Linda feeling better, Cricket looking bigger!

Linda has had a good past few days. She is feeling much better (but still a bit sore from the c-section) and getting some of her strength and energy back. I'm sure she's still anemic but hopefully not as bad as right after the surgery! This is usually the "feel good" period before her next chemo so we are enjoying that she is feeling better right now. Her next chemo (Taxol) is Thursday and we will spend the day in the Corvallis hospital while they administer her dose and watch for side-effects. The next doses should be done at the infusion center where we are accustomed to going and where we have familiarity and comfort with the great nursing staff there.

Cricket and I have both been putting on some weight. Mine is probably more from the hospital cafeteria food (yes, it is actually very good) than any medical necessity. Ava is up to 2 lbs 7.5 ounces. Here is the growth chart from yesterday (she grew again today after I took this photo!). We're hopeful she has turned the corner on converting her food into weight gains so she can better keep herself warm.



Cricket's breathing was doing pretty good for the days since she got her air pressure turned up to 4 (and they were just about to drop it back to 3) but yesterday she started having more problems than usual (desaturation of oxygen in her blood, called "desats" and some more "ABs" - Apnea induced Bradycardia where her breathing stops and her heart rate drops). These are "normal" for 27 weekers and usually continue for quite some time. Since they were getting slightly worse in the past day they bumped up her air pressure to 5 again. Hopefully this will help her get her breathing back on track.

Ava has been doing well with her feedings and they are augmenting the breast milk with protein and calories to help her. She has been spitting up a little bit at times ("reflux") but it hasn't been too bad.

Today she finally lost her forehead sticker which was used to measure her bilirubin (jaundice). They felt like she is past that for now so she doesn't have the sticker anymore!

She continues to look different every day. It is wonderful to hold her and be with her. It is also amazing how strong and vibrant she is, while hooked up on life support for her breathing. Yesterday she somehow moved into the corner of her Isollette when we weren't looking. Ava loves to give daddy some kicks while he takes WAY too long to change her diaper (I get 30 seconds and then kicked multiple times). Ava loves her mommy and cranks out great oxygen saturation while having Kangaroo time with mom. Some days she will be held by Linda for 2 hours! I also get my Kangaroo time and held her today for about 1.5 hours. Here is a picture in our NICU room of Kangaroo time:



Here is Ava during cuddle time with Mom - and thinking about chasing the kitties when she gets home:




No more paparazzi!!!



We have been seeing many others come and go while we're in the NICU (many stay for days, or 1-2 weeks. Few stay for months but we met one mother with a 25 weeker born in August - she will be a long-timer like us!). Sometimes they share their stories if we see them in the hall or at the Guest House, but most keep to themselves. We are always mindful that we're on a curvy path with some bumps that are foreseeable, and others that aren't. However, seeing little Ava continue to fight and push forward, at just 2.5 weeks old, is amazing. We treasure each moment we spend with her.

Rob.

Happy 2 week Birthday, Cricket

Ava is two (weeks) today! This is a nice milestone for her and she should be through the most critical part now. She is doing better the past few days with her breathing but remains on "4" for the airflow on her nasal cannula. She sometimes gets down to "room air" but most times needs some additional oxygen. Ava has impressed the nurses with her gymnastics and ability to turn her head and kick and wiggle around. I think she is strength conditioning to try to make an escape one of these nights. Mom and Dad both held her today and yesterday, which she seems to like. Ava has been getting some Vitamin A injections and some additional caffeine (preemies often get caffeine to stimulate their breathing and it helps other things too).

Ava's weight has been up and down. She is just several grams higher than her birth weight (~28 grams in an ounce, if I remember correctly). This is common in very early preemies (to maintain weight for the first 2-3 weeks) so the doctors are not overly concerned at this point. She is getting some enhanced breast milk (added calories). For her, just a few added calories per feeding can make a difference. She is tolerating her feedings well (now up to 21 cc per 3 hour period).

Overall, she is doing well. We probably have 2+ months in the NICU and have been staying in Eugene at the Hospital Guest House (thanks again Children's Miracle Network) while we're here which is nice. Although, we have some good stories from the "Beta House" (fraternity) across from us. They have been keeping us entertained at night.

Here is a picture of Ava with her Cricket stuffed animal hovering overhead. She turned her head into her pillow and put her arms up. She was getting good oxygen saturation with this so they just let her be but I thought it was a cute pose and worthy of a picture!

