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.

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.

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.

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.

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.

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!

'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.

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.

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.

Surgery Today.

This is Kristy. It has been awhile since I have been able to write, but tonight I am home and just trying to catch up.

Today Samuel had his trach inserted. The surgery went very smooth. It is a relatively easy surgery with little complication. The surgeon also did a thorough look into Samuel's oral/nasal anatomy. She said it was very interesting...nothing that she had seen before. There is a cleft in the hard palate and in the soft palate, as well as the tongue, and top and bottom lip. Also there may be a bony stucture in the nasal cavity-so there is no connection between the nasal passage and the throat. Jeff is a lot better at explaining these things, so if he has time he can update the blog. Otherwise, Samuel is stable.

Although Samuel is well, we still have a long unknown road ahead. So many things the doctors are unsure. Samuel is our miracle baby. I think he is a miracle baby to so many others as well-especially the doctors. I still vividly remember sitting with the perinatalogist and hearing him say the words, "no hope". Well, Samuel has proved him wrong. Technology is not always accurate. And our God is much bigger than any technology.

God has continued to amaze me through our circumstance. God has been seen in so many ways. God has been using this situation for his glory-already. I don't know what the future looks like, but I know God has shared this amazing little boy with us to glorify Him. And as I see God work, I also see Satan work-trying to get a foothold on something, anything. Please pray for us and that we remain strong. Jeff and I definitely need prayer for the decisions we make daily. A slight communication error between us and Satan starts attacking. Just pray that we can be aware and remain as one knit tightly together. That we are sensitive to each other's reactions. Emotions are high, we are sleep deprived-perfect weapons for the enemy. We also need prayer for our other little boy Dawson. I can't imagine how confused he is. I know he can only comprehend so much, but he sees our pain, our anger, our fear. Not to mention his world has been turned upside down. Family in and out, routine-not so much, and a new baby brother. Dawson has been a little trooper-we just need to figure out how to make his life as normal as we can, but still helping him to understand our new life ahead of us. Also, pray for Samuel's brain to grow. At this point we are very unsure of how much brain tissue he actually has...but we know it is not a lot. I pray that his brain will grow...I believe in miracles.

Thank you everyone for your continued prayers and support. Our God is a good God! I know when my family has all left we will definitely need you all more than ever. Thank you.

FYI: We are at Memorial Hospital. We are more than glad to have visitors and to show off our little boy. We can't have our phones on in the hospital, but if you stop by and go to NICU, they will contact us to come out. Jeff or myself are usually at the hospital. Also, I will try to post new pictures soon. We can finally see little Samuel's face-no tubes and tape on his face, and his head is so much smaller.

Trach Insertion Tomorrow

Samuel is doing very well! Kristy said he is such a trooper and is handling everything so well.

Tomorrow at noon they are inserting the trach tomorrow (another breathing instrument) so we are asking for prayers that this procedure goes smoothly.

Please keep praying! It's working!

Nice and Boring

Those were the doctor's words when he came out of surgery. Samuel did great and Kristy said you can already tell an improvement with the shape and feel of his head. Everyone is very happy and awaiting Samuel to return from recovery.

Enjoy the pictures! They are from before surgery.

"Do not let your hearts be troubled. Trust in God; trust also in me."
John 14:1

In surgery; but a GREAT day!

Right now, Samuel has about 15-20 minutes left of surgery. They are placing a shunt in his brain to drain the fluid. Pray this surgery is a success and that Jesus guides the doctor's hands on Samuel's delicate brain and that no problems arise during this operation.

Praise the Lord! The initial brain abnormalities that were described to Kristy and Jeff at the ultrasound are NOT what the doctors originally thought! God is so good and the brain scan showed TWO hemispheres instead of one. This is amazing news on many fronts but when Jeff asked the doctor if Samuel could walk one day, the doctor said he wouldn't rule it out! Samuel still has hydrocephalus (fluid on the brain) which is the reason for the shunt but this is the greatest news they could have received in this situation. The prayers are working and we need to keep praying!

Kristy and Jeff were both able to hold their son yesterday. Kristy said he has smiled, opened his eye, and has showed obvious signs that he recognizes Mom and Dad. All wonderful things!

Thank you, thank you, thank you prayer warriers for all your positive thoughts, comments, prayers, and hopes. Kristy named the blog "Seeing Hope in Hopeless" when doctors were giving them a poor prognosis and encouraging termination. Her maternal instinct kicked in and she has taken care of her baby to the best of her ability and given him a chance at life, and now the doctor is seeing hope in walking! Things are no longer hopeless and we need to pray fervently for more milestones and good news for this miracle baby.

Again, please pray the surgery is a success, and continue praying that God helps guide Kristy and Jeff as they make more decisions. Please pray that once the shunt is in place, Samuel's brain begins to grow and develop.

He has already shown his family that he is smart and beautiful :)

Update

I talked to Kristy this morning and there are a couple new developments. The doctors went ahead and intubated Samuel, which took care of two things: first, the problem with the improper disposal of 02 has been resolved, and second, he is breathing on his own (mostly) without the tongue depression. The tongue depression was effective but Kristy said every so often it would move out of place and the airway would be blocked. It sounded like it was very difficult to watch Samuel go through the intubation process but I think he is doing better in that respect now that it's in place.

The doctors were conducting an MRI on Samuel this morning, and so Kristy is praying that Jeff was able to hold him before his scan. Kristy said at one point when the doctors were working on him, Samuel tried to push them away!

She also said one of the nurses was changing his diaper and let them have a peek at his little heine. She said he has a cute little tiny butt! I could tell she was excited to see his precious tiny body.

Meanwhile, we are still asking for several prayers. Generally, we ask the Lord to guide Kristy and Jeff as they seek answers and make decisions regarding Samuel's care every day. This is such a scary, stressful and uncertain journey. We just pray that Kristy and Jeff feel peace and confidence with every decision they make.

Please pray that they are getting as much rest as they can during this difficult time, and that they are comfortable and have as few outside stressors as possible. Kristy mentioned the lack of room and privacy when trying to pump milk and take care of other needs. We also pray that Kristy and Jeff are given time to enjoy their baby and love their baby. I know she has not been able to hold him since birth so please pray that she can hold him again soon. Please pray for Dawson as he is too young to fully understand what his little brother is going through, as well as give Kristy and Jeff the right words to explain the situation the best they can to a two and a half year old.

Kristy's mom, dad, brother and sister-in law (Kevin and Katie) are all in Colorado with the Rowbotham's so please pray for them as well. I know the family being together is very comforting and helpful.

