Some Exciting Things

Saturday, January 31, 2009

Hey Everybody

Sorry we haven't posted for a while there has been a lot happening.  Since Griffin had his surgery on Wednesday, Amber let you know about his difficulty after the surgery and how he kept both us and the nurses on our toes.  Well since those initial moments of stabilizing after surgery he has leveled out significantly and steadily improved.  

Yesterday, which would have been Friday, they removed the tube that went down his throat and the ventilator that went along with it, which for us was so exciting because it was the first time since he was taken to the NICU that we have seen him without it.  Here is a picture of what he looks like without it.  He has what are called cannuals in his nose still helping him at this point.
It was also exciting because we were able to hear his little noises and grunts for the first time since he was he born.  The doctors and nurses have been so encouraging in telling us that he is doing really well.  

Now today they removed even more things and he is progressing very well.  They were able to 
remove the tubes from his nose and his chest tube, also they are continually weening him off of his medications and fluids.  Also a huge excitement was that he was able to eat some real food, not just IV fluids and nutrients.  Here are some more pictures of him from today. (you can see the incision on his chest)

It has been just a huge relief to keep hearing that he is doing so well and that he is strong.  We are looking forward to hopefully bringing him home this week.  We are just praying that there are no major setbacks from here on out. 

The tough part is knowing what the future holds.  This isn't the end, we have made it over the first big hurdle and now face two more surgeries over the next couple of years.  I think we aren't too afraid of what the future holds right now for two reasons.  First, we are just relishing in the fact that he is doing well and we will have him home soon, so there is no point in worrying about what tomorrow will bring for today has enough troubles of it's own.  Second, we have come to trust God so much throughout this experience that we can truly do what James 1:2 says and "count it pure joy when (not if) trials come."  Because we know that God is in control of it all and also that the trials themselves bring endurance and strengthen our faith.  
My prayers have centered only on a couple things over this past couple of weeks.  One that Griffin would be healed and the other that God would look beautiful, and wonderful, and compassionate, and glorious through this situation.  Many people ask "why does God let the innocent suffer?" or "how could God let this happen?"  I hope to show that God is infinitely loving, and infinitely wise and that nothing slips past Him, and even though I don't fully understand why this happened to us and to Griffin I can say the words of the great hymn "It is Well With My Soul."

One last thing and then I need to go to sleep.  Please pray for Amber, she is now starting to feel sick.  Pray she feels better because soon we will able to hold Griffin and I want her to be able to hold him and feed him.  Pray she doesn't get sick, thank you.

On the road of recovery...

Thursday, January 29, 2009

Last night we called the hospital quite a bit just to make sure he was stable.  They told us that his numbers had dropped twice, but each time because either he was come out of being sedated or because he had some secretions in his ventilation tube.  I never want to hear that his numbers went down, but at least when they did there was a reason behind it.  

I feel like last night was one of those nights where I had to regroup.  I think I just started to break because of the stress and all the emotions from the day.  John and I had a really good time of praying and giving everything back to God.  It is hard because I feel like I can get lost in the emotions and the lies satan tries to feed me.  There were just so many feelings of guilt for not always being at the hospital with him or not being with my kids at home or going to lunch and feeling normal for a few minutes while my son was laying in the hospital alone.  John helped me to realize those are not feelings from God, but all lies that satan wants me to believe.  So just having a time of prayer really helped to bring me back to the truths that God has for me.  I am thankful that God is so patient with me.  Now I am able to rest in the peace of who God is and the love He has for me.  

Speaking of God's love, we are so thankful that today was not filled with any down's.  Griffin was stable all day and they continue to ween him off his breathing machine and some of the other drips he is on.  He is still a bit on the puffy side from all the fluids they filled him with, but little by little he is looking more normal.  Grandma and Grandpa Hinger were able to come see him and hang out with us for a little while.  They have been amazing at helping us with our other kids and watching them all the time (thank you guys!).  As for Griffin, the nurses said that tomorrow they hope to take his chest tube out and possibly even take his ventilator out.  Wow!!!  It would be amazing if they could do all those things.  I try not to get my hopes up too much because you just never know what the doctors are going to want.  Another one of those times I have to trust that it is not my timing but Gods.  We just look at him all the time and are so proud that he is our son and we just love him so much even though we don't get to hold him or be with him all the time.  

