Author: Michael

Hey Guys,

I have a quick update.

Mandy is doing really well. She was transferred to the long-term care facility on Thursday.  We spent some time there Saturday. It is a very nice place. Mandy has a private room, and the staff are great.

There are a couple of points of frustration though.

The first is she is still fighting off the MRSA, which absolutely sucks. This is a condition that we are going to have to deal with for a while. Hopefully she will develop the immunities she needs to combat this. The problem is with a trach and a G-Tube; they will cause bacteria to grow. You have to remember that when you bypass one of the body’s natural defense systems, which in this case is the nose and mouth, the bacteria has a direct in to the lungs. That’s why anytime you have anything to with the Trach, you have to be sterile. I have no problem with this.

My concern is that the doctor told us that we should wear gloves all the time when we handle her. I’m sorry but I absolutely hate the idea of the only feel my daughter has of me being through a rubber glove. In that case we might as well just put her in a bubble, which I refuse to do.

We have been practicing good hand-washing techniques from the beginning, which is what they told us to do. Now they want us gowned and gloved.

I’m really wondering how we are going to be able to care for her at home, when we have to take such extreme measures while handling her.

I really want to know how she contracted it in the first place, but apparently it is becoming a real problem in hospitals. I find this very ironic, because of all the measures that they use to keep things sterile.

I know God has a reason for this, and I am not going to just throw up my hands in defeat. I also know that he can take care of this antibiotic resistant bacterium. I just needed to express my frustration.

Here’s another area where we need God’s intervention. It’s a good thing that He doesn’t get tired of answering our prayers. I know he does.

Thanks for all the prayers

Love in Christ,
Michael and Teresa Blaes

PS. Please share your thoughts by clicking the comment link below. Thanks!

Hello Everyone

Just a quick update; Mandy is doing ok. She is still at the hospital. The doctors are waiting for the all of the testing results to come in. Apparently they actually have to collect samples and let them grow for a period of time to see if there is any kind of bacteria in there. They then should be able to identify what kind it is. They have already started her on antibiotics, so they should have a head start. They also did an MRI, but are still waiting for the official results.

Once these tests are complete, we will have a better idea of what kind of bug she is fighting. She is definitely fighting something. She was running a fever during the day shift. So that’s where we are at this point.

Teresa and I have learned a lot during this process about waiting on the Lord. With all of the different things that we have been through, we stopped asking the question, “when? “and started asking instead “What’s next?” How similar to our Christian walk. God doesn’t operate in our time. Instead he has his time frame. When we give up our preconceived notions about how long something should take and instead start trusting God and waiting on him to act, then it’s amazing how things start to work out. We cannot drop our guard though. Like Jesus said watch and pray that you do not enter into temptation. We must continue watching and waiting for our Lord to achieve victory for us. Another scripture that deals with this Is come to me ye who are heavy laden, and I will give you rest. But that rest starts with trust. Trusting him that everything is going to be ok, and that he will work everything out for our good.

Thank You again for all of the prayers. God is answering them. Have no doubt of that.

Love in Christ
Michael and Teresa Blaes

PS. Please feel free to share your thoughts by clicking the comment link below, even if you disagree with me. We would love to hear your insight and experiences.

PPS. If you have any prayer requests, please leave these as well.

Hey Guys

I have a major update……

Mandy is not doing too well today. We just got a call from the nurse, She was running a low grade fever Monday, and her oxygen stats dropped so they put her back on oxygen, and ran some blood tests. The results came back today, and she has some kind of bacterial infection in her blood. They don’t know what kind, it will take a few more days to find out what. She had also had an abscess on her tummy that tested positive for MRSA, which is a Staph infection that is resistant to Antibiotics.

So they have decided to transfer her back to the hospital in the PCTICU which is where she was before. They have to install a Pic Line and re-run all of the tests. It feels like a bit of  a setback She was doing so well. We saw the cardiac doctor Monday, and her heart is doing well. She still has two small holes in the heart, but the doctors expect these to close on her own. She was supposed to be transferred to the long term care facility today, so that we could go through the more intensive phase of our training of how to take care of her.  Obviously that’s not going to happen right away.

