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.

A Rocky Road

Today was filled with more rocks in the road-Samuel's shunt is infected. It is either menigitis or a staph infection. The neurosurgeon had come in the morning and did a shunt tap (pulling some fluid out of the shunt). Now, this means that Samuel has to have additional surgeries. First, he will have the shunt removed and placed externally. This means he will literally have the fluid draining into a bag. Then, once he has recovered from the infection, he will have a new shunt placed. Today was the first day that Samuel actually looked sick to me. It was an emotional day. Some days I just feel like I can't deal with all this. I am emotional drained. Jeff and I just wonder what God is doing. I really had to cry out to God today-Jeff and I need clarity and wisdom in our decisions. It is hard not to be frustrated with God, but despite being frustrated we are still trusting Him and His plan, but it would be nice to have a little bit of relief-some things to come "just as planned", but I guess life is not always like that.... So, please pray for strength and energy for Jeff and I. And also pray for healing for Samuel. Pray that his little body will fight off this infection. We are not giving up hope on this little man!

Curve Balls

The neonatologist said: "He keeps throwing us curve balls." They set up a plan for him to come home, then we keep running into complications. Samuel has an ulcer that is bleeding through the tube that drains out of his stomach. This is something to be concerned about, but it can be treated with meds. We are going to start feeding small amounts on Tues or Wed, and he will hopefully be back up to the full amount (2 oz every 3 hrs) within 5 days. He cannot come home until we reach this milestone.

The major thing that we are concerned about is that the incision for his shunt is leaking spinal fluid. The neurosurgeon is going to look at him in the morning and it could be as easy as stitching up the wound again, or as complicated as replacing the shunt. There is also a risk that he could get an infection. The docs have also stopped giving us an expected date for him to come home because of these complications. Please keep these things in your prayers.

Peace

Samuel has been resting peacefully all day and has shown no signs of infection or a fever, which would indicate that his stomach is dying. The surgeon stopped by a couple of times to check on him. He said he has never seen anything like this in his 20 years of practicing medicine, but we seem to be hearing that a lot, and Samuel has been beating all the odds thrown at him, so we have peace about it and feel that Samuel will recover. They are keeping him off Kristy's milk for at least 5 day to allow the stomach to heal, so he is getting IV nutrition. I realized how amazing Kristy is when she told the surgeon not to worry about Samuel and that he's a fighter and would come through this ok.

We also had a huge blessing today as Samuel had a hearing test and he only has mild to moderate hearing loss. The doctors were concerned that he could be totally deaf. He will have to have hearing aids until he is 6 or 7, and then they can do a surgery to open up his ear canals. This will also affect speech, but for a kid who was given no chance of surviving, we're quite happy with that outcome.

Many people have been asking us how we are getting through this and the answer is simple - we gave this all to God back in July. We realized that we could not handle this on our own and we have put God in control. We're just along for the ride. If God takes him tomorrow, we'll have total peace, we'll be extremely sad, but it was God's plan. Our hopes and prayers are that Samuel will run and play t-ball and graduate college, but we will love him and take care of him all the same no matter how he turns out. This is going to be a huge trial in our lives, but God is bigger than this and we need to view these times as light and momentary troubles. We look forward to seeing what we can learn from this precious gift. Thanks for your prayers.

Uncertainty, yet again.

Today, Samuel had his g-tube/nissen surgery. It didn't go as smoothly as expected. The surgeon said that when he split the vessel in the stomach that it turned a grayish color-which is indicative of lack of oxygen/blood. To say the least...if the stomach doesn't get the blood supply back... Samuel may die. So, again, we just have to wait and see. Of course, this makes us question our decision to have the surgery. But, we just have to trust God, and trust that He is in control-ultimately He makes the calls. Please pray for Samuel's stomach to get blood supply. Pray for us during these stressful days ahead.

One Step Closer

Today we met with the plastic surgeon and he seemed very optimistic and thought that we could fix Samuel's lip in about 10 weeks and his palate in about 8 months, which is normal for babies. We also met with the geneticist from Denver Children's who wanted to see Samuel. He thinks that he may have Goldenhar association, but it is not know which genes form incorrectly with GA, so there is no test for it. They make the diagnosis based off of Samuel's features - all chromosome and gene tests have come back normal.

Samuel is also getting a feeding tube placed into his stomach tomorrow at 11 am and they are also doing a procedure that will prevent acid reflux. We also asked the surgeon to perform a circumcision while he's on anesthesia. If all goes well, Samuel could be home in 1-2 weeks. There is a lot of preparations and learning that we need to do on our end, so please keep that in your prayers.