Right now we are just praying that he would continue to recovery and that there would be no set backs.  We are also praying for boldness.  John and I were talking about it today, we don't want to leave the hospital without our nurses knowing our love for Jesus.  It is so hard because a lot of the time I am at the hospital I am always asking questions or just asking if they think he is going to be ok.  Not that, that isn't normal, but I want to be able to walk in a confidence that it doesn't rest in what they or the doctors tell me, but in God alone.  Not going to lie, not always easy when I am sitting next to my son with all these machines and tubes that I have no idea what they are doing.  But none the less, we just want to share with them where our hope lies.  

Thank you all for praying and the encouragement.  We love you all.


Wednesday, January 28, 2009

I can't even to begin to express the ups and downs of emotion that I felt today.  When we got to the hospital I was filled with excitement and then on the other hand I was trying to fight the fear that wanted to take over.  After seeing him for a while and having one of our Pastor's from church (Mike) come and pray for him, they came to take him away.  It was horrible to think it would be the last time I would ever see my little baby with no scars on his body.  But I could only live in the emotion for a few seconds because I knew that this scar brings us one step closer to him living a normal life.  I am not going to lie, there were some tears as they wheeled him out of his room and only an empty space where his bed used to be.  

We moved down to the waiting room to wait for news from the surgeons nurse.  About an hour later she came down and told us that they had started the surgery and that things were going well.  Again we waited for about another hour and she came back and told us that they were just closing him up and that things went really well.  We were so happy.  Then we headed up to the NICU waiting room until he was stable.

We waited with my mom and our friends Dan and Grace.  There was a joy that was felt in the room.  After a while John and I wanted to go and check and see how things were going.  Little did I know that the scariest moments of my life laid ahead.  When we entered the room the doctor was there along with a bunch of other nurses around him.  Griffin looked really puffy (which we were expecting) and then we looked at his numbers on the monitors.  The whole time he has been in the hospital I have tried to avoid obsessing over the numbers, even to the point where John would position my chair so that I couldn't see the numbers!!!  Anyways, we looked at the monitors and the numbers were horrible.  The main number that was bad was his blood oxygen level.  Normally they want him between 75 and 85 his numbers were going between 50 and 60.  There were times it would even dip bellow into the 40's.  The problem was that they just weren't going up.  They would go up for a min. and then go right back down.  This was happening for about a half an hour.  We just sat and watched as the doctors tried to figure out what to do.  You know it is bad when no one is saying anything and they just keep trying different things.  

I can't tell you how hard John and I were praying.  I just kept my hand over my face and prayed like never before, pleading with God to save my son.  Finally after they added a new machine to the mix his numbers started to go up!!!  It was the scariest half hour of my life.  The whole time I really felt a peace that Griffin was going to be ok, but I also knew that there were going to be some ups and downs in his recovery.  I am hoping this is the only down of his recovery.  I don't know if I can make it through another one.  Through this whole thing I have never felt the hand of God so close to me in my life.  At that moment I felt so helpless, but in that helplessness it showed me that God is the only one who is in control.  As a mom the thought of not being able to help my child has been one of my biggest fears of my life.  There was nothing I could do!!!  But God did something, this is exactly why I  cannot hold my children so tight.  No matter how much I think I am in control of taking care of my children it is God who is really in control.

Well I feel like I have just unloaded a lot of thoughts and emotions.  Sorry if it doesn't make much sense, as I said before, not much is making sense.  The only thing that is making sense is that God is in control not me, I can't believe that it has taken my son's life hanging in the balance for me to truly realize that.  

Thank you so much for your prayers all day.  We would still really appreciate your prayers during this recovery time.  He is doing well right now and we pray that it would continue.  Also pray for John, he is doing better (thank the Lord, I don't know if I could have handled it alone today), but he is still not full speed.

love you all.

