Saturday, July 31, 2010

the report

Well we heard from the nurse , the xray showed some small improvement but her blood gasses were not that great so they have turned up the O2 . So the plan is to wait and see. Thank you for all your thoughts and prayers. i Have been thinking over the past few weeks about all the ways God has taken care of us and I thought I would share a few of the big and the small. First the big , the house the Lord has provided is perfect its quite and just the right size for our family. Also the couple that owns the house had some of the people from there church stock the fridge and the cupboards, what a blessing. They have also setup meals from another ministry , this will make it so easy on Amy while I am not there. Now the small which seems to me to be the most special , because of the way God tends to are needs no matter how large or small . Here is a small example , I needed to get a rechargeable camera battery the friends that had loaded us there's were going on vacation and need it back. So we went looking for one , no one carried the chargers for that model anymore so after a few stores I was walking out the door and saw the charger on the clearance rack for 4 dollars , I know its small and means nothing but I believe that God provided it . He is so good to us , what a God we serve that He would think of that . As a I was writing a big blessing just happened . A ministry call Micah House just deliver a huge amount of food , what a great GOD we serve. So if anyone would like to help this ministry here is there website MicahHouseofSpokane.com...Thank you all so much Love Mike

A mixed report

Talked to Hope's doctor again this morning. He had good news and bad. For the good..... for the second day in a row her blood culture has come back negative. This means she is most likely kicking the infection. He wants to watch for one more day to be sure. Also, the ultrasound of her head looks good. There is no bleeding. They keep telling us she is stable. Now for the not so good - she had blood in her stool and her bowels are enlarged again. The tube they have down there to suck air out of her stomach had become dislodged and was up in her esophagus. They were going to fix that and see if it helped get the gas out of there. As for the blood, they don't know if that means there is infection there, so they are starting her on more antibiotics to be on the safe side. She was not able to come down at all on the ventilator, which makes him want to revisit the whole surgery vs. steroids argument come Monday. So we still have the weekend to pray that she is able to start weening off of the vent. Please pray also for her bowels - that the air gets out of there and there is no more blood. We should find out something about her bowels this afternoon as they are taking an x-ray at noon. We will try to post later and let you know.
video

Friday, July 30, 2010

A good report

Just got off the phone with Hope's doctor (Dr. Barsoti). Hope had a good night. The blood culture came back negative, meaning it looks like she's knocking down the infection. The doctor wants to watch it and make sure. She pooped again last night and was looking much less distended. When they x-rayed her bowels this morning they looked better. Again, the doctor wants to watch it to make sure. Thank you, Lord! Now the concern is getting her off the ventilator. Dr. Barsotti is thinking we might need to do surgery to close the valve. Dr. Gretebek told us yesterday that she thinks it might be more of a lung problem which would require a certain type of steroid. This steroid can only be used at low doses for short periods because it can impede brain growth and cause cerebral palsy. So the doctor is going to watch her over the weekend and try to decide which it is - a lung problem or a valve problem. But before getting off the phone he said, "You know, we might be able to ween her off of the vent. I'm going to check her blood gases again and see if we can lower it." If they can ween her off, she won't need surgery or steroids. This is what we're going to ask everyone to pray for next. I told the doctor we had people all over the country praying for this girl. We'd put out the word and see what happens. Thank you all for praying.

Thursday, July 29, 2010

Were in

Hey guys , we have now moved in and are loving it . The move has tired Amy out but she is happy to be here and so are the kids. Here is the latest on Hope, we talked to the doctor this morning and it wasn't the best news . It seems to be very easy to slip into a negative attitude when we hear "bad news", we need to constantly remind ourselves that God is in control and we are not. His plans are perfect and we have to yield to Him. Anyway about Hope her infection is better but the new concern is her bowls they are still dilated and the doctors are getting concerned . The problem is the bowl could have been compromised or it or have a small injury to it , they said this could be serious and my result in a surgery . The next course of action is to wait and see , they want to give her a chance to heal on her own. So if you can please pray that the bowls would start to work and she could eat , also that Amy would not feel guilt and start second guessing all of our past decisions..Thanks for your prayers Love Mike

Wednesday, July 28, 2010

We're so proud


Mike already updated on Hope, so I won't spend much time on that. Let me just say, though, never have I been so excited by one of my children's bowel movements. :) She also is sitting at 1 lb. 12 oz. right now. That is just fluid, but it is still exciting to me that she is almost 2 lbs. Other than that, she is stable and not many other changes. But we are thankful for all God is doing with her.

