| Hello Everyone, We are so glad to be home! Things are going well, although I am quite exhausted with 2 little boys. Thankfully, I have a wonderful husband that takes the weekend shift, allowing me to sleep some. Josiah has been a great big brother and loves to look in on Isaiah. Ever since our meeting with the doctors last Friday, Isaiah has been eating regularly, according to the schedule they set up. He has been gaining weight as he should. His primary pediatrician was excited about his progress, and says his NG tube can come out in a week if he continues to gain weight. What she doesn't know is I already pulled it out because we haven't had to use it. I'll put it back in only if he needs it. We have had wonderful support from everyone, and everyday we are amazed. It's been rather amazing to be in the presence of a present day miracle. Chris and I truly believe our little man was healed of the diagnosis of Trisomy 18. We can only attribute that to everyone's prayers. Matthew 7:7-8 says, "Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you: For every one that asketh receiveth; and he that seeketh findeth: and to him that knocketh it shall be opened." We asked for healing, and God granted the impossible ("For with God, all things are possible," Matthew 19:26). Isaiah is truly what his name means, "The Lord saves." Isaiah 65:23-24 says, "23. They shall not labour in vain, nor bring forth for trouble; for they are the seed of the blessed of the LORD, and their offspring with them. 24. And it shall come to pass, that before they call, I will answer; and while they are yet speaking, I will hear." The Lord knows our needs before we even ask for them. We have seen this multiple times through this journey so far. We have been given so much without asking for a single thing from anyone. This is the Lord working. He puts it in the hearts of others to help. Our next year is busy and we would like everyone to pray for strength and safety. This week starts our weekly trips to the satellite office of CHOP in Chalfont or to the main campus of CHOP in Philly. I will be making most of these trips alone, sometimes with both boys. I know this will be hard on all of us, but worth it in the long run. Once we have all the appointments scheduled, I will list the dates that we will need help watching Josiah. We would like people to come to our house to watch Josiah, because it will be too much running for me to drop him off somewhere and then drive to Philly. Thank you again to all who have provided meals, gas cards, diapers, and gift cards. A big thank you to my brothers and sisters-in-law for cleaning and decorating our home, and to our neighbors for cleaning our house. It was so nice to come home to a clean smelling/looking house. Thanks to my fabulous Aunt Liz and Uncle Bruce for all the groceries! Also a big thank you goes to my mother-in-law, Viviane, and sister-in-law, Amy, for helping me take care of the boys during the week. Everyone has helped to make our lives easier, and for that we will be forever grateful. We are trying to thank everyone individually by email or by phone calls, but we know we may not get to everyone. Please forgive us if we forget to call or write. Our main prayer requests are as follows: 1. Safety to and from doctors appointments. 2. That Isaiah and Josiah continue to stay healthy and grow up to be men of God. 3. That Chris's job remains stable. We completely depend on his income and health insurance. 4. We really want this whole amazing journey to be used of God and to see lives transformed, including ours. God bless, and enjoy the pictures! (Left to right, top to bottom) 1. Getting ready to go home. 2. We're leaving. YEAH!!!! 3. My first night in my bed at home. 4. Getting to know my big brother. 5. Josiah seeing if Isaiah is awake to play. 6. Cuddle time with Daddy. | ||
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Saturday, March 21, 2009
Update....
Tuesday, March 17, 2009
WELCOME HOME ISAIAH!!!
That's correct. Isaiah IS HOME. Isaiah was discharged roughly 9:30pm Monday night. We made it home around 10:30pm. Words can not express how excited and happy we are to have our little guy sleeping in his own crib and we in our own bed. We just wanted to send out a quick update letting everyone know. We will be sendig out a more detailed update in a day or two.
THANK YOU everyone for your continued prayers and encouraging words. There is not a doubt in our minds God heard us and you. We are truely blessed to have the kind of support we've seen in the past few weeks. Truely words cannot express how we feel about each and every one of you.
Now to bed...
THANK YOU everyone for your continued prayers and encouraging words. There is not a doubt in our minds God heard us and you. We are truely blessed to have the kind of support we've seen in the past few weeks. Truely words cannot express how we feel about each and every one of you.
Now to bed...
Friday, March 13, 2009
BUMP IN THE ROAD...
Isaiah is 3 weeks old today, and is getting cuter minute by minute. We are thankful for every day we have with him. Tonight I was able to help give him a bath. It was alot of fun, and I am very thankful for these moments.
