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.

SURGERY....Monday 8:30 a.m.

The Next Step

Well, I'm sure most of you have guessed by now that we didn't get the news we had hoped for on Grace's MRI. The tumor is unchanged so it seems that the chemotherapy is not working for her. Friday was, of course, not a good day and I just didn't feel like blogging more bad news. Argh. Today was tumor board meeting and the surgeons and oncologists all met today to discuss Grace's case. There were about 20 doctors in the room I am told and they basically all came to the same consensus - the tumor must come out. Given her high blood pressures, they just don't see continuing on with treatment as a viable option. I was expecting that and I guess in some way I am relieved although scared. This week they are going to get an MRA which will outline the arteries and veins. They are going to review all of her films and make a plan on how to get the tumor out. This time around hopefully they will be a little more prepared for all of the blood loss that will likely occur. They are alerting the blood bank now. She will likely have to have several transfusions. They said all of the pediatric surgeons will be there - there are 3 of them along with a transplant surgeon. So it's a pretty big deal for such a tiny little person. Please pray for Grace! We don't know when the surgery will take place but it is likely going to be after Thanksgiving sometime next week. We'll report more when we know. Maybe we can bring our little girl home soon.

Hopefully this will cure her, but maybe it will only just buy her time. I don't really know. I'm sure it could go either way. You never imagine petitioning with Heavenly Father to just give you a little more time with your child. I think we could be happy though even if it just gave us time to know her.

As far as scheduling goes, we're planning on being in Portland this weekend, and then most likely I will be staying through the week.

Grace's favorite position

That doesn't apply....

to me. Those are words I used to say. You never really think much about cancer or Ronald McDonald or the strength required by those who face it, until you find yourself in that situation and then the world changes. Perspective shifts, and suddenly you are inspired and can relate and commiserate with those facing it. I find strength from a little girl about my Twinkle Toe's age who is facing cancer. Her name just happens to be Grace too. She is a special little girl. And sweet, sweet Lucy. She is just one of the cutest things ever and she is so lucky to have such an amazingly strong family. Today I ran into some of our friends here at the Ronald McDonald house who have been here for I don't how long. Maybe a year? Their son has a very rare brain tumor that doesn't carry a very positive prognosis and they have gotten some bad news today. His tumor is coming back. I ran into his Dad and was very heartbroken to hear that. On top of all that, Ronald McDonald is full so they can't get in. When I was at the Temple today, Brian's name was running through my head so I added him to the prayer roll. I am praying he gets a miracle too. I asked Brian's Mom how she did it, meaning how she handled everything so well. She told me that she didn't think about the future anymore. She just takes it one day at a time. I can totally relate to that. Being up here, going day to day, it's hard to think about the small details, the ins and outs, the plans. Life becomes very simple. And we take it one day at a time and it's impossible to make plans. So if I'm a little flaky, you know why! We'll know more on Friday and take things from there.

Week 6 Chemotherapy

So today I got up super early and actually went to the Temple. A friend of mine had suggested it to me awhile back and at the time, there was no way I could even get myself going in the morning much less make it to the Temple. But I have gotten myself to a better place now and so I decided since I was here, I better take advantage. It was a nice way to start the day and helped me remember the eternal perspective of things.

So this morning, quite early in fact, Grace had her 6th round of chemotherapy. I got to hold her the whole time and cuddle her. It only took about 15-30 minutes this time. She just gets the one round of vincristine and it's not so bad.

She gained 2 ounces yesterday. She weighs 10 lbs 2.3 oz.

So the plan for this week is that they want to re-image her on Friday, with another MRI and see where her tumor is. That's the so-called plan, but it's not for sure yet. The NICU docs need to pow-wow with the Hemoc docs, and nothing ever gets done fast around here. SO - Friday may or may not be a "big day for Gracie", as Albert likes to say. We'll see. So I am moving nowhere fast.

The good news is that my Mom is coming back! She's actually flying to Portland this Friday and she is going to stay through Christmas. Can you believe it? I can't. Actually, we have a complete stranger to thank for that. A lady we have never even met is flying my mom out here to be with us. Just another amazing blessing in this ordeal that we are so grateful for. So we are super excited to have her help and to steal her away for the holidays, which will be a bright spot for us all. So my angel friends will be off duty for awhile, although I may have to see if they will help me from time to time, just so we don't drive Nana completely insane. A month with my kids is likely to drive her over the edge, and we want her to want to come back and see us rather than running back to TN screaming.