I asked Kristy if she needed anything and she said no, she is doing fine for now.


Please pray hard! God is good and I know He will take care of Kristy, Jeff, Dawson and Samuel in His way.

Still fighting, but still in distress...

Kristy just called with another update. The doctors at the hospital where Samuel is staying are currently conducting a brain scan to ascertain how severe the brain anomalies are at this time. The current plan is to insert a shunt and a trach into Samuel to help with his issues.

Samuel's body is also not disposing of O2 properly. Kristy is concerned that this could be fatal.

Everything is very uncertain. They do not know how long Samuel will survive.

Right now, they are just asking for prayer for the family. Please pray that they will continue to feel peace as they continue down this journey. Please pray that Jeff has strength and guidance as he is alone with Samuel at the other hospital. Please pray that Jeff and Kristy have guidance when it comes to making decisions about Samuel's care...at what point is the intervention too much?

Thank you so much for all the thoughts and prayers. I know Kristy and Jeff are aware of all the people praying for them, and can feel the love that surrounds them from all over the country.

More updates to come!

Everyone is okay! (But Samuel still has fatal concerns)

Samuel Arthur Rowbotham was born into this world weighing 6 pounds, 6 ounces and 18.5 inches long! Kristy said he is a fighter. He came out and was trying so hard to cry and Kristy said he muffled some little squeaks. She got to hold her precious baby boy.

Samuel is being transported to the other hospital, but Kristy is staying at the new hospital. Samuel has a few concerns, some they knew about, and some they did not. He only has one eye and one ear, his head is very large (the same size as his body), the cleft lip and palate, his tongue is being depressed so that he can breathe, and more.

But right now he is BREATHING on his own!

As soon as I heard Kristy's voice, before I knew whether or not she'd delivered or if the baby survived, a certain feeling of calmness was evident in her voice. She sounded the best she has sounded since July 11, 2008. As she recounted the details of her son's birth, I could hear the tenderness and love she felt for her baby as well as the peace she felt with the unknown fate. She said she is feeling peaceful and Jeff is feeling peaceful and if Jesus wants to bring Samuel home, they are both okay with that.

We are just asking for more prayer. Praying that Kristy will have a speedy and healthy recovery from her surgery, that Jeff, Kristy, Regina, Tom and the rest of their family will continue to feel comfort and peace, and that Samuel is comfortable and Jesus wraps his arms around this child and takes care of him while he is with us on Earth and if he chooses to bring him home with Him.

Kristy is sad that Samuel had to go to a different hospital but happy that Dawson can come and visit her, as she misses him very much already.

Kristy, you are an amazing, amazing mommy. Dawson and Samuel are very blessed that God picked you to be their mommy. I love you, friend.

C-Section

Please keep praying! Baby Samuel is in distress and labor is not progressing as they would like. The baby's head has not dropped enough. The doctors have decided its in Kristy and Baby's best interest to perform a C-Section. I wish I could be there with my best friend...but I know she is being taken care of. Prayers, prayers, prayers!

It's Time

This is Melissa, writing for my dear friends Kristy and Jeff. Kristy was checked at the hospital and it was confirmed that she is in labor. She is 4cm dilated and having consistent contractions. Please pray for Kristy, Jeff, Dawson, and Baby Samuel.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10

Off to the hospital...again

So...quickly. I have been having bad contractions all day, so we are off to the hospital to get checked. Please pray hard!!!

Closer

So, I had a doctor's appointment yesterday, nothing changed except I am off the Procardia now (which stopped contractions). Oh, and now I am measuring 41 weeks and I am 36 weeks. So, really I feel miserable. I am having such difficulty moving around. I really pray that I will have Samuel early. I am not sure how much longer I can take this anticipation and unknowns. But I am still resting assured that God is in control and that HE HAS TO HAVE A PLAN THAT IS MORE THAN I CAN UNDERSTAND.

Please pray for a smooth delivery. I would really like to try to go natural. Pray that my body withstands this and that I physically survive. Also, pray for the decisions Jeff and I have to make for Samuel. We feel so overwhelmed by the decisions that we can't make at this point. We want to have an idea of what we want to do for Samuel, but we aren't even sure. We need clarity. We also need prayer for guidance in handling the situation with Dawson. We don't know how to deal with it-he is 2.5... We just need some hard core prayer right now. We both are feeling so overwhelmed. I personally am having daily meltdowns. This is so much to handle, to understand...

I was reminded of these verses last night, let us not forget.

Psalm 46:10 Be still, and know that I am God!!! (I added the emphasis)
Phillipians 4:7 And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.

Late Update from Thursday Dr. Appt

Thursday Appt: Well, of course, not much news. I am effaced 80% and still dilated about the same between 1.5 and 2. My stomach is now measuring 4 weeks larger!!! So, my body looks and feels like I should have a baby soon, but...we don't know that. The Doctor said that she is pretty confident I will not go to my due date, but when I will go is still up in the air. I have been having a lot of back pain lately-which I think can be indicative of preterm labor. I think I will go sooner, but that is just what I am feeling. Maybe it is because I feel like a beached whale. But, not much else from the appointment-just wait and see. I am to continue taking the Procardia for contractions, but will stop on Thursday. If labor does start, we will probably just let it take course.
Other News: So, again, it has been so nice to have my mom in town. I have been trying to relax best I can, but I still want to get up and do things. We did go to the pumpkin patch yesterday, which was really fun for Dawson. The place had a straw slide, a ghetto straw maze, goats, and of course a "pumkin patch". I put it in parenthesis because they literally had boxes of pumpkins to pick from or pumpkins just chilling in the grass to pick. Oh well. The adults were definitely more disappointed than Dawson, so it doesn't matter-he had fun.
On another note. For the past week I have been looking for an outfit for Samuel. I just really wanted to buy something for him-because whether or not he comes home or not, he needs at least one baby outfit. Well, Dawson was looking at baby clothes with me and saw a picture of a baby. Dawson said, "that baby is going to die" and "that baby is in trouble". I think my heart ripped right out of my chest at that moment. I know that he doesn't fully understand, but he definitely hears what we are saying. I just don't know how to handle talking to a toddler about this stuff, but I guess we will cross that bridge when it comes... Anyway, despite the difficulties in looking for an outfit (not knowing if it will be for Samuel to come home in or be buried in), I ended up getting a really adorable warm, cozy sleeper and a little baby hat to go with it. Then Dawson picked out a cute penquin for Samuel. I am glad that we did that. It was hard, but felt good to buy something for my baby boy-who is very real.
We are hanging in there. We all have been a bit on edge, but it has helped a lot that my mom is here-it relieves some of the everyday stressors like Dawson, cleaning house, laundry, dinner, etc. We just keep praying that God will make these big decisions that are coming our way, or at least he will give us absolutely clarity in what he wants us to do. We are not able to handle decisions this big. I am glad that God is our warrior and fights for us and gives us directions, because we are clueless.

