Monday, December 25, 2006

Merry Christmas!!!

Today, we celebrate the birth of our Lord and Savior, Jesus Christ. We pray that you will take the time to look at the humble way in which the Lord came to earth, born of a virgin and in a stable trough meant for animals. We have so much to be thankful for, most of all that Christ came as our gift of salvation. Please don't get wrapped up in the many gifts that you may receive but take the time to think on the gift that Jesus gives to each one of us if we choose to accept Him. Luke 2:11 says, "For there is born to you this day in the city of David a Savior, who is Christ the Lord." Christ came to be our Savior, to save us from our sins so that we may spend eternity with Him. As you reflect this day, think about what Christ has done and is doing for you in your lives each day. We wanted to share some pictures with you from today and also from a short trip that we took to the Great Wolf Lodge in Williamsburg, Virginia a couple of weeks ago. It is a resort that has a huge indoor water park, so even when it's cold outside it's not there. We all really enjoyed it and they had the lodge beautifully decorated for Christmas. It was nice to be able to relax a little. Today, we remember Isaac as well, knowing that he is watching us from heaven with our Savior, Jesus. Thank you all for continuing to keep us in your prayers as we continue healing through this time in our lives. We know that the Lord is comforting us through His word and His people. We appreciate all of the cards and encouragement that you have provided to us. We love all of you very much and we pray that you have a very Merry Christmas!!!

Thursday, December 14, 2006

Autopsy Results

Today Lori and I met with Isaac's doctor at Georgetown Hospital in DC to go over the preliminary autopsy results. We authorized an autopsy so that maybe the doctors could learn something about his case and maybe out of curiosity for myself. I hoped that we could learn that everything was done possible to keep Isaac alive. Thankfully my prayer was answered. It appears to me, as well as the doctors, that Isaac really did not have much of a chance in this world. For that I am eternally thankful that Lori and I got to spend two weeks with him. A lot of parents don't even get that. Isaac was in such bad shape when he was born at Bethesda Naval and he probably would not have made the trip if the ECMO center was not so close at the time. Thinking back I am amazed at how God worked everything out so that we could spend time with him. Those two weeks were so full of stress but I would not trade it for anything in the world.
The results of the autopsy showed that he had a total absence of a diaphram on the left side and due to that his intestines, spleen, stomach, and partial liver were up in his chest. His left lung weighed only 11 grams while his right lung weighed 44 grams. Not much to work with on the left side but ultimately the pulminary hypertension, which kept his body from processing the oxygen that he needed, killed him. I know that God is sovereign over all of this but I can't help but be amazed that he was able to live for as long as he did. The doctors dont know why he was doing so well coming off of ECMO and then within a couple of days had died. His blood gases were so good, his oxygen requirements were limited on the jet(high frequency) ventilator, but his hypertension just came back and once you are off of ECMO you can't go back on. I could explain why but I dont exactly know all the terms but lets just say you pretty much have one shot at it. Isaac's doctor has to be one of the most wonderful human beings that Lori and I have ever met. You talk about a "bedside manner". She seemed to always be there. I know she invested (as well as the other doctors and ECMO nurses) a lot of hope, love, and care for Isaac and as she says it's not the ones that are easily cared for that you build an attachment to but it's the tough cases, the ones that don't make it, that affect you the most. Now that may sound simple but it is profound that these caretakers were affected by Isaac's death. Many of the nurses came to Isaac's funeral. We have offered to Georgetown that if in any way we can be a comfort to future families like us that they can contact us. I don't know if that will ever happen but we want to be there to answer questions, provide hope, and pray for others going through this ordeal. Please pray for a little girl that had to go on ECMO that was Isaac's roommate at Georgetown. I don't exactly know her medical status except to say that she is doing well. I hope and pray that she was able to have the corrective surgery and that her parents are being sustained by the Lord during their trial. Isaac's doctor is on the right and one of Isaac's faithful ECMO nurses (our heros) is on the left.

Tuesday, December 5, 2006

God's Grace is Amazing...

