Merry Christmas

Every year I relish doing a Christmas card. I love taking the perfect picture, picking out the design, even stamping and addressing the envelopes. And I love getting them in return in the mail. But no cards this year! We've been a bit busy of course and so the time for cards came and went. So here's the candids from our Christmas. It started with Hubert grilling in the snow for Nana. He promised her elk kabobs before she left and this picture just cracks me up. I told him our neighbors are really going to know we've lost it now. Then, before Christmas Aunt Amy came for a visit and always brings lots of cheer. She brings out the "weirdness" in our kids, and of course they love it. So she dressed Caleb in an elf hat and elf socks and he was running around the house saying, "Ho Ho Ho Merry Christmas in the neighborhood" (think rap) The kids loved it. Then for Christmas eve we braved the snow and drove to Lana and Kent's house. We had a lovely Christmas story reenactment with of course I and Hubert being Joseph and Mary and little Gracie standing in for baby Jesus. Gotta love Grant as a wise man with a princess crown on. The two cutest angels though were Kenzie and Kaylee. The excitement began though when we pulled in to their "driveway" which consists of the biggest hill I've ever seen. So of course, given the snow no one could make it up the hill. So Kent came down in Big Red and towed everyone up the hill. Kenzie said "Hip Hip Hurray for Kent!" Kiley and Grant didn't have such an exciting experience and we're sorry their car didn't have so much fun going up the hill. It was a Pet Shops Christmas for Kenzie and although no one got a Wii, we had fun playing the Wii. Whatever a Wii is. Gracie is doing so well. She eats like a horse! She is just eating and sleeping and being her sweet self. She seems like such a normal baby. It's odd now to think she was ever sick. How quickly we forget. We just pray her blood pressures continue to improve and the tumor is gone for good. She did fine away from home for Christmas and we were careful to keep her away from anyone sick. She has sure stolen our hearts!

Gracie at Home

Nana left today. I knew we would run her ragged. I think she just had enough fun with us, but it was nice to have her here for so long. Grace is doing so well. She is so content and is sleeping a ton now that there are no bells and whistles to keep her awake. She has gained 3 ounces in 3 days. She eats like a horse. We went to the hospital yesterday in the snow to get her blood pressure checked. It was a smidge higher than they wanted so Dr. Aluzri went up on her med dose. When the nurses laid her on the warmer to check her pressure she just smiled and grinned. I think being back in the hospital was familiar territory for her. The nurses just crowded around her. They remembered her from the first night she was born. Grace says 'hi' to all our friends at OHSU!

As far as visitors go, you are welcome as long as you are 100% healthy! Grace is still considered immunosuppressed from the chemotherapy until after the first of the year, so we are going to be cautious. We probably don't want kids around her yet either and we're not sure if we will be going to church yet. Just giving everyone the heads up so you won't be offended when we ask you to wash your hands! ha.

On Our Way......Home!

In about 4 hours, Gracie and I will be heading over the mountain and through the snow! After all this time wishing to be gone, surprisingly it is a little difficult to leave. We have made so many neat friends both at Ronald McDonald and at the hospital that saying goodbye today will be a little bittersweet. But we've already got followup appointments made so we can look forward to coming back and seeing our friends here. I keep having this vision in my head of all of us - me, the hubby, Twinkle Toes, and Sweet Boy just holding hands and skipping around Grace. Somehow, I think that she is going to be the center of our family for quite a while as she has been for the last few months. So here is a picture of my Santa Baby. I made this hat yesterday in honor of her going home. I never thought when I made that first pumpkin hat that I would be making a Christmas hat too! It's time to be home....See you soon.

PS....We made it! We're home.

Two days from her 3-month Birthday!