Surgery is Finished

I am excited to announce that Griffin has made it through surgery with no complications.  We are waiting for them to get him settled back in the NICU before we can go se him.  But it's really exciting that everything went well.  Thank you so much for all of you who were praying.

I will post some pre-op and post-op pictures soon.

In surgery right now

Hey everyone, 

Just wanted to let you know that Griffin is in surgery right now as I write this.  The nurse has come out to tell us that he is doing well and they have already made the incision on his chest.  Next they will attach his subclavian artery to his pulmonary artery with a gore-tex tube which will help him oxygenate his blood without a dependancy on medications.  The surgery should be completed within the next hour to hour and a half. 

Please pray there are no complications and that he recovers quickly.  Thank you.


Tuesday, January 27, 2009

We just wanted to let everyone know that Griffin's surgery has been scheduled for 7 o'clock tomorrow morning. The surgery comes with such mixed emotions. In one sense we are excited to have so that we can start on the road to recovery, but then on the other hand the thought of my baby having to be cut open devastates me. It is hard to even rap my mind around all the emotions that flood my head constantly. The only thing that I can stand firm on is knowing that God is truly in control and that he loves my baby more than I do and that even through all the pain and tears God has a perfect plan. I think that has been the only way I have been able to make it through is to know that God was the one who knitted his tiny heart together and He knew what was in store for him. And that God knew this was the best possible plan for his life and ours. God is faithful no matter what, that is the only thing that holds me up.

We are so thankful that Griffin has been stable these past few days. It is just so hard to see him with all the tubes. He also scowls and shakes a lot from the medicine that is saving his life. The nurses keep saying that he isn't in pain he is just miserable, wow to a mom miserable seems like pain. uhh... all the emotions set me over the edge at times.

Please pray as John is still not feeling much better. It has been hard on the both of us. John is so frustrated not being able to take care of us and not being able to see Griffin. And then for me it is just hard feeling all the weight of it myself. Today I have not being feeling the greatest either. My mom is going to go sit with Griffin for a few hours in my place. I can't tell you how hard that decision was for me. The thought of not being there as a mom pretty much shatters my heart. But I know that if I were to actually get sick I wouldn't be able to be there for tomorrow or the recovery afterwards. Uhhh...I feel like my head is spinning with emotions so it is hard to keep or express a clear thought. I apologize if this is scattered or doesn't make much sense, not a lot is making sense these days.

Thanks again for your prayers and encouragement. We will let you know after the surgery is all over. Please pray that John will be well enough to go see him before hand.

Love you all.

thanks Emily for setting this blog up for us!!!!

My Frustrations His Faithfulness

Monday, January 26, 2009

Not sure if everyone has heard but Griffin's right lung has totally expanded and the atalectisis (partially collapsed lung) is completely cleared up. This is a huge praise report and a testimony of God's faithfulness. Now he is ready for surgery and we are still waiting to find out when the surgery is going to be. Please pray that we will get that scheduled soon so that we can continue down this road.

As most of you have heard i got really sick Saturday night. Fever, sore throat, chills, aching all over, etc. all your typical cold/flu symptoms. I am still under the weather and unable to go to the hospital to visit Griffin. This has been the most difficult part of this whole process, not being able to be by his side. As any parent would, my desire is to be by his side and never leave. Having the nurse tell me to "stay away" brought an instant flood of tears and a feeling of complete helplessness. It has caused me to look to the Lord even more so and trust in him. I have had a realization that ultimately Christ is the centerpiece of our family and not me. I am completely dependent on Him. It has also been very difficult for Amber being the lone support for him and not having me there. Please lift her up in your prayers that she may have strength and peace while I am recovering.

It has been a huge blessing to see how many people have written and said that they have been praying. Even though I can't write back to each of you individually please know that with every note comes great encouragement for both Amber and I.

Isaiah 41:10,13 says "fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand....For I, the Lord your God, hold your right hand; it is I who say to you, 'Fear not, I am the one who helps you.'"