The thing that really stinks about this is that her insurance would help us with transportation to the hospital for training, but not for visiting her. So we are back to the whole trying to get around thing. We will make do, but it is pretty frustrating, not to mention expensive.

We will keep you informed as things develop. I know God has his hand in this

Love in Christ
Michael and Teresa Blaes

PS. Please feel free to share your thoughts by clicking the comment link below.

Hi Everyone,

I have another quick update. Mandy is doing really well. She is growing, wiggling, moving, crying etc just like normal baby does. I love saying that. There for a while it was touch and go. Many of our supporters around us were trying to prepare us for the worst, while hoping for the best. But when you are a follower of Christ, surrendered to his lordship, how can you possibly lose. We made the choice early on to totally give Mandy’s life and care over to God, and to take our hands off completely. It was easier than I expected. There is something about resting in your creator’s arms know that regardless of what is going to happen. He has everything under control and is working it all out for your good and his glory. I repeat, when you are in that position how can you possibly lose. Im reminded of one of my favorite scriptures.

All things work together for good to those who love the Lord and are called according to his purpose. Rom 8:28

So what our adversary means for evil and our destruction, God will turn the situation for our good. Glory to God! Thank You Jesus!

Forgive me for getting a little preachy. My heart is just overflowing with love for my heavenly father.

We spent a couple of hours at the hospital last night, working with Mandy. I changed her diaper, checked her temperature and cleaned the area around her G-Tube. I held her for a little bit until she started crying. I heard a little congestion, so I suctioned her, but she wouldn’t settle down., Then we realized that she was hungry, just like a normal baby, even though she doesn’t eat by mouth. We set up her feed, and she settled down and fell fast asleep.

You may be saying to yourself “Duh” but you have to understand that for most of her life she was fed through an IV or Nasal Gastric Tube. Most of the time she was heavily sedated, so we didn’t get to see her reaction. She just lay there and pooped, and slept. So it is so cool to see her express her needs. I learned some new things last night as well, including how to give her medication through the G-Tube.

Here are the plans for the next couple of weeks. Mandy has 3 Doctor’s appointments, and if everything goes well, she will be transferred to the long term care facility on the 23^rd. It will take a few weeks to get all of the resources in place, including home nursing, respite, etc. After that she will come home. I’m glad we have some more time to work with her, learn the skills that we need to know to take care of her, and get things ready here at the house. We have most of what we need, We just have to get it organized a little better.

Thanks for all the prayers,

Love in Christ
Michael and Teresa Blaes

PS. Please feel free to share your thoughts by clicking the comment link below.

Hey Guys,

It has been a really busy week and this has been my first chance to write an update. I apologize for that.

Mandy is doing great! She is growing like a little weed. It seems like every time that I hold her she is getting bigger. One really cool thing happened yesterday; I put Mandy in a swing for the first time. I wasn’t sure how she would react. At first she was a little fussy, and then she settled down and fell asleep. It was so cool to watch her doing something a “normal” baby would do. It is starting t feel like we are reaching the end of this part of the journey and getting reading to begin the next.

I have learned how to take out and replace her trach. It’s not as hard as I thought it would be. It is a little unnerving though, knowing that you have to get it back in place fairly quickly because it is her only way to breathe.

The doctors are weaning her off of the last of her pain medications, and the oxygen. If everything goes as planned, she will be weaned off about 10 days from now. Then they will want to watch her for a few more days and make sure that she is doing ok. After that she will probably be transferred to another facility.

Teresa and I want to make sure that all of the support Mandy needs will be in place, including equipment, long term care, home nursing etc. It will take 3-4 weeks to get everything into place. And the process cannot begin until after Mandy is discharged. So based on everything, it will probably about the first of June before she comes home.

Teresa and I are totally comfortable with the time table. We have some work to do to get ready ourselves, including taking CPR classes. Also we need to be completely confident with all the aspects of her care. We are still a little nervous about some things, especially the trach care. I for one want to do the change a few more times under supervision before I will totally comfortable with it.

Thank You for all your prayers and comments. They mean a great deal to us. It seems like just about the time that things get difficult, someone posts an encouraging comment.