This is what I woke up to this morning. Yep, it's snowing in PORTLAND. I guess it is snowing everywhere, from what I hear. Just in time for us to go home! Today, the doctors said...Tuesday! So they are busy tidying up loose ends to get us ready for discharge. Monday I'm sure will be a crazy day, but the weekend is still pretty calm around here. We might get to take her PICC line out today and maybe give her a bath without any tubes or wires. Wouldn't that be nice. Grace's pressures (BP's) are still a bit too high but they are under control on some oral medication, so it's looking good for us to get out of here. Tuesday can't come soon enough for me. I will be counting the minutes.........until Tuesday. My plan will be to have my room all clean Monday night so I can head over the pass mid-day on Tuesday. I do have studded tires so we should be fine. Thank you again for everyone's emails, comments, prayers, etc. I love hearing from everyone. We have made so many new friends, gotten reaquainted with old friends, and been lifted up so much by friends and family, thank you just isn't enough. I might be a bit busy for awhile to blog when I get home, but we'll see. Life is getting ready to change again....

Little Miracles.....Along the Way

-It's a miracle I didn't give up nursing. I came so close several times but I am so glad I didn't because Grace LOVES to nurse and the doctors say it is so much easier for her to digest. One thing at least we don't have to worry about are eating problems. It's such a blessing that she is a good eater. My kids have never been good eaters and I count it a huge blessing because I know it has helped her through the chemotherapy and the surgeries, being so big and strong. The nurses joke with me that eating is her favorite thing to do!

-Less than a month before Grace was born I came across an Airlife brochure and without knowing anything was wrong with our pregnancy, I just had the "feeling" that we needed to have that. So even though I hated spending more money, I put down $50 for an Airlife membership. Money WELL spent! My only regret? Is that I didn't sign up for the ambulance part too...

-It's a miracle Grace has no lung complications. I have since found out that babies who are born with pulmonary hypertension often have to be on oxygen for life. Grace, however, carries no long-lasting complications from the initial trauma of her lungs not expanding. It's also a miracle that her good kidney still works, her eyesight is okay, and her brain is okay from all of the high blood pressures. Also, because they removed part of her vena cava, Grace may always have problems with swelling in her feet because of the blood flow, but so far her feet look great. I have prayed all along that Heavenly Father would protect her body as we fought the tumor.

-It's a miracle that my Mom could be with us through the holidays thanks to the charity of someone that has never even met my Mom. That is such a blessing to our hearts as well as temporally just having her here.

-I found out that the surgeon who did Grace's surgery who apparently NEVER comes in on his days off, came in on his day off on a holiday weekend (Thanksgiving) just to discuss with us Grace's surgery. And not only did he do that, but he also spent all weekend, I am told, studying her films preparing for the surgery. What a different outcome from the first surgery when they initially told us that the surgery failed and we should take her home and make her comfortable. What a miracle!

My Little Insomniac..

Yeah, Grace isn't sleeping at all. She didn't sleep yesterDAY. Then, she didn't sleep yesterday NIGHT. And she didn't sleep much TODAY. She's a little confused. I think maybe it's the morphine withdrawal or something. Or maybe she's just making up for being out like a light for a week straight. We gave her some Adavant tonight though and she was sleeping when I left. They took her off her nicardipine drip at about 9:00 p.m. so hopefully she will get through the night and her blood pressures will be great. We'll see......

12/11/08

Well I suppose my readers need an update. I am starting to get passive aggressive. We are so close to coming home so I feel the need to start bugging them now. So I posed the question today about WHEN.....and they said it wouldn't be the weekend. When I mentioned Monday or Tuesday they didn't say NO, but that's all I really have right now. I was only a LITTLE upset when they put the feeding tube down her nose yesterday. For some reason, this particular nurse must have forgotten that Grace is nearly 3 months old. Holy cow. I think feeding is not a worry. So I spent all of today just nursing and she got full feeds, so hopefully this will convince those silly nurses that indeed we do NOT need a feeding tube. It was a new nurse to Grace and I guess she wasn't aware at what a great nurser Grace is. She is back to her old self in that respect. I miss our regular nurses - we have all new ones this week. They are too used to preemies. They say they almost never have big babies like Grace. Most of the babies here go home when they reach 5 pounds. So basically the only thing keeping us here is ONE tube of IV nicardipine. Yeah, she's back on the blood pressure meds. Her blood pressures are still a little high, but they think that in time they will improve. Sometimes it takes the kidney a while before it realizes it doesn't have to work so hard. So the doctors just need to get her on some p.o. izradipine that we can go home on. So I am pushing for them to hurry up and get that done because Grace is all done with the fun. I mean Ronald McDonald is so nice, we have had so much attention from everyone here, but enough is enough. Can you tell I am getting impatient? I noticed today that Grace is starting to get rolls of skin now in her abdomen from where the tumor used to be. That is so nice to see. Grace was very peaceful today. She didn't cry really at all and she smiled a lot at me. She kind of laughs or coos now. The nurses wanted her to sleep but she didn't sleep at all today. Again, I think they are forgetting that she is nearly 3 months old and she just doesn't want to sleep anymore in the daytime. She is so bored with this place! Oh and I did get the word today from the doctors that Grace won't be having more chemotherapy. They just want to check her with an MRI in about 3 months and over the next year. Good news, I think!