Well, by God's grace we have made it through these last few difficult days. We had Isaac's funeral on Saturday and it was a blessed service. We thank all of you who were able to attend for being there to support us during that time and for those of you who sent flowers from all over, they have been a great blessing and made the house look very beautiful. We had the grave side service today at Quantico National Cemetery and it was a beautiful, crisp day. We feel honored that Isaac is buried with so many service men and women who have served this great country of ours. Thank you all again for continuing to keep us in your prayers, we know that one day we will see our son again! Praise the Lord!
The photo is of Joe's family to include Dave's (brother) family, father, and mother.

Friday, December 1, 2006

In Lieu of Flowers...

Hello Everyone, I have had several people ask me if they could make a donation to a charity instead of sending flowers. The following is a web address to the Research/Support group for children with Congenital Diaphragmatic Hernia. This group only runs on donations, so if you would like to donate to them the instructions are on the web page. The address is as follows, We again want to say thank you to all of you over the country and the world that have prayed for us continually. We will never to be able to say thank you enough for everything everyone has done for us. Please just know how much all of you are appreciated. All of our love, Joe, Lori, Christian, and Aaron.

Wednesday, November 29, 2006

At Peace with the Lord....

We would like to say thank you to all for praying for Isaac and our family since his birth. Isaac passed away this morning around 9:30 am. Joe and I were both able to hold him for the last precious moments of his life. We are at peace knowing that Isaac is with our Lord and Savior, Jesus Christ. He was a very special little boy and he always will be. We know that Isaac touched many people while he was here so we would like to extend an invitation to anyone who would like to pay their respects to attend his funeral service at Engleside Baptist Church on Saturday, December 2, 2006 at 10:30 am. The address is 8428 Highland Lane, Alexandria, Virginia.
The phone number is 703-780-5410 if you need directions or if you would like to send flowers. You will never know how much we appreciate all of your prayers, love, and kindness to our family. Please pray that God would continue to sustain us during this time of greif. We have included the first picture of him because that is how we would like him to be remembered. God Bless all of you!!!

Tuesday, November 28, 2006

A Roller Coaster Day....

Hi Everyone: I wanted to update you on the day today. Well, Isaac wasn't doing well again this morning and the doctors were telling us that there was not much more they could do. Joe and I prayed for the Lord's will to be done for Isaac and again the Lord is continuing to sustain Isaac. They did a few things and his 02 Saturations have come back up again and his last blood gas was better as well. His last chest x-ray continues to show that his lungs are clear. Please pray that the Lord will show His will to us and spare us from these days of emotional highs and lows. I will be honest and say that these last two days have been draining on both Joe and I and we are continuing to lean on the Lord's strength throughout this trial in our lives. Thank you to all of you have been praying constantly for us, we so appreciate your love and thoughtfulness to our family during this time.

A Quick Update

Good Morning! Well, it has been a long night but Isaac is still holding his own. His blood gases have improved slightly and he had come down a little on the ventilator but he is still on 100% oxygen. I think the doctors are just going to keep him stable for the day and see how he does. Please continue to pray for little Isaac as he is still fighting for his life and by God's grace he will pull through. Joe and I appreciate all of the prayers, love, and support you all have given us. It is nice to go online while here in the hospital and read your comments. Thank you!!!!

Monday, November 27, 2006

Please Pray......

Hello Everyone: This is an update from this morning. Issac was not doing well and around 10:30 this morning his doctor called and told us that we needed to come. The outlook was very grim and we were praying for the Lord's will to be done. The doctors and nurses have been working very hard to stabilize Issac and have given several different medications and some more Serfactant to try to open his lung buds again as he had developed some blood in his lung on the right side. At the moment his O2 Saturations have come back up and his blood pressure is at a more normal rate, and his blood gases have improved slightly little by little. We have had to lean heavily on Our Lord today as we don't really know what His will is for Isaac and we are being sustained in His great love, mercy, and grace. We ask that you would continue to pray for Isaac as it is going to be a long night for him. He is a fighter and we have seen that on more than one occasion. We just pray that the Lord's will be done and that He would give us the strength to continue to endure through this trial and the emotional roller coaster that it has been. Thank you all for continue to uphold us in your prayers daily. May God Bless all of you!!!

A Special Moment...