Linda has been having her toughest Chemo yet but is doing better today after a rough first few days. She had some nausea this round (but luckily for her c-section stitches, kept it together). She really didn't have any nausea with Cricket inside her! I've been told that pregnant women have less nausea than those not pregnant.... Her anemia has made her much more tired this time so she has been napping on the couch in Cricket's room as needed. She isn't used to needing to nap so it is tough for her. There are 5 breast cancer survivors that are nurses in the NICU (two are Cricket's primaries) and they have been very nice to us. One of the nurses advocated to put Cricket in a corner room (at least for now) with more room, a couch that Linda can nap on, and a private bathroom so Linda doesn't have to worry about the public restrooms. It is wonderful they are taking care of us and Cricket so well. Here is Linda during Kangaroo time:

Linda is halfway through her chemo now!!! She is done with the AC and starts Taxol in 1.5 weeks. For that, they will have us in the hospital since there are rare cases of allergic reactions to the vehicle in which the Taxol is delivered (I guess there is stuff that you can get that is absorbed better, but I think it costs too much for them to offer it as 1st line chemo - bummer!). She will have 4 rounds of Taxol then have her breast surgery.

It can take about 1 month for the anemia to get better so she may be more fatigued until she recovers from that. However, each day she feels a bit better and a bit stronger.

Rob.

NICU update, Chemo Round 4

Cricket Update:
Things have been going pretty well for Ava since the last update. But, as I've been told many times, it is a bit of a roller coaster with these little ones and they will take several steps forward and a couple back! Here is the latest:

Went off the UV lights again, but then back on, then off, now on again! Some of the bruising she had from the delivery causes her bilirubin to increase, they say, and the UV lights dissipate it well. She looks like a little blue glow worm under the UV lights. She doesn't like it as much since she has to be laying there with glasses on instead of bundled up.

Reduced her Nasal Cannula pressure down to 4, 3, then 2! One of the docs said it was remarkable how quick she was improving. But (he didn't knock on wood), then she had a very rough night last night and a tough morning this morning. So, the docs bumped her air pressure back up to 4 and she has been needing more oxygen percentage lately too. It's possible she just was pushed too far too fast and needed some more catch up time. They aren't overly concerned at this point but are also looking for a "PDA" which is common in preemies - it's a heart valve issue that is treatable. They haven't found one yet but say it's a possibility.

Her breast milk feedings have increased from 1cc dosings to now 15 ccs every 3 hours. She was doing so well they removed her mainline IV (PICC) that they had put in days earlier. Ava is now self-sufficient on feedings (no IV fluids, etc) assuming she continues to tolerate the breast milk well!!! This is a nice milestone to be unencumbered (did i spell that right? it's late) with no IV tubing.

She is pooping and peeing well! and her head ultrasound came back with no major concerns from the docs.

Overall, she is doing well. She went up in weight for a few days, but now is re-adjusting (due to weaning off the IV) and so is back down a bit to close to her birth weight. She still has her Bradys, Desats, Apneas from time to time - some days are good and some aren't so good. But, it seems the overall trend is still positive. She is a bit of a drama queen in the NICU and has made friends (like her mom) with many people there. Sometimes, it seems she will alarm to just get attention if the nurses are helping with some other baby! Ava will even smile when they come back after she has done this. She has daddy wrapped around her little fingers too. We read her a book during Linda's Kangaroo care (skin to skin holding) yesterday. It was a very special moment for us. One of the nurses knitted little booties for her. We brought in cookies for everyone for her 1 week birthday on Tuesday.

Chemo time!
We had an appointment with the chemo doc today. We are now completing 4 rounds of AC chemo instead of 5 (4 is the normal regimen - we were doing 5 to help with delivery timing and figured we'd give the cancer "one for the road" too!). Some have asked if we will be more aggressive now that Cricket has hopped out of her nest. Actually, the chemo plan we were on was already very aggressive and so we will stick with it. It would have been the same basic plan whether Linda was pregnant or not. However, we will only have 4 rounds of AC instead of 5. Then, the Taxol will start in two weeks.

Good news today: The doctor couldn't feel a perceptible lump anymore!! He said there may be some thickening still there but the lump has reduced substantially already! Doing the chemo before surgery has the advantage of seeing how the cancer reacts to the chemo (since there is a lump to measure). It is very comforting to know that it is working well on Linda's tumor.

Linda had Round 4 of AC chemo today. She said the toughest part for her was the mental aspect of being away from Ava since last night (it feels far away when we are in Corvallis). But, we called a couple times to talk to the nurses there and they give us updates. Linda is also now quite anemic and is showing symptoms of this (being cold sometimes and more fatigue than normal - which is hard to notice on Linda!). The worsening of the anemia is from the blood loss from her c-section (she is also still sore from that but improving every day). Linda will take iron supplements (she has been since the c-section but we need to continue) and they said she could get a blood transfusion if needed to help her. Hopefully the iron will do the trick! We have been on the go so much and not sleeping as much as we should, so that probably isn't helping either.

