayers and support we have received over the past months and continue to receive.

I am so grateful for my wonderful husband - he has been so loving and supportive through all of this. He is the most wonderful Father - I love watching him with Ava. At the hospital, when he wasn't with me - he was with Ava (all hours day & night.) He would go down and hold Ava's tiny hand when they did her labs and tests. One night I had a fever and he set his alarm for every hour and would check my temperature (all through the night) to make sure I didn't get to 101 - which meant I would have to go to Emergency room. He has never missed a Doctor appointment and is there for all my tests/procedures. I could never put into words how much he means to me and how much I appreciate and love him.

We are so grateful that Brian and Austin are doing so well and we love being back home - all together as a family. Brian's Senior year at OSU is going very well. Austin seems to be enjoying his 8th grade year and made honor roll. They are bonding and building their relationships with their new little sister. Austin likes to hold her in the mornings before going to school - very nice time for the two of them.

We are so grateful and Thankful for our little Ava who is thriving - she weighed 9 lbs 1.5 ounces last week. We are grateful for all the women who donate breast milk as it really does make a difference. What a gift to have her home. Although we are not getting much sleep :)

For the family and friends who have just been so incredible, loving, and supportive to us all - we appreciate all you have done for us. We love you all.

For the breast cancer survivors who have been so willing to share your journey and provide support. I am grateful for the relationship with you all. You inspire me.

For the Team of Health care providers - we are so grateful that they acted so quickly - we have received the best care. People just thought it was so amazing that the NICU nurses came to help out when I had my surgery - this is an example of the wonderful people who have come into our lives. So many of you are now are friends - I will never forget what you did for us.

People often express how much they enjoy the blog and how much they appreciate Rob keeping everyone updated. They say they are moved through all their emotions (happy, sad, laughing, crying) from the blog. We want you to know that we have been moved by the support and thoughtfulness we have received from all of you. We have never felt alone in this journey.

We are grateful to God for hearing our/your prayers and answering them. It is a testimate of the power of prayer and faith.

We are looking forward to the New Year and wish you all a New Year filled with happiness & health.

With love, Linda

Good news: Clear Margins, 2/17 nodes involved

Thank you for everyone's comments after the last post - we appreciate it!

After the news from the surgery that Linda had at least one lymph node positive, the next best thing we were hoping for was minimal additional nodes affected and "clear margins" (no cancer on the edges of the removed tissue which would require additional surgery) around the breast tumor. The great news from today was that they only found cancer in 2 out of the 17 nodes removed! Of those, one was the cancer they noticed in the original Sentinel node biopsy during surgery. And the second node was very minimally involved with just a microscopic tumor amount. The remaining breast tumor was only 5mm so very small. This is all good news after the previous disappointment.

Linda had her drainage tube removed from the armpit surgical dissection site. She will be at higher risk for lymphedema in the future so she will be taking extra precautions to prevent that from happening. But, everything appears to be healing nicely and she will start working on her arm mobility over the next couple weeks.

Next week, we meet with the radiation oncologist to determine a radiation plan, and with the medical oncologist to review the overall treatment plan post-surgery and post-chemo.

Ava had two outings today. First was to the pediatrician where we were hoping to get her second monthly Synagis RSV shot (antibodies) to help her fight it should she get this nasty illness. Unfortunately (especially given the snow and icy 25 degree weather) there was a mixup in approvals/etc so we'll have to go back another time. But, she did get a checkup from the pediatrician so it wasn't a wasted trip. The Dr was happy with Ava's progress and she weighed 8 pounds 5 ounces! Most people that see her still comment how little she looks but she looks very big to us! Our second outing was to the surgical oncologist where Ava offered mommy moral support while she had her drainage tube removed.


Ava ready for her big outings today:




Rob.

Recovery!

Things have gone well since the surgery. Linda was discharged the day after surgery and was already feeding Ava soon thereafter - some Vitamin A(va) seemed to do them both good. Linda is down on her pain medications and even went for a short walk today. We have a follow-up appointment with the surgeon on Tuesday where they will remove the drainage tube/bulb they put into the lymph node removal site (right below the armpit) and where we'll talk about the results from the pathology on the nodes and tumor site.

Ava is doing well. She was 7 pounds, 11 ounces last week, so is likely ~8 pounds now! She is strong in mind and body and continues to show us how she makes it through the challenges thrown at her. The home health nurse was impressed last week how she can move her head around (no comments on how she got this because her mom's name is "Linda Blair" - same as the movie star - please) and also lift her legs at the same time.

Hair?! It's true - Linda's scalp is getting some hair! It's earlier than we thought and although fairly sparse now it's a good indication of recovery from the chemo. I think she may have some hair for Christmas! That with snow on the ground this morning are both nice surprises for us.