A Heavy Heart

First I have to say that I am so glad that my mom is here. I can't tell you what a relief it is to have her here. Not to mention that Dawson totally adores her. He wants mamaw to do everything-"mamaw buckle me in", "mamaw get me milk"..... and on and on. He will actually cry if Jeff or I do something for him. I can't say that I am complaining about that. He even wants mamaw to change his diaper-oh, what a bummer! It was been to nice to be able to relax, but I think my mom pushes me relaxing a little too much. For example,we went to Walmart on Monday and she made me drive one of those motorized carts. That was so embarrassing. She told me I had two options: drive the motorized cart or sit the in the car. Grrr. But all and all, it is good that I am able to rest.
Tomorrow I have a doctor's appointment. I am actually looking forward to going. Just to see if things have changed or what we are going to do now. It has been a week since our triage visit and it will be the first time I have talked with my doctor since then. I kind of hope that she says that Samuel will come soon. I feel better now that I have the steroid shot and am kind of ready to just deal with whatever is going to come. I think the anticipation is just driving me mad. I am constantly wondering...is it today, tomorrow, next week, 5 weeks???? I feel like this lost puppy dog...just not knowing what to do. Today when we were at the store, I was wondering, should I buy Samuel an outfit? Should I do this? Should I do that? So many overwhelming questions. I want to be prepared, but to what degree, I am not even sure. So, I just got consumed with so many unknown questions that I just cried while I walked around the store pondering them. I am sure people just thought I was hormonal....which I am, but is not the reason why I was crying. Blah...too much.

We have the internet back!

OK. Everyone we have the internet back and running. So, it will be easier to update everyone with what is going on. But, basically, not much else has changed. I got my second steroid shot on Thursday night at 11:30pm (that was fun). My headaches are better. I figured out to take the procardia with 2 tylenol. It is crazy-preventative maintenance. I have still been having contractions, but they are tolerable and not very frequent. My back is kind of aching...not fun. My mom is coming on Sunday night-so that will be such a relief and so helpful!! I feel bad for Dawson. I have been making him lay in bed with me and watch movie, after movie. I think he is going to go crazy! But my mom is coming!!! So all will be well! I will let you know if things change. Keep praying. Stay put Samuel!!! Just a little longer.

Triage Visit Last Night

I am going to make this short. Our internet is not working, so I am at my neighbor's house, but just wanted to do a quick update.

Last night, I had some brown spotting and other yucky things ( I will share you all the details). But I was concerned and called the nurse hotline. She told me to go to the birthing center triage and get checked out. So, of course, we went. Again, to make this short... we went to hospital, got monitored and checked. They also did this Fetal...blah blah test. The Fetal... test can show if I am at an increased risk for delivering in the next 2 weeks.
Conclusions: The test came back positive (this doesn't mean that I will delivery in next 2 weeks, but would not be surprising...there can be a false positive). I am dilated almost 2 cm. I was having contractions, although not consistent enough to stay in hospital. And finally I lost mucus plug.
What they did: Gave me some medicine (can't remember the name), but it is to stop contractions. Only problem is that is gives me terrible headaches. But contractions have become less. They gave me a steroid shot to help Samuel's lungs develop. I get another shot tonight. I have to go to hospital tonight late because it needs to be within 24 hours of the previous one. Lucky me.
I will let you know as things happen. Just wanted to give a quick update. It is hard because our internet is not working...go figure.

A Hard Day

Psalm 25:4-5

Show me your ways, O LORD,

teach me your paths;
guide me in your truth and teach me,

for you are God my Savior,

and my hope is in you all day long.

Today was a hard day. Church was a really difficult place to be. Sometimes, it is not even the message, but just being there that makes us vulnerable to our emotions (which is ok, just hard). I could tell that Jeff was having a particularly emotional time during worship, which made it challenging for me as well. It is very rare to see Jeff that way and it makes my heart break. Not only that, but a few rows in front of us was a mother with a newborn baby. She was just stroking his little fuzz on his head and cuddling him so sweetly. My heart was aching. I was happy for her, but sad not knowing if I will be able to experience that with Samuel. I guess regardless I will be able to stroke his little head, feel his sweet little body-just maybe not the way in which I hoped. Letting go of these expectations is a very hard challenge. My heart just feels very sad lately and scared. I can only cry out to God right now. The pain is just overwhelming these days. I can only imagine how much harder this is going to get.

A Tiny Bit of Relief

So, I had another doctor appointment today. Surprise, surprise!!! I feel like I am starting to live there or at least make it one of my favorite activities of the week. I feel bad for Dawson. He really is a champ. Gotta give it up for him for being in a doctor's office for over an hour (because they are always running behind).

Anyways...at the visit with my regular OB, I was somewhat relieved to hear what she said. She said that, although my amniotic fluid level is high, it is not a huge concern (at least not at this point). She said that yes it does increase of risk, but only slighty. The bigger concern is the size of Samuel's head. It is likely that his head will continue to grow. She said that she will talk with perinatologist and discuss at what point a c-section is mandatory. The OB said that regardless of which method I deliver it will be difficult. If natural...obviously hard. If C-section, more of challenge to get him out. Hopefully he stays head down. If he moves to a breech position, it could be interesting. Also, my blood pressure was elevated. She didn't seemed concerned about that...in all honesty it was probably because I had to sit in the waiting room for a year and a half. I will monitor that at home. Not much else really. Just "wait and see". By my next ultrasound I think we will know more of what to expect. My next ultrasound isn't until the 28th of October! Just pray Samuel stays in there and I stay healthy (both physically and mentally).

