Felicity is here!!

Felicity is making a guest appearance on Asher's blog! Actually, Felicity made a surprise appearance by being born at 36 weeks, exactly 3 weeks before her scheduled c-section.

After thinking I was in labor for about a day and checking in the with doctors a few times it was finally decided that Felicity wanted to be born. On 4-4-14 at 10:05pm she arrived via repeat c-section weighing in at 5lbs 9oz. She cried immediately but was breathing fast, so she was taken to the special care nursery. I was able to give her a quick kiss before they took her away. Dave was able to follow her pretty quickly but I had to wait for 2 hours until I was out of my recovery period to see her. When I finally got to her she was in an oxygen hood and was breathing really fast but she still looked perfect.

For close to 2 days we were not able to hold her, just touch her little bum and talk to her. She continued to breath fast and didn't really tolerate any oxygen reductions in the hood. They tried a nasal cannula and finally ended up putting her on the CPap machine. This machine pushes airflow into the lungs to assist breathing. She seemed to do well with the CPap. On Sunday evening she began to get worse, they had to turn up the oxygen and called the NICU doctor who works at Children's hospital. After a chest x-ray was performed they diagnosed her with a pneumothorax (basically a collapsed lung from the pressure of the CPap). We were terrified. The transport team from CCHMC was called and a team of medical personnel including another NICU doctor showed up. They gave her a breathing tube and then inserted a needle into her chest to release the air trapped between hr chest wall and lung. She was stable, and we were transferred to the CCHMC NICU. Dave and I agreed seeing her like was the most terrifying thing we had ever seen. She was so helpless. Luckily, my amazing OB, Dr. Fleming, quickly showed up and made sure I was discharged from the hospital so I could go with her. Seriously, he's the best. He got to the hospital before Dave did (because Dave was arranging childcare for the other kids) and he hugged me and told me she would be okay. He didn't leave me again until I was with Dave and getting some more support.

By the time Dave and I got to Children's she was in her little isolet, intubated. Now, this may seem scary but she looked better than she had in 2 days. Her nurses were so nice and Felicity was just relaxed and breathing easy (well, the machine was breathing for her). The NICU doctor talked to us and said the pneumothorax was resolved and the breathing tube would only be in for about 12 hours. I thought I would still be waiting a while to hold her, but I was wrong. As soon as the nurses realized I hadn't held her they got me comfy in a recliner and put her on my chest. I got to snuggle her for such a long time. That was the best feeling ever (ever!). Then they gave her a dose of a drug to help expand her lungs and as promised, the tube came out. She really looked like a different baby, so calm and breathing easy with just a little help from a nasal cannula.

In the last few days she has breathed well enough to get rid of her oxygen, tolerated feeds enough to allow them to discontinue her IV fluids and kept her body temperature high enough to turn off the warmer. NOW she just needs to nurse well enough to gain weight and not need to take any breast milk through her feeding tube. I think she is well on her way since she hasn't needed the tube since early this morning. Hopefully in the next few days they feel comfortable with letting us go home since she is now coordinated enough to nurse well.

Now, for the pistures <3 Thank you for all the prayers!!!



Daddy's first time holding the little lady

First family picture this morning

Still doing well!

Asher never ceases to amaze us. We are inpatient for our 3rd round of methotrexate, which means we will be here for about 4 days and he still hasn't shown any side effects from the chemo. Actually, I am pretty sure he doesn't mind being in the hospital at all. He gets to watch movies, create fun crafts and play in the playroom. We also had movie night for my first viewing of Frozen. Charlotte and Dave usually come up in the evenings to hang out and she gets to enjoy some playroom time as well. Oh, and today Amelia and Alyssa came to visit.

Even though this phase of treatment has lots of inpatient visits, the type of chemo he is being given doesn't make his immunity too low. I am still freaked out to let him be in public but we have ventured out to the park and to visit Daddy at work to take him to lunch in Newport in the last few weeks. Asher has really enjoyed it. I mean, really enjoyed it. Of course he fell at the park and I freaked, until I saw him stand up and just keep going. It's easy to forget that he is still just a 3 year old, and he will most certainly be falling down. We all ate at Fridays for dinner one night too (never mind the fact I looked like a crazy lady sanitizing the table before he sat down). So, for now, I will try to relax and loosen my grip a bit. Soon enough we will be in our last big phase of treatment before maintenance and his numbers will be low again. If everything stays on track we will be in maintenance starting June 23rd. Just in time for summer and Father's Day!