Now for our other children.... they are getting a little too familiar/bored around the hospital. They've found a total of 60 cents under the vending machines. We just pretend we don't know whose children they are. I also wanted to tell you about their prayers for Hope last night. We thought they understood most of what was going on, but apparently not. They all prayed for her "vowels" last night. Amen. And her consonants too.

Thanks



Hey just wanted to say a quick thank you to Matt B for your words of encouragement , and thanks to the Nelsons for the gifts they were great. Here is Andy with his new toy.Also Hope seems to have an uneventful night, but I almost forgot she had a big poop which might be a good sign which is great. Thank you all for your prayer's GOD is good...Love Mike

Tuesday, July 27, 2010

We have a plan

Hey all here is the latest on Hope, her infection is still there and its not going away as quickly as they would like also her bowls are still a concern so please pray for her. Amy is doing better today she has been pushing herself a little to hard and needs get more rest . We will be moving into are new place on Thursday , we are looking forward to getting in to a nice safe place. As for me I don't know what I am feeling , sometimes I just feel numb maybe that's normal I don't know , Just pray that God will hold me together so that I can take care of the family. PS we are still having Internet problems and posts will be slow maybe it will be better at the new place ...Thanks God bless Mike

Monday, July 26, 2010

So Hope is 10 days old today. Yay! She had a pretty good day today. Her infection was a little better this morning, but the doctor decided to take out her pic line anyways and put in a small peripheral IV. This went fine. She was up to 1 lb. 7 oz. when I talked to the nurse a few minutes ago. The nurse said this is probably just fluid and she anticipates that it will be peed out. Still, it makes me feel better when she’s not dropping in her weight. The nurse said she’s on nice, low ventilator settings. The only thing that the doctor described as worrisome is the gas in her bowels. Please pray with us that this resolves and they give us a good report tomorrow morning. Until this is better, they don’t intend to start her on feedings. Until they start her on feedings, she won’t start gaining weight. Obviously we want this little squirt to chunk up as fast as possible so we can bring her home.

Mike has been feeling better and has started visiting Hope again. He took this video of her last night and it made me so happy to see her again. Isn’t she just the prettiest little thing? I can’t wait to get in to see her again.
video

Sunday, July 25, 2010

Settling In

Hi all. Just wanted to update you on Hope’s condition. She is fighting a staph infection right now, which she got from the bacteria on her own skin. This is apparently very common in these little guys and they have her on antibiotics to treat it. Babies usually respond very well to these antibiotics. If it weren’t for the fact that she has catheters, they would expect it to clear up in a day or two. However, because the catheters can be sites for the infection (if I’m understanding correctly), they expect it will take a little longer. Please pray with us that she kicks the infection quickly. Once it is gone, they anticipate being able to take her off the ventilator and start feeding her. At that point I will also be able to start kangaroo care. After a week of absolutely hating going to the NICU because I have been so terrified, I find that I am really looking forward to going and being with Hope again. Nate seems to be just about over his cold and no one else has shown any more symptoms (Praise the Lord!), so we may start getting back in there to visit her in a couple of days.