Update 11/17

Thought I would update real quick before I forget. Grace is completely off the IV blood pressure medication. They are still adjusting her oral meds. The eye doctors came today and examined her and said her eyes were A-OKAY! What a relief. I was a little worried she was going to end up blind or something. It's never good when you're baby has a higher blood pressure than you, so that is always a concern. But all looks good. And I forgot to mention before that the MRI of her head is good too, no hemorhaging or bleeding, so THAT is good too. Her bottom is all healed up now. I think it's a good sign because her abdomen is a lot less distended now and so she is not constantly pooping anymore, so I think that has given her bottom a chance to heal. And her abdomen is not as tight and both sides aren't sticking out anymore. The right side stuck out from the tumor and the left side stuck out because all of her intestines were displaced, but that is SO much better now.

Shonda Rocks.........Grace at 2 Months

Blogroll 11/16

Grace is doing well. We are back into our hospital routine now. It took me about a day to adjust from taking care of a 2 and 4 year old to now back to the newborn schedule - constantly feeding, changing, rocking, etc. Grace is a lot of work. These nurses are spoiling her rotten. I have one nurse who loves her to , the night nurse, and she holds her all night long AND puts her on her tummy. See, when you have a constant heart and respiratory monitor on your chest in the hospital, you're allowed to do that. But they're like, you can't let her sleep on her belly when she goes home. So I'm thinking, okay, so they're training her to sleep on her belly and want to be held all night long. Oh boy. I'm in for it.

Grace gained 2 ounces yesterday. She is a champ. She eats so good and she seems to be taking all of her meds. They have her weaned off of her IV medication for the most part and they have her all on orals, so it's a little of a challenge to make sure she doesn't spit them up and swallows them well and so forth. One of her pressure meds I don't think tastes particularly well. I think her belly looks a ton better than when I was here just a week ago. To me, I think it is way better, but who knows. We won't know how the chemo is working until we get another MRI. On a positive note, our LDS doctor, Doug, is going the extra mile for Grace. He has been talking to some of the chief surgeons here and they are in turn talking with some specialists who are going to check out her films and see if there is anyone who might attempt a surgery on her given the difficulties with the tumor and her vessels. We will see but at least he has people talking.

So I got here on Saturday and Ronald MacDonald was all full. That is the first time that has ever happened. That was a sad day. I stayed up here on the unit but it was not fun lugging all my junk all over the hospital, waking up, not showering, etc. But thanks to Marnae's parents, I knew I wouldn't have to go through another night of that. Thank you! But, as it turned out, someone checked out of Ronald MacDonald today and yeah, I'm in!

Today my friend Shonda came and took some more pictures of Grace. She is so nice to do that. I know she is so busy but she took time out of her Sunday to come and take pictures for me. I know she stays booked up for months out and she has a life and family too, so I super thank her for doing that and I know she really wanted to do it given Grace's situation and the circumstances. I can't thank her enough. Shonda really is one of those people that is beautiful both on the inside and the out. But for now, you will just have to look at my pictures of Grace. She does look a little different than even a week ago.

Conversation 11/14

Me: "OKay guys, Mommy has to go back and be with Gracie for a few days, but I'll be back really soon."

Sweet Boy: "Mom I want you to be done with Gwacie in a few days."

Me: "Okay hon, I'll be back in a few days."

BlogRoll 11/13

Well, I'll soon be on the road again headed to see Gracie. I have been counting the days in my head until I can get back there. It's getting harder and harder to be away now that she is so big and alert. The day after I left the nurses said she was real fussy.

This week we have gotten a lot of really nice cards in the mail. One of these days I will get around to sending some thank you notes to all the nice people supporting us. I keep thinking if I wait, maybe one day we will have some better news to share.

Twinkle Toes got her preschool pictures done. For some reason she has something purple on her lips. No idea what that is. I am so grateful to my angel friends who just keep taking her to preschool when I am not around. I totally just leave it up to them about what to do with that and they just take care of it! Whew.

Grace got her 5th round of chemo this past Wednesday. The word today is that she tolerated it very well. She is a little anemic so they are supplementing her with iron. The feeding tube is gone! She is no longer needing it right now. But I'm sure it will be back at some point. This week she will be 2 MONTHS old. I realized that Grace & I have been mimicking each other all along. She is my little mini-me. When I was pregnant, my belly kept swelling up from excess amniotic fluid. Little did I know that her belly was swelling up too from the tumor. Then, I had to have a C-section so I have an abdominal scar and she had to have surgery so she has a scar too, although hers is much bigger than mine. On days when her blood pressure sky rockets from the tumor, boy you should see mine! My head about explodes when I see her monitors go up to 140/90! Is this ever going to end?

We have had several adoptive families who just take us in and treat us like family. We appreciate them SO much since we feel a little homeless sometimes being far from the Hubby's family and even farther from my own family. One of our very special friends sent us an email that I have been reading over and over because it has given me a lot of strength. So I am going to share but leave their names off. We have had so many supportive emails, cards, and comments and we do appreciate them all. It buoys me up every time I get one.

