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.

Happy One Month Birthday Ava

Yea! One month with our sweet Ava. She is over 3lbs 1ounce now and doing well.

Linda is feeling better each day. Her MRI went pretty well yesterday. Although it was tough for her she made it through it fine (only tried to escape a few times).

Rob.

Taxol Round 1, Ava's 4 week B-day, Riverbend and Frat houses

Linda had her Taxol on Thursday. It went pretty good! She had no allergic reaction which was a huge relief. It was different having the infusion in the hospital instead of our favorite infusion nurses at the infusion center. We had some weird experiences with her infusion but nothing too critical. Let's just say we missed the infusion center dearly and will be glad to be back there for the next round!

Linda has had some side effects (nerve, muscle pain) which haven't been fun but she is feeling better recently. Overall, she is doing well on the Taxol but she is still very anemic (slightly worse than last time but she feels a bit better). They again offered her a transfusion but she doesn't feel bad enough to do that yet. Linda does get tired at night, though. She has an MRI tomorrow which she isn't looking forward too (darned claustrophobia isn't fun in MRI machines) but with a little help from some medication she will be fine, and it will help us nail down her surgery plan.

Ava's 4 week birthday is today! We brought in some wonderful treats that Linda's coworker Michelle made for the nurses to celebrate - it was gone in short time! The nurses are learning that Tuesday is treat day for Ava's weekly birthdays.

Ava is doing pretty good. She was doing well on her airflow of "4" so they recently dropped her to "3". She has been having a little bit more difficult time on 3 with her breathing (fast respiratory rate at times) and needing a bit more oxygen. We're hoping she will adjust in the next day or two and settle into a better pattern. --> Updated at 10pm: She was still having some problems at 3 so they bumped her back to 4 again. This is the ups and downs in the NICU (remember, a few steps forward, and a couple back!). It's tough as parents to experience even though we expect it now and it is normal for babies of Ava's gestational age. Ava is becoming quite "chunky" (well, for her anyway) - just a touch shy of 3 lbs now! She gained almost 4 ounces one day and I'd swear she was visibly bigger and longer when we came in that morning to see her. Her feedings are going well which is very nice and we hold her at least once daily (for 1-2 hours) during one of her feedings. We gave Ava her first "tubby" bath and she wasn't quite sure what to think about that! She seemed to like it, though and didn't even cry. Ava will probably be in the NICU until December so we are settling into a routine with her. Here is her "tubby" experience:

We continue to enjoy Riverbend hospital and the staff here. The lobby looks like a ski lodge with a big fireplace and wood/tile flooring. There is also a baby grand piano that people play from time to time. We had a harpist playing for Ava one night and she seemed to really enjoy that. Here is a picture of the outside of part of the hospital:

We stay at the hospital guest house when in Eugene. It has been nice and they are upgrading us today to a room with a queen bed (we've had two twin beds which has been like staying in a dorm but it had a private bathroom and ground floor access for after Linda's surgery so we couldn't complain). One interesting aspect of the guest house has been it backs up to a creek and a fraternity house. Let's just say the parties and hazing incidents we hear at night have been "entertaining"! Here is the picture out our back deck of the Beta house:

Linda's mom and grandmother visited the other day. Here is a picture of Ava with Mom, Grandma, and Great Grandma!

Here is a better picture of Ava:

Idgy the Cat has had it with us - she sticks her tongue out at us when we show up back home in Corvallis:

Rob.

PS: CONGRATULATIONS to Audrey and Kevin DeKam for their baby boy, Powell, who was born this week! We look forward to Ava and Powell playing together in the future (sorry, Powell, you have competition for Ava as the NICU nurses keep trying to set her up with some of the boys here). Audrey set up and manages this blog for us and has been a great help in many ways.

Taxol and Spacesuits

Linda gets her new chemo in the morning - Taxol. The good news is that it means she is over halfway through her chemo! Taxol seems to be easier for most people than the A/C but has some new side effects (numbness and a very small percentage have a bad allergic reaction to the vehicle the taxol is mixed with). She has an MRI scheduled for next week to check on the tumor (to check on location for the surgery) and to ensure there are no others hiding in the other breast. It will help with the decision on lumpectomy versus mastectomy later.

We will report to the hospital in the morning since she has to be there all day to ensure there is no allergic reaction. Linda got her port accessed and blood drawn today so she is all ready to go!

Little Cricket has been doing a bit better the past couple days and is back down to 4 again on her airflow. We are currently missing her since we're in Corvallis for Linda's chemo in the morning. It is tough to be away from her for any length. But, we call and check in on her often!

Here is a picture of me from a cell phone camera that I thought may be entertaining (Brian took the picture!). This is right after Linda's c-section and Ava's birth. I still have my Tyvek suit on from being suited up for the Operating Room! I think I wore the suit another several hours since I was too wired to take it off and everything was so surreal I may as well be in a spacesuit.

A few people have asked how Austin and Brian are doing with everything. They seem to be doing relatively well, given everything that is going on. They are both excited about Ava and been to visit her a few times. They are both worried about their mom, but have been helping out and expressing themselves in healthy ways, from what we can see. I'll try to talk one of them into doing a "guest blog" at some point so you can hear their perspective!

Prayers for a good round of Taxol in the morning.....

Rob.