I had a nice laugh this weekend when we got a "denied" from the insurance company for Ava's $220K hospital stay (that plus the doctor's bills there should push us over $300K). It is just a mistake that I'll get cleared up but we continue to appreciate how fortunate we are to have double insurance coverage on Linda and Ava during these times. How do people without insurance manage a situation like this? I can't imagine that stress on top of everything else. Even with double coverage we will have a good chunk of out-of-pocket costs. It's sad how one "unlucky event" with a little bad timing (time without insurance) could really wreck someone's financial future.

Closing with some pictures. This is a beautiful photo that our friend Barbara S took of Linda and Ava!

Here is a photo of Ava's Crib:

And finally, a photo of Ava and brother Brian:

Rob.

Surgery: Quick Take

Linda finished her surgery today like the champion she is. However, it was a long day! We started at 6am, checked in, ran through some imaging tests to find the Sentinel Node and remaining breast tumor mass. After that, she had surgery where they checked the Sentinel Node (actually a few nodes showed as the possible Sentinel Node so they checked these) in surgery and one was still positive for cancer (as was the case before the chemo). Although we knew the statistics said this was the most likely scenario, we were hopeful after the great response to chemo that Linda had that the Sentinel Node would be negative. The upside is that Linda still had an excellent response from the chemo in how much it reduced the tumor and node sizes from the initial diagnosis. Had we had surgery at that time (at initial diagnosis), they would have taken the additional nodes anyway. The good response to chemo that Linda had is a very positive sign, even though the node status being negative would have been icing on the cake.

So, in addition to the lumpectomy and Sentinel Node removal/checks, the surgeon had to take a mass of tissue from Linda's armpit area with additional lymph nodes. They will check all these masses with more in-depth pathology over the next days to see how many additional nodes may be positive. The surgery thus took longer than initially hoped and the recovery will be tougher. Linda stayed the night in the hospital since her pain was high and she also got a bit sick from the anesthesia when she woke up. Ava, Brian, and I went back to visit her later after I came home and she was feeling much better at ~8pm than she was when I left at ~6pm. We were able to show off the baby to one of the nurses who transported Linda to Eugene the night she went there to deliver Ava!

Ava stayed the day with two of our wonderful NICU nurses, Beth and Sheila who are also both breast cancer survivors. They said Ava was great for them all day and they had fun seeing her again. It was so nice for me to be able to be there for the surgery while trusted souls (that could also manage any unique issues she might have) took care of Ava so a huge thanks to Beth and Sheila for driving from Eugene at a crazy morning hour and spending over 13 hours with Ava!!!

Linda should be home sometime tomorrow - recovery will take about 4-6 weeks they said. We're now hoping the pathology reports will come back with "clear margins" (no cancer in the outside edges of the breast tumor mass that was removed) and minimal involvement in the remaining lymph nodes that the surgeon removed.

Linda is happy to have the surgery behind her and is looking forward to healing over the coming weeks so she can lift Ava with her left arm again soon!

Rob.

Pearl Harbor Day (and Ava's due date!)

December 7th - a day that will "live in infamy" (Pearl Harbor for you history buffs). And, Ava's original due date (I know, it was really yesterday, but I'm about 24 hours late in most things these days!). In preemies, the due date is used to calculate their developmental milestones (walking, crawling, talking, etc). This is done for the first 1-2 years since the first months of her life were focused on things like eating and breathing, regulating temperature, etc - things that newborns already have developed. So, Happy Adjusted Age Birthday yesterday, Ava! You are one day old today for your developmental clock and doing great!

Ava had her eye appointment in Eugene today. We made the big road trip to Eugene, took a bottle and diaper bag, and she had her checkup. They put "retractors" on her eyelids and use a swab to poke around her eyes (after her eyes are numbed) to make sure she still isn't getting ROP. It's a bit tough to watch, but necessary. She got a good report and just has a follow-up in a few months to make sure she won't need any glasses. We even snuck over to the NICU in Eugene for a bit to say "hi" to Ava's (and our) friends there!

Ava's eating has improved with no major episodes since the scare from a few weeks ago. She still occasionally "zones out" and pauses her breathing while eating but not to a scary point like before. This is becoming less of an issue and should go completely away soon.

We're not sure of her weight since last week but it's probably about 7.5 pounds now. She looks bigger every day to us! She is still eating every ~3 hours so that keeps us hopping at all hours of the day and night. We're short on sleep but having fun with our little girl.

Today is Brian's birthday! Linda's birthday was Friday. I think Ava decided to come early to avoid the December birthday crunch. Just my theory.... :)

Linda is doing well but a bit tired - we split the feedings but it is still tough as most of you know from your own newborn experiences. Linda's surgery is Thursday and we're a bit anxious since there is still some unknown to it. We won't know the lymph node status until the surgery and then they will decide how many other nodes to take using a Sentinel Node test. We're hoping the nodes will be cleaned out (cancer free) from the chemo and the node surgery will be minimal. The surgery day starts at 6:15am since it involves the Lumpectomy, Sentinel Node test and removal, then potentially additional node surgery, but we will be home that night - probably sometime after 5pm.