"You are still in our prayers and your names are put in the temple every time we go.
We are grateful that you both and Gracie keep hanging on with hope and faith.
Jodie, I really admire your strength and I have pondered a lot about what you are going through.
I have asked myself, why them?
Well, not everyone is as strong as you are. I know that our Heavenly Father will bless you through all this tribulation and that in the future you will look back and think of all the things He taught you through this trial. Please know that He is aware of you and your little one, but He knows best of the blessings that will come to you if you endure well.

I have thought of little Gracie and what a valiant spirit she must be to be fighting through all this ever since she was born. We do not know, but maybe she said, "Father, let me go through this ("Send me") instead of someone else. I know my parents will pull through no matter what."
Maybe if she could talk to you her words would be Ether's last words when he said, "Whether the Lord will that I be translated, or that I suffer the will of the Lord in the flesh, it mattereth not, if so be that I am saved in the kingdom of God." She knows where her heart is. She knows she is sealed to you and that she belongs to an eternal family, that is what really matters.

Thank you for sharing your thoughts and your faith with us. We have enjoyed the pictures of your little ones. They are so sweet!

Jodie, I am so glad you listened to your mom's advice and learned how to knit a hat for Gracie. She is so beautiful. I know she can feel your love.

We love you guys. Hang in there and please, please let us know if there is anything we can do for you."

Gracie Girl

Week 4 Chemotherapy

Just an update for today....that Grace is tolerating her 4th week of chemotherapy very well. The nurses said that she slept very well last night. I was a little worried because of the stronger drug that has been added on. It took about 3-4 hours last night just to administer all the drugs. They had to super hydrate her in order to protect the bladder from the one "hit me with your best shot" drug.

By the time this is all done, she will probably be sleeping all the way through the night, so I will probably miss out on all those midnight feedings.

Today, Grace seems her normal self. No real nausea that I can tell. She is a champion nurser, as the doctors are saying. Today she has just nursed and not had to have anything down the tube. So that is a relief that she is doing so well. We have cuddled a lot today and she seems very content to eat and then fall asleep in my arms. I kiss her a lot now. Before I was a little too afraid to get too close, but that is wearing off and we are able to snuggle more despite all the mass of spaghetti tubes attached to her. The one strong drug may compromise her immune system but we won't know for a week or so. Her nurse and I may give her a bath later on today.

Several of the nurses here have sort of endeared themselves to Grace. So that is nice that when I am gone they are giving her extra love. And the doctors too. The oncologists were teasing me that they sit around and discuss Grace quite a lot, so she is not forgotten even though they are at Doernbecher and she is one building over at OHSU in the NICU. It is so unusual for all of them to see a baby on chemotherapy - they all seem to be rooting hard for her.

Lullabyes

There is a volunteer that comes in to the NICU and plays the harp. She came in the other day and played the most beautiful, melodic music I have ever heard. It was so soothing and peaceful. She lulled Grace into quite a deep sleep. The picture of Grace in the pink outfit is right before she went in for her MRI so she was a little out of it on the morphine. The other picture is of her in her swing - yes, she has a swing too, can you believe it?

One in a Million

A million comes to mind a lot these days - like the million dollars the insurance company will pay before this is all over. Well, hopefully not but we'll see.

Being a scientist by training, I tend to like numbers, charts, graphs, statistics. With Caleb, I charted his growth at home and made detailed Excel graphs, always being bothered by the fact that he never even got on a "normal" growth chart for the typical baby. So, like the true scientist I am, I have searched the literature and read just about every article out there on mesoblastic nephroma.

So just to give you an idea of what we are dealing with, apparently, 8 in a MILLION children are born with congenital mesoblastic nephroma. There's nothing inherently genetic about it. It just happens - a random mutation. The majority of those 8 are the "classic" type. A much, much smaller percentage of the 8 will have the "atypical" or cellular variety of mesoblastic nephroma which is considered a more aggressive tumor, often recurs, and carries a poorer prognosis. So as you may have guessed, my little Gracie is quite the high achiever already - being quite possibly that ONE in a million being born with the cellular type of tumor. This explains why when I went online to find a support group for those with mesoblastic nephroma, there were no members in the group.

The chance of getting struck by lightning is also ~ ONE in a million or something like that. So I find it quite interesting that both my sister and I have had these one-in-a-million experiences - her losing a child to lightning.

Well, anyways, the results are in from today's MRI. The tumor is pretty much the same. It has shrunk just slightly but not enough to make it amenable to surgery. So tomorrow will be another chemo day for Grace. So, we have to look on the bright side of things. The bright side of things is that the tumor is not spreading. It looks to be fairly benign and slow growing and that is most likely the reason why it is not responding dramatically to the drugs. It has shrunk just a bit and to the oncologists, they say that it looks more organized, less "crazy" if you will, to use a very nonscientific term. So I think this is a good sign. They say these tumors often die from the center first and then react on the outside later and when they reorganize themselves, or become more compact so to say, they can often be pulled away more easily.