I have too admit with each week and almost day really, my faith is challenged. I have been having a lot of "bad" days lately. I seem to get more annoyed with EVERYTHING and my family suffers from this. I feel horrible for Jeff and Dawson. I probably feel worse for Dawson because he doesn't understand. I just have been on edge lately, irritated by little things. Dawson seems to push my buttons daily. If only he would do everything I asked-immediately. That is just how I am responding to him and Jeff. It seems like I am in a constant state of stress. I was doing so well. Now I just feel like I am slipping. Our family needs prayer. Jeff is such a great guy to put up with me. We definitely handle stress differently. I am what you might call "high strung". Jeff on the other hand is more laid back. I have also been avoiding people lately. So, sorry if you are one of my friends and I have been not calling you back or emailing you back or just avoiding you. It isn't because I don't need you-I just am having a hard time. Please forgive me for being a bad friend and know that I still care about our friendship.

May God be with our family during this time and the time that will follow. As always, thanks for the prayers and overwhelming support (in so many ways).

Just when we thought it couldn't get worse!

Yesterday, we had an ultrasound. It was actually a pretty quick one. They really just did the measurements of Samuel and the amniotic fluid. But, then we got more bad news. I have already mentioned that my stomach is HUGE, well, there is a reason for that. I have too much amniotic fluid. This is not a good thing. Now this puts me at risk. Before there was no added risk to me. Until now. Worst case scenario with this situation is that I would bleed profusely after delivery and that my uterus would not be able to contract back. Which in turn could mean blood transfusion and losing my uterus. The specialist mentioned again, "worst case scenario". I reminded him that we have ALL the worst case scenarios, so that really meant nothing to me. Yea. If it isn't one thing it is another. And another thing, Samuel's head is measuring at 41 weeks already. That is 9 weeks bigger than it should be. I still have 8 weeks to go (well maybe) and a baby's head that is continuing to grow. That puts me at an increased risk of a c-section.
Another thing I forgot to mention is that because I have too much amniotic fluid, I am at risk for preterm labor. I think my stress level has jumped a huge amount since yesterday. It was one thing to just have to think about Samuel, now that I have a major risk involved, ah. So much!!! Really? Can someone handle so much. Pray for us!

Big Belly, Big Belly, Big Belly

I put the title that way because my belly is HUGE. As of last week I was measuring 3 weeks bigger. Yikes! I am afraid of how big my belly is going to get. I can already barely fit through our back door. In my defense, it has a doggie door, which makes the entire entrance smaller. But honestly, Jeff said my stomach definitely sticks out more than it did with Dawson. I have to agree. I don't remember being this uncomfortable with Dawson. Samuel is just constantly in my rib. Bending down is becoming a challenge. EEk.

So, nighttime is being a dreaded part of my day. I wish I didn't have to sleep and that it would be light all day. Night is just evil. My thoughts just go crazy. I try to relax, but it is such a challenge. I bought some pillow spray that supposedly smells like warm milk and honey. It is suppose to help one relax. I like the smell, but it is not so much helping me feel asleep. I also bought an eye pillow that can be heated up or chilled. It feels pretty nice, but doesn't really help. Unfortunately the only thing that has seemed to work is taking a sleeping pill. I am still open to trying new things. I really hate having to take a pill to go to sleep, but after laying there for so long, one becomes desperate. Grrr.

The weeks are now only single digits away. I can feel my anxiety level rising. The anticipation is hard because it is so unknown. I just have to keep reminding myself, "this is for God's glory, this is for God's glory". I think as the time approaches I struggle more with the questions of God's plan. Just thinking of how it will all play out. Even when I pray I always first ask God for a miracle. In my mind asking for a miracle means completely healing Samuel-making him normal like Dawson was. Then I revert back to , "I mean, God, I ask for your will, whatever that may be". As much as I want God's will to happen, I still want my baby to be completely healed, but at the same time I want it to be God's plan and not mine. So complicated. Luckily I am not the one in control because I really don't know what is best.

It has been awhile!

Sorry it has been so long since I have updated. Anyway...so I am learning what Braxton Hicks contractions are-yippee. I didn't have any contractions with Dawson-that is until they induced me. Apparently these are very different. I have been consistently having them for the past 3 days now. It has made me really nervous. I went into the doctor today for some peace of mind. The doctor said everything was ok-I am not dilated at all. She said I should just take it easy-ha, that is funny. She said I should put my feet up, relax, and try not to pick up Dawson. Again, funny! I am glad for some peace of mind that these are not labor contractions. I have to admit that I fell apart at the doctors appointment. I was "waiting" (as you know always happens in a doctor's office) and I just started to breakdown. The poor doctor! She walked in and I just started crying. I was saying how I didn't want Samuel to come now because he wasn't ready. If he has any chance of survival he needs to stay in there longer. I was sobbing. Then I started crying because I said I felt fat and then...it was just one thing after another. I was a wreck. Poor doctor. She couldn't do anything until I calmed down. I am "one of those" who make everyone else have late appointments. Well, she was very sweet anyway and reassured me that for now I am not in labor. Whew! By the way she was not my normal doctor.

And on another note. Dawson has turned into a crazy 2.5 year old boy. He has started to talk back or rather repeat whatever I say. For example, I say "Dawson, if you do that again, I am going to put you in timeout.". Then he says (while gritting his teeth), "no, you go in timeout.". Wow! I didn't know 2.5 year olds were like this. I can feel my blood pressure rise when he does this. I think he knows it pushes my button. Again, only 2.5, and he knows how to push my buttons. He is also been like an energizer bunny lately. I need a nap everyday, he somehow doesn't need one. We went to the zoo the other day for 3.5 hours. He didn't even ride in the stroller. He either ran or walked the entire zoo, but still not even for a nap. I wish had his energy-which I am sure a lot of us do.

Again, I want to thank everyone for being so amazing! I can't believe how much I have seen God through this whole situation. We have been blessed beyond belief! I think one of the most amazing things I have seen is God's provision financially. Wow! I am really in awe at how God has used his people to help provide for us. Thank you God. It is so wonderful to have such amazing support from our brothers and sisters in Christ. God's family truly is wonderful and real. I know I use the word amazing a lot, but it is an amazing word!

Doctor Appt today- a glimpse of hope!

Today Dawson and I went to my OB appt. Just a regular check-up, but I felt some sense of hope at the visit. The doctor said she had talked with the neonatologist after we met with her. My OB just basically said, "hey, it could be better than we think". I don't think she was trying to give us false hope, but just helping us to realize that Samuel may want to survive against the odds that seem so apparent. So, it actually wasn't such a bad thing to go to the doctor today-finally! It was just a slight sense of encouragement, just enough. Although, at the same time, I find it hard to come to terms with the fact that if Samuel does survive, he will would be special needs-to the extreme. Don't get me wrong-I want Samuel to survive, I just know that it will present challenges in our lives that, of course, we were never anticipating. But does anyone really expect that things will go "normal" all the time? No, I don't think so...it is just an adjustment to the lives that WE had planned out-not GOD.