Also, Audrey (our "blogmaster") changed the blog settings so now people can post "anonymous" - please do still leave your name but now you don't need to sign in to the system to leave a comment. Many people have stated they had problems leaving comments. Hopefully this will help. Wendy Gale, you still win the "best blog commenter" award - thanks for all your nice comments - we read everyone's comments and appreciate them all.

Pictures! Mom and daughter:

Little cow outfit:

Getting dressed up for the big trip to Eugene (a quick nap first, though):

Rob.

Missing: Preemie

Missing: Preemie nicknamed Cricket. Possibly taken by the cats since she has received more attention than they have as of late. Found in her place, a 7 pound 1 ounce little girl that is overly social especially at late night hours. Likes to watch David Letterman and the midnight movie on TBS with her Pops, go through the coffee drive-thru and cuddle with her Mom, and screech when she's not getting attention. Believes sleep is highly overrated.

Recent photos follow. Here she's just hanging out being cute (outgrown her preemie clothes and into newborn sizes now):

Help, my mommy overdressed me for our stroller ride - I look like Randy Parker (Ralphie's little brother from A Christmas Story)!

Alfalfa has nothing on me:

A girl has to have an outfit for every occasion. In this photo, I'm sporty, yet stylish.

Help, I'm being attacked by a cute and incredibly soft and furry infant-sized polar bear rug!

More later,

Rob.

Happy Thanksgiving!

So much to be thankful for today.

Ava has been home for over a week now and is doing well! We feel sincerely blessed that she did so well in the NICU and was able to be home with us for Thanksgiving. She is keeping Mom and Pops hopping to her needs, and we are not getting much sleep. But, this is a welcome kind of tired for us!

Her pediatric appointments have gone great. The doctor is very impressed with her muscle tone and overall health. She is over 6 pounds 6 ounces now and outgrowing her preemie clothes and diapers! We also have a home health nurse that will stop by our house about once per week (part of the county health dept) to check on her, and she can also do weight/measurements to minimize the need for us to go to the pediatric office (where colds abound!).

She still has some feeding problems at times. She had one bad spell last Friday night when she choked on her milk and then didn't recover until after many minutes of stimulation and after turning a nice shade of blue. But, after she caught back up on her breathing she was pink and ready for more action! That precluded a tough few days but the past few days have gone much better (similar to her last week in the NICU when she was doing fairly well) so we're hopeful we're past the toughest part and that was just a temporary backslide. These problems are a brain maturity issue as she still learns how to feed correctly.

A Thanksgiving-size serving of good news all around: Linda's bone and cat scans were clean! These were checking for any additional signs of cancer, and although they didn't expect to see any, it is very relieving they did not. They also showed the lymph node size to be "normal" so hopefully most if not all the cancer is gone from the main node that was initially positive. Her surgical oncologist has okayed the "Sentinel Node" surgery where they will inject dye, see which node is impacted first, remove and biopsy that node, and then make a determination on additional node surgery at that time. This is all done during surgery! If her sentinel node is still affected, she'll probably have 10 - 20 additional nodes removed. If it is clean, they likely won't take anymore lymph nodes. Surgery is still on track for December 11th.

Check out Ava's cool pink Nike shoes from friends the Adams:






Matching hats for Linda and Ava from friends of the Kolbs:




Play time on the floor:






Ava has been enjoying time with her brothers:




Best wishes to all for a nice holiday weekend,


Linda and Rob.

Cricket is HOME!

Cricket came home Wednesday night after over 10 weeks in the NICU! She is doing great! Many thanks to everyone who helped make this happen through your support over the past 2+ months.

She is an ounce away from 6 pounds, passed her eye test (still needs another follow-up in 2 weeks), and said many goodbyes to her wonderful friends in the NICU. We already miss them but it is nice to have her home. Ava is very social and likes to have people around her. Talking, noise don't bother her but she gets a bit cranky when she's not being held, especially at late night hours when we're (supposed to be) sleeping. So, we are not getting much sleep but it's still wonderful to be home with her.

I'll post more another time, here are some pictures.

Mom, Dad and Ava in her homecoming outfit:

Growth chart page 2:

Car seat test!

Ava and her NICU pal Gaiane. They had matching Mexican dresses (gifts from a couple of NICU nurses that just got back from vacation). In this photo it looks like they had a little too much partying and drinking (milk of course!):

More later,

Rob.

Bringing In The Carseat

Ever since we've had Ava in the NICU, we've seen dozens of people take the final test before taking their baby home. The test is the Car Seat Test. People need to bring in an appropriate infant car seat (one that will safely fit the typically smaller sizes in the NICU). The nurses place the baby in the car seat while connected to the monitors. The baby sits there for at least an hour and is observed to make sure he/she can manage sitting for that long without having any apneas or other problems.