So the plan, I like to call it the "hit me with your best shot" plan - is that Grace will get the same drugs - vincristine and Actinomycin (in slightly higher doses) along with a new drug, cyclophosphamide. I like to call that one the "hit me with your best shot" drug. It will probably make her a little sicker, but only for a day or two.

Other good news - Grace is looking well. Her blood pressures seem to be under control, I think. She is stable, feeding well.

Patience, it's a virtue right? I guess they did say it might take 6-8 weeks. Let's hope it's 6. Let's hope dramatic changes are soon to come.

Not a Big Day for Gracie

So, just letting everyone know that they probably aren't going to get the MRI done today. Just scheduling difficulties with the sedation team so it is probably going to be tomorrow and we may not get the results back right away. Gracie is looking good though. This morning she took almost her full feeding breastfeeding. She prefers that over the bottle so it looks like I am on duty while I am here. She is a good eater, I think because she has such chubby cheeks, which is such an odd thing to see for me. She is quite strong too. She can almost hold her head up on her own a little and she pulled her feeding tube out twice already this morning. I put Nana's little bunny in her crib for this week and she has been staring at it as you can see. Maybe it will be her good luck bunny.

11/2/08

A Poem

Okay, I did not write this poem. I actually found it on someone else's blog with a similar but different story, but it really struck a cord with me...

Twas the night that you joined us...all eyes were on earth.
Awaiting with joy for a most special birth.
The angel's stood ready...for each need and care,
But all of them knew... that the Lord would be there,
And I labored on... and daddy was scared,
We waited...and wondered... and hoped we'd prepared.
We knew you were special...but so very sick,
Yet hope had grown in me... with every kick.
And soon it was time...into this world you came,
I heard a soft cry... then I called out your name....
And God held your hands...while the angels stood by,
Since I could not hold you...they hushed your soft cries.
One small angel looked to the father and smiled,
"Can you truly teach hope... through such a small child"?
"An infant so helpless...a baby so new...
"Oh please tell me Lord...is this what you will do"?
God looked from the angel...to the baby's sweet face,
"Through her my young charge... they will learn about grace".
"I penned this child's journey...quite a long time ago,
"And through her great courage...such true love will grow".
"Every hair on her head has been numbered you see.."
"It's my hope that through her... they will learn to see me.
"Oh my little one with a special heart..." "Great love will see you through.."
"See look that is your family..""They've been waiting for you.."
"I send you to their waiting arms...for a time we'll be apart.."
"But I'll always be with you...for I live within your heart.
And so we held you in our arms...And thanked our Lord above..
In you...we see the miracle,of His undying love.
So when it's Christmas morning, And I watch my children play,
I'll need no great reminders, For I see my gifts each day.

Room 201

I'm back in Portland now for the week. So my angel friends are back on duty this week if they can, taking care of my kiddos and keeping my husband in line (j/k). I got to spend all afternoon with Grace. The nurses have moved her back into a crib instead of a warmer and she has a fun little mobile that plays music and she really likes to watch it. They also put a CD player in her crib so she can rock out to lullabyes. After not having seen her for a week and a half my first impression was that she looks really good! Better than when I was here last. She is growing of course. She is about 9 pounds, 10 ounces. They have her on full breast milk now and they are giving it to her bolus instead of continuously. They give her what she wants from a bottle and then what she doesn't take goes down her nose through the feeding tube, so she gets it whether she wants it or not. Finally, I have a child that eats. So today she was wide awake when I got there. She just listened and listened as Mommy told her all about what has been going on and also about Mackenzie and Caleb on Halloween and how Caleb told me to "go bwing Gwacie home." Then she gave me the biggest smile. Then, I got to breastfeed her and after we finally got all her burps out, she laid on Mommy and was out like a light. The skin on her bottom is broken up a bit, we're not sure if it's from chemo poops or just the fact that she poops a lot and sometimes I don't think the nurses get to the diaper changes as fast as I would like, so her bottom is still very red and sore with some blisters. They keep putting barrier creme on but it doesn't seem to help that much I'm afraid.

I brought my cooler full of milk in, sorry if that is TMI (too much information). I have always doubted that I ever have enough milk, but after filling my freezer, our garage freezer, and my neighbor's freezer full of milk(sorry Dan), it is clear that that is not the problem. My kids just really don't like to eat.

Anyhoo, the MRI is scheduled for Monday, to see how the chemo is working. The doctors don't seem to think it is working based on the girth of her abdomen, so we are probably looking at more weeks of chemo (but I am still praying for a miracle and hoping to be back at the Maple Leaf (Doernbecher lingo for surgery) later this week.

Here's Grace staring at her mobile....

BTW, Room 201 is my room # not Grace's. She really doesn't have her own room yet. I think she is still too young for that.