And on a cute note. When we were at the doctor's office today, Dawson brought his doctor's kit. He was checking me out before the doctor got in. He made sure my heart was ok. Then he check my reflexes (ouch, he doesn't quite understand gentle). The entire time I was talking with the doctor, he was giving me shots. It was so cute!

How Blessed!

Just a couple of things: First, I just want to tell everyone THANK YOU! We are have been showered with so many blessing in so many ways. I can't tell you how much it means just to know that our story is being spread and we are being bathed in prayer. I have to say that we can feel His presence during this difficult time. This makes me more and more encouraged of the goodness of man. I have been learning so many things about God and about people through this experience. I feel my heart has changed for others through this and that I personally am more sympathetic to others in so many ways. As I know you all are-just keep praying. Pray big because God is big.

And another thing:
Psalm 62:5
Find rest, O my soul, in God alone; my hope comes from him

Visit with Neonatologist

On thursday, we met with the neonatologist. We weren't really sure what to expect when meeting her, but I think we were hoping for something (even though I am not really sure what that something was). Well, she didn't have much to tell us except "I can tell you when I meet Samuel". Gee, thanks. So, you are saying you don't know. Again, I guess it wasn't surprising, but .... There were a couple good things that came out of our conversation with her. Firstly, I have to admit she was super nice. When I asked her if she had dealt with a baby with similar anomalities, she assured us she had (Encouraging!). When I asked the outcome, she said she saw it both ways-as in the baby not making it and then the baby surviving. She also said that technology is not perfect and that doctors have been wrong. She said sometimes the outcome is worse than we may expect, but sometimes it was better. I think she has been the only person to give us some sliver of hope...that maybe Samuel has some chance (maybe small, but some). I don't feel like she was misleading us or giving us false hope, just letting us know that she has seen it both ways and that ultimately we will know when we meet Samuel. It was also encouraging to know that she will be ready for us and will be there when Samuel is delivered. Once Samuel is delivered-she takes over. Again, we won't know what type of care he will need until then. But, we can think of maybe some things we may want for Samuel and some things we may not want for Samuel. I guess we will just cross that bridge when it comes, but we really can't decide now... So, for now, we will just try to enjoy the pregnancy and love on Samuel.

I hope soon to put new pictures up. I am still figuring out this blog thing.

It has been harder lately.

The past week has been a little harder for me. I think it is with the changing weather. As I see summer fading away, I get closer to the reality of Samuel's arrival. I am so fearful of the unknown. I just wish the doctors could give me something, but at this point it is just, " I am not really sure what to expect". Again, I try to take it one day at a time. The days have been a little easier than the nights. At least during the day I stay busy-running around doing anything I can think of with Dawson, then taking a nap with him. Naps are such a wonderful thing, especially with my baby. I know these moments with Dawson will only be temporary. Dawson and I sometimes literally just walk around Target (or Walmart) just because I don't want to go home or it makes me do some mindless activity. Dawson quite enjoys it, because we explore the toy the toy section for quite some time. Only problem is-he wants EVERY toy or rather he says he "needs" it. Anyway, nights have been extremely difficult. I have been lying in bed just thinking...thinking of all the plans I had for Samuel and our family. Pondering how Dawson would adjust to be being a big brother. Thinking of our daily lives changing. what I was going to do with the nursery. Yikes. It is so easy to let the mind get out of control. Many nights I have laid there for hours-at last, finally giving my brain a break. Despite this, I still have peace. I am not sure what the peace is in regards to-I guess the situation as a whole-just trusting that God has to be bigger. I have some what put God on the back burner for right now. Not that I am not trusting him or relying on him, but just trying to grasp some things in my head before I go to the Creator. I know he is there when I need Him. Right now, I am just hanging in there-one day at a time.

Ultrasound today.

Well, today we went to get another ultrasound-28 weeks along. The lady who did the initial ultrasound before the specialist was wonderful. She was the one there when we first found out. She gave us some pictures, which I am so grateful to have and cherish. The specialist came and did a more thorough scan of Samuel-looking in more detail at his mouth, hands, heart, and brain. He is very surprised that everything came back negative from the Baylor labs. He said that when Samuel is delivered we can do some blood work and possibly (still not 100%) find the diagnosis. He also mentioned that this actually could be linked to Jeff and me. It could possibly be a recessive gene that he and I have that could cause this. When Samuel is delivered and bloodwork is done, we should be able to find this information out. Samuel may have an extra finger, but we aren't sure. He also said that Samuel's ear was set lower than normal. Also, Samuel's head is measuring at 32 weeks and I am only 28 weeks along. The doctor said this is due to the extra fluid in his brain. We will have to determine at a later time, if a C-section will be required because of this condition. The doctor also said that, since we were unable to find a diagnosis, that the prognosis is really just a guessing game. We really can't say if he will die immediately, shortly thereafter, in the womb, or maybe a little longer. Basically, we will find out when he comes out of the womb...whether or not he is breathing on his own and can eat on his own. Gosh.... this is a lot to handle.

On a side note, it was really exciting to see Samuel. He wasn't always cooperative with the doctor. He was moving and kicking around a lot. It was kind of fun to see him like that. At the same time, it was a little strange seeing the 3-D images because of the cleft lip and jaw that is set back really far. I guess you just expect that your baby will look perfect. But I guess he is really perfect, because he is our child. It still is hard. This whole situation is really hard to come to terms with. Some days it just seems like a dream.

To come: neonatologist next week, ob in two weeks, ultrasound in 4 weeks. And...who knows what else???

OB appt. today

Today I went to the OB for my regular check-up. We discussed the "next step". My OB will contact the neonatologist. Then the neonatologist (pediatric specialist) will contact us and we will meet her for an appointment. We will be able to discuss a "game plan" for if Samuel survives. As in-surgeries, feeding, etc. Also, we may be able to get a better prognosis after the neonatologist reviews our case. In the meantime, we wait, again! We have our ultrasound on Friday and then not sure when we get to meet with neonatologist. Otherwise, a healthy pregnancy.

Pictures!

Hey Everyone!
My friend Suzy, who is an amazing photographer, has taken some fabulous pictures of Samuel (belly pictures) and of Dawson. You all are welcome to view by going to the website: www.bohemianperspective.com and then going to "client login" in the bottom right hand corner. Then enter the password: Rowbotham (case sensitive). She did a great job and we can't thank her enough. These will be pictures to be cherished for a life time. And she lives in the Springs, so if anyone needs pictures-she is the woman!