Another day has come and gone, and we don't have a discharge date yet. We were initially told we could possibly go home this Sat., but the surgical team changed their minds once again. They feel that Isaiah is not putting on weight as he should. Mostly, this is due to some mismanagement on their behalf. Isaiah is still at his birth weight 3 weeks later. We had a family meeting today with the surgical team (which we called together) to make sure everyone is on the same page (which for 3 days no one knew what the other was doing---very frustrating!). We now have a plan. Isaiah needs to gain 25-30 grams daily for the next 2-3 days and tolerate his feeds, and then we can go home. Please pray that he gets the hang of breast feeding, tolerates his bottle feeds in between, and gains the 25-30 grams daily. We really want to go home before he actually catches some illness that would keep him in the hospital longer. Also, pray for Chris as he starts back to work on Mon. Josiah will be staying with my brother Dave and sister-in-law Lori until we get home. I will continue to stay at the Ronald McDonald house until we are discharged from the hospital. We look forward to being together as a family in our own home.
Thank you again for all your many prayers, letters of encouragement, and gifts that help keep us going. A special thank you to the Plumstead Christian School kids who sent us all the wonderful cards, words of encouragement, and amazing verses. There were many verses that lifted our spirits, but there was one especially that stood out to me, and I want to share it with all of you---
James 1:12, "Blessed is the man who perseveres under trial, because when he has withstood the test, he will receive the crown of life that God has promised to those who love Him." Pray that we continue to persevere with the right heart attitude!
P.S. There are a few more children to add to the miracle list: Briannon, Mallory, Benjamin, and Daniel. I know they will appreciate your interceding for them.
Another day has come and gone, and we don't have a discharge date yet. We were initially told we could possibly go home this Sat., but the surgical team changed their minds once again. They feel that Isaiah is not putting on weight as he should. Mostly, this is due to some mismanagement on their behalf. Isaiah is still at his birth weight 3 weeks later. We had a family meeting today with the surgical team (which we called together) to make sure everyone is on the same page (which for 3 days no one knew what the other was doing---very frustrating!). We now have a plan. Isaiah needs to gain 25-30 grams daily for the next 2-3 days and tolerate his feeds, and then we can go home. Please pray that he gets the hang of breast feeding, tolerates his bottle feeds in between, and gains the 25-30 grams daily. We really want to go home before he actually catches some illness that would keep him in the hospital longer. Also, pray for Chris as he starts back to work on Mon. Josiah will be staying with my brother Dave and sister-in-law Lori until we get home. I will continue to stay at the Ronald McDonald house until we are discharged from the hospital. We look forward to being together as a family in our own home.
Thank you again for all your many prayers, letters of encouragement, and gifts that help keep us going. A special thank you to the Plumstead Christian School kids who sent us all the wonderful cards, words of encouragement, and amazing verses. There were many verses that lifted our spirits, but there was one especially that stood out to me, and I want to share it with all of you---
James 1:12, "Blessed is the man who perseveres under trial, because when he has withstood the test, he will receive the crown of life that God has promised to those who love Him." Pray that we continue to persevere with the right heart attitude!
P.S. There are a few more children to add to the miracle list: Briannon, Mallory, Benjamin, and Daniel. I know they will appreciate your interceding for them.
Tuesday, March 10, 2009
MIRACLES ARE NEEDED...
We are not the only family that needs a miracle that only God can provide. We have met many amazing children and families here at CHOP and at the Ronald McDonald house that could use your intercessory prayers as well. We ask that you also lift them up as you pray for Isaiah.
In NICU:
Jaylisse, Blake, Lane, Addison, Liya, Tehila, Aaron, and Jordan
In CICU (cardiac):
CarlyJo, Benjamin, Brian, Angelina, and MacKynlee
Having surgery:
Tabitha, Kylie
Receiving Chemotherapy for cancer:
Caleb
Thank you for remembering these precious children and their families.
In NICU:
Jaylisse, Blake, Lane, Addison, Liya, Tehila, Aaron, and Jordan
In CICU (cardiac):
CarlyJo, Benjamin, Brian, Angelina, and MacKynlee
Having surgery:
Tabitha, Kylie
Receiving Chemotherapy for cancer:
Caleb
Thank you for remembering these precious children and their families.