As for how the rest of the family is doing….. The kids are really happy to be up here with us. Mike, however, is having a hard time caring for Andy in particular, and I can’t help much because I can’t lift him. For instance, yesterday morning Andy had completely soaked all his bedding and playpen with pee. When Mike took off his outfit, we realized that Andy had pulled his penis out the side of his diaper. So his diaper was completely dry. Good job, Andy. Neat trick. So after Mike scrubbed down the playpen and washed all the bedding, he took the 3 boys out to Fred Meyer to go shopping. He was standing in line to check out when he realized that Andy had pulled the same trick and peed all over the shopping cart. Let’s just say, Dad was not feeling warm, cuddly feelings toward our youngest. We could really do with a couple of days where we don’t have any incidents. (By the way, Andy is now only allowed to wear onesies with pants regardless of how hot it gets.) I asked the oldest kids if it would be okay to go home for a little while and give Dad a break, but the answer to that was a pretty definite “No!” They really want to be with us right now. Mary sobs at the idea of leaving us or her baby sister. The boys were pretty upset at the prospect too. So they came up with all kinds of ideas to help Dad out instead. They are going to try not to fight (good luck with that one) and try to play with Andy more. They also want to go out and buy Mike a bunch of presents. While we’re shopping, they want him to go out to Starbucks by himself for a treat. They want to spend their own money on him and help out with all our bills. I explained that we are actually doing fine and have an emergency fund set up for just this reason, but they still want to help. I have good kids. I don’t deserve them.

As for me, I think I’m getting better. I don’t panic everytime the phone rings now. As I said, I’m really looking forward to being with Hope now. My body is recovering well, though I think I’m still inclined to push it a little. It just feels so good to be up and about after being stuck in my house and on bed rest for so long. My brain may not be firing on all cylinders yet , as evidenced by an innocent question by my 6 year old. “Mommy, are you still on medicines that make your brain not work right?” But overall, things are looking up today.

Thanks again for all your prayers on behalf of our little Hopester. We really look forward to the day when everyone gets to meet her and love on her in person. We are so blessed by all of you.

Friday, July 23, 2010

Much to be thankful for

We went to visit Hope this morning and were told that the doctor wanted to talk to us. After waiting about 30-40 minutes (hardly daring to breathe), she finally showed up. Then she refused to talk in front of our kids. Turns out she wanted to tell us that Hope had to be intubated last night, so she is on a ventilator. This is not something they like to do because it can cause long term lung damage. But it needed to be done because they kept having to bag Hope last night. They think she is starting to fight an infection so they have started her on antibiotics. So kind of scary stuff. However, there was some good news too. Her kidneys have started functioning better. The gas in her tummy seems a little better, though it is still a concern. And they have gotten her fluids up, so she is almost back at her birth weight (620 g vs. 630 g). I know the ventilator is not good for her long term, but I have to say I am glad that she is getting a little break from her c-pap. It has really been making her head misshapen and the nurses haven't been able to get it off of her to massage her face much. They were wanting to do it at every care time, but she wasn't tolerating it well. When I went in to see her she seemed to be resting really peacefully, and her numbers weren't jumping all over the place. I think she was just one tired little girl. Other good news... if she has a good weekend they will start giving her milk early next week. And even better, if she can get off her ventilator in a few days we can start having kangaroo time. This means they will put her on my chest, skin to skin, and cover her with a blanket. I can't wait to start loving on my little girl!

After leaving Hope, we went looking for a place to stay. My Aunt Shirley and Uncle Don had very graciously volunteered their motor home, if we could find a place to put it. We went and checked out some RV parks and were not finding anything that would work for us. So we went to check out an apartment that we heard about (thank you Eva) and it wound up being really wonderful. It is a little ways from the hospital (20-25 min), but it is in a wonderful neighborhood and is owned by a lovely Christian couple. It is plenty big for our need and has a big yard for the kids to play in. We feel like it is such an answer to prayer and Mike does not feel at all worried if I wind up staying there by myself. Thank you, Lord!

Other praises - I am healing very quickly. I went all day without taking so much as a Tylenol. I even still had ankles by the end of the day. I'm having to do a lot of pumping since Hope isn't ready for my milk yet, but it is going much more smoothly than I would have expected. Again we thank the Lord.

But we still have some concerns we'd like you to pray about. First off, Nate is sick with a cold and I think it's starting to spread to the rest of us. Mike has skipped visiting for the last 2 days and I didn't go this afternoon. It kills me to not go see her. I had the nurse take a video of her on my camera. Then I broke down crying to her about feeling awful that I couldn't come talk to my girl. She assured me that she would talk to her lots to make up for it. Please pray this is short lived and we can get back in to see her. I'm really second-guessing everything I do nowadays. I wanted so badly to have my kids with me and be a family again. Now I wonder if I wasn't just being foolish. I can't trust myself to think clearly right now. Pray God will lead us in all our decisions. And of course, pray for Hope. When we pray as a family, Mike and I go through and list off all her body parts that need help. The kids have given up and just pray for "all her body parts". That works too.

