Tuesday, November 30, 2010

I just got off of the phone with Hope's primary night nurse. I asked if she had weighed Hope yet, and she said I was going to do a happy jig. Hope hit 7 lbs 1.2 oz tonight. I was so excited. I asked, almost as an after-thought before hanging up, "And she hasn't had anymore blood in her stool, right?" Silence. Then, "I can't lie to you. I was really hoping you wouldn't ask. But the last one the day shift sent down initially came back negative. They called back awhile later and said it was actually positive." She went on to say that she doesn't understand what happened and she's going to check it herself tonight in addition to sending it to the lab to get checked.

I have been trying to not get my hopes up. I thought I was doing pretty good at that, but the fact that I'm sobbing so hard that I can hardly type means I haven't done too well after all. The verse we have at the bottom of our blog says that "hope does not disappoint us". I wonder what this is then.

Monday, November 29, 2010

She does it on purpose

I was waiting to blog until after Hope's nurse weighed her tonight. She was 6 lbs 15.3 oz as of last night and I wanted to be able to write that I now had a seven pounder. So of course she went down - 6 lbs 14.8 oz. Oh well.

Other news... she got to go on a walk today. It was just around the unit, but she stared wide-eyed. It was great. I'm sure her nurse thought it a bit ridiculous that she had to push her IV pole and drag her oxygen just so that we could get out of her room, but she did it for us anyways. Hope also got approval for "sham feeds". This is what I like to call "bulimia training". They let her have some pedialyte from a bottle, then they suck it back out with the replogle tube. Nice, huh? She's just happy to get to swallow something down. Hopefully she'll get to keep some down soon.

We also are scheduled for our "care conference" on Friday morning at 9. The GI doc won't be able to make it, which is kind of frustrating. We were given the option to put it off until next week, but I just want it done. Please be praying for God to lead us through this.

Saturday, November 27, 2010

How to sum up?

Things are all starting to blur together lately and I'm having a hard time blogging. I'm going to try to sort this out and sum it up so that it makes sense. So here goes...

Hope is doing okay. She still has blood in her stool and gas in her bowels. Her blood work is looking much better now though. Her platelets and CRP (measure of inflammation) are back to normal. No one appears to know what is going on. One surgeon today was telling us that her bowels could just be taking some time to start working again. Of course in the next sentence he talks about strictures and surgery. He says they need to check her colon. The other surgeon says there's nothing wrong with her colon. Two docs say we shouldn't feed her until there's no more blood in her stool. The nurse practitioner says (and we agree) that you can't keep not feeding her. At some point we're going to make the choice between killing her by testing her gut or killing her by keeping her on IV nutrition and ruining her liver. Aaah! I have a suspicion that if we took 10 doctors outside at the same time and had them look up they would all tell us the sky was a different color. Do I sound frustrated enough? Apparently the doctors are starting to realize this because we have been promised that we will get a meeting next week where everyone sits down together.

Mike and I are really at the point of feeling like we will not let her go through another surgery. If the doctors could all agree on the problem or had some sort of an idea what they would find or how to fix it, we would consider. But that does not appear to be the case. We are considering other options, such as moving her to Seattle, transferring her to Gritman, or bringing her home while still on IV nutrition. I personally feel like we've ridden the hospital train as far as we need to. When she was born we had decided not to intervene. God decided that against all odds she was going to live. If He still wants her alive, He can fix her. I know that everyone is going to have an opinion about what we should do. Please don't share them. I'm not trying to be rude, but no one else is in this spot. We are asking for God's direction here. Please feel free to ask for that with us. He promises in James that " If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you." We'll update when we hear what the group has to say.

On to other news.... Hope is going to need to start out slowly with her feeds and will be starting on something called Neocate. This is a very broken down, hypo-allergenic formula. It's unclear how long it will take to get her going on this or how long she'll need to stay on it. I am still hopeful that I will be able to breastfeed at some point. To that end, I am on a special diet which removes the most common allergens that could be bothering a breastfed baby. I am cutting out dairy, gluten, soy, eggs, and nuts. Yes, that does pretty much leave me with chicken, rice and a few fruits and veggies. The upside is that I expect to be trimming down pretty quickly. :) It will all be worth it if I can nurse my little peanut.

Hope is staying alert for periods of hours at a time. She will stare wide-eyed at anything around her. I mentioned today to the nurse practitioner that I wish I could walk her around the unit and let her see that there's more to the world than her dark, little corner. The nurse practitioner ( I love this woman) has volunteered to bring in a portable oxygen tank for her so that we can do just that. Yay!

