Just like a girl

In typical girl fashion, she had to change costumes several times. Twinkle Toes ended up being a princess for the church party, a cow for the preschool party, and a T-Rex dinosaur for Halloween night. I think for the first time EVER it was actually somewhat warm here on Halloween night. A nice treat.

An Elephant and a Princess

For Nana - our little pumpkin

They had a sign up at the hospital to come and learn how to make these pumpkin hats. My Mom told me I HAD to go and make Gracie one, so here you go Mom. I went and made our little pumpkin one. Happy Halloween!

This week was a little crazy. Grace has a million tubes hooked up to her for all of her medicines. She lost her arterial line which gives us a constant reading on her blood pressure. So now they are just doing cuffs hourly which is not as accurate. The other day her blood pressure went as high as 140/90 which is higher than my own blood pressure. I started looking at her tubes and found a LEAK in the line so she wasn't getting all of her blood pressure medication, which explained the high blood pressures. Thank goodness for Mommy. Then the nurses started looking a little more closely at the lines and they found a crack in the tubing of her PIC line into her head. Terrible. So they tried for 2 hours to run another PIC line into the other side of her head with no success. So then one of the doctors came in and had to cut her arm and put a PIC line in her elbow. All this poking on her makes my heart hurt. So a PIC line is where they run a tube into your skin that goes basically to your heart. They have to do an x-ray just to make sure they don't go too far. So THEN after all this they sedated her again and tried to take the PIC line out of her head and run a new line in - no success.

Oh well, she got her 2nd round of chemotherapy on Tuesday despite all this monkeying around with her lines and all went well. She seems to be tolerating it okay.

The doctor's report today was that Grace was having a good day. Her abdomen has gone down 2 cm in the last 2 days. We're not sure if that is just recovery from surgery. I like to think it is the tumor shrinking but who knows. The doctor did say that Grace has gained a lot of weight since she has been in the hospital and they have not had to increase her blood pressure medication for her weight gains. She thinks that is a good sign. I don't really know.

Shonda's Pics of Gracie 10/19/08

She took so many! These are the some of the highlights. What a treasure to have them. Thank you.

Week 2 Chemotherapy

So my Mom has gone back to TN now. We sure enjoyed having her around and having the extra help. We are so thankful that she was able to come for awhile.

I thought I would keep everyone updated on my schedule, so all of my angel friends who are so graciously watching my other two buggers can plan their week. I'm going to come home Tuesday afternoon so I should be able to watch the kids Wed-Friday of this week. I will probably be back and forth from Portland to home a lot trying to be both places and I don't want to overuse my friends too much because I don't want to scare you guys off because I think I'm really going to need you, but the oncologist said that typically the chemotherapy could take anywhere from 6-8 weeks in actuality. So I have had to adjust my mental time line about this whole thing. So let's see, maybe by the time Grace is 3 months old, maybe just maybe we'll get to bring her home. Anyways, it is impossible for me to stay in Portland that long so I am just going to be back and forth trying to be in both places for a little bit at a time and hopefully I can use my friends but not every week so that way it's not too much for any one person.....that's my hope.

Thank you so much to all those who have reached out to us - dinners, groceries, counseling sessions, emails, blog comments, little angels who have kept gas in our car, friends who brought lunch when I needed to eat but wasn't, friends who just show up and brighten my day, letters, rides to school, and family who has been there taking our kids and showing support. Thank you to my friend Shonda who is coming to the hospital today to take some pictures of Gracie. I told her not to expect too much - this isn't Grace's finest photography moment but we are glad to get some nice pictures, as you can tell mine aren't the greatest.....Thank you to all my friends and family. We couldn't feel more loved.

Mesoblastic Nephroma

After leaving the blog hanging for a couple of days, it has taken me this long to really be able to come back here and post. For those of you who aren't already aware, Grace's surgery was not successful. The surgeons were unable to remove her tumor because it was attached to some of the major blood vessels in her body, namely the aorta and the vena cava. This is very serious. So they were only able to take a biopsy of the tumor.

After waiting 4 days at home for this news, the report came back today from the pathologists/oncologists. Grace's tumor isn't cancer. It is benign. However, because of the way it is behaving, having already moved into some of the major blood vessels of her body, they basically have to treat it as if it were cancer. The simplest treatment, in this case, which is almost always curable is just resecting the tumor or removing it, however, this is not an option right now with the way the tumor is.

So my little Grace started chemotherapy today and will be having 3 rounds of it over the next 3 weeks. The hope is that they can shrink the tumor enough with the drugs and then go in and do another surgery to take the tumor out. It is our hope that this will work.

Please, please, please join us in giving lots of faith-filled prayers that this technique will work and that Heavenly Father will see fit to spare my little Grace a little longer so that we can have the chance to know her. I am ever hopeful for a healing miracle but am still ever mindful that the time may come to relinguish control and accept whatever plan God has in store for Grace. After dealing with so much anguish the last week, I pray my heart does not have to face that.