"Bringing in the Carseat" usually means a ticket home for the lucky boy or girl. We've seen many families bringing their carseat in empty, and the next day they go home! However, we also have observed a few families bring in the carseat, and their child has a problem (a final setback of some sorts), and then they take the carseat away empty until the problems are resolved.

Tomorrow, it is our turn for Bringing in the Carseat!

Here are some updates from the last week on Ava:

She is up to 5 and 3/4 pounds! She continues on no supplemental oxygen. She is exceeding her minimum required feedings by bottle. Ava still needs to be watched closely while feeding, to ensure she is pacing herself. Sometimes we need to take a break and burp her because she is trending toward, or having, a bradycardia (heart rate reduction) due to not breathing as much as she needs to. But, we can spot these every time now, and intervene. They are reducing in quantity and not as bad when they do happen. She does sometimes still choke, but recovers much quicker now. We have made good progress in the past week!

Ava had her RSV (a common virus) antibodies (helps protect against the worse side-effects of RSV - which can really hurt her if she gets it). Almost every baby will get RSV by the time they are two. We just want to delay it until her body can fight it off better - otherwise it could be back the ICU for us. The best prevention is good hygiene! So, when Ava comes home, we'll be holed up inside with boards on the windows and hand sanitizer for awhile, no offense to our friends and family.

Ava had another head ultrasound today, just a follow-up from the first one to make sure there are no problems. She has another eye test tomorrow, and her car seat test. Linda and I had instruction in all the aspects of her care, including infant CPR in the unlikely event that is needed.

Ava Unplugged: We "roomed in" last night. This means we stay the night with Ava in her room (they have a hide-away bed for us - not that we used it much). We ordered in pizza and the nurses only help us if we ask during this time so we're responsible for everything, as it will be when home. Ava is on a 3 hour feeding schedule with about an hour of that is busy time (temp, diaper, getting the food ready, and feeding). So, we would have been lucky to get 2 hours sleep in between feedings but Ava showed us how social she is at night (we've heard stories already from the nurses!). She slept about an hour then got real fussy until someone gave her attention. We also had all her monitors unplugged. This is a bit nervewracking, but designed to ensure we can manage without those crutches when we are home. We did great, and managed through all the nuances of her care without the monitors! Okay, I did get up a few times to peek at her to make sure she was okay. Other than the only 1-2 hours sleep we got the entire night, it was wonderful to spend this time with her. When we are home we will break up the feeds schedule differently (right now, we alternate, but both observe every feed) so we can try to catch more shut-eye each night.

Hopefully, we'll be Bringing Home the Carseat on Wednesday after 10 weeks, one day in the NICU!

Linda is doing well. She has been tired and achy as normal with this type of chemo but overall doing well. She was still anemic at her last blood test but slightly up from before, so showing steady improvement. Her other counts continue to look good. She has a CAT scan and bone scan at 7am tomorrow. They don't expect to find anything new from these, but they will be a baseline as she has checks over the coming years. Her surgery is scheduled for December 11th! It will be an outpatient surgery, but we'll go in at ~6am and come home about 5pm that night. One of the NICU nurses has graciously offered to watch Ava while we are in surgery!

Ava in her crib:

Feeding time w/ dad:

Okay, who bought her the convict onesy?!

Ava's delivery doctor: Dr B delivered Ava that night many moons ago! We have grown very close to him and his partner, Dr K, as they are high-risk OB/GYNs in Eugene and have followed us since Cricket's early ultrasounds. Both have taken outstanding care of the three of us. Dr. B played for the Oregon Ducks basketball team in college and is a wonderful person - and yes, he is as tall as he looks!

Rob.

Bye Bye Mr. Kimo

DONE!!!


After my last post about Mr. Kimo Linda said my blogs were easier to follow when I haven't had a couple beers. So, here I type drenched in sobriety for today's update. :)

Our dear friend Mr. Kimo has left us, after a job well done - Linda has completed her last round of chemotherapy! This round has gone well so far and she is very excited to be done. We will miss our wonderful support group at the infusion center, as they have become dear friends to us and such a positive piece of this whole experience. Here is a picture of Linda and her main infusion nurse after she finished her last chemo. It was a joyous but teary event since now we won't see our friends every other Thursday but we promised to stop by with the baby.





We met with the surgical oncologist Wednesday. We have decided on a lumpectomy. They are also proposing a sentinel lymph node test. This tests her node in the middle of surgery by tracing the path of some dye in her system. If it is still positive (as was the original biopsy), they would normally take 10-20 additional lymph nodes in surgery. However, the chemo could have cleared that node (it does in ~30% of cases like this but we won't know until they test it in the middle of surgery) in which case taking more nodes could be overkill and lead to other side-effects. Linda's surgeon is feeling great about Linda's progress from the chemo!