Good Morning Everyone. I wanted to share a special moment that I had last night with Issac. After he was off of ECMO and had the lines removed from his neck, I was able to change his diaper for the first time. Cheryl, his night nurse had asked me if I wanted to change him and I, of course, jumped at the chance since we really haven't been able to touch Isaac very much or move him around because of the canulas in his neck. It was something very special to a Mom to be able to change a simple diaper when you aren't able to hold your son. I guess what I am trying to say is don't take those simple little things for granted.
Please continue to pray for Issac as he has had to go back up on the jet ventilator and to increase his oxygen this morning. I will try to update you all as soon as I can on his condition. Thank you all for continuing to pray for us, we are so encouraged by all of you.

Sunday, November 26, 2006

Praise the Lord!

To all our family, friends, neighbors, etc we want to thank you for praying for Isaac, especially yesterday, due to his bleeding around the canulas (surgical lines for the ECMO). He is much better now and in fact when I called this morning before church he was idleing on the ECMO. Essentially that means that his body had mostly taken over the functions and only needed the high frequency ventilator. The ECMO lines where being "pinched" off and the machine was only funtioning so that the blood in the lines would not clot. As of right now (4:45pm) the surgical team has arrived to take out the canulas so that he will be off of the ECMO for good.
Our pastor, Brad Lapiska, had started the prayer chain at our churchin Alexandria yesterday for the bleeding around his canulas (and it turns out it just looks bad) but God answered a more needy prayer and that was for him to come off of the ECMO totally. Praise the Lord! for that. I tell you I feel so unworthy of his mercy at this time and am more humbled by his grace than I think I have ever been. Why would a God so good show mercy on sinners such as us? As I ask that I know the answer as well. Because he is a loving and gracious God.
Isaac is not out of the woods yet though. Please continue to pray for him and that he continues to get healthier and that he will not have any other set backs, if it pleases our Lord. May we continue to be a blessing to Him as we are tested and may our light so shine in this dark world during this time. There is no doubt that God's goal is not to heal our baby boy but for us to glorify the Lord in so doing. Our continued thanks to those who have blessed us in the many forms that God has called them to be able to do. We are being edified daily by your prayers, blessings, and conversations. Lori and I will continue to update you all on Isaac's status as he begins another battle for life. So far we are 1 for 1. Batting a 1000. Whatever, hope my sense of humor does not offend anybody.

Saturday, November 25, 2006

Prayer Request....

Good Afternoon. We have a prayer request for today. Issac has had some bleeding from the site where his canulas(tubes going into his neck) are. Basically, this has been happening for the last few days but now it is more significant and they have been giving him blood which is just taking the place of what bleeding is occurring in his neck. We would ask you to pray that God would stop his bleeding in that area and to give the doctors wisdom as to what to do. They have placed some kind of surgical glue around the site to help stop it, so prayfully that will help. They have also changed his antibiotic to cover more so that he will not get an infection in that area. Thank you for you prayers and support. We are so appreciative of all of them. God Bless!
Todays photo is of some of the nurses that have been taking care of Isaac since he came to Georgetown and actually even while he was at Bethesda. On the right is Joan who escorted Isaac from Bethesda the day Isaac was born. She is a skilled Nurse Practitioner who was just as concerned about Isaac as I was when I first saw him. Lori was still recovering when I first saw him in the NICU after he was hurried away from the delivery room and at that time things looked really grim and it was up to Joan to stabilize him for the trip to Georgetown. What a pro she is and even more important she was able to ease our grief a little. Have not seen her in awhile but she might be on vacation or something. On the left is Mary Anne (hope I got the spelling right) who is probably one of the most senior ECMO nurses that is taking care of Isaac right now. She works only two days a week and when she does she works those days back to back with the next weeks days so she ends up working four days in a row. Please pray for her as she is out of town dealing with a death in the family. She has been a real source of encouragement to us. These nurses don't have to talk to you, and some don't, but I think most of them got into nursing because they care and they became specialized in NICU because they a heart for infants. It's amazing, we are so blessed by God.

Friday, November 24, 2006

Many Thanks....

