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.