On Thursday Linda had chemo and we also met with the medical oncologist. Since Linda is triple negative (an indication of her type of cancer: estrogen/progesterone/HER2 tests were all negative - which is good and bad) she won't have additional chemo (some people get MORE drugs such as Herceptin or Tamoxifen after they are done with their initial rounds of chemo). So, the good news is she is done with chemo! The medical oncologist is also feeling positive about Linda's results so far - her response to the chemo has been great - thank you to everyone for your prayers and positive thoughts - they continue to help!

Surgery may be ~December 11th if all goes as planned. Radiation will follow that - likely in January.


I've got to run but a short note on Ava - she is doing well (5.5 pounds) and continuing to improve - I'll post an update on her another time!

Rob.

Happy 2 Month Birthday Cricket!

Our little Cricket is 2 months old today!

Ava has been doing well. The vaccinations were not very fun (5 individual shots - luckily the nurses tag teamed them to make them fast). Ava had a lot of "Bradys" that day during feeds and even while I was holding her. She was just more fragile than normal and didn't eat the full amount that day. However, she was much better the next day and didn't seem to have any major reactions! She has also been off the feeding tube since Wednesday when she pulled it out on her own! So, now she needs to eat the full amount by the bottle. This has been a bit challenging at times. The biggest concern is her breathing while eating. She sometimes stops breathing while eating and that causes a Bradycardia and desaturation of her oxygen (she turns a bit blue). However the worst ones are when she chokes on her milk, bradys, then has a major desaturation. She turns very blue and about 1-2 times per day hasn't fully recovered on her own without some oxygen "blow-by" and a lot of rubbing. This is just a symptom of her prematurity and should get better soon. But, it is very scary for us when we feed her and she has these choking episodes.

Ava is up to 5 pounds, 2 ounces! She also got her Pulse Oximeter (pulse-ox) off so now they are only monitoring her heart and respiratory rate. It is nice to have one less cord to worry about when holding her but the oxygen saturation was a nice crutch to be able to see how much oxygen was in her blood (the doctors had to wean us off of it more than Ava!).

Linda continues to feel well and is ready for her last chemo on Thursday. She wore her wig into the NICU today and everyone seemed to like how it looks on her. She only wears it occasionally. I'll try to snap a picture sometime!

Here is a picture from today in her purple velour outfit!

Rob.

November Homecoming???

That's the rumor... If all continues to go well, Ava could be home in a couple weeks! Updates from the past week:

Ava passed her 2nd eye test. She has no signs of ROP but still has immature retinas (not a concern). They should continue to get better and she will get another test in a couple weeks to be sure. She is off all her breathing equipment and continuing to do well without it! She has been taking almost all her feedings by bottle but she is still refining her technique. Mom and Dad still get a little freaked when she does an occassional choke, Brady, desat (low oxygen) while feeding. Hopefully these will get better as she continues to learn and mature (and as we get better at feeding too!). Her feeding tube is out most of the time and only goes back in if she is too tired to eat on her own. She has had an occasional Bradycardia but these are very infrequent now and she recovers on her own.

Ava is now only a half ounce under 5 pounds! She is 4 pounds, 15.5 ounces as of tonight. On deck for this Friday are her vaccines. She gets the same 2 month vaccines as term babies plus the ones she should have got when she was born. Common side effects are fevers and other stuff. It will be good to be in the NICU for these where everyone can keep an eye on her. Overall, she is doing great and we are so thankful for this. She is currently (as I type this from the NICU) making all kinds of noise as she tries to work through a bowel movement but even this is music to my ears!!!

Linda is feeling good. She made it through Chemo #7 with no major problems (the same stuff as last time but without the fever) and is enjoying feeling nearly normal until her last Chemo appointment next Thursday. That will certainly be cause for celebration!!!

We're both doing well. The past 8+ weeks have been rewarding yet exhausting. We are looking forward to being home later this month where we can get into a new routine. Ava is on an every 3 hour schedule (feed, change diaper, temp, etc) so it will be a new type of tired for us... but mentally it will feel very nice to have her home! At the same time, we will miss our friends at the NICU. We've bonded EXTREMELY closely with many people there ... we will certainly be seeing these friends after we leave.

Picture time!

Daddy time:

Mommy time:

Bigger Bro' Brian got to hold her recently!

Nurse Monica made her a cool Beaver hat!!! Monica was one of the nurses there when Ava was born at 3:27 AM that September night many weeks ago.

Here she is in her Beaver hat and her Beaver Trick-or-Treat bag:

Look Everyone! I finally fit in my Preemie clothes now and have no feeding tube tonight!!!

Rob.

Happy Halloween!