Good Morning! First, let me update you on Isaac. Thankfully, his condition is pretty much staying stable at this point. He has been staying at the same setting on the ECMO Machine for the past couple of days and they are continuing to monitor his right lung to see if they can get some more of the lung buds to open up and to help circulate his oxygen better. They are, at this moment, getting ready to switch out the ECMO Machine to a new one. This is not an uncommon practice as over time with the blood constantly circulating the machine doesn't necessarily work as well as it did when they first put someone on it. Please pray for a smooth transition and that Isaac will handle the change well. Secondly, we would like to thank the Lord for his continually sustaining us during this trial in our lives. He has provided the best Medical Staff possible and it is so comforting to both Joe and I to be able to come home at night knowing that Issac is well taken care of. We know that the Lord will allow Issac to come off of the ECMO machine when it is His time and not our own. The Lord has truly provided His wonderful love to us each day and for that we say, "THANK YOU, GOD!" Thirdly, we would like to say thank you to the doctors and ECMO Nurses who diligently and with much love take care of Issac each day and night. We appreciate so much the care he is receiving. Fourthly, we want to say thank you to our family, friends, and brothers and sisters in the Lord for constantly praying for our entire family and for Issac's healing. We know that it is because of your many prayers that we, as a family, are able to cope with the stress of having Issac in the NICU and on ECMO. Please continue your praying as God's word says to "Pray without ceasing." I don't think you will ever know the amount of gratitude that we have for the wonderful show of love you all have shown us during this time. We hope and pray that you all had a wonderful Thanksgiving holiday. May God be glorified for what He is doing in all of our lives.

Wednesday, November 22, 2006

Focusing on God

Yesterday was a tough day for the Santimaws but once we got home and wrote out the days blogs we were encouraged by God to stand "in the Lord" and not in our own might. Proverbs teaches us to "trust in the Lord with all thine heart; and lean not unto thine own understanding. In all ways acknowledge Him, and He shall direct thy paths. I think we found ourselves in need of hearing that verse again. Amazing how God can use a verse that we know and have heard many times but forget when we need to recall it. The doctors and nurses do some wonderful things but it is God who is ultimately sustaining Isaac's life right now. No human will can keep him alive unless God allows it to happen.
Isaac's health is sustaining right now and it looks as though he is going to be like most EMCO babies and stay on ECMO for 2-3 weeks. That is sitting better with us for the time being and like I said we are waiting on the Lord not man but we can obviously see that God does not want him off ECMO yet. Could change tomorrow, could change in weeks to come. Lori and I have decided to try to keep the stress to a limit and not burn the (proverbial) midnight oil. Not that we are there during the night, although next week will be night visits due to the fact that I have to go back to work, but we have spent periods of many hours up at Georgetown anticipating him coming off of ECMO. We still have Christian and Aaron to love and they need their mommy and daddy too. Isaac will probably have some of the ECMO equipment rotated before the weekend is out though as a precautionary maintenance procedure and he will probably see some stress from that but pray that he makes it through.
I wanted to comment on today's photo. Sitting beside Lori is one of the nurses. Jean is a senior nurse at Georgetown and has been doing great things her whole career to include research, education and NICU care. She was the first face I saw when I arrived to the NICU center at Georgetown and I think she sensed that I was Isaac's father. I could barely get out that fact while I was still grieving over my son's condition. Every time she sees us in the NICU she is an encouragement to us with her personality and genuine care for us as well as our son. She gets paid to care for Isaac but has been a real blessing to us as well. All the nurses and especially Isaac's doctor have been a source of comfort during this stressful event. Praise God Isaac is still alive. We are getting to know him in small ways and are thankful for that.