The Eugene Guest House has been great - we stayed there about 3 nights this week. There is a fraternity across from it so maybe we'll crash a party there when we're feeling better! We are home tonight then back in Eugene tomorrow.

Thank you so much for everyone's kind words, thoughts, prayers for our daughter's birth. Everyone has been so wonderful to us (friends, relatives, doctors, nurses, etc) and it helps us immensely!

Rob.

It's CRICKET!!!

Due to popular demand, I'm sharing a couple photos of our little princess, Ava (aka Cricket).

Ava had a pretty good day today. She went from the full CPAP to the "nasal cannula" (you'll see in the pix, she goes from the elephant trunk apparatus to a small tube across her nose). You can actually see her face! She also finished her sunbathing (UV) to reduce jaundice for now (no more batman mask on her eyes), and feeding went slightly up (still on IVs for most her nutrition). Yesterday she got a PICC (IV mainline into a major artery - holds up well instead of needing repeated IV pokes into the arm) - the PICC is a tricky procedure - they didn't get it in a few days ago when they tried but got it this time. Yea! With all these small steps, they always remind us that most babies move backward again at times. She is still having some Apneas/Bradys but not as bad today - these are likely to go on for a long time still. However, we celebrate these positive steps for today!

Okay, onto the pictures. Here she is with her Papa for some "Kangaroo" time. She has her CPAP on in this one so it's hard to see her face but you can see her size (click on the photo to enlarge).

Here she is with Kangaroo time with Mommy (Ava is behind the blanket). You can almost see (other than the hat!) that Linda is just about hairless now but just as beautiful as always. Since babies Ava's age can't regulate their own temperature, we need to be very vigilant to keep her warm. Daddy's bony chest got her a little too much off-temp the other day so we're more on top of it now.

And finally.... here is our little sweetheart. She does have more hair than Mommy!

The preemie diaper is a bit big on her:

They discharged us from the hospital today which was tough since we're not a 5 minute walk from our little girl right now. We're back in Corvallis for the evening, and then back to Eugene in the morning. We already called the nurses and checked on Ava and will call again soon and probably again early in the morning. Good night Little Princess, we will see you tomorrow.

Rob.

Poops and Bradys: all part of Day 4 in the NICU

Things have been pretty good over the past 24 hours. Ava has improved somewhat which is nice to see. She is taking more milk now (up to 1cc every 3 hours) and had a monstrous poop (for a 2lb little girl, anyway). It was so big the nurse saved it for us. I took a picture but won't share it for you in case anyone is eating lunch while reading this.

Mom had almost an hour of Kangaroo time (skin on skin) and Ava was great during this time. Her oxygen saturation was up and she was very relaxed the whole time. She seemed to like it and made nursing motions with her mouth at times too.

She has still been having her Brady incidents (no breathing followed by severe heart drop) but they have been slightly less frequent. I am able to spot them now before the alarm sounds sometimes and a couple times I rubbed her back or patted her bottom to stimulate her back into breathing with the nurses watching to make sure it worked. The nurses have been helping to show us the right way to do this. Sometimes she will do these when we are leaving which is sad - that she may somehow know what we tell her or sense when we are there or not.

Her CPAP oxygen level has been on "room air" (no additional oxygen) for much of the past 12 hours. Hopefully she continues with this but it is common to go backwards at times so we'll just see how she feels and roll with it.

I changed her diaper a couple times (only my second and third diaper changes in my lifetime), and also have been helping with her measurements such as temperature. Linda is looking forward to helping with these when she is feeling better.

The nurses are getting attached to our little Ava (who wouldn't!) and several have already "adopted" her by asking to be her primary on their work days/nights. Two of the nurses gave us some onesies as a birth gift which was very thoughtful and sweet. The NICU nurses here are amazing and I can't say enough how great it is to have them.

Linda had a more painful day - trying to slow down on the pain meds was a little early. She is doing well, but we'll stay here until Sunday since her c-section was rough and she has the "extenuating circumstances". One of the NICU nurses stopped by to talk with her and shared her breast cancer story (she is a 2 year survivor) and has a full head of hair! You saw from our blog at Ava's 6 month date that Linda still had some hair - it is almost all gone now. We haven't been home since Monday when we left and our lives took this curious twist!

I'm going to go check on my little girl again and tell her goodnight - this has become my routine.