As for the other kids and how they're doing... they fell asleep tonight while watching a documentary. These children, who swear they are never tired, couldn't keep their eyes open. They've been sledding, shoveling walks, building snow forts, and in general following the teenage girl we live with everywhere. It's apparently pretty exhausting. We will all be going home together tomorrow. I've been needing a more snow-worthy vehicle, so I will get the truck and drive back on Monday. Should be fun to be out on these roads...

We hope everyone had a wonderful Thanksgiving and is enjoying the start of the Christmas season.

Monday, November 22, 2010

It's been awhile since I blogged. It's not because nothing has happened, but rather too much has happened and it would take way too long to write it all down. So I'm going to try to sum it up. Basically, they still don't know what is going on with Hope. She is still having gut problems, though some things are improving. Her blood work is starting to improve. Her CRP (the number which measures inflammation and which should ideally be below 1.5) is dropping. Her platelets are going up. So she appears to be fighting whatever this is that's bothering her. I think the latest theory is that she has an allergy to my breast milk and is going to need a special formula. If I'm understanding correctly, they believe Hope's gut has been torn up because of her inability to handle my milk and then an infection has set in on top of that. The surgeon was there this morning and he thinks, because of her enlarged bowels as shown on the xray, that there is some thickening of the intestinal wall. The plan of action is for Hope to stay on antibiotics and off of feeds for 10 days (she's at day 4) and then introduce a special, predigested formula. I really, really hope this works. A pediatric GI doctor has been called in and he said there are still several things to look at yet. I'm too lazy to try and type about all of the possibilities, but suffice it to say there's still stuff to check. I'll keep you posted.

video

Thursday, November 18, 2010

Bravo for the Broviac

Hope is back from her broviac surgery. This is a surgically inserted central line. They made the incision in Hope's groin but the line actually comes out of her chest. It's kind of creepy, but I'm so thankful for it. Now they will not have to poke her anymore. This line should theoretically last a long time and they can use it for everything she might need - nutrition, antibiotics, blood (though hopefully we don't have to go there). But the really cool thing is that they can also draw blood out of it so that she won't have to get all those heel pricks anymore. Yippee! The nurse was telling me that she was very impressed by the skill of the surgeon. He was able to give her a sort of spinal and thereby avoid the ventilator. Yay ! At the moment Hope is out on morphine and looked very comfortable. As I stood over her I was counting the holes from IV and picc attempts, surgery incisions and whatnot. I counted 18, but that was just what I could see or knew about. I didn't move her around at all to look for more. Suffice it to say she looked like a pin cushion. I'm so glad she won't need any more pokes!

If anyone is interested in knowing more about broviacs, check out this page: http://surgery.med.umich.edu/pediatric/clinical/patient_content/a-m/broviac_placement.shtml

Hope's condition

Hi all sorry its been so long between posts. So here is the latest on Hope , its hard to keep it all straight it seems to change every few minutes. OK her bowel xrays have gone from shes fine to there might be a new problem, but as of today they said she has a normal gas pattern YEY. The new big problem is her infection they have her on antibiotics , but we are not sure that it is not being caused by the blood transfusions she got on Sunday I think. As a result of the infection they have pulled her PIC line and were trying to just us the IV's for a little while, but the IV's wont last but maybe a day if that. So they are to give her a brovack or something like that because they cant get a PIC line there are no more spots left. OK a brovack ? is a surgical procedure were the install a catheter in her neck or leg they chose her leg, because she has some sort of fungal thing on her neck. She is going in for that at 5:30 pm today so please keep her in your prayers, we will post tonight to let you know how she does. I am sorry I know i am leaving so much out but I cant keep it straight. Also please pray for Amy and I this is and has been so hard..Thanks Love Mike

Monday, November 15, 2010

News

This is me on my face asking God's forgiveness and thanking Him over and over. He was listening. He does care about my girl. We got a call from the surgeon this morning. Hope's xray from this morning looks fine. It is not dilated like before. He is not at all worried about how that section of colon looked on previous xrays. He is convinced that it is fine because he'd just done a barium enema before surgery and it was fine then and the enema is better for looking at the colon than this other dye study. So there is no surgery in her future, as far as we can tell. The surgeon has ordered her tube that sucks air from her tummy to be clamped. If she does okay after 4 hours of that he will have it pulled out. They will watch her for the rest of the day and if all goes well they will start feeding her tomorrow. (She'll be starting with pedialyte.)