A Big Day for Gracie....12/10/08

Today the doctors pretty much got rid of all Gracie's lines. They took her off all her IV narcotics - she is only getting p.o. stuff. They disconnected her IV nutrition, so now it's either the bottle or me. And they are going to disconnect the IV pressure medication, nicardipine, and put her on p.o. izradipine. And they took out her IJ line in her neck - it was a big, fat line that the surgeons put in. I am glad it is gone because it was bugging her a lot. So we are one step closer to coming home!

Turning the Corner....

The surgeon came in today to check on Grace. He is a man of few words. When we had our second big MRI after her 6th round of chemo, I am told he looked at the scan and said, "Argh" and walked out of the room. It wasn't what he wanted to see. So today, he looks at Grace and says, "It looks like she has turned the corner" and that was it.

I got the go ahead today to start nursing her. I have been trying all day but she hasn't been interested. Every time I have tried to nurse her she just cries and pushes away. So I have been thinking it is going to be awhile before we can get her back to full feeds. Anyways, I hung around though on the unit until late tonight, it's 11:00. She finally just turned bright red, starting gagging, and hocked up the biggest ball of mucous. Then, she proceeded to nurse like a champ again. Thank goodness she hasn't forgotten!

Candlelighters

We went to a Christmas party last week for an organization for kids with cancer. Our nice friends the Stancliff's were there and they took these great pictures. Mackenzie's eyes just LIT UP when Santa came through the door. That is probably the first time that has ever happened. She couldn't stop smiling as you can see. Santa had a present for each of the kids including Grace. When he called Grace's name I told Mackenzie to go get it for me. So she stood up and told Santa in her very loud voice, that Grace was her baby and she was in a special hospital in Tennessee. Well, she got most of it right. Santa, of course, was a smart aleck and commented that she was too young to have a baby.... Even Caleb sat on Santa's knee, in exchange for a toy of course. He looked pretty much like he did in this picture, not quite sure what to think, until some lady in the group yelled out how adorable he was and then he got the SLYEST grin I've ever seen on him. We didn't get that shot though.

Grace Today...12/9/08

Grace is looking so much better. Her breathing has improved a ton and she only has a slight strider and a little mucous. She smiled a lot at me today and she was awake alot of the day. She is crying a lot too. They are weaning her morphine and Verced and they started feeding her breastmilk. They are letting me nurse her too, but so far she hasn't really shown much interest in eating yet. Hopefully, in a few days she will feel better and want to eat.

I forgot to mention last time I was here that Ronald McDonald was SO GRATEFUL for all the donations from our church. They said their pantry was getting very low because donations are down this year, so they seemed thrilled to get the items. I think it helps me too, because they always seem eager to find me a room and they have been SO full lately, so thank you!

Right after Surgery

This was Grace a week ago right after her surgery. She should look considerably better now and I will post more pictures when I get some. They have extubated her so she is off the ventilator and they are starting to wean her off the narcotics. She has some edema in her lungs though, now, from being on the ventilator for so long, so she is having trouble breathing, so now they are giving her steroids. Just another bump in the long road. I am hoping she gets over that problem quickly though.

Letters to Santa

So we took Twinkle Toes to Macy's today so she could drop her letter off in Santa's mailbox. For every letter, Macy's will donate a dollar to the Make-a-Wish Foundation.