HOMEWARD BOUND...MAYBE?
Just to let you know how things are going...
On Mon., all of Isaiah's IV lines were pulled out, including the PICC line that he was receiving the IV nutrition through. The reason they did this was because the docs allowed me to nurse for the first time on Fri, March 6th! Talk about a great 2 week birthday present for my little fighter! I was absolutely sooooooooooo excited that I cried! It was a huge answer to pray that I could finally nurse my little boy. Unfortunately, Isaiah is not a great eater, and still requires a feeding tube (NGT--nasogastric tube placed from nose to stomach--not permanent) to give him his extra nutrition. He is supposed to eat approximately 2 oz. at each feed, every 3 hours. He normally nurses about 1 oz. from me and then the nurses have to give the remaining oz. of breast milk through the tube. We are hoping that in the next few days Isaiah catches on, and the NGT can be removed.
There is talk about sending us home maybe this week, but it really depends on Isaiah's desire to eat, his weight gain, and his ability to maintain his weight. He may have to go home with the NGT, but that's ok with us, cause at least he will be home. We will be receiving teaching in the next couple of days on how to place an NGT, feed through it, and maintain it.
The results of his kidney scan showed he did NOT have urine reflux back into the kidney which is also a huge praise! The ultrasound of his spine was relatively normal, and the docs expect him to be ok, but will still monitor him for a while. The MRI of his brain showed 3 abnormalities, but they are not critical enough at this point for the doctors to be strongly worried. He will be followed every few months. Our prayer request in regards to his brain/spine is that Isaiah will meet each of his milestones as he continues to grow.
Thank the Lord Chris and Josiah are over their strep throat! A HUGE THANK YOU to my wonderful mom (Lois Emr-Blackwell) who came all the way up from TN to stay with us this past week! She did a great job of taking care of Chris and Josiah which allowed me to be at the hospital with Isaiah. I could not have tackled this week without her. I know Josiah really enjoyed his Grammy, and I know Chris was extremely thankful that he could stay in bed and recover. You are awesome mom!
Also, a HUGE thank you goes out to my brother Doug, who came down from Boston to help us out this past weekend. His being here allowed us to get some of our classes out of the way, which we needed to have done in order to go home. Josiah had a wonderful time playing with his uncle.
Many people ask how I am doing...I am doing ok. I still have quite some swelling around my incision site and in my legs, but it is slowly decreasing. I don't have much down time, so recovery is a little slower. A praise is that because of the C-section, my nerve endings in my stomach were all cut, so I have very little feeling and as a result, very little pain. Thank you for all your prayers that were specifically for my recovery---God has been good!
Many people have also asked how can they help us out...we truly appreciate all the generosity that has been shown to us so far. We cannot thank you all enough. We will be honest and say we are not very good about asking for help. So, I will give you an idea of what we are up against this coming year, and you can ask God to lead you in how you should help us out. We like seeing how God works on our behalf, rather than us asking specifically for help.
Isaiah requires the following for the next year:
1. Every week he needs his splint adjusted for his left arm---this will be done at both the satellite CHOP office in Chalfont, and at the Philly CHOP
2. At 3 weeks, we will be back down at CHOP to be reevaluated by the surgical team
3. At 3 months, CHOP again for neurology checkup and eval.
4. At 6 months, CHOP again for urology---possible surgery for bringing his testicles down into his scrotum (a 2 step surgical process). Also, orthopedics will reevaluate his progress with the splint--if the splint is not working, then Isaiah will need casting. We really do not want him to be casted, because then he will lose the small amount of range of motion he has in his left elbow.
5. Cardiology has not set an appointment yet to recheck his heart. Hopefully, by 6 months, the PFO will have closed up. We really do NOT want Isaiah to have to have heart surgery. Pray that the PFO closes soon!
6. Isaiah may need outpatient physical and occupational therapy, but this is not definite yet. If he does, this will also require a lot of travelling.
7. He will require close monitoring by his primary pediatrician. We will be at the office frequently. I just don't know how often yet. But, I know they want us there for frequent weight checks in the beginning after we are home.