I am so thankful that I can have hope in a God who is bigger then any situation we face.

thank you all

John is Sick

Sunday, January 25, 2009

Well I got some good news this morning and some bad. I woke up to a sick husband this morning. We are calling the doctor to see if we can get some antibiotics because we think John has strep throat. Uhhh...I am not going to lie the thought of John not being at the hospital with me is hard to swallow. I know that I need to God's strength because I can't bare this weight alone. I just keep praying that John can start to see an improvement in the next day before we have surgery. Please pray that John will make a quick recovery as him being sick is really hard for both of us. And that God would give me strength to take on the day. I will be going with my mom to the hospital today and I just pray that there would be nothing major today. Also please pray that I can stay healthy.

With Griffin there was so great news. His chest x-ray came back totally clear. Thank you Jesus. I think God knew how much I could handle. So right now he is really stable. We should find out tomorrow morning when they are thinking of scheduling his surgery. We thought it might be Mon or Tues. but our nurses keep telling us they think it will be more like Wed. Now we just need to keep him healthy until then. It is hard because my first thought is I just want to rush the surgery as soon as possible, but then I have to bring myself back and know that God has the perfect day for him already mapped out. I have to rest in God's will and timing. I know that He loves Griffin so much more than I do. So please continue to pray that he would stay healthy and that surgery will come soon.

Thanks for all the encouragement and all the prayers. I can't tell you how much it means to us to know that people are praying for our sweet little baby.

Love you all.

Please Pray...

Things have been stable for Griffin this past day so we have been very thankful for that. He is getting an x-ray on his lung tomorrow morning and we need it to come back clear. All the nurses seem to think that it sounds really good and should come back clear, but we just don't know. We need it to be clear so that it doesn't keep us from getting his surgery.

Also please pray for John he is feeling as though he is starting to get sick. His throat is really soar and he is starting to get stuffed up. Uhhh.... I don't know if I can handle the thought of John not being able to come to the hospital and he would be heartbroken if he couldn't come see Griffin. We have given him tons of things to take tonight before he went to bed and we just pray that God would heal his body by the morning.

I know that God is bigger than this both these situations and that is pretty much the only way I am handling them. To leave the hospital is almost unbearable but I know that Griffin is resting in God's arms. We just love him so much and can't wait for the day that we can hold him and bring him home. I just keep praying that i will remain faithful and put my trust and hope in him.

thank you to all that have been praying for our sweet baby boy. We will trying to keep updating as much as possible.

We love you all.

Update on Griffin

Friday, January 23, 2009

I wanted to say thank you to all who expressed your love and prayers for us and for Griffin. I was journaling in Griffin's baby book and documenting everything up to date and thought I would type it out so that everyone could have some some insight on how he is doing and what exactly is wrong. It is pretty meaty with medical terms but it helps explain what he is going through and keep in mind I was writing it as though he will read it some day.

"...when you were born there no problems or complications, you came out quickly and began screaming as any other child would. You had a nice head of hair and, according to the nurses, looked a lot like me (i hope that's a good thing). Mom and I were excited and in awe of God's grace as he gave you to us. Over the next 24 hours things took a turn for the worse, you began looking very blueish and purpley (not really words but who cares). They (the nurses and doctors) said it was a result of bruising from coming out so fast, and also circulation, which in infants it is sometimes common for their limbs to be slightly discolored as the blood stays closer to the vital organs. They gave us the all clear to go home after you were 24 hours old, but thankfully mommy didn't want to leave and kept asking about your coloring. The nurse said she would check you blood oxygen levels so we could all be at ease and just go home. When she checked it, however, it was very low, less than 50, when it's supposed to be around 95-100. Immediately they took you to the NICU and put you on 100% oxygen to raise your numbers up, but it didn't work right away. This made the doctor think it was either a lung or heart problem. After some tests they felt it wasn't the lungs but the heart. The doctor quickly diagnosed that your heart wasn't working properly to get de-oxygenated blood to the lungs. This meant your body was circulating dirty or 'blue' blood which is why your color was so blue. Thankfully he knew of a way to get blood to your lungs so they could do their job of oxygenating. It was through a little duct or tube called the Patent Ductus Arteriosus (PDA) it's a natural tube that joins your aorta and pulmonary artery and is utilized in utero when you don't use your lungs to receive oxygenated blood. When you're born that duct is still wide open and it naturally begins to close as the lungs take over, which explains why it was a gradual process of you getting worse after you were born. What the doctor did was give you some medicine (it's called prostaglandin for all you medical buffs) which helped to keep the PDA open allowing some of your dirty blood to get to the lungs and become oxygenated. This was great because it helped stabilized your numbers and you were pink again. However this medicine has a known side effect of causing you to stop breathing.  So what they did was put a tube down your throat and hooked you up to a respiratory machine which helped maintain minimum amount of breathes per minute.  So far you have been able to breath over the machine and have not needed it to make you breathe but it has been a huge help.  After being stabilized we had to transfer to another hospital where there was a well known cardiologist that would be able to look at an ultrasound of the heart (echocardiogram) to determine what exactly was wrong with your heart. What he explained to us was that you had a frog heart where you only have three chambers instead of four. Your right and left atriums (the top two chambers) were perfectly fine but the right and left ventricles were combined into one which is called a ventricular septal defect. On top of that you have a pulmonary atresia which means your pulmonary artery is not connected or is blocked form the right ventricle....'