Rob.

Ava Darlene Blair (AKA "Cricket")

Little Cricket has landed and as such she deserved a name befitting her beauty and strength. We chose Ava Darlene Blair but it is okay if many of you still choose to call her Cricket since I'm sure the nickname will stick for awhile! Her middle name of Darlene is also Mommy's middle name. She has been with Mommy for the past 6 months helping us stay strong and optimistic through Mommy's cancer. So, now, Little Cricket, we share Mommy's strength, resiliance, positive attitude, and shining beauty with you through your middle name. We Love You!

Bad Brady!
Little Ava has decided she wants us to learn some more patience with her and reminded us she is the one in charge of her schedule here. She has been having "typical" 27 week symptoms such as bradycardias ("Bradys") and apneas. These are not fun to see as her alarms go off Red and she either stops breathing for a bit or her heart rate drops below what it needs to be, or both happen (heart rate drop triggered by lack of breathing). The nurses here tell us that although they are not welcome, these are common for her age and they are okay as long as they aren't happening too often or for too long. Occasionally, the nurse needs to gently rub her to stimulate her into breathing again. Ava may have many weeks like this, or she may stop having them in a shorter time. It's very common for babies this age, and sometimes they move forward, then back again, even back to intubation. So, once again, we are reminded to be patient and that she will be here for awhile!

She has been pooping and drinking small amounts of breast milk, so that is good. Her lungs and heart both sound good for now. Daddy got some Kangaroo time this morning and she cuddled into my chest - which was amazing as you can imagine. She even pulled out a chest hair to take with her back into her chamber! Next time I'm shaving my chest.... We are very thankful she is doing so well given everything she has gone through!

Linda has been recovering well. Her incision is longer than a normal c-section due to the delivery issues but is healing nicely. Her blood counts are good but she's still slightly anemic (so gets some iron pills here). The nurses have all been taking great care of us - this is a great hospital (only one month old)! We should be here until Saturday or Sunday which is nice since we get more Cricket-time.

I visited the hospital's "Guest House" today in Eugene. The cost is offset substantially by the Lions and Children's Miracle Network and we will probably be staying there for awhile to be closer to our little girl.

Rob.

What's in a name?

"Cricket" has been quite popular here and one of the night nurses made her a nice name banner with her hand prints on it. It says "C R I C K E T" on it. The main NICU monitor says Cricket Blair on it. We have had many people tell us they love the name Cricket for her! How funny, that this silly nickname I gave my daughter when I saw her kicking her legs on an ultrasound, before I even knew it was a "she" would become her nickname.

The birth certificate lady has been by the room a couple times, asking us to fill out the paperwork with Cricket's name. We weren't ready for the name yet - we had ten possibilities on the board still! The certificate lady did say we could leave it blank for now, and have up to six months to give a name. But, we think she deserves her name now. We told the birth certificate lady to come back on Thursday for the unveiling of her name. So, tomorrow we will spring the news to everyone what our little girl is to be called!

"Cricket" is doing better since Day 1. Late on Day 1 she moved off the full respirator (intubation down her throat) to a CPAP machine (like people get to prevent sleep apnea). She has some heavy tubing coming from her nose now. If she continues to improve, she will get nose prongs (less obtrusive) sometime. Although she is improving she does still have respiratory issues, jaundice, and some other stuff "normal" for a 27 week premature baby. But, we are very encouraged and thankful for her progress so far.

The cool thing about extubating her (no more oxygen down the windpipe) is she can CRY! So, we heard our daughter crying for the first time last night. It is beautiful to our ears and so lovely to hear. A few other milestones: She got an ounce of (donated) breast milk, she only has to have the blood test for "gas" (blood oxygenation) once per day (it's a heel prick and she was getting them every few hours), and she moved into a fancy new "box" (now a fully enclosed incubator). Two more notables: 1) She POOPED! (okay, it was like a small ball of tar but I guess that's good news) and 2) She got to be held by her mommy! Linda was able to "Kangaroo" Cricket for awhile - skin to skin contact. She nuzzled right in, quieted down, and put her little hands on mommy's chest. Okay, I can admit it was a teary moment for all.

Linda is doing well. She had to have a tougher c-section than normal, since our little princess (Cricket) got stuck on a fibroid coming out and required some "Plan B" cuts in the process. Cricket got some bruising from the extra force and took longer to get going after delivery and Mom got some extra cuts she hadn't planned for. So, Linda is having some normal pain but has walked a bit today. Her counts (from chemo) are fine so far. Obviously, we won't have chemo tomorrow as originally scheduled. We are working on the "new" plan but it may be a one week delay.

