Wednesday, December 31, 2008

A Turn for the Worst

Samuel is not well. He is very sick. His brain has not recovered. The only brain activity he is having is from seizures. It is really sad. He is just starring off into space and not responsive to anything. His little body is so limp and swollen. He is on a small amount of pain meds, but is still just out of it. At first he was breathing on his own, now he is hardly breathing on his own at all. Please just pray that the Lord will take him home tonight. I can't see him like this anymore. My heart is aching. I hurt so badly. We don't want to have to make the decision to take him off life support. So, please just pray that God will take him. This sucks. This is hard. I am struggling to function. My heart just hurts so much. I feel plagued with sadness. Give us peace O Lord. Give us peace. Please let our sweet baby boy be with you Lord, let him sit on your lap, let him laugh, let him run, let him be free of all these tubes, God we plead with you for your mercy on him.

Deep Sadness

This is Kristy. Well, Samuel is doing ok...just ok. I talked to the nurse this morning and she said he had an "ok" night. My heart is sad. I hate to see my little baby suffering like this. It is hard to understand why this had to happen. But, again, that is where I just have to continue to trust God and know that he is in control. The doctors have yet to find out why this happened, but they just keep saying, "this was a very bad thing to happen". Samuel was without a heart rate/oxygen for 32 minutes (if not or more). As soon as Jeff came up to get me that morning I began CPR to a lifeless little Samuel lying on the floor. He didn't respond. Then 911 arrived and took over...with no success. They said that 2 minutes into the ride they got a pulse. That is a really long time to be without oxygen. The big concern is the damage that was done to his brain. Not only did he already have little brain, but what he did have has been damaged. Yesterday they did an EEG (brain scan) and determined that there was very little brain activity. When this test was done previously it was determined that he had normal brain activity. This is very dishearting. It feels like the chance that he had has been smashed...but I will never give up hope. But I think hope is wishing for the best for Samuel. I feel torn at what to pray for. I want to pray that he gets better-that his brain/organs recover, but at the same time I want to pray that he will stop suffering and just be with Jesus. That is why I just need God to make that decision very clear-that He makes that decision. Please pray for that. Our hearts are heavy. Our sadness is great. It just doesn't make sense, but sometimes life just doesn't make sense and we just have to accept that.

Tuesday, December 30, 2008

Please Pray...Another Scare

This morning Samuel stopped breathing and his heart stopped. They began doing CPR but it was not working. The Ambulance arrived and continued CPR. Two minutes into the Ambulance ride they got his heart rate up but he was still not breathing on his own. He is at the hospital right now…they had a difficult time getting his temperature up but they got him stabilized. Kristy said that he is still not breathing on his own. She was also concerned about the extended amount of time Samuel was without a heart rate and oxygen and how this might affect him. The doctors are uncertain what caused him to stop breathing…maybe a virus or something neurological. They are going to keep Samuel in the hospital for a couple of days. Praise God that Mark and Isha are out with them right now. Continue to lift up the blessing that is Samuel in your prayers as well as Kristy, Jeff, Dawson, Mark and Isha.

Friday, December 19, 2008

911 is our friend again.

So, last night was an eventful night-at least for Jeff. Let me tell you the story. Firstly it is important to know that Dawson and I were out to eat with some of my friends. Jeff was at home with Samuel-he was suppose to be getting some early shut eye. Well, Jeff said he had just fallen asleep when the monitor starting beeping. He looked at it and kind of shrugged it off as the monitor going "crazy" (sometimes the monitor just doesn't pick up). But, it keep going off, so he turned on the light and Samuel was blue and frantically struggling. Jeff freaked out, but managed to call 911. Samuel's saturation was 38 and his heartrate was in the 50's (it is normally around 130). The 911 dispatcher told Jeff to start CPR and gave him step-by-step instructions. Jeff said that when he started breathing into the trach he noticed the air wasn't going in. Jeff then made a fast decision to change out the trach. As soon as he switched the trach Samuel's stats went up and his color returned. Thank God! Then the emergency crew came in, but Jeff had already saved Samuel's life. They assessed the situation and felt comfortable leaving Jeff and Samuel home. My neighbor came over too because she saw the ambulance and held Samuel once he was stable-thank you Bec! Well, when Dawson and I came home, the situation was under control. Jeff did an amazing job. I am so proud of him. He literally saved Samuel's life. If we didn't have the monitor, then Jeff wouldn't have known Samuel was struggling. Jeff acted instead of reacting. Good job honey! Wow. God really wants Samuel here. Thank you Jesus! Oh...the reason this happened was because Samuel's trach was clogged with a mucus plug.

Please pray that this doesn't happen anymore. We increased his himidity and heat on his mist collar to hopefully prevent this from happening again. But, if it does (which it probably will)- pray that we can act quickly.

Tuesday, December 16, 2008

A week of being home sweet home.

Sorry it has been so long friends. We have definitely been busy. Samuel is keeping us on our toes. It has been such a blessing to be in the comforts of our home. At times it is a little scary not having a nurse here 24/7, but we are learning to be calm and utilize our resources. This is definitely the hardest thing we have ever had to do in our lives. Samuel requires a lot of care and time. We are just trying to adjust right now and get a routine-so it is pretty hectic. It feels like the days never end. I personally dread the night-I feel like that is when we are really alone. But despite our lives being turned upside down, we are coping and Samuel is doing amazing.