This is just a rough idea of what will be required of us, and frankly, it's ok. Isaiah is with us, and he is doing well, which is better than any of us ever imagined. We went from a death sentence of Trisomy 18 to the amazing chance that Isaiah can go home! We still do not know for sure what Isaiah has; the genetic test results won't be back for another 4 weeks. We do know that he does NOT have Trisomy 18 and probably will live a healthy life (from what the doctors know as of right now). I told God the other day that when I thought Isaiah had Trisomy 18, I was only praying for 2 months because that's all I thought we would have. But, since he doesn't have Trisomy 18, I told God, I changed my mind, and I now want a lifetime with all 3 of my boys!
Thank you all for everything. The many emails, letters, and gifts have been extremely encouraging! Continue to pray for guidance and strength for us. Continue to pass our story along. We love knowing people around the world are praying. Don't be afraid to email us; we love to hear from everybody, even people we haven't met yet.
We hope this is just the beginning to an amazing story that God has chosen to write through our lives! You all have played a part! We love you all!
This is our new prayer for our lives---"But you shall receive power when the Holy Spirit has come upon you; and you shall be witnesses to ME in Jerusalem, and in all Judea and Samaria, and to the end of the earth." Acts 1:8
"When you have nothing left but God, then for the first time you become aware that God is enough." Maude Royden
On Mon., all of Isaiah's IV lines were pulled out, including the PICC line that he was receiving the IV nutrition through. The reason they did this was because the docs allowed me to nurse for the first time on Fri, March 6th! Talk about a great 2 week birthday present for my little fighter! I was absolutely sooooooooooo excited that I cried! It was a huge answer to pray that I could finally nurse my little boy. Unfortunately, Isaiah is not a great eater, and still requires a feeding tube (NGT--nasogastric tube placed from nose to stomach--not permanent) to give him his extra nutrition. He is supposed to eat approximately 2 oz. at each feed, every 3 hours. He normally nurses about 1 oz. from me and then the nurses have to give the remaining oz. of breast milk through the tube. We are hoping that in the next few days Isaiah catches on, and the NGT can be removed.
There is talk about sending us home maybe this week, but it really depends on Isaiah's desire to eat, his weight gain, and his ability to maintain his weight. He may have to go home with the NGT, but that's ok with us, cause at least he will be home. We will be receiving teaching in the next couple of days on how to place an NGT, feed through it, and maintain it.
The results of his kidney scan showed he did NOT have urine reflux back into the kidney which is also a huge praise! The ultrasound of his spine was relatively normal, and the docs expect him to be ok, but will still monitor him for a while. The MRI of his brain showed 3 abnormalities, but they are not critical enough at this point for the doctors to be strongly worried. He will be followed every few months. Our prayer request in regards to his brain/spine is that Isaiah will meet each of his milestones as he continues to grow.
Thank the Lord Chris and Josiah are over their strep throat! A HUGE THANK YOU to my wonderful mom (Lois Emr-Blackwell) who came all the way up from TN to stay with us this past week! She did a great job of taking care of Chris and Josiah which allowed me to be at the hospital with Isaiah. I could not have tackled this week without her. I know Josiah really enjoyed his Grammy, and I know Chris was extremely thankful that he could stay in bed and recover. You are awesome mom!
Also, a HUGE thank you goes out to my brother Doug, who came down from Boston to help us out this past weekend. His being here allowed us to get some of our classes out of the way, which we needed to have done in order to go home. Josiah had a wonderful time playing with his uncle.
Many people ask how I am doing...I am doing ok. I still have quite some swelling around my incision site and in my legs, but it is slowly decreasing. I don't have much down time, so recovery is a little slower. A praise is that because of the C-section, my nerve endings in my stomach were all cut, so I have very little feeling and as a result, very little pain. Thank you for all your prayers that were specifically for my recovery---God has been good!
Many people have also asked how can they help us out...we truly appreciate all the generosity that has been shown to us so far. We cannot thank you all enough. We will be honest and say we are not very good about asking for help. So, I will give you an idea of what we are up against this coming year, and you can ask God to lead you in how you should help us out. We like seeing how God works on our behalf, rather than us asking specifically for help.
Isaiah requires the following for the next year:
1. Every week he needs his splint adjusted for his left arm---this will be done at both the satellite CHOP office in Chalfont, and at the Philly CHOP
2. At 3 weeks, we will be back down at CHOP to be reevaluated by the surgical team
3. At 3 months, CHOP again for neurology checkup and eval.
4. At 6 months, CHOP again for urology---possible surgery for bringing his testicles down into his scrotum (a 2 step surgical process). Also, orthopedics will reevaluate his progress with the splint--if the splint is not working, then Isaiah will need casting. We really do not want him to be casted, because then he will lose the small amount of range of motion he has in his left elbow.