Grace before Surgery

These are pictures taken of Grace right before her surgery. The first picture was taken right before they wheeled her away to the surgery room. It was her first ride around the hospital that she was awake for, so she was very curious about all the movement. They put her in this tiny little incubator that she barely fit into. All morning she was giving us the most pitiful looks like she couldn't believe we weren't feeding her! They had to stop her feeds at 2 a.m. before the surgery, but as long as she was in my arms with her pacifier she was okay to fall asleep. The scrapbooked picture is a tag that one her nurses made for us to remind us what she looked like before the surgery. We have to get her back to all smiles.

So I am home right now while she is still intubated and on the narcotics. She is still pretty much just out of it, but she is doing well. It is just a long recovery given the extensive surgery she had. I am hoping soon, in the next couple of days, they will start to wean her off the morphine and take her off the ventilator. So I will be heading back to Portland in a few days and hopefully, I won't be back home WITHOUT her. That's my plan.

Update 12/2/08

It just occurred to me as I looked at all the hits on our site that maybe I should blog and let everyone know how Gracie is doing post surgery. Well, she is doing very well. The surgeon was concerned that she might have some internal bleeding, but we passed the critical 12-hour period with no signs of bleeding and now we are up to 24 hours so it's looking really good. Gracie is really stable and NOW we have the OPPOSITE problem - her blood pressures are TOO LOW! Isn't that great news! Actually, it is. We were expecting that and things are fine. They put her on some dopamine to bring them up but I think by tonight they will probably take her off of that completely and then I just have this feeling that her blood pressures will be JUST PERFECT! If you can imagine this, the tumor was taking up about 2/3 of her abdomen. It was roughly 5 X 7 cm! So now she has this HUGE space there. Anyways, one worry was how the good kidney would respond post surgery, if it would be injured at all, but she has been producing urine all day and things are looking good there. She is in a lot of pain I can tell. Her scar runs across her whole abdomen so I imagine it is very painful. That is probably her biggest issue right now but they have her on 2 drips of narcotics, so hopefully that keeps most of the pain at bay. I am still waiting on the "official" surgery report to come through. I get copies of everything and read all the reports. The informal word I am hearing is that they got good margins, but I don't know for sure if that is true or not. If they did get great surgical margins, I guess there is the chance she might not have to undergo more chemotherapy, but I haven't really heard the official word on that either. Soon I will start working on getting the doctors on board with my plan.....the "I want my Gracie home plan." Soon, very soon. I will post pictures soon too, but I can't find my camera cord so I have to hunt that down.

Amazing Grace

Oh how sweet the sound. They got the tumor out......It's 2:30 p.m. Grace has been in surgery for about 4.5-5.5 hours. Things went well. They took the bad kidney out, the tumor, and the adrenal gland. They were done at Noon, and started to close her up but the pathology report came back that there was still tumor, so they went back in and had to do a total resection on the vena cava, which means they took part of the vena cava out. There was quite a lot of blood loss but they had been giving her blood transfusions 2 days prior to surgery so she was all pink and filled up with extra blood before the surgery. She looks pretty good post surgery. She will still get more blood transfusions tonight.

The surgeon seemed well pleased with the surgery. It's by no means a cure, but it's a very good start. They seemed well pleased that they got as much as they could possibly get. Time will only tell if the tumor comes back. She will most certainly get postop chemotherapy and perhaps monthly MRI's for a year to monitor it. But I am pretty sure we can deal with that.

We are so happy.

My friend Shonda came this morning and passed the time with me until noon. The day has flown rather than dragged. The night nurse who is so in love with Grace was on the unit all night with her taking pictures and having the most fabulous fashion show with all the goodies she bought for her. So she armed me this morning with a bag of scrapbooking stuff of hers and a ton of photos of Gracie and sent me off to do my "homework" as she called it. And the day nurse, who is also terribly enamored with Grace, scrubbed in and went to surgery with her just so she could keep an eye on things.

From the Bible Dictionary, we know that the main idea of the word "GRACE" is "divine means of help or strength, given through the bounteous mercy and love of Jesus Christ."

We also read in the Bible dictionary that "The miracles of healing also show how the law of love is to deal with the actual facts of life. Miracles were and are a response to faith, and its best encouragement. They were never wrought without prayer, felt need, and faith."

We are so grateful for all of your prayers on behalf of Gracie. We got our miracle today.