Ava celebrated her first Halloween yesterday! I will share some pictures below but first here is an update on her and Linda:

Naked Face (almost): Ava had all her breathing tubes removed this week and has been without them for about 4 days now, breathing the same air as the rest of us! She seems to be doing well without them so we're hopeful that will continue. They call it "Naked Face" in the NICU. She does still have her feeding tube until she masters bottle feeding better - but, has taken a few full feedings by bottle from the nurses. Mom and Dad are bottle feeding her but not quite as skilled as the nurses yet.

Ava has also been pulled off her red blood cell booster shots ("Epo") in hopes her body is now mature enough to create enough blood cells on her own. These shots are given subcutaneously 3 times per week (ouchee) so we're hopeful she can stay off these. Ava is about 4 pounds, 11 ounces now and has been steadily gaining each day. She has had a congested-sounding nose (much more than normal and even after suctioning) the past few days but we're told this is a common preemie thing and not a sign of cold or illness. Upcoming, she has another eye test Tuesday, and she is due for her vaccinations late this week (four pokes - ouch!).

Taxol Round 3: Linda survived her next-to-last round of chemo! Less than two weeks until we are done with chemotherapy. She is currently a bit tired (for her - but she still was up before me this morning to go meet people at the "Eat and Run" race on campus) and gets achey from the taxol/neulasta. Her anemia was slightly better again this time - it is slowly improving although she is still well below "normal".

Some people have asked why we did chemo BEFORE surgery since that isn't what they've seen others do. This is called "neoadjuvant chemotherapy". For us, it was the right path since it reduces the tumor size prior to surgery, thus making the surgery less invasive and less destructive should we opt for lumpectomy. However, it is also nice mentally to know how well the chemo is working (and if the type of chemo wasn't working well, the docs could have opted for a different regimen). Neoadjuvant chemotherapy for breast cancer is used in up to 50% of cases at most progressive cancer centers.

Trick or Treat! Here is our little "Pea Pod"! Special thanks to Lisa Bennett and Michelle Mahana for custom making the Pea Pod costume for Ava - it was a HUGE hit in the NICU!!!

Ava warmed up for the trick-or-treating in her kittie costume (the nurses bought the NICU babies these outfits!):




Ava had a hand-made OSU trick-or-treat bag from friends Bill and Judy Winkler. They also made a Halloween bib and some special cookies that Ava shared with her nurses.




Check out these cute cookies - they tasted great too!





And finally, here is Ava in her Pea Pod costume and a quick movie while we were trick-or-treating!







Video of Ava's Trick-or-Treat adventure:

Rob.

Ava's Crib, Latte withdrawal time, prep for Chemo #7

The big news since the last post is Ava graduated to a Big Girl Crib over the weekend! She is now over 4lbs 5 ounces. She has been keeping her body temperature up well. It is nice to see her outside her little Isolette although I almost got a bit teary seeing her graduate from the Isolette to the Crib. I wonder how I'll feel when she goes off to kindergarten....


Updated growth chart:

Ava's breathing has really improved over the past couple weeks. She is now on a nasal cannula only (no nasal prongs, just an open half-tube under her nose) and only on .3 for airflow. She is only needing more oxygen than "room air" occasionally during feedings. Speaking of feedings, she is taking about half of her feedings by bottle once or twice per shift. Right now, they aren't pushing her to bottle feed since it is still a bit early for that, but she is a social drinker - only bottle feeding when she feels like it.

Caffeine withdrawal: The doctors have decided it's time to pull Ava off her daily caffeine dose (her morning Latte). It will take about a week for this to completely vacate her system and she may have some more apneas as the stimulation effect wears off. But, it's good that she will be off one more medication. We're hopeful the transition will be smooth.

Howard Hughes had it right: Linda and I find ourselves being quite obsessive/compulsive about sanitation with all the colds going around right now. Linda or Ava getting a cold or flu would be a bad setback and I don't want to be quarantined away from them if I get something. So, we handwash religiously, bought some hospital grade Avagard D for hand sanitizer, and find ourselves opening public doors with our shirts or paper towels. It's much better than the alternative though!

Chemo #7 on Thursday: Linda has her next to last chemo appointment on Thursday. It is another round of Taxol. So far, the effects of the Taxol haven't been too bad - mostly muscle and nerve pain and more nosebleeds, but, when compared with how well the AC chemo went, it is slightly worse - possibly due to the anemia as well. However, Linda is feeling great this week and is ready for her next to last chemo!

Rob.

Big Bro' time and a good week

Austin came to visit Ava again this week so I got some pictures this time. First, he showed his creativity by inventing a new game at the scrub station. I captured a picture but the bubble grew even larger after I snapped the shot!

Next, he got to hold Ava! Ava just loved her big brother Austin and cooed and smiled at him a few times and opened her eyes for him. She thinks he is pretty cool.