And finally, just a reminder that baby #3, Miss Felicity, will be here in 29 days! We are all very excited. I just hope she is ready for this crazy family, because we are ready to meet her!

Craft time in the playroom

Asher helping the nurse out

Playing with Papa Rick (and his glasses)

Daddy lunch date

4 Day Stay

Yesterday we arrived at CCHMC at 6:30am for Asher's lumbar puncture procedure and then to be admitted for the next 4 days. The whole day went so smoothly I could hardly believe it. Usually everything runs on hospital time...which means it takes forever. Getting an inpatient room can be a struggle because they are always crowded and you basically have to wait for another patient to be discharged. Last time we waiting until 7pm! Thank you, thank you, yesterday we were in our room by 10:30am AND we got a room on A5 Central which is the nicest area an has lots of fun things for Asher to do.

Asher started high dose methotrexate yesterday afternoon and it has to run through his central line for 24 hours. As of this moment we are almost to the 24 hour mark. It's a lovely shade of yellow and pretty much looks like he is dragging around a bag of Mountain Dew. Now, the trick is to get his body to clear it out quickly so we can go home. He is on constant fluids and they will test his urine until it comes back clear and then we will be on our way. It may take until tomorrow, or we could be here until Thursday. I like to think he will be an overachiever and get us out tomorrow, but we'll see. For now he is in a good mood and having fun making trips to the play room. Last night he was THRILLED to have Dady in the playroom to play Mario with him. He also painted a few crafts. Tonight we will get a visit from Charlotte and I am sure they will both find something fun to do.

Oh, and an interesting little fact. Yesterday started the countdown to his very final treatment. He will begin less intensive treatment this summer but everything will be done 2 years from yesterday. So, mark your calendars...Asher will DONE on February 24th, 2016. Yay!

Thank you for all the prayers and keep it up. They are working!

Playroom time!

That big IV pole doesn't slow him down much

Riding through the halls with Daddy

Finally asleep with his best buddy Asher Bear <3

Thank you for the prayers!

I need to start by thanking everyone for the continued prayers. I am amazed and a little shocked to share that Asher had NO PAIN after getting his last dose of Vincristine (the yucky chemo drug that previously caused the leg pain). He was dosed with it Monday of last week and I watched him closely for limping and asked him how he felt. With each passing day I was more and more confident that he was going to be fine. BUT, we need to keep praying because he got more of this chemo today and he will get lots more in the coming weeks. I would love nothing more than to see him remain pain free. He has been a little tired, taking some long afternoon naps and we had one vomiting episode (I think because he didn't get his nausea meds fast enough before breakfast one day. 90% of the time he is a crazy, active 3 year old.

This Sunday we will do home health labs and find out if his numbers are okay to move to his next phase of therapy called Delayed Intensification. Sounds fun, right? It will require a few 4 day stays in the hospital but I am pretty sure he will be getting drugs that he has already had before just at higher doses? I need to ask a few more questions. In any case, if he checks out okay on Sunday we will be inpatient Mon-Thurs. Wish us luck!!

Here are a few pictures from the last week.

Killing time at Asher's clinic visit

Benadryl nap



Reading <3



Doing his mouth washes, AKA "squishers", from shot glasses....

January Update

Hello! Thankfully we have had an uneventful couple of weeks. Asher was admitted for one night almost 2 weeks ago for the start of his most recent chemo phase. We had to stay in the hospital for the first part of the chemo treatment because Asher had to be well hydrated via IV fluids. The particular type of drug he was given is toxic to the bladder, so they want to make sure he cleared it from his system as quickly as possible. They also gave him a blood tranfusion before we left because his hemoglobin levels were borderline. Like always, he handled it all well and we were discharged without incident. Since then we have done more home chemo and tested his immunity levels multiple times. At this point they are low, and expected to stay low for a few weeks. I keep waiting for the day that his ANC count is actually zero. But so far he has proven us all wrong and held steady around 280. 280 is nothing to write home about...he still can't go in public...but hey, it's not ZERO!