As for Mary... she had a fever yesterday and today she woke with a croupy (?) cough. It was only there first thing and has not resurfaced since she took a shower. Her fever is gone also. But we took her in to the urgent care per suggestion of the NICU nurse to have her tested for RSV and whooping cough. She doesn't have either.

Thank you, thank you Jesus. And thank you to all our friends who have been praying, even when I wasn't convinced it worked.

Please forgive me

I have had some really angry posts lately. I'm sorry. I know you have all been trying to show me your love and I do appreciate it. I have felt really hurt and abandoned by God. I have said things to Him that I won't repeat. I know I have let many of you down, and that was hard, but I can't pretend things are okay. I know many of you think that I'm acting like a spoiled child who's stamping her foot and demanding her own way. I get it that it's not all about me. If it was just about me, believe me, I would have stopped way short of the places I've gone. But my little girl is hurting. Every day I go and see her little body with so many tubes that I can hardly pick her up. I see the marks from the many heel pricks they do to her all the time. I see her swelling up with fluids and watch her turning red and crying as she tries to move the stuff in her bowels. I look into her eyes which are yellow from the jaundice that she's gotten from being on IV fluids for so long. And I hurt worse than I thought it was possible to hurt. I want to make it stop. She has been through so much. Everyone tells me how tough she is and I know it's true. But I don't want her to have to be tough any more. I want her to be able to rest. So I'm sorry if I've gotten a little frantic lately. I just want it to stop! And now we're looking at not being able to go home until January or February. And that makes me hurt not just for Hope, but for the other kids as well. They have been troopers, but they still need a mom too. And Mike is working so hard to keep things together. And I am here, away from them, and still unable to help Hope. And quite frankly, I don't want this to be my life.

So what do I need from you? Not philosophy and theology. I want you to cry out to God on behalf of my baby girl. Please ask Him to make the pain stop. And cry with me. Hope's doctor held my hand last night and cried with me. I so needed that. I needed to know that he understood and that he hurt for what she was going through. That's what I need right now.

But regardless, it was wrong for me to take my anger out on you. Please forgive me.

Sunday, November 14, 2010

By the way... the 3 oldest kids are up here and Mary has come down with a fever of 100.5, so we aren't even able to go in and see our baby right now. Good timing, huh?

Abandoned

We have been assured by 2 doctors that Hope is going to need at least 1 more surgery. There is a section of colon, about 3 or 4 inches long, that is going to need to be removed. There is question as to whether this will be able to be hooked back up right away or if she will have to have the same deal as this last time, with the ostomy bag and a 2nd surgery to hook back up. We will speak to the surgeon tomorrow. We have asked to consult with the surgeon from the other hospital as well. In addition, Hope has another infection and is on antibiotics again. Her picc line is not ideally placed and could be the source of the infection, but the doctor did not want to replace it until she has been on antibiotics for at least a couple of days. They will not operate on a baby who is already fighting infection, though it could also be the bowels that are infected. Fun, huh? Hope had yet another blood transfusion today. I'm not sure how many this makes now...20, 30, 40? It's got to be getting up there. She's also gone back to high-flow cannula because her oxygen was getting up to 70% on the regular. The nurses keep telling us that Hope is "resting peacefully". I'm curious how many of them would want it described that way if they were in her spot. And just to head this off ahead of time, if a single person tells me that God's timing is perfect one more time, I promise that I will hunt them down and beat the snot out of them.

Saturday, November 13, 2010

Hope is resting again , it looks like there is a new problem with her lower bowels near her colon . We will have to wait for the surgeon on Monday to make the call if it means another surgery or not..
Please pray for us and Hope...More to come later Mike

Friday, November 12, 2010

Hope is resting and we should know something tomorrow about the test ...more later Mike
Hey just a quick note , Hope is going in for her test something called upper GI ??? , they said it can take a long time so keep her in your prayers. On the the Amy side we have got her back at the granny flat and has taken a sleeping pill and is resting . Please pray the Lord will recharge her ...
Thank you Mike
p.s these have been on my mind just thought I would share them..


28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.” Mt 11:28-30

1 I waited patiently for the LORD;
he turned to me and heard my cry.
2 He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
3 He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear the LORD
and put their trust in him.

4 Blessed is the one
who trusts in the LORD,
who does not look to the proud,
to those who turn aside to false gods.]
5 Many, LORD my God,
are the wonders you have done,
the things you planned for us.
None can compare with you;
were I to speak and tell of your deeds,
they would be too many to declare.