Ava has been doing well this week. Her airflow dropped to "1" a couple days ago (the lowest setting) with no major impact and she has been on "room air" (no additional oxygen) for much of her days recently. She does still have occasional Bradycardias and "Desats" (low oxygen % in her blood) but this is age-appropriate. Ava is 3 lbs, 15 ounces (I call it "a poop shy of 4 pounds"). She is on the cusp of moving to a crib! It will probably happen this weekend if she can hold her temperature without the protection from the elements the isolette provides.

She completed her ROP (eye) test. Although the test isn't fun she was extremely tough and only yelped once during it. ROP is the condition that Stevie Wonder (another preemie) had which caused his blindness. I'm happy to say there were no signs of ROP, she merely had an immature retina which is expected at her age. She will have another exam in 2 weeks.

Linda is feeling good and even worked off and on this week. Her eyelashes and eyebrows are starting to fall out but she still has some hanging on!

Rob.

Guest Blogger: Brian

Hello Everyone,

Rob and my Mom have informed me that people are interested in how Austin And I are doing. I just wanted to do a quick post letting everyone know that we are doing great. I really appreciate all the support that everyone has be giving, it really makes huge difference. A special thanks goes out to all those who have helped with housework and prepared meals. The only thing better than living in a clean house is eating excellent food :) Once again, i would really like to thank everyone for their help and support.

-Brian

--> Note from Rob: Brian is currently a Senior at Oregon State studying Bioengineering - he has been watching the 3 cats, dog, and Gecko, and maintaining the house while we're in Eugene!

6 Week Birthday, a couple little scares, Ava's NICU cousin

Ava is 6 weeks old today! We're hoping we're on the downhill part of her NICU journey now. She has been doing well overall. She has stayed on "2" for her airflow and has been down to room air (no additional oxygen in her airflow) for much of the past couple days. They may turn her airflow down tomorrow if she does well today but she has her eye test today so that may be a bit traumatic for her. She has been taking milk from the bottle, about 2-3 times per day. I fed her a couple times (small amounts) which was wonderful! She continues to gain weight and is over 3 lbs 11 ounces now. At 4 pounds they will see if she is ready for a crib instead of her isolette!

Linda is doing well, and has made it through the few days where she doesn't feel her best. Other than a scare which turned out fine (see below) she is doing well through her Taxol round 2!

A couple little scares: First, Ava had some problems during a feeding tube change during the night shift (feeding tube is in her nose, down into her tummy). It sounded like maybe she refluxed during a feeding tube change and then stopped breathing, had an Apnea/Bradycardia, then needed some oxygen and puffs of air from the "hand bag" (oxygen bag that is always nearby in case of emergencies). It was a relatively short spell - about 30 seconds on the bag until they got her vital signs back up - but still worrisome for Linda and I when we heard about it the next morning.

The next night, Linda had a fever - she was very hot (not in the normal way!) and so we took her temperature. It rose to 100.9 and we had one foot out the door to the hospital (101 is a trip to the ER) but then peaked. We measured it every 1-2 hours throughout the night and finally it dropped down to normal by the morning. She didn't have any flu symptoms so perhaps it was a mild infection that her body fought off on its own. Her body has been very resiliant so far and we are praying this continues for another two rounds of chemo.

NICU Cousin: My cousin Christi and her husband Bill have been wonderful supporters to Linda and I throughout our NICU experience. Their son, Mason, is an NICU graduate but still has a couple hurdles to overcome since he has been home. If you want to check in on them and share some positive thoughts and prayers, here is their blog: http://mason-ryder.blogspot.com/ We're looking forward to Mason and Ava swapping NICU war stories down the road! Thanks Christi and Bill for your continued support of Ava and our family.

Picture time: NICU Nurses Monica and Betty knitted some matching hats for Linda and Ava! Here are a couple pictures (luckily, I don't have a pink matching hat!):

Here is a picture of Ava while I was feeding her. She has a special low-flow bottle:

We continue to do well overall!

Rob.

Taxol Round 2, Crickets, and Ghosts!

Taxol, Round 2! Linda had her Taxol Chemo treatment yesterday. It was nice to be back with our friends from the Infusion center where we have developed so much trust and friendships. Linda brought Chips and homemade Salsa for the nurses there to celebrate our return!

The infusion went well. Still no allergic reaction which is the main concern. The Benedryl administered prior to the chemo makes Linda quite "happy" for awhile then makes her sleepy. She is feeling pretty good today. The great news from yesterday is her hemoglobin (HGB) counts were actually UP! This is the first time they have gone up since we started chemo. She is still quite anemic but we're happy the iron and time since the c-section are helping recover. If the trend continues we are hopeful we'll avoid the transfusion path.

After the last Taxol, Linda had some tough days over the weekend with nerve/muscle pain and fatigue. With the improved blood counts, this may be slightly better but we assume she will still have these side effects for a few days. Today she gets her "Neulasta" shot (see previous posts) and then we hope to visit Ava tonight. We're starting to research surgery options for Linda. Surgery will likely be in December.