5. Cardiology has not set an appointment yet to recheck his heart. Hopefully, by 6 months, the PFO will have closed up. We really do NOT want Isaiah to have to have heart surgery. Pray that the PFO closes soon!
6. Isaiah may need outpatient physical and occupational therapy, but this is not definite yet. If he does, this will also require a lot of travelling.
7. He will require close monitoring by his primary pediatrician. We will be at the office frequently. I just don't know how often yet. But, I know they want us there for frequent weight checks in the beginning after we are home.
This is just a rough idea of what will be required of us, and frankly, it's ok. Isaiah is with us, and he is doing well, which is better than any of us ever imagined. We went from a death sentence of Trisomy 18 to the amazing chance that Isaiah can go home! We still do not know for sure what Isaiah has; the genetic test results won't be back for another 4 weeks. We do know that he does NOT have Trisomy 18 and probably will live a healthy life (from what the doctors know as of right now). I told God the other day that when I thought Isaiah had Trisomy 18, I was only praying for 2 months because that's all I thought we would have. But, since he doesn't have Trisomy 18, I told God, I changed my mind, and I now want a lifetime with all 3 of my boys!
Thank you all for everything. The many emails, letters, and gifts have been extremely encouraging! Continue to pray for guidance and strength for us. Continue to pass our story along. We love knowing people around the world are praying. Don't be afraid to email us; we love to hear from everybody, even people we haven't met yet.
We hope this is just the beginning to an amazing story that God has chosen to write through our lives! You all have played a part! We love you all!
This is our new prayer for our lives---"But you shall receive power when the Holy Spirit has come upon you; and you shall be witnesses to ME in Jerusalem, and in all Judea and Samaria, and to the end of the earth." Acts 1:8
"When you have nothing left but God, then for the first time you become aware that God is enough." Maude Royden
Saturday, March 7, 2009
Some More PICTURES...
| I know you've all been waiting patiently. I know it's been a while so here they are. You can click on the picture to make each one bigger. (Left to right, top to bottom) 1. Mommy and the nurses like spiking my hair. (whatever works for the ladies) 2. LOOK, NO TUBE!!! 3. My Big Brother is holding my hand. 4. Each visit Josiah gets better and better with his brother Isaiah. 5-6. Josiah gets to hold his brother for the first time. | ||
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Thursday, March 5, 2009
PRAISE THE LORD, ISAIAH POOPED!
YAHOO!!!!!!!!!! I know this may be funny to many, but those who are in the medical field and any parent that has had a child go through abdominal/bowel surgery knows how important this first step is! On Mon. night, March 2nd, Isaiah had 2 poopy diapers. I/We were so excited, because this was the first important step to his recovery and coming home.
On Tues., the surgical team decided to put Isaiah's NG tube to gravity instead of suction, (naso-gastric tube that went from his nose to stomach to drain the contents from his stomach), to see how he would tolerate making his own bowel move the secretions through. They wanted to see if he would throw up, become bloated, have increased pain, or would he pass everything through. Huge praise---he tolerated the NGT being to gravity and his stomach output decreased from 160 ml to only 10 ml in a 12 hour period. The docs and nurses had never seen such a significant decrease in such a short period of time. I told Isaiah's nurse, Dara, that it was God intervening because we had thousands of people all over the world praying for him.
On Wed., the surgical team removed Isaiah's NGT. Then, ISAIAH WAS ABLE TO EAT FOR THE FIRST TIME EVER!!!!!!!!! I was able to feed him his first bottle of 5 ml of breast milk. He took it with minimal difficulty, and then with great precision, he burped all on his own. It was just so wonderful to be able to do something for my little fighter. By the evening, the surgical team increased his feedings to 10 ml every 3 hours. He has been tolerating his feedings without any problem. He is actually waking up hungry. The next step is to make sure he moves his bowels again and is able to gain weight without the help of the IV nutrition he has been getting.
Today, Thurs, they are doing the scan of his kidneys to see if he has any urine backing up into them. They were unable to do this scan earlier. Hopefully, he will pass with flying colors.