6 Sacrifice and offering you did not desire—
but my ears you have opened
burnt offerings and sin offerings you did not require.
7 Then I said, “Here I am, I have come—
it is written about me in the scroll.]
8 I desire to do your will, my God;
your law is within my heart.”

9 I proclaim your saving acts in the great assembly;
I do not seal my lips, LORD,
as you know.
10 I do not hide your righteousness in my heart;
I speak of your faithfulness and your saving help.
I do not conceal your love and your faithfulness
from the great assembly.

11 Do not withhold your mercy from me, LORD;
may your love and faithfulness always protect me.
12 For troubles without number surround me;
my sins have overtaken me, and I cannot see.
They are more than the hairs of my head,
and my heart fails within me.
13 Be pleased to save me, LORD;
come quickly, LORD, to help me.

14 May all who want to take my life
be put to shame and confusion;
may all who desire my ruin
be turned back in disgrace.
15 May those who say to me, “Aha! Aha!”
be appalled at their own shame.
16 But may all who seek you
rejoice and be glad in you;
may those who long for your saving help always say,
“The LORD is great!”

17 But as for me, I am poor and needy;
may the Lord think of me.
You are my help and my deliverer;

you are my God, do not delay.
Pslam 40


GOD IS GOOD!!!!


Thursday, November 11, 2010

Hello all , Just a quick note on .Hope she is still having problems and the doctors are going to do a test on her bowels, they believe that the bowel has started to die or is to damaged and they will have to do another surgery like before .W e should know more tomorrow . So please keep praying for her and Amy
Thank you your brother in Christ Mike

Sunday, November 7, 2010

Healed



Hope has had a much better day. God has been working and things are starting to move through. She has had a couple small poos, so it's starting. We are believing God has fixed this and we even took the car seat down so that she's ready to go when they say the word. Things are going to start moving fast. There has been much wrestling with God and trying to grasp how things work, but I don't have the energy to go into all of that right now. I will post about it soon. But thank the Lord with us that our big 6 lb 3 oz baby is doing better. Please continue to pray with us that she improves and everyone knows that God has done it.

Saturday, November 6, 2010

Still in pain

well she still in quite a bit of pain , we are not having any success in get her bowels to start . The doctors are still just trying to make her a comfortable as they can , Amy was able to help with that by holding her almost all day. The big request is that God would intervene and get her bowels to work , this has been very hard on Amy and all of us to watch her in so much pain. We know she needs to be off her meds in order for her bowels to wake up, but it does not make it any easier. Please pray that God would give us the faith and strength we need.....Mike

Friday, November 5, 2010

Tummy Troubles

Our little Hopester is having trouble again. Her bowels have not started working right. They don't know if they just haven't woken up yet or if there is a blockage. They are trying to give it time before they do the barium enema because they don't want to put added stress on the surgery site. If it is determined that she does have a blockage, it will probably mean another surgery. Please pray for her. We don't want her to have to go through anything else. And right now she's in a lot of pain. Some of her bowels are really distended with gas and she has been crying a lot. Please lift her up in prayer tonight. Ask God to be merciful to this baby who has been through so much suffering.

Thursday, November 4, 2010

What is wrong with you people?!

Hope is waking up now and she is not happy. I do believe this is the "I want food and pain meds!" face. The nurse practitioner, knowing that I had a sore throat and wasn't planning on coming in, called to see if I was feeling better yet so that I could come down and rock my baby. "She is really wanting to be held." It's a good thing Mike was up here and he was able to go down after work and hold her for about an hour.

I haven't been posting her weights because I didn't think they were very accurate at this point. She was 5 lbs 1 oz before surgery and 5 lbs 12 oz the day after. Can we say "fluid retention"? However, it's been a week now. She dropped down to 5 lbs 10 oz at one point but she is back up to 5 lbs 13 oz now. So I'm not sure she's going to go down very much. I just may have a 6 pounder on my hands before long. How huge is that?!

I am waiting to hear when they will re-introduce her feeds. She's had a couple of small poos, so things are starting to work. She is certainly willing to try eating again. Please pray that this goes well. We'll keep you posted.

Monday, November 1, 2010

Not much happened today. Hope slept away most of the day. They continued to wean her pain meds and ventilator, but she is not yet off of the vent. Please pray that she improves and can get off the vent. We really want her to heal and start in on her feeds.