On another note. The past couple days have been pretty good. As always, Dawson and I have just been trying to keep busy. We have been watching the Olympics a lot too. Jeff says the Olympics are bad for family values. The reason being that we (Dawson included) have been eating on the couch and staying up late (too late). Oh well, it only happens once every 4 years. Not to mention, Dawson actually seems to enjoy it. Samuel has been quite the active little guy lately. It was been really fun to start to feel him kick me in the ribs (ha!). But just is more evidence that is ok (for now). I kind of wish he could just stay in my belly forever-if that meant that he would stay alive. But, again, I can't predict the future and God is bigger. Just getting to hold him in my arms will be a blessing. That is it. Next week should be a big week-doctors appointment on Wednesday and then ultrasound on Friday. I will keep you posted. Keep praying for a miracle.

Hmmm...

There are some things in life that I really can trust God in, while there are others that I can't. I have yet to figure out the reason why this is so. I think that with the baby situation I immediately decided to give it over to God. Whereas in other situations in my life, I have first tried to do it myself-trust myself. That is where I went all wrong. Then the situation (whatever it may have been) just continued-never fully being resolved because of my desire to put it in my hands. What I have learned from this: trust God first (it makes things a lot easier), it is never to late to let go and give it to God (he wanted it in the first place), and finally that God can restore what we screwed up (thank goodness). Today has been difficult. Please pray for our family unit. I must learn to see hope in all circumstances.

With God all things are possible.

I find this hard to understand. Samuel seems so normal-kicking in my belly. But he isn't. Lately I have been struggling with that thought. How it can seem so normal, yet be so abnormal. Again, that is one of those questions that I just have to stop trying to make sense of. I am actually really excited about our ultrasound next Friday. I will be happy to see Samuel-alive and moving around in my belly. I know that I may never meet him alive outside of the womb. Despite this, I still have this sliver of hope-that just maybe when they do the ultrasound he will have a brain and will be healed. I can hope for this, but not expect this. I believe that God can perform miracles today. It may not be his will for Samuel to be healed and to survive very long, but if it is I will be estactic. If it isn't-that is ok too. Again, I will just have to continue to remind myself of God's character and that He knows what is planned for our lives. It is all in the story He has written for our family. At the same time, I will not forget that the impossible is possible with God. Let us not forget that.

Prepare for the worst, Hope for the Best

Psalm 91: 1-4 (New living translation)
Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him. For he will rescue you from every trap and protect you from deadly disease. He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection.

Yesterday was a hard day again, for both Jeff and I. On Wednesday we met with a couple who had lost a baby at 28 weeks-reason unknown (they did not know anything was wrong beforehand). It was hard emotionally. At the same time, it was really good to meet with them and encouraging. Encouraging to see hope after such a hard time, being able to have other children, and learning more of the personality of Christ. They gave us great advice that I think will help us in some decisions we need to make. We talked about having a funeral and being prepared for one. Initially, I felt like this was telling Samuel, "I have given up on you". But that is not truth. I think we should prepare for the worst, but hope for the best. I don't think this means I am giving up hope on Samuel. Samuel is a fighter. I think he has already fought pretty hard so far. There is no way that I would ever give up hope. With that said, I still want to be real with myself and the reality of the situation. I don't want to give myself false hope.

Anyway, the doctor called today and said that the specialist wants to do another ultrasound at the end of the month. He wants to see how the body is growing. I am not sure the point of this since prognosis is still the same, but whatever, I do want they tell me to do (at least sometimes). We will also be meeting with ob at end of month for regular appointment and to discuss further the results (again, not really sure what to discuss, since they didn't find anything).

Dawson and I have been keeping busy. I have just been trying to keep up with house, but still get out of the house everyday. Dawson took a nap today, so it has been quite nice. I think I will join him. I love him!! He is such a character lately. He has been telling me "you're a crazy driver" and "stop talking to me". These are just some of the aftermaths from mamaw. Yikes!! He is starting to get an attitude...we need to nip this in the butt!

Thanks all for listening. Keep praying. God is big!

This too shall pass

This is a poem by Helen Steiner Rice. Her poetry is so inspiring and encouraging. I have found myself reading her words and being uplifted. Although this world brings so many unknowns, especially in our circumstances right now- I know that God is real and I can rest assured in that. My world may fall apart here on earth, but I have hope that can't compare to any adversity that I may face. I may not know all the things I desire to know, but that is ok. I am confident that God does know the answers and that is good enough for me. I know not everyone can have the blind faith that I feel like I have at this moment in my life, but in reality it really isn't that blind after all. I feel God's peace and presence-isn't that real enough?


This Too Shall Pass
If I can endure for this minute
Whatever is happening to me,
No matter how heavy my heart is
Or how dark the moment may be-
If I can remain calm and quiet
With all the world crashing about me,
Secure in the knowledge God loves me
When everyone else seems to doubt me-
If I can but keep on believing
What I know in my heart to be true,
That darkness will fade with the morning
And that this will pass away, too-
Then nothing in life can defeat me
For as long as this knowledge remains
I can suffer whatever is happening
For I know God will break all of the chains
That are binding me tight in the darkness
And trying to fill me with fear-
For there is no night without dawning
And I know that my morning is near.
Helen Steiner Rice

Results.

Better explanation from Jeff: Jeff actually talked to the doctor today

Results of the CGH came back normal - meaning this shouldn't effect future pregnancies, but also doesn't let us know what caused Samuel's abnormalities. It's extremely rare to have these abnormalities and not have and identifiable syndrome. The perinatologist mentioned 3C Syndrome - (Cerebellar, Craniofacial and Cardiac abnormalities) but they can't confirm that. There have only been 25 babies identified with this since 1987. The babies genes and our genes are totally normal and they don't know what caused the spontaneous structural malformation - it may be a syndrome that hasn't been identified yet. Once abnormality can be by chance, but three leads them to believe that there is some sort of syndrome that caused it. Once he is born, they can do more testing to see what it is, but this does not change the prognosis. Our next step is to meet with a neonatologist who will take another look at Samuel and advise us on how to treat the pregnancy. The cleft lip and palette will need to be addressed right away because of feeding issues, but nothing can be done with the brain - which is the major issue. They will let us know more details about delivery, what surgeries will be needed, etc.