CRICKET TIME

Little Ava is doing pretty good! She had her HHNP (nasal prongs) airflow dropped to 3 and she has been able to maintain that (although initially her oxygen levels were up a fair amount). She stabilized there, and yesterday they dropped her to 2 on the airflow (liters per minute). This is the point where she had crashed after the first week in the NICU (in Mid September) of cruising along so we are still pretty anxious about this change. But, 24 hours into the change she is still doing well. If she struggles again the doctors have no problems putting her airflow back up.

Ava has completed her Vitamin A shots (yea!), is up to 3 lbs 9 ounces (over 3.5 pounds now!), and the biggest news is she took some milk from the bottle the past few days! Just about half her feedings was bottle-fed (until she tired out), but the fact she could do this (suck, swallow, breathe) is a big step for her. Hopefully she'll ease into bottle feedings over the coming 2-3 weeks. Until then, she will continue with the gavage feedings (feeding tube thru the nose to her stomach). She has an eye test Tuesday to check for a common preemie eye problem called ROP. We're hoping that goes well. The test itself isn't fun (eye dilation along with a retractor in her eyes) but necessary in case there are problems that need treated. Okay, enough of my rambling - here are some pictures! Ava's recent growth chart:

Here is Linda and Cricket with a very cool Cricket quilt/banner that our friend Wendy surprised us with! It is on the wall in the NICU and gets many comments. Someone reminded us that crickets are good luck in China!

Here is Ava with a scary ghost hand-puppet from our friends the Bos's. I think Ava was only feigning fear in this picture so don't be worried for her. :)

Linda's friend Michelle worked with her niece Lisa to make Ava a halloween costume! You'll have to wait and see what she is going to be for Halloween this year (no it's not a cricket!).... The costume turned out great and Ava can't wait to show it off to her friends.

Linda and I, Brian, and Austin continue to do well in spite of our challenges. The main reason is the outstanding love, support, prayers, we have been receiving from our friends and family. We read every blog comment, card, and email. Thank you so much.

Rob.

Much to be Thankful For

As I'm watching Linda hold Ava right now we have a lot to be thankful for (I know, it's not yet Thanksgiving and we aren't sitting around the dinner table, but let me have my moment anyway), and I can't help but to be a bit retrospective. Today, October 13th, was to be Ava's original (post cancer diagnosis) birthday at 32 weeks old! It's been an amazing five weeks since she was born, filled with some anxiety, worry, and much delight.

Some of the amazing things that we have seen happen:

• Cricket's weight has increased from 2 lbs 2 oz to 3 lbs 5 oz!
• Bilirubin levels normal (jaundice and original bruising are gone) – no more UV light treatment with the sunglasses!
• Ava's breathing is much improved! From needing resuscitated at birth to intubation (tube down her throat with a ventilator) to CPAP (the elephant mask) to now HHNP (High Humidity Nasal Prongs)
• Her nutritional needs went from an IV to small amounts of breast milk with an IV, to all breast milk now!
• From Apnea induced Bradycardias (stopping breathing followed by a heart rate slowing) constantly to only occasional “ABs”.
• Ava's digestive system is keeping up with feedings (with good poops and pees)!
• She is better able to maintain body temp (isolette temperature being reduced as she retains her own heat better)
• 11/12ths of the way through her Vitamin A shots (given each MWF – this is an intramuscular (IM) shot in her thigh so we’ll be glad when she’s done).
• She has a good sounding heart, lungs, digestive system, and a good head ultrasound!

Although she still has a long way to go with surely some additional twists and turns, we are very thankful for being so blessed thus far!!!

MORE GREAT NEWS:
Linda had some great news this week! First, some testing came back negative, indicating she does not have the "gene" for ovarian/breast cancer. This is great news in that 1) she likely won't opt to have her ovaries removed, 2) she can still evaluate a lumpectomy as an option (otherwise a double mastectomy was in the cards, and 3) she can't pass along the gene to the children since she doesn't have it! People with this gene have an extremely high likelihood of breast and ovarian cancer (or both) if women and higher likelihood of other cancers if men.

Second, Linda's MRI results came back letting us know that her tumor has already shrunk over 80%! It went from about the size of a 50 cent piece to now smaller than an eraser on a pencil. The chemo has been doing its job with three rounds still to go! In addition, there was no evidence of any other tumors in either breast. Our next Taxol treatment is Thursday. Linda is feeling great right now and re-energized for the next treatments.

Here is a picture of my two girls in the mirror, whom I am so thankful for and happy for.

And here is a short video of Ava with her favorite Binkie. She was going to town on it until I got the camera out and then Daddy had to wiggle it to get her going again. But, you get the idea, even if the video is a bit dark! If you crank up the volume you can hear her noises too.

Rob.