Today Samuel had his check-up. He is now 7lb 5oz. Go Samuel! The doctor increased his feedings. He still seems so tiny to me. The doctor is pleased with how he is doing. She doesn't think that Samuel will continue to need oxygen. But when he can be weaned from it we are not sure of. Samuel will continue to have doctor appts weekly. Before we left the hospital I had to schedule 10 appointments! Last week we had three appts. This week only 2. But the week of Christmas, I think we have 4! Busy Busy Busy.

Dawson is being a crazy wild man-as always. He is such a boy. He has been having a hard time adjusting to having to share attention with Samuel...he will get used to it (hopefully). It is also hard for him because he is so used to going out with me every day. Well, we just can't do that anymore. Once Samuel gets stronger and the weather gets warmer, we will be able to get out more...but in the mean time, I have to learn to be creative and do stuff in the house. Although Dawson can be crazy, he is also the sweetest little boy. He loves to kiss Samuel and tell him, "I love him all the time" and "he's so sweet". Gosh I love that kid!

On another note-our dear friends Rick and Amy are here visiting us. What a blessing! Today they have been watching Dawson while we had some running around to do. I am sure Dawson is enjoying the attention. They are still out and about, so I am sure he will be wiped out when he gets home. Good for us!

Oh. We are open to visitors if anyone wants to come over-just call. But make sure you aren't sick. Thanks.

Wednesday, December 10, 2008

Ambulance Ride #2

What a long morning! I am so tired, so I will make this quick. This morning Samuel's oxygen saturation dropped in the low 80's. He should be above 90. Again, to make a long story short-we called 911 and he was taken to the hospital. They assessed him-chest x-ray and RSV culture. Both were fine. He had some thick secretions...but even after suctioned his oxygen saturation was still too low. They decided to send us home with oxygen and have Samuel on it for some time (not sure...week, weeks, months...?). Our primary doctor will be following him now. They think it could just be an adjustment to the new environment (outside the hospital). It was definitely scary, but I think we handled it well. Jeff and I are both sleep deprived and it shows. Samuel is doing well. He has been 100% oxygenated and will continue on his oxygen until further notice. Hopefully, this will just be a little bump in the road.

Monday, December 8, 2008

He's home!!!!!

We got home around 2:30. Samuel has been sleeping most of the time and has been doing very well. The car ride home went very well. Daws spent most of the time holding Samuel's car seat to make sure "he's ok." We met with our home medical equipment guy to set everything up and we also met with the home nurse. We've got "check nursing" which is where she just stops by once a day in the morning to see how he's doing. We have appointments with 9 different doctors over the next couple weeks.

Leaving the hospital today was a mix of emotions. We were definitely excited to leave, but sad to leave all the staff that has helped us to get to the this point. We were blessed with an amazing team that fought this journey thus far. Thank you Memorial Health Care Team! They all have been part of our lives for the past 6 weeks. It was hard to leave them...but at the same time, it was like a sweet victory! We are still just in awe that Samuel is home. Samuel, our little baby, that "had no hope" is now sleeping in his little bed in his little room in our home. Wow!! God is so good.

We have a lot of adjusting to do. Please pray for us. It is going to be hard and challenging, but definitely worth it. Dawson is having a hard time as well. I assume this is normal when a new baby comes home, but Samuel requires a lot more attention than a "normal" baby. With that, just pray we find a way to balance things out and still give attention to Dawson. Also pray for Jeff and I-it is going to be stressful.

Oh...and when we came home today, my bible study wonderful ladies had put a sign on our door with ballons saying "Welcome Home". Welcome Home... can you believe it? Thank you girls! Thank you God. May God continue to be glorified!

Sunday, December 7, 2008

'Twas the night before

Kristy and I stayed with Samuel the past two nights and the first night was really rough - he didn't sleep at all. The nurses told us that this is common because babies don't adjust well to new environments. He did much better last night, sleeping most of the night.



We are wiped out and got little to no sleep Friday night and a decent amount last night and things are hectic getting the house ready for him. Our neighbors truly are a blessing and watched Daws for two nights, cleaned our house, did laundry, made us meals and many other things that helped a bunch.



The game plan for tomorrow is to arrive at the hospital at 9:00 and then go through the discharge procedures. If there are not many new babies in the NICU keeping the docs busy, it should go relatively quickly. We then meet the home health care guy at our house to make sure everything is set up correctly. There is also no nursing care set up, so we are a bit nervous about that. Kristy loves to get Daws out of the house as much as possible, and a nurse would help make that more possible. So let us know if you know a nurse looking for a job :)

Tomorrow is Day 45, and we finally get our son, and all four of us can sit at the dinner table as a family.

Please pray that the transition goes smoothly.

Wednesday, December 3, 2008

The day that would never happen

Samuel is experiencing circumcision on the 40th day instead of the 8th (please see Genesis 17) today and we hope that goes well. He has been doing great and loves to be held and cuddle. The hospital actually has volunteer cuddlers that hold him while Kristy and I can't be there.
I had the privilege of doing the "car seat walk" yesterday, which is where they check the car seat to see if it is compatible with his trach and him reclining enough. We are doing overnight stays on Friday and Saturday night where we are completely responsible for his care for 48 straight hours, and he'll be coming home after 45 days.

The day that would never happen is happening on Monday. We thought that his homecoming would be the heavenly type, but now we are truly blessed that he will be coming home with us on Monday. God is good and we have already experienced more than we could have imagined.