Love in Christ
Michael and Teresa Blaes

PS. Feel free to share your thoughts by clicking the comments link below.

Hi Guys,

I have a quick update for you. Mandy is not feeling well today. She was a little fussy, and started running a fever and started throwing up and having some diarrhea. They are giving her IV fluids to avoid dehydration. They are going to stop her feeds, and run some tests to find out what is going on. The doctor said that it was probably some kind of an infection. He didn’t seem worried.

Please pray for her healing, especially that the fever will go down. We cannot really work with her right now while she is sick.

This new parent stuff is an absolute trip. You don’t think about all the things that can go wrong with a newborn, much less one who has been through as much as Mandy. But then you come across someone else who has it worse than you do. There was a parent we met whose 4 year old daughter is extremely sick, and has some brain damage as a result of high fever of over 107. They really do not know what is wrong with her. So I would like to request that we pray for her as well. Also pray for her parents, who looked totally exhausted.

 But he was pierced for our transgressions,
       he was crushed for our iniquities;
       the punishment that brought us peace was upon him,
       and by his wounds we are healed.Is 53:5Love in Christ
Michael and Teresa BlaesPS Please feel free to share your thoughts and prayers by clicking the comment link below. Thanks!

Hey Guys,

I have some good news and a huge favor to ask.

Mandy is doing great. They have transferred her to the transitional facility I mentioned in my last post. By the way the intensive was exhausting. 48 hours of non-stop beeping squealing and various other noises combined with suctioning and diapering left us drained of all energy. We came home and basically passed out for a while. We feel a little refreshed now. It’s amazing how much you miss the sanctity of silence. There is truly no place like home especially lying in your own bed. Our cat Blaze acted like we had been gone 3 weeks instead just 2days.

We start training tomorrow for 3 days a week 4 hours a day to learn all the skills that we need to bring her home. The case manager said it could be as early as 2 weeks. I got a little scared when she said that. I want Mandy to come home, but I now realize how much responsibility is involved, and we have a lot to do to prepare.

Now for the Favor….

Normally I would not ask for help. God has been really good to us and I believe that he will come through for us one way or the other.

I don’t want to make a big sob story out of this, but just to state the facts and express the need. With Teresa and I having to go back and forth to the hospital, we needed to have a laptop, so that we could be mobile and do things such as update the blog, and continue to work on our business endeavors etc. I used to have a very nice laptop with all the bells and whistles. But unfortunately it died and the company who made it went out of business. So we acquired one from a rent to own company and have been paying for it a week at a time. Well our funds fell short this week and I don’t have the money. I have to make a payment on it by tomorrow Wednesday March 26 at 4:00 PST or they will come collect it.

Our payments are 41 dollars a week.  We would like to pay it off on the 90 days same as cash plan so that we can save a significant amount of money on the purchase. We would have to have it paid off by April 13 in order to do this. We have already invested in a little over $400.00 in it so it doesn’t make sense to return it and look for another option. We need about $600.00 to pay it off completely. I don’t want to borrow money from anyone, and go further into debt.

I understand that we may not be able to raise the full amount, and that’s ok. As long we can come up with enough to make the next 2 payments (about 82 dollars); that will get us through till next month.

I feel like I’m stepping out on a limb asking this, but I don’t see any alternative. Like I said before, God has been faithful, and we know that he will somehow provide. I’m starting to learn to hit my knees first and cry out to him for help and I’ve done that. But I want to give God’s people every opportunity to bless and be blessed.

Please use the donation button on the right side of the page if the Lord lays it on your heart to help. Anything collected over the amount needed will go towards Mandy’s care

You may disagree with this approach, and I understand that. Please feel free to voice your thoughts by clicking the comment link below, and I will be happy to address your concerns.

Thank you for all the prayers and support. We could not have gotten this far without them.

Love in Christ,
Michael and Teresa Blaes

  Hey Guys

This is going to rather a long post, as I have a lot to say. So go get a coke or water, or the beverage of your choice, sit back and enjoy. J Mandy is doing really well, and is getting even closer to discharge. They are definitely going to transfer her to a transitional center for kids. The main purpose of this center is to train us how to take care of her.