Before I sign off, I just wanted to take a minute to thank some people specifically. Carla, thanks for coming up so I didn't have to be by myself when Mike went to get the kids. Jessica, thank you for all the meals. Lena ladies (Rhonda, Donna, Stephanie, and Wendy), thank you so much for the gift card and encouraging words. There is a Pizza Hut right by the apartment. Eva, thank you for helping us find a place. And thanks to everyone who continues to pray us through this.

One last thing, we still are having internet issues. Turns out that the internet works in the lobby, but doesn't seem to make it to the 9th floor. So our posts might still be sporadic. We will try to figure out a time every day when we can log on.

Oh, and one more thing. We called NICU not long ago and Hope is doing great. Twice today they've turned down the ventilator (not entirely sure how that works) because she wasn't needing as much as they were giving her. You go girl!

Thursday, July 22, 2010

Hey all

Hey just a quick update. We are still without Internet so the post will be sparse, but Hope is doing OK . She had to have a transfusion today and she looks like she is felling better, tomorrow she will have another, so please keep praying. Also I have brought the kids up and we are staying at the Cooper George. This has been great to all be back together and just love on one another . More later Mike

Wednesday, July 21, 2010

A good visit

Thank you for praying for us this afternoon. We just got back from a nice visit with Hope. She was resting peacefully on her tummy, so we read Bible to her and talked to her for a little bit. It was nice that the lights weren't flashing while we were there. Her nurse was saying that she does fine as long as they're not messing with her. It's during her care times that her heart rate and respiration get squirrely. I think for right now I might just need to go between times to see her and pray for her from my room during the care times. Her care times are every 4 hours, so if you want to be praying especially hard for her during those times we would appreciate it. Those times are midnight, 4am, 8am, noon, 4pm, and 8pm. Thanks so much for walking this road with us. And Kristin, thanks so much for praying for me on the phone right before we went up there.

We just got done talking to my doctor and I am getting discharged as soon as I am done with my antibiotics. So tonight we move across the street into an apartment. Mike will go get the kids tomorrow morning and we will start living together as a family again. Yay! I don't know what our internet situation will be, so we might not respond to emails right away. We'll keep you all posted. Thanks again for all your prayers.

Amy

Lift her up, please

Hi guys. Thank you so much for praying us through all this. This past 24 hours has been rough for me. I go from this wonderful peace, knowing that God worked a miracle and brought our daughter back from death to just being so terrified that I can't stop shaking. Giving our little girl up to God was not a one time thing, it's a minute by minute all day long thing. I'm tired. I can't think straight. Thank you, Lord that "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express." (Romans 8:26) I also need you guys to come along side me and hold me up in prayer. Last night I told the Lord, "Jesus, my hands aren't big enough and I'm not strong enough to hold this all up. You have to do it." Please, please don't stop praying.

I'm afraid to put specific requests in here, because God is forever coming at problems from a completely different perspective. But we've been informed that Hope has some gas in her tummy that is becoming an issue. It could mean there is a blockage. She also has this hole (don't ask me the name of it but all babies in utero have it) that allows the blood to bypass the lungs. Now that she is born that needs to close up. They usually give the babies ibuprofen for it, but Hope's kidneys aren't doing well enough at the moment to handle the ibuprofen. I don't know if we should be asking for healing for these specific things or not, so I'm going to leave it up to you guys to pray how you think best. But at least talk to God about these concerns.

I'm sorry if I haven't been very good about getting back to people today. I haven't been able to talk much without sobbing. Don't stop calling or emailing. It just may take me a little bit to get back to you. But it does still make me feel loved.