The nurses tell us that preemies often take some steps forward, then a couple back. So, we shouldn't have inflated expectations for Little Cricket at this point. Our little girl has already made it perfectly clear who is running the show! She will decide when she's ready for the next steps. But, we are enjoying sharing our love and strength and support with her as she makes this journey. We certainly have been appreciating all of this from our friends and family as well.

Rob.

She's Here!!!

Well, our little Cricket has landed!

Not one day after I was singing her accolades of how she made the 6 month mark, she decided that she wanted to come out and see the world.

I'll give the short version now and update it later with more detail as I'm writing this from Riverbend in Eugene.

Linda's water broke about 6pm Monday and so we made some quick doctor calls, left dinner on the stove, and drove to the Corvallis hospital. Linda started having contractions there. Once they stabilized Linda somewhat, and gave her some steroids as a last minute help for Cricket's still immature lungs, Linda got transported in the EMT Ambulance to Eugene with full lights, high speed, and running red lights, etc. I of course, observed all laws to get there myself, with Brian (Linda's son) as co-pilot.

--> I'll update the Eugene part of the journey later!!!

Cricket was delivered emergency c-section at 3:27am. She is 27 weeks along (born on 9/9/08) which is a tough time for infants but Eugene has a top notch Neonatal ICU and Cricket is already one of the most popular girls in her block. She is on oxygen but otherwise doing well (for a 27 week old baby)! She was 2 lbs, 2.5 ounces and 14 inches long. I guess that's pretty good for a 27 week old. Everyone tells us the premature girls do better than the boys. It is interesting!

Mom is recovering from the c-section well and little Cricket is under 24 hour supervision. She has wires and tubes all over her to help her along. Her lung development has been improving already and we are praying that will continue!

I'm going on 36+ hours without sleep but feeling great and so happy we could bring our little girl safely into the world. I have been visiting her a couple times per shift so far and she wraps her little hand around my finger. She will be in the NICU for nearly 2 months they say. The nurses and staff here are outstanding and we are again so blessed to have such great support from everyone!

More later,

Rob.

6 months/27 weeks

Linda is doing great, Cricket is 6 months today and 27 weeks tomorrow! Linda's heartburn has mostly subsided and she is feeling pretty good. This is usually the nice time for her, before the next round of chemo. She is a bit more tired than normal but it is good she is getting some rest. We have been enjoying Cricket's kicks and rolls - she continues to be very active. We had an appointment with the high risk OB in Eugene last week and it went well. Cricket is right on track for her growth and they tell us she is about 2 pounds and probably over 12 inches now. We're determining the exact due date but still looks to be around mid-October.

One of our cats (Ellie, age 17) has been giving Linda a lot of attention since her diagnosis. When Linda got back from chemo last time, Ellie came right over and put her paw right where Linda's tumor is. The photo below looks like Ellie is giving Linda some kitty healing power. You can also see Linda's remaining hair - more and more of it falls out each week but she's still got some on top.





This week we have an appointment with the medical oncologist and chemo #4 on Thursday. We're planning on 5 rounds of this type of chemo so we're getting near the end of the AC chemo (next is delivery, then Taxol chemo).

Rob.

Slight detour but all is okay

Due to some symptoms Linda was having, the on-call OB advised her to check into Labor and Delivery last night for some monitoring. The concern was with pre-term labor. Cricket is 26 weeks today! However, she is not ready to leave her happy home just yet!

Linda was checked to make sure she didn't have any contractions and the baby was monitored (she tried to hide from the heartbeat sensor again but they finally found her). Other than being slightly dehydrated (probably from the chemo) Linda was fine. They also called in an ultrasound tech to check her cervix (looked great - no signs of early delivery) and the baby. He was nice enough to take some pictures for us and even let us take a DVD of some of the movies/photos!

After about 4 hours they let us go home, and we were all reassured that everything is fine for now, but we are supposed to watch for any premature labor indications.

Linda's heartburn is finally getting back to manageable - we are told some of the anti-nausea meds may make it worse and Linda stops those 2 days after chemo so it usually improves to where she can eat/drink more regularly now.

Here are some pictures/movies of our little sweatheart from the nice ultrasound tech. It's Daddy's turn to overdose you with photos and video!!!

First is Cricket's heartbeat (~150bpm):

Here is a 4D of her sucking on her fingers. The 4d images sometimes get some artifacts that make them look funny but overall I like this one:

Here is a cute foot picture:

And finally in this last shot she puts her hand in front of her face to tell us she's done showing off:

Rob.