we now take a short break for Anatomy class.
Just as a little lesson as to how the heartworks. Blue, or de-oxygenated, blood first comes to the right atrium via the superior (top) vena cava and the inferior (bottom) vena cava. Once it's in the right atrium it moves to the right ventricle, when your heart beats it pumps the blue blood from your right ventricle to your pulmonary artery sending it directly to the lungs. Once the lungs oxygenate the blood it is sent back to the left atrium. From there it is sent to the left ventricle which when your heart beats pumps clean or 'red' blood through the aorta to the body.

'...since your ventricles are combined and your pulmonary artery was blocked your blood would mix in the ventricles and nothing would go to the lungs and all would go to the body via the aorta. This is a problem because all your doing is circulating dirty blood which causes every organ to suffer and eventually die unless this problem is fixed.So how do we fix it? Well you can't just go into the heart and create a division between the ventricles because that division called the septum is actually muscle which contracts and pushes every time your heart beats and there is no material that can mimic that. So what will happen is you will go through three heart surgeries; the first, called a BT Shunt, will be in the next few days, the second called a Glenn Shunt will be when you are 3-6 months old and the last called a Fontan will be when you are 2-4 years old. The first will be a surgery that will go through your armpit and copy the PDA and allow a mixture of blood to get into the pulmonary artery and sending it to the lungs. This will only last for a short time because they are going to use a gore-tex tube (yes, like a really expensive ski jacket) to attach the subclavian (the main artery to the head and arms) to the pulmonary artery (the one that goes to the lungs) and it will not grow as you grow which is why you'll have additional surgeries.  The second two will be open heart surgeries that will first attach the superior vena cava to your pulmonary artery and the inferior vena cava to your pulmonary artery.  This will completely separate the blue blood and red blood so that it won't have to mix to try and get to the lungs. Once the third surgery is done you should be able to live a normal life only needing a few long term medications.  What i really need is a diagram to show you what this all means but i don't have that right now and maybe i can show you later...."

As I said before, thank you for all of you who have been praying. It means the world to us. God has been very faithful to us in the midst of this emotional time. I will leave you with the verses that have brought us comfort in this time 

Psalm 139:13-14 For you formed my inward parts;you knitted me together in my mother's womb.  I praise you, for I am fearfully and wonderfully made.Wonderful are your works;my soul knows it very well. 
Colossians 1:16-17 For by him (Jesus Christ) all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him. And he is before all things, and in him all things hold together.  

What is so encouraging is that God was the one knitting Griffin together in Amber's womb.  This isn't a surprise to him, he is not saying 'oh shoot!' or 'oops!' he is saying 'I have created Griffin out of love and I have a purpose and a plan for him.' That is the only way we can have hope in this time as we watch his face grimace in pain and see him hooked up to so many IVs and machines. My prayer is that God looks beautiful in the midst of this, and that i can be alight and encouragement to those around us in the NICU who are going through equally if not more traumatic situations.Please continue to pray for safety for his upcoming surgeries. I will find out today when exactly they will be.

God Bless,

hinger happenings