Precious Baby

Samuel is doing well. He has been needing some pain meds and valium lately. We think it is because of the new shunt-probably a change in pressure causing headaches. We hope to wean him soon of the meds. He is definitely a wild little boy-like his big brother! He really hates when we suction his mouth out. We are beginning to learn his likes and dislikes. Oh yea, he really doesn't like a dirty diaper. It seems as quickly as he pumps, he is ready to get a clean diaper on. The plan is still to take him home Dec. 8th-maybe earlier??? Jeff and I still have to do 2 overnight stays before he can come home and we need our equipment too. Oh, I can't wait for our little baby to come home.

We had a great Thanksgiving this year. Jeff's mom, dad, and brother (tim) came out. It was nice to have family here. Jeff's mom and dad got to hold Samuel today. I am so thankful that they got to meet our new bundle of joy. We hope to have family out for Christmas as well.

We want to thank everyone for your support, love, prayers, meals, and so much more. I know I haven't got thank you cards out, but please know that we appreciate everything you all have done. Thank you again!

#5

Samuel had the shunt placement today and the surgery went really well with no surprises. He has been really alert and awake the past couple days and did not even have to go on a vent after his surgery (which he has needed for the past 4). Now it is just a matter of him getting stronger and us learning to change the trach and take care of him. We have to do two overnight stays at the hospital where we are entirely responsible for his care (with nurses watching through the window of course). We are on track for discharge on the 8th and are praying that all will go smoothly for the next 11 days with no infection or complications. We cannot wait to see what God has planned for this little guy and we are just excited to be a part of it.

Thanks for your thoughts and prayers.

New Shunt Today

Hey everyone. Samuel is having surgery today. He is getting the external shunt removed and the internal shunt put back in. Please pray it goes well and that he doesn't get an infection. Shunt are known for getting infections and for malfunctioning...pray that this does not happen! As we all have witnessed, God is Big-way bigger than we can ever imagine. Let us continue to pray big for Samuel-because God is listening. Let our Father be glorified!!

Are Miracles becoming common?

Samuel celebrated his 1st monthday today and had a CT scan to look at the amount of brain that has developed. The neonatalogist grabbed me as soon as he saw me and asked Kristy and I to come with him to look at the CT. He said he has never seen anything like this before and used words like amazing and phenomenal. This is also the same doctor that was using the word vegetative three weeks ago. Samuel had .5 cm of brain matter around the rim of his skull before the shunt and he now has 2.25 cm. He also has an almost complete forebrain and almost all of the right side of his brain and is missing a portion of his left side. He will be taken off IV nutrition tomorrow and feeding entirely off of Kristy's milk. We are hoping that he can have the shunt placed on Friday. God is good.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever. Eph 3:20

Care Conference

We had our care conference today and sat down with the whole medical crew to talk about his discharge. The neurosurgeon would like to place the shunt back in his brain on Tues or Wed, and as long as that goes smoothly and the feedings go well, we can expect him to come home on the Dec 8th. Kristy and I will have to do at least 2 overnight stays in the NICU where we will completely oversee his care. The discharge coordinator is also setting up home health care for us as well as a medical equipment provider. We are very excited and praying for smooth sailing from here on out.

I often struggle with what God is trying to teach us through Samuel and came across John 9 when the disciples came across a blind man and they ask Jesus who sinned, this man or his parents? (As if God was punishing this man because of his or his parents action.) Jesus answered, "Neither this man nor his parents sinned. This happened so that the works of God might be revealed in him." - He then went on to heal him and the man testified before the Pharisees of how Jesus healed him. Our hope for Samuel is the same - that God will use him for His glory in some way. We have no idea what God has planned for us, but we will seek to learn from Him.

On another note, Kristy's brother Kevin and his wife Katie have been looking into adoption for a while and got a call from Kristy's friend Melissa, who is an attorney. Long story short - Melissa came across a child today that was born on 10/23 and he mother wants to give him up for adoption. He is staying with Kevin and Katie tonight and the mother has agreed to give him up to them for adoption. An instant answer to many prayers in a very unexpected way.

Surgery Went Well

Surgery went well today and Samuel is in recovery. He now has an external shunt until the infection clears and the neurosurgeon will then put another shunt in as early as next week or as late as 2 weeks. He cannot come home with the external shunt in place.

They will start feeding him later today and we are praying that his stomach will tolerate the new set up and do well.

We also got the results of another ultrasound on his brain and they discovered that he is missing a septum pellucidum, which may cause some endocrinal malfunction. I copied the info below from Wikipedia:

"Absence of the septum pellucidum, caused by mutations in the HESX1 gene, is associated with septo-optic dysplasia. This may result in hypothalamic dysfunction and hypopituitarism, as well as problems of vision, coordination, and intelligence, among other abnormalities. One famous reference to an abnormality of the septum pellucidum would be the movie Rocky V. In the movie, the main character Rocky Balboa is forced to retire due to brain damage sustained throughout his career." (I had to keep the Rocky reference in because we have jokingly been calling Samuel Rocky Balboa because he has such fight in him)

We were hoping that the ultrasound would show how the brain tissue is growing, but they did not look for that in this ultrasound. We also have a care conference on Friday which is where all of the doctors and discharge coordinator, etc, sit in a room and we talk about Samuel's course of treatment and the discharge process.

Another Surgery

We met with the neurosurgeon this morning and he is going to remove the infected shunt tomorrow morning at 9:30. He will replace it with a tube that drains externally to a bag so they can monitor the spinal fluid for infections. This will be in place for anywhere from 5 days to 2 weeks until they feel that the infection has cleared. He will then put a shunt in his left side, so Samuel will have matching scars. This also backs up Samuel's discharge date so he will not be home by Thanksgiving like we were hoping.

His stomach seems to be doing well and we are going to start feeding him small amounts a day or so after surgery. Hopefully he will tolerate the feeds well and he will be off the IV nutrition 4-5 days after that. Please keep the surgery in your prayers.