Tuesday, November 21, 2006

One Week Old

Well today was a trying day in the Lord's grace. I know that sounds bad but our expectations with Isaac have been frustrated. Isaac has basically over the past few days been steady. Thank God he is not digressing however both Lori and I are frustrated that his health is not improving. Today was especially trying because his alarms were going off more than in the past. His blood pressure was going down to an unsafe level and it turned out that his ECMO catheter was leaking or oozing. This caused a blood clot on the exterior of the catheter which, although is unsightly, caused a problem later when trying to diagnose the blood pressure problem. We find ourselves somewhat knowledgeable about what the data means on the equipment however we don't understand it all in context. Thus this creates an atmosphere of just watching and waiting for the numbers to improve and when the numbers go in the opposite direction we are standing on our toes the whole time. So our prayers are that we continue to wait on the Lord and while waiting we are strengthened. I know a lot of you believe that we are being strong and have a great testimony but at times we are week in our own might. Only God can provide us the happiness that we so want right now and we have to be ready to glorify God and not anything else. Please pray for Lori as I believe she is starting to show (expectantly) more emotions than she has before. She is a Mom who just wants her baby to be alright. I know every mom out there understands that. But praise the Lord that He is still sovereign over our lives and His will be done. Please also pray for the baby next to Isaac (don't know name due to privacy) who is having problems with the same hernia Isaac has. She is not on ECMO but we overheard some of the doctors talking and she is not getting enough oxygen as of tonight. Please pray that this little child and her parents will be spared of this trial. I was encouraged to see their pastor praying with them over the baby the other day. I hope to have an opportunity to talk to the father some time soon. Please also pray for my mother who is being a blessing to us by watching our two healthy (praise God) boys while we are at the hospital. She is not used to that kind of duty. She is also taking on a lot of Lori's responsibilities around the house while we are gone. She is truly a godly woman in her testimony. Also we ask you to pray for our sister-in-law, Noemie, who lost here grandmother last week. She knows the Lord though so she is in a better place now. May Noemie find peace during this time when she is not able to go to the funeral with the rest of her family. Lastly today, I still want to thank the Lord for providing Isaac wonderful hospital care workers. These woman work crazy hours and sit at his bedside all the time making sure every vital sign is just right. They also have to deal with parents like us who keep asking "Is he okay?", every time an alarm goes off. I don't know if they know it or not but they are providing a ministry to us.

Monday, November 20, 2006

A Stable Day...

Joe and I went to see Isaac this afternoon and we were amazed at the amount of fluid that he has lost, especially around his head. He is only able to lay on one side of his head (the ECMO lines are on the right side of his lower neck) and that is where the fluid was building up. Also, his color was looking more like a normal newborn baby. His chest x-ray continues to show improvement of his right lung. He has had to go back up a little bit on the flow of the ECMO machine which is basically telling the doctors and us that he is not quite ready to come off of the machine. Issac had an Echocardiogram done yesterday on his heart to check the function of the valves. It showed that one of the valves is not closing all of the way which is having some effect on the body's natural ability to process oxygen and CO 2. This is a normal function in utero and can happen in term babies but happens a lot in preemies as well as babies like Isaac. Please pray specifically that this valve would close so that there can be a normal function of his heart.

The pictures are of Big Brother Aaron watching over his brother Issac yesterday and a picture from today while he was awake.

Update on Issac's Condition

Good Morning Family, Friends, and Brothers and Sisters in the Lord:

First, we would like to say thank you to all of you who have been praying for Issac and our family. Words cannot express the amount of gratitude that we have for all of you in continuing to keep us in your prayers.

To update you on Issac's condition, he is staying stable on ECMO and has made a lot of progress over the last few days. The doctors are slowly taking him down off of ECMO to see how well he can do the work of his heart and lungs. He has had to go back up a little over night but they said that would be expected since his lung is trying to work. The chest x-ray is showing that his right lung which is his good lung is starting to expand and do some of the work that it needs too. His chest tube was taken out on Friday night and he also went down on the amount for his ventilator as well and he seems to be tolerating that. The best news though for us is that he started to open his eyes and look around. This happened first Friday night with one of his nurses and then Joe and I had the experience of seeing him open his eyes and look at us and follow our voices yesterday. In speaking with the nurse this morning, she said that he was alert and stretching and watching them as well. The Lord is truly blessing this little boy everyday with His small miracles. We ask that you would continue to pray that Issac will continue to use his own lung more and more and be able to get off of the ECMO when he is ready to do so. Right now we are taking one day at a time and seeing how the Lord is working in little Issac's body.

I am including a picture for you all from yesterday when he did have his eyes open and looking around.

Thank you again for praying for Issac and for us. It is so appreciated and we know that through all of your prayers that God is answering in so many ways.

All of our love to you,

Joe, Lori, Christian, Aaron and Issac