Amy

hey everyone. Here is the latest on Hope and Amy. Hope had to get a pic line today, which is an iv in her arm and the line runs all the way to just above her heart. That was a little scary , the nurse called just before 4 her care time and said we should not come up ( which makes your heart stop ) but they said this is a good thing they will be able to give her "stuff" more effectively. A little while later I was able to go see her and she looked fine . Today the kids came up , I went down this morning a brought them up it was so good to see them , we do miss them so much. It was great to take them into see Hope , they seem to cope so well . They do make me proud, here are some pics and video of them. Amy had a bit of a scare tonight while she was up with Hope her heart rate dropped as well as her other vitals. The nurse told her she was going to be fine, but its still hard for her to watch. We had a good talk tonight when I got back from taking the kids home and we just need to commit her to the Lord every day, for He is in control and we need to constantly remind are self's of that! video video

Monday, July 19, 2010

A Word About the Video

Hi all! I just wanted to add a little bit about our video that Mike posted tonight. It scared me when I watched it, so I figured it might look a little scary to others too. First off, Hope's head looks pretty dented. The nurses have assured us that this will go back to normal as soon as she's no longer wearing her head gear. It is normal and nothing to worry about. Secondly, her eyes look pretty weird, but we have to say how amazing they are. The neonatalogist has been saying that Hope seems more like a 28 weeker than a 24 weeker. One of the only things that made her seem that young was the fact that her eyes weren't open yet. Well guess who decided to open both eyes today? That's right - our over-achieving little miracle baby! I also want to point out something that the nurse says in the back-ground. All that time that Mike was filming, Hope had her c-pap(sp?) off. This is the gizmo that goes in her nose and puffs a little air at her. The nurse points out that her oxygen saturation levels are fine throughout this whole thing. So she might look a little alien at this point, but she is one amazing little girl. Thank you, Jesus! Amy

We like poop around here

Sorry I haven't made a post until now but we have been waiting for the doctor to give us the official results from Hope's ultrasound, but we still haven't heard anything official . So here is what we heard from the nurse this morning , she said the tech didn't see anything unusual. GOD is great!
Here is the latest on Amy it looks like they are going to keep her another day because she has what might be a infection in her varicose vain, this happened with Andy also . They have put her on iv antibiotics and she could still use the rest,so it looks like she will be released on Wednesday. Amy was able to make some trips up to spend some time with Hope and I have become the milk man. My new routine is to wash the breast pump parts get Amy setup get the milk out of the bottle with a 1cc syringe , then label them date and time then run them to the NICU to be put in the freezer , then come back and wash and dry everything and then its about time to start over ( sorry I know this is a run on sentence) but I love it. Also today while Amy was sleeping I got to help with Hope's care , I rubbed her down with her cream and just got to talk to her she is amazing. So while Amy's is stuck in bed with yet another IV I made a short video...God bless have a good night PS sorry I have been trying to upload this video for over an hour


video

Deep Thoughts with Mike( thats from SNL )

Here are some thoughts: Its 5:30 am it’s been a cold night, with this thin cover I have. Maybe that why I’m awake but I keep writing letters in my head, that feels so strange to me. I Feel the Lord is really changing me through this. Here are some of the ways I have seen GODs hand at work, foremost the life of Hope of Course but she is just the tip of the iceberg. I think some people give lip service to the miracle and say wow “that’s a miracle” but let me tell you it was and is an ongoing miracle. I feel I need to keep telling people this was a real one this does not happen, GOD came down that night and worked something out side of the norm. I know people will try to give us reasons why this happened , like when a baby is in stress there body’s speedup there maturity and that may have been the case but I don’t think so. GOD did this that’s why.

Another thing I’m amazed at is the power of prayer. I know people all over were praying but I keep hearing new stories. My favorite still is what was happing right outside the recovery room. The next day after Hope was put in the NICU we met our new nurse for the day Dot. Come to find out she had been upstairs that night and told us about how great it was to see people all over the halls praying, and how the nurses were talking about it, and she was able to say ”see prayer works”. It is so cool to be able to talk to her now about it.