There is a lot for us to learn, and learn it we must. To steal the military expression “Failure is not an option.” We will be spending a lot of time there essentially going to school for Mandy 101. It should be interesting. Obviously it is a very specialized course. J

The hospital has started the process by putting us through a 3 day intensive. We are staying at the hospital, and once again we are in fish-bowl central. But it is even a little crazier this time, because Mandy has been diagnosed as a staff carrier and so contact precautions are in effect. What this means is that any time the staff walks into the room to do anything, they gown up and put on gloves. No Bigggie Right? Here’s the fun part, and mind you I don’t blame them a bit. We are not allowed to go get sheets, cokes or anything from the “communal areas. We can still go anywhere else in the hospital that we want, so it is sort like being quarantined yet still being able to move around. Very Weird Right? We think so too.

Anyway, Teresa is taking Diapering and temperature Taking 101. I am in the more advanced class Suctioning and Secretions 201. So needless to say it is interesting. Because of Mandy not being able to breathe effectively by mouth, thus the reason for the Trach, She cannot for the most part effectively cough out the mucus, like most people can. So we have to use suction clean her mouth, nose and Trach. If enough mucus gets clogged in her Trach hole, it can block off her airway. So it is critical that we know what to look for and how to use the suction.

I did not realize how much care that Mandy is going to need. It is going to be a real test of our faith, and our ability to adapt. Mandy is going to need nearly constant care. There is a very real danger of her airway getting clogged, or mucus getting sucked into her lungs, which could cause her to develop all sort of infections. So we have to learn even such minute things as what color her secretions are. It is a little overwhelming to be honest, and we are not sure how we are gong to be able to do everything. It is going to really limit our movement. We were planning to go out of town in May for a few days for a workshop. Now we will have to figure out what to do.

As I said at the beginning there is a lot to think about. I know that we will prevail

Because “My God will supply ALL my needs according to his riches in glory in Christ Jesus” Phil 4:19. and ” I can do All things through Christ who strengthens me Phil 4:13 and All things work together for good for those who love the Lord and are called according to his purpose Rom 8:28. This is just the first step in rising up Mandy in the admonition of the Lord.

Please keep us in your prayers, especially for wisdom, and we can learn our lessons. After all the Holy Spirit has come to teach us all things Right? And maybe he will bring a few things to our remembrance as well. J

Feel free to share your thoughts by clicking the comment link below. We truly treasure each one.

Love in Christ
Michael & Teresa Blaes

Hey Guys,

I have some incredible news! Mandy is doing great! She is breathing on her own with just a little bit of oxygen for support. The social worker talked to us today about transferring her to a long term care facility. They have put her on the waiting list, and she could be moved as soon as a week. There the staff will train us to take care of her, which is one step closer to bringing her home  I thank you for your prayers. They are being answered so thoroughly, it is hard to believe at times. God is so awesome.

 All things work together for good to those who love the Lord and are called according to his purpose. Rom 8:28

Another really cool thing that happened is that Teresa and I were able to hold her today. (Check out the photos) We had tears running down our face, tears of joy. You see We have not been able to hold her for a long time. I think the last time that we held her was about 7 days after she was born.

She is officially 3 months old today, and it is hard to imagine everything that has happened within such a short period of time.  Her Birth, her first heart failure, which was the last time we held her,  2 open-heart surgeries, the three times her heart stopped and they had to do CPR and life support to bring her back. And numerous procedures, including installing her Broviac, her Trach, and her feeding tube. Man it has been quite a ride! And I know her life is just beginning with all of these happenings it really makes you wonder what God has for her to do. I knew that she was special long before she was born. (Of course I thought she was a boy at the time. It took a little bit to get used to the idea of having a little girl ) 🙂

God Bless You All

Keep checking back for more updates, or subscribe to the blog using the form on the right.

Love In Christ
Michael and Teresa Blaes

PS. Please feel free to leave your thoughts by clicking the comment link below. They have been so encouraging.

PPS. If you need prayer about something, please don’t hesitate to ask.Our faith has been built up trememdously through this experience. We would love to pray for you. Just leave them in the comment section.

PSS. We have some cool expansion ideas for this blog. Just wait and see!