Kristy's notes:
Well, we got the results today. And... it is not genetic and Baylor was unable to identify the problem. This means that it is not related to either Jeff or I, but whatever the problem is-it is so rare that it can't be identified. So, now this still leaves us with so many questions and unknowns. I think that is what drives me crazy. I have some peace knowing that we have a potential to have more kids. At the same time, I just wish I knew what was wrong with my baby. This means that it was completely spontaneous. The odds of this happening are unreal. Our next step is to see a neonatalogist.

No news!

We did not hear anything on Friday. We are so anxious. I felt a wreck on Friday, now I have to wait until Monday to hear something. Monday is going to be even more stressful. We will let you know as soon as we find out something.

A Busy Week

We have definitely been keeping busy since my parents are here. They are wearing me out! We went to the Zoo yesterday for four hours. I took a nap on the way home, but not Dawson. He has been going strong, but quite a bit cranky from lack of sleep. I think he is too busy playing with mamaw and papaw to get any sleep. Today we went to the outlets and shopped til we (I) dropped. Dawson did amazing, considering it probably wasn't his idea of fun. Mamaw and Papaw have taken Daws to Walmart-I am a little nervous to see what he comes home with...???

Jeff talked to the doctor's office today. No news yet. Although Tammy (she is the nurse for the specialist, who is super helpful and amazing) talked to the genetic counselor today and we will either here tomorrow or Monday. Please pray that it is tomorrow. It would be nice to have my parents here when we hear the news. We just want to know what is going on with our little Samuel. My heart is heavy for the news. I am nervous and scared, but need to know how to prepare.

Denver.

What a nice day! Today me, Dawson, and the parents went to Denver. In Denver, we visited the Aquarium and Children's Museum. It was great fun. Dawson really loved the sea turtle and the tiger at the aquarium (yes there was a tiger there ??). He was a crazy man at the children's museum-very stimulating, maybe a little too much. He crashed on the way home. Later we went out to eat at a Chinese buffet-I think the best I have ever been too. The grandparents definitely spoil him. He is always getting ice cream, juice boxes, and toys (at every shopping trip). He tells mammal, "I need that". I will have to do a grandparents detox when they leave. Oh well, it is only a week and so worth it!! That is what grandparents are for! Who knows what adventures await us tomorrow!?

On another note. I find it hard just thinking of the reality of Samuel. I know Jeff has looked into some burial/funeral stuff. It is really difficult to think about. I really just have to take it one day at a time, otherwise it is too overwhelming. I almost feel like I am a ticking bomb-wondering if this is going to be his last kick. I know I have to stop thinking about it-it makes me go mad. Last night, I just lay in bed thinking about the ultrasound and hearing the devastating news. Replaying it over and over again. I have got to stop this. But when i do think this way, I am reminded that this is for God's glory. I think of the story of the blind man being healed. Followers of Jesus asked if this was because of a sin committed by his family. Jesus replied that indeed it was not, but for the glory of God. Let me not forget that. I also have not given up hope-hope for a miracle. God is big and he can give Samuel a brain. I know that even though he is capable, it doesn't mean that is his plan. And that is ok, but I think of a huge miracle happening. I wouldn't be angry at God if it didn't. Thank goodness He knows what He is doing. He did create the universe, I guess I can trust him with this little thing in comparison to that. This plan has to be good, because God is good. He doesn't want us to hurt. I know that. God doesn't like to see us in pain, to cry, to have our hearts broken.

A better day.

I have to admit that initially today was pretty crappy. It is so hard on a marriage when there are so many stressors. I find Jeff and I fight a lot more now. I know it is because we are both so stressed. Please pray for us through this journey...which I know you all are.

My parents came today-yippee!! I am so glad they are here. Dawson is especially glad. He already wants to play golf with papal and do everything with grandma. I know this week is going to be such a blessing to all of us. I can't tell them how much we appreciate them taking a week out of the year to come. Me, my mom, and Dawson are going swimming tomorrow-that is going to so fun. Jeff and my dad are going to the golf tournament-at least we will be cool in the water.

On another note. I want Samuel to be real to everyone else, as real as he is to us. Please don't feel uncomfortable asking about him or just talking about him. I love talking about him. Also, if anyone ever has any questions, I am more than willing to talk about it. So, don't hestitate. If I don't want to talk about the situation, I will let you know. Anyway, Samuel is such a kicker. Not nearly as much as Dawson was, but still makes me jump he kicks so hard sometimes. My placenta is on the front, which is probably why I don't feel him kick as much as I did with Dawson. His active times are at night (of course when I am going to bed) and in the morning "good morning mom". Dawson has been so sweet lately. He loves to pull up my shirt and kiss baby Samuel. He says "Samuel my brother". Sometimes, he does it at awkward times...we are working on that :). Not much else. Just trying to keep relying on God and keep the faith.

A Hard Day

Today was a hard day-emotionally. It is not that I doubt God or what He is doing, but sometimes the saddness of the reality is just hard to handle. It was just really hard to function. I have not been sleeping well, so that doesn't help matters. My mind tends to run rampant at night. I know this is normal when one is dealing with multiple stressors. Some days will be good and some days bad. I feel bad for Dawson during days like today. I just have no motivation to do anything, and he suffers for that. Tomorrow will be better. I am taking Dawson swimming. He loves the water, so that should be fun. Sorry not much today. Just a blah kind of day-in so many ways.

Doctor visit today.

Yesterday, Jeff and I gave our blood to be sent to Baylor. Then I had a lot of phone calls to make to ensure that the insurance was taken care of. We had to put a down payment because the test is $1600. Thank goodness for Younglife insurance!!!! The test could take only 7 days, but possibly longer. Again, waiting.

Today we went to the OB for my regular check-up. She pretty much just said: normal pregnancy, abnormal baby. So, I will continue to see her just as I normally would. There is no added risk to me. It is so hard not knowing what is going on. We have to wait until we get the testing back to even discuss anything further details. For example, we may have to deliver in Denver, depending on results. Again, we just have wait.

God is really trying to teach me patience and it is driving me nuts. It seems as if the lessons are never ending with Him. I think this experience will help me to see God in a new light.

Please pray for us financially. I recently quit babysitting in light of the current circumstances. I felt that it was hard enough to care for my own child, let alone another child. It is just that some days are hard to just function. I have been trying to keep busy. Just pray that God will provide an opportunity to make money elsewhere. I know he will!! Because of course God is good and he cares for us. I am really glad that God made things so simple, but somehow we manage to make them more complicated. Also, just pray for us as we eagerly await results. I fear that there may be something wrong with Jeff and I-genetically. That kind of scares me a little bit. Thanks all for listening.