Our biggest concern is Samuel's brain. The doctors seem concerned about the amount of brain that has formed and our prayer is that it continues to grow and adapt with the pressure relieved over the next couple months. (Babies brain continue to grow over the first months of their life) Please keep this in your prayers, God has given us the technology to fix many things, but only God can make his brain grow the way we'd like it to. The doctors seem to prepare us for the worst case scenario, but the geneticist told us today that Samuel has an amazing will to live, and we believe that same spirit will keep him fighting. Thanks for your thoughts and prayers.

So good!

Samuel is doing amazing! He is slowing being taken off some of his tubes and other connections. Yesterday was his first full day off the vent and he did super! He actually seems so much more content and relaxed with the vent off. Now he is just on a mist collar (like a humidifer directly over his trach). He was have to wear the trach collar whenever possible. It is to help with keeping his lungs/throat mist. He is also off all pain meds right now. Yipee. Not to mention we have been blessed with the most amazing nurse, Nancy. Nancy has been with us since we got to the hospital. So, she knows Samuel and does an excellent job caring for him. I trust her completely. Praise God! Samuel's volume of food has slowly been increased. He is starting to reflux a little, but not too bad. He is at an increased risk of aspirating because of his trach. Oh and yesterday our nurse put clothes on him-it was so cute. Jeff said his pants looked like MC Hammer. We have also been able to hold him now. So exciting. Mamaw even got to hold him. We are still trying to figure out his likes and dislikes. Well, that was just a quick update. But both of our boys are pretty amazing and pretty strong. Thanks God.

Some good and some ok

This is Kristy. So, some days are good and some days are just ok. Today was ok at first, then turned out to be much better. When I went to the hospital this morning, Samuel was very "out of it". I asked the nurse on duty why he was so sleepy and she said the night time nurse gave him a valium every 2 hours. I was furious! He doesn't need it that often...maybe every 6 hours, but not every 2! Stuff is now starting to get harder-emotionally. I want to be able to trust the nurses and feel confident that they are doing the job they are suppose to...but frankly I don't always feel that way...and it is very unsettling. I just feel that some nurses depersonalize too much and lose that caring, nurturing attitude. It is hard not to be bitter or frustrated. Please pray that I can be an advocate for Samuel and stand out and say things when necessary. Anyway, this morning Samuel needed a lot of care-he needed an IV removed, a new one put in, and just a lot of other care. Needless to say, Samuel didn't like all this, and was very frustrated. It was so hard for me to see him that way. I can't hold him, I can't hear him cry, I can try to calm him, but it is hard to do...I struggle because I feel like I can't be his mother the way I want to be. So, I had to leave and take a walk. I needed to cool down. My emotions are high and it hurts so badly to see my little beautiful baby that way. But... when I came back, he was so cute. As soon as I walked in, he opened his little precious eye and looked at me. He just locked eyes with me. I held his teeny hands and just talked to him and stared right back at him. I thanked God for a wonderful moment with Samuel. I needed a moment of encouragement and God gave it to me-he knew just what I needed. So, I left after 7 hours at the hospital, with a renewed spirit of hope.

A Long Road Ahead

(This is Jeff) Samuel is doing very well with the trach, but is heavily sedated until Wednesday because they want to limit his movement to prevent him pulling on it with his hands. It is very hard for Kristy and I to see him like that, but we know it is for a better outcome. They are also increasing his feeds of Kristy's milk and decreasing the IV nutrition. In order for him to come home, Kristy and I will have to be able to completely care for him and be able to change out his trach. I am rather squeamish and the mere thought of doing that makes me shudder, so prayers will definitely be appreciated. He will also need a feeding peg near his belly button that will put the milk directly into his stomach. Burping him will involve suctioning air out with a syringe directly from his stomach. We could not wait for the day that Dawson stopped crying in the night, and now we hope for the day that we can hear Samuel cry. His airway is completely obstructed and it will require him growing and several surgeries before he will ever be able to use the airway or swallow. We got the result of the EEG and he does have electrical activity in his brain, which is a great sign, we pray that more brain tissue will grow over time.

The little guy is a fighter and he has already changed our lives in a profound way. He fought for his life for over an hour after birth while the doctors were trying to get him a viable airway, and he continues to blow us away. God has given us peace about the whole situation and if we had to do it all over again, we would not have done anything differently. We thank you all for your prayers and cards.

Lamentations 3:31-33 For men are not cast of by the Lord forever. Though he brings grief, He will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to the children of men.