My Mom and I are heading back to Portland on Wednesday, leaving Hubert to fend a few days with the kids. Mom is flying back to TN on Saturday. I am hoping my friends can help Hubert out for a couple of days with Mackenze and Caleb so that he can go to work.

Some recent pictures....

In Surgery

It's 3:30 here and Grace was taken back to surgery at about 3:15. We just found out this morning that she was going to be added on to the surgery schedule. Ben Wetzel and a fellow medical student of his as well as one of our doctors on the NICU, Doug, who is also LDS came and laid their hands on Grace's tiny little head and gave her a sweet blessing. I am feeling good about the surgery. We hope that the the tumor can be taken care of and this ordeal will soon be over. Hubert is on his way back to Portland now and should be here any minute now. I am glad to not have to face this alone. My Mom is at our house with the kids so I am glad too that they don't have to be here. It's better for them to be at home than here at the hospital.

"Wherefore, my beloved brethren, have miracles ceased because Christ hath ascended into heaven, and hath sat down on the right hand of God, to claim of the Father his rights of mercy which he hath upon the children of men?
For he hath answered the ends of the law, and he claimeth all those who have faith in him; and they who have faith in him will cleave unto every good thing; wherefore he advocateth the cause of the children of men; and he dwelleth eternally in the heavens.
And because he hath done this, my beloved brethren, have miracles ceased? Behold I say unto you, Nay; neither have angels ceased to minister unto the children of men.
For behold, they are subject unto him, to minister according to the word of his command, showing themselves unto them of strong faith and a firm mind in every form of godliness.
And the office of their ministry is to call men unto repentance, and to fulfil and to do the work of the covenants of the Father, which he hath made unto the children of men, to prepare the way among the children of men, by declaring the word of Christ unto the chosen vessels of the Lord, that they may bear testimony of him.
And by so doing, the Lord God prepareth the way that the residue of men may have faith in Christ, that the Holy Ghost may have place in their hearts, according to the power thereof;and after this manner bringeth to pass the Father, the covenants which he hath made unto the children of men.
And Christ hath said: If ye will have faith in me ye shall have power to do whatsoever thing is expedient in me." Book of Mormon

We have faith that all will be well with Grace. I'm keeping it together for her. She is such a sweet little angel. She hasn't eaten since 9:30 this morning and you wouldn't even know it. This kid hardly ever cries. She is so sweet.

Misdiagnosed

So Grace doesn't have an enlarged kidney. After a second look and an MRI, it now looks like the kidney is normal size. What she really has is a very large tumor, either extending from the kidney or outside the kidney. I'm sure she will be having surgery soon.

Ben, if you are reading, we will probably ask for your help in giving Grace a blessing. We'll be in touch and let you know more when we know. Maybe this weekend sometime.

Please keep Grace in your prayers.

Update 10/7/08

Sorry for the lack of postings. Basically, we just don't have anything new to report. Gracie's blood pressure is still too high and the medication is not working at keeping it down. This week they are running a lot of tests on her. We will know more today. Basically, we are probably looking at surgery to remove the bad kidney, which is keeping the blood pressure high and doesn't seem to have any function. We are probably not looking at a speedy homecoming, so she will probably be here for at least several more weeks. She is having an MRI today so I will post later if I find out something worthwhile.

If you want to get something done.....

in the hospital apparently displaying a little hysteria helps. Maybe hysteria is not quite the right word. Let's just say post partum is really setting in now and I have been very "emotional" the last week. I called Gracie's nurse yesterday morning to get the update and of course, it was the same answer. They were not able to wean her off the IV at all. She was doing a little better on her feedings though. So I got all teared up and crying and told the nurse that I just wanted our little girl to come home and I was torn between needing to be home with my other kids and there with Gracie. She was very understanding and said she would talk to the kidney doctors and have them call me back. Well, they haven't called me back yet but when we called again yesterday evening for the daily report the nurse said that they had her completely weaned off of the IV medication. Whoa. They had been trying to do that for days! Apparently, they added a 3rd oral medication to her list and took her off the IV completely. I'm sure that nurse must have gone and told those doctors a little thing or two. Something like this, "hey, you've got a post partum mom over the edge. You need to quit staring at the monitors and get this little girl out of here." Anyways, all I know is that it is progress and one step closer to getting her out of there. I know they still have to monitor her quite a bit more and make sure the medication is going to control her blood pressure.

So the plan for right now is that we are going back up to Portland tomorrow, Friday, with our kids. I think it is important for them to be with us because they are really homesick right now and to see this mysterious little girl that they have heard so much about but have yet to see. I know they are confused. Sometimes they pray for Gracie and sometimes they pray for Mommy to get better. They don't really understand. They just know somebody is not doing well. Hopefully we will be able to get another room at the Ronald McDonald house and just maybe Grace will get released sometime next week.