A low ANC count does not typically cause any side effects, so Asher feels fine. The drawback is that he is very susceptible to getting an infection/fever. Obviously we are being extra careful because we have 1 hour to stop what we are doing and get to the hospital if his temperature gets to 100.4.

So, we are quarantined to home about 95% of the time. This forces us to be creative with what to do. I have to admit, I need to start using Pinterest for some more ideas. I am very lucky that Charlotte and Asher are best buddies. They keep each other amused most of the time. For at least one hour every day they put on crazy dress up clothes and run around the house in some sort of imaginary play world they have made up. Sometimes they are "swimming" and sometimes they are Mario and Luigi saving the princess. Every time I stop to listen to their chatter I chuckle, they are very elaborate and creative with their games! We also watch movies, play Wii, sing karaoke and dance. Okay, well, I don't sing and dance with them usually - but Dave certainly does.

Again, thank you for the continued prayers. Especially keep Asher in your prayers on Monday and in the following weeks because he will get several more doses of the drug that caused him leg pain and limping. I hope it doesn't continue to affect him that way even though I have been assured there are pain medications available to help if needed. I just hate to see him taking one more drug.

Passing the time. Watching movies Snacking Playing dress-up Karaoke and dancing Some very serious Mario playing...and Charlotte wearing her dance recital costume(why not?)

Happy New Year!

Merry Christmas and Happy New Year! We had a busy December and January is shaping up the same way. We were lucky to spend the Christmas season with all of our family. My family was in town the week before Christmas. Charlotte and Asher were spoiled like crazy by Grandma, Mr. Marc, and Aunt Alyssa. Christmas Eve was spent with Grandma and Grandpa Cooley, Uncle Daniel, Aunt Pam and Uncle Mark. Christmas day we stayed home and Papa Rick came to visit. We missed the big Cooley Christmas this year to make sure we didn’t expose Asher to too many germs. It was kind of a bummer, BUT we cooked a big meal and really did enjoy the downtime. I even cooked my first turkey (it was delicious in case you were wondering).

Charlotte posing in front of all the presents from Grandma and Mr. Marc

Decorating cookies

Almost time to open presents!

Charlotte being very excited about her new sparkly shoes

Baby Felicity's very first outfit

The aftermath



Christmas Morning The big presents. A hockey set and a karaoke machine <3 Power tool set from Papa Rick

We had tentatively planned on moving in the spring, but have decided to stay put for now. Having a new baby and spending time in the hospital would keep us plenty busy. So it looks like we will be in Anderson for a while longer--- I can’t complain except for we have to figure out how to make one more little person fit. The last few weeks were also hectic with getting new carpet and having the upstairs painted. Thank you Mom and Dad! The house looks so fresh. Charlotte and Asher will be sharing a room when baby Felicity arrives and have brand new bunk beds from Ikea. They are pretty thrilled and haven’t missed a night sleeping in them, even though Asher’s bed is still set up in his room. I can’t wait to share some pictures once we have everything in place.

Asher has continued to do very well with his treatment. Charlotte managed to get a wicked cold and ended up being tested for whooping cough, putting all of us on high alert. Thankfully the test came back negative but that didn’t stop Asher from catching her cold. It’s “okay” if Asher gets a cold, but if he gets a fever he is guaranteed at least a night in the hospital with antibiotics to rule out an infection. I was dreading the possibility. He breezed through the cold with no fever and they finally both sound better.

Asher’s last round of chemo was administered at home. So, guess who became a chemo nurse? We had the option to have a home care nurse come every day or learn to do it on our own, so we did. It was quite intimidating but after some close instruction from the nurses and written instructions I did just fine. On Christmas Day Asher sat in Dave’s lap and we all sang carols while he got his treatment. Thank you to Dave for the lovely shots of me in my chemo hazmat gear.

Next week we will be admitted for one night to start another cycle of chemo and I pray that he continues to handle it as well as he has been. Although just yesterday I think we saw the start of a chemo side effect when Asher started limping. One of the chemo drugs can cause neuropathy (nerve pain/damage) and clumsy walking called “drop foot”. He really is walking with a wobbly gate so the doctors will keep a close eye on him and he may have to start physical therapy. I am hoping that it will just resolve itself…but I really have no idea what the chances of that are. Luckily it doesn’t seem to bother him much, just slows him down a little.

Again, we want to thank everyone for their continued prayers. It means a lot to us.