Being told, "it's hopeless"

Most of you will already know the information I am about to post, but I want to put it all together, so I can start a blog. This way people can follow our journey from the beginning if so desired. This post will be long since it is complied of all the information thus far that I have reported.

July 11, 2008
so, as some of you know, we had our Big Ultrasound today. Well, it wasn't good. The baby has too much fluid in the brain and not enough tissue. The cerebellum is also messed up. I think it is bigger than it should be or something. Also, something is wrong with the mouth, cleft palate and cleft lip, and the eye orbitual is messed up as well. The hands are clinched up too. All are not good things. We met with the doctor today and she had nothing good to tell us, really no hopes. It may be a trisomy 18, which means that the baby may not make it through utero. If the baby did survive, it may live a week (at most). The is just one option it may be. It could be something else with a chromosome or with a syndrome. None of which would be good, looking at the finding thus far. Regardless, (if baby even survived utero), the baby would be severely mentally impaired-not being able to eat and breath on its own. We meet with the specialist on Monday. He will do an amnio and we will find out more information within the weeks to follow. She even give us the option of aborting...b/c of such little hope. As I write this...I don't know how to feel. I find it interesting that in bible study we discussed God's sovernity(I know spelling is wrong). I believe God is who he says he is. I am just glad that we discussed that last night. I know this is not going to be easy, but I have to be confident in knowing that God is good and that this is in his plans. I need to be reminded of these things, b/c I know they will be harder in the weeks to come. Please pray for us. Pray for Jeff especially-he internalizes things. Wow, this is hard stuff. I don't understand, but it's ok. I just have to trust God is good. God is good. He knows the plans for us. This is to glorify him!!!!

July 14, 2008
Hey all, Thank you all so much for praying for us and encouraging us. Please continue to do so, as we battle during this time. Today we went to see the specialist. Again, no good news. I directly asked if there was any hope and he said no. When the specialist did an ultrasound, he was able to tell us more of what was actually going on. The biggest issueis the brain. Basically, there is not much brain actually there. There are chunks missing. Also, there is piece somewhere near the cerebellum that is missing as well. If the baby survived utero, the baby would not even be capable of thinking, breathing or eating independently. The specialist basically said the baby is a vegetable. The baby is merely surviving becausehe is connected to me. The doctor said there is a 30% chance that the baby would make it to delivery. If the baby made it to delivery, he may not make it through the process. If he makes it through the birthing process, we have to provide treatment/surgeries immediately b/c the baby cannot survive on its own. Best case scenario, the baby could live 10 days, but would ultimately die from respiratory failure. As I said the brain is the biggest issue, there are also minor problems (at least in comparision to the brain). There is a cleft lip and cleft palate, a hole in the heart and cliched hands.Just from looking at the ultrasound, the specialist is lead to believe that it could be trisomy 13. Apparently, trisomy 13 is theworst case-1000 times worse than trisomy 18. We opted first not to do an amnio, but after discussing it today, we will get an amnio tomorrow at 8:30am. We decided we wanted to know the diagnosis so that we could do our research and be betterprepared. This has been a hard day for us. As you all could probably imagine. We are really just numb. I couldn't even cry today because I just can't feel. Despite the hopelessness that has be presented to us. I am still confident in God. I know that he has his hand over this situation. Although I don't understand why, I am just choosing to accept that God is in control and that he must be glorified in this situation. Sometimes I think we just have to stop asking questions, because we'll just go crazy trying to find answers that we may never know. God is good. Let us not forget. I also believe in miracles. Maybe this baby is meant to die in utero and if that is God's plan, so be it. Maybe this baby will live for a short time,and that is ok too. And maybe God will heal this baby in me and give him a brain, and that is fine too. I believe that God is big, no matter how He choses to handle our situation. I trust him. I am scared, but am thankful that I have the Creator to lean on and that he has given us friends and family to encourage and help us through this hard time in our lives.Thank you dear friends for being there for us. Please pray for today and in weeks to come as we find out more. By the way, we are having a little boy. Once we name him, we will let you all know. Also, we haven't been answeringa lot of calls, but appreciate that you have been calling. When the time is right, we will get back to you all. Thank youagain. Thank you.

July 19, 2008
First off, we picked a name. His name is Samuel Arthur. Samuel means "heard by God". Even if we may never hear him, God will. What a reassuring comfort! Arthur is a family name from Jeff's side. Dawson calls him, "baby sam". On thursday we got our prelimary results back from the amnio. I believe the expediated test is called the FSH test (I could be wrong). This test was to determine if the diagnosis was trisomy 21,18, or 13 (which they assumed it was). The test is 95% accurate. From that test, it was determined not to be one of those trisomies. What does that mean? We now have to wait 10 additional days to find out more information. The doctor believes that it could be a partial deletion of a chromosome. Just when we thought it couldn't get any worse, he said, "this is worse than trisomy 13". Ok. God. Really? At this point a partial deletion of a chromosome doesn't mean much. We have to wait on the test to see where the problem actually occured. So, again, we wait some more. In the meantime, we are trying to be strong. My mom just left, so, the following weeks will be a little more difficult. It was so nice to have her here, so jeff and I could just think and talk about the reality of what this could mean for our lives. Again, despite the hopelessness that seems to be bombarding us, I feel peace. I am so confident in God. It is nice to be at a place of peace with God when our world seems to be crashing down. Please just pray that we will continue to believe what is true. Our hearts can easily try to divert us from what is truth. Also, pray that we will be able to get to know Samuel for the time that he is with us. Even if it may only be in my belly. Already Samuel has been a blessing to us. He is showing us just how real our God is. Thanks for listening friends.

July 28, 2008
So, we got more news. We found out the results from amnio on Friday. The tests came back normal. YOu would think that would be good, but still not. NOw we just have to wait for more tests. What a waiting game this is!! The Dr said prognosis is still the same...considering all the anomalies (especially the brain). The last test was to determine if there were 46 chromosomes, and there were. Now this next test has to be sent away to Baylor University and they will actually look at the genes (sounds complex). There are about 106 different syndrome that they can identify through this test. Hypothetically, the test could come back normal. The reason for that is because there are other syndromes that can only be identified through blood. The test is called a CGH. Jeff and I have to give blood tomorrow, then all the stuff will be sent to Texas. I am not sure how long this test will take, but hopefully we will just find out something. I know lots of people are praying for us. Thank you. We will continue to update you as we find out more.