We met with some friends last night and just rejoiced together over all that has been happening. We were talking about how this might be changing people around us, I really hope so. I hope this is going to be a church changing thing, I am now closer to some people than I ever thought that I would be. I have heard some stories about how some churches have had kids like this and how they have become the “church's kid” I hope this is going to be the case. But if it doesn’t that’s ok to I know now more than ever before that GOD is in control and He most definitely has a plan. The more I think on it Hope is the perfect name for this little girl. Later Mike

Sunday, July 18, 2010

Update


Hey all here is the latest on Hope. Amy and I just left her and she has dropped 2oz which is to expected and is not worrisome , the doctor came and told us he has been a little stingy with the fluids but they have bumped them up and he is happy with her performance. Tomorrow Hope goes or they come to her I should say to give her x-rays and a ultrasound of her brain to look for bleeding, so if you would please continue keep her in your prayers. As for Amy she is doing great feeling the need to show how much of a overachiever she is , she is walking the halls with the aid of her wheel chair. I would like to thank all of you for your thoughts and prayers , and for all the folks that have made the trip up to see us we are so happy to share this wonderful miracle with you..

update on Hope

Hey all just wanted to let you know how Hope is doing. She is still look great her weight is still 630 grams which for all of you who don't know your metric conversions it's 1.39 lbs. All her numbers like O2 , blood pressure and heart rate are great. The nurse Gloria said she is a real fighter but there will be some rocks in our road but she still can't see any yet. God is so great , we have some great opportunities to talk to people from the house keeper to the doctors. I never thought God would use us like this .
but I am so happy I am not in charge He is... video

Saturday, July 17, 2010

The recovery


Hi all just a quick note . Amy is doing great we have been moved down to the 2nd floor rm 2006, Amy refers to this as long term parking. Both her and Hope are sleeping now (much deserved )and are fine . Here is a picture we took of Hope's diaper it has been one of the things you see and reminds you just how small she really is. But it's so COOL! that is all I can say when I am in such awe of what has happened over the last 24 weeks..more later now some rest ..Mike PS yes that is a tube of chapstick

The day after


There is so much to process today , But Amy and Hope are doing great . Amy is still getting blood and platelet transfusions so please pray that she would continue to improve and Hope would also....we are all in amazement of the GOD we serve!

update

Amy is starting to run a low fever and they have given her 1 more unit of blood. She is still looking good though more later
Hey guys just need to give a update on Amy and Hope..
Please forgive me if this sounds a little mixed-up but here you go. The day started out Amy had her ultrasound and things looked as good as could be expected, so I went down to Moscow to take a call then when I was there she called and said I need to get back there she had started to bleed heavily and things had taken a turn for the worse. When I had gotten there she was going into shock from the blood loss. They got her stabilized and we started the wait and see , Hope still had a good heart beat the whole time. Things then got worse she was bleeding and starting to have contractions , at this point we had already have had to make a decision on whether we would or not resuscitate Hope .Based on the what she would have to go through and with the Lords leading we decided not to, and just be able to hold Her while she is here. So Amy went in and they brought me Hope a little while later, I held her with the understanding She would die in my arms. The doctors told us how it would happen and it could be slow. I was able to hold her for over 4 hours, Amy held her while in recovery also. We also had 7 other friends and family there and they were able to hold her. While that was going on I filled out my own daughters death certificate. Now let me tell you about my God. The OB doctor came in and talked to us and said that Hope should not look this good and she had felt she needed to talk to the NICU doctor and they would like to check her blood gases , we said OK they said not to get our hopes up that this was probably going to not be good news but they were at a loss to explain why she is still here. So while we waited are OB came in and was well very excited and said that her numbers looked perfect and that the NICU doctor would come and talk to us. When he came in he could not explain this, he asked us are we sure of her age did we get the dates wrong. The NICU doctor could not say anything but "It's a miracle ". He then laid out his plan for her saying it's still going to be a bumpy road but things could not look better. He has put her an antibiotics for a few days but she is not needing oxygen she is breathing on her own with just a little help, there is so much info to share about how good she is doing. The NICU nurse said it best" we have never seen anything like this", her numbers are good for a 28 week old not to say a 24 week. Well I just wanted to thank you all for your prayers they were heard and answered in a way I'm sure you or I could have never expected.

Mike :-) :-)