Our main requests right now are:
1. Chris and Josiah both have strep throat, and Josiah has diarrhea. Pray for quick healing and that I don't become sick (I tested negative for strep)
2. For safety as my mom goes home Friday---she's been a huge help.
3. That Isaiah stays healthy and can come home soon.
A BIG THANK YOU to our church family for your generosity! We cannot thank you enough for helping us out. Also, to my immediate family for all your gifts, travelling down here, taking care of Josiah, and keeping up with our house. Thanks to our amazing neighbors for cleaing our house and keeping an eye on it. You all are meeting our needs before we even make them known---that is GOD!!!!!
We love you all very much!
P.S. Clarification: The first picture of Isaiah in the last posting was of him after surgery (he's sleeping). The 2 after that were the day before surgery. Sorry if there was any confusion.
On Tues., the surgical team decided to put Isaiah's NG tube to gravity instead of suction, (naso-gastric tube that went from his nose to stomach to drain the contents from his stomach), to see how he would tolerate making his own bowel move the secretions through. They wanted to see if he would throw up, become bloated, have increased pain, or would he pass everything through. Huge praise---he tolerated the NGT being to gravity and his stomach output decreased from 160 ml to only 10 ml in a 12 hour period. The docs and nurses had never seen such a significant decrease in such a short period of time. I told Isaiah's nurse, Dara, that it was God intervening because we had thousands of people all over the world praying for him.
On Wed., the surgical team removed Isaiah's NGT. Then, ISAIAH WAS ABLE TO EAT FOR THE FIRST TIME EVER!!!!!!!!! I was able to feed him his first bottle of 5 ml of breast milk. He took it with minimal difficulty, and then with great precision, he burped all on his own. It was just so wonderful to be able to do something for my little fighter. By the evening, the surgical team increased his feedings to 10 ml every 3 hours. He has been tolerating his feedings without any problem. He is actually waking up hungry. The next step is to make sure he moves his bowels again and is able to gain weight without the help of the IV nutrition he has been getting.
Today, Thurs, they are doing the scan of his kidneys to see if he has any urine backing up into them. They were unable to do this scan earlier. Hopefully, he will pass with flying colors.
Our main requests right now are:
1. Chris and Josiah both have strep throat, and Josiah has diarrhea. Pray for quick healing and that I don't become sick (I tested negative for strep)
2. For safety as my mom goes home Friday---she's been a huge help.
3. That Isaiah stays healthy and can come home soon.
A BIG THANK YOU to our church family for your generosity! We cannot thank you enough for helping us out. Also, to my immediate family for all your gifts, travelling down here, taking care of Josiah, and keeping up with our house. Thanks to our amazing neighbors for cleaing our house and keeping an eye on it. You all are meeting our needs before we even make them known---that is GOD!!!!!
We love you all very much!
P.S. Clarification: The first picture of Isaiah in the last posting was of him after surgery (he's sleeping). The 2 after that were the day before surgery. Sorry if there was any confusion.
Sunday, March 1, 2009
1 WEEK DOWN, 1-3 WEEKS TO GO!
Hello Everyone!
I cannot believe already one week has gone by, and Isaiah is still here and fighting strong for his life. He is so precious. I love holding him and just looking at him. I think he is one of the most beautiful babies I have ever seen (Josiah being the other one), but I guess I am a little biased.
Just to give you a thorough update on his surgery:
Isaiah's stomach surgery was this past Thursday, Feb. 26th at 12n. It was one of the hardest things I have ever had to do to watch my little 6-day-old, with eyes wide open and looking at me, being rolled away from me into the OR room. It seemed like his little eyes were saying, "Mommy where are they taking me and what are they going to do to me?" His helplessness made me cry. I just had to give my little angel over to the Great Physician to do the surgery through the expertise of Dr. Joy Collins' hands.
Thankfully, the surgery went well. Dr. Collins was able to perform the duodenal bypass with minimal difficulty. She was very happy with the work. However, Dr. Collins did find more problems once inside Isaiah's little stomach. She found that he had what is called 'intestinal malrotation', meaning his cecum and small intestines were in the wrong location. She had to rearrange Isaiah's cecum so that it is now on the left side of his abdomen, and his small intestines are on the right side. Also, she removed his appendix to prevent any complications from it in the future. Dr. Collins was unable to visualize the gall bladder, but the common bile duct (that drains the bile from the liver to the intestines) was present. There is still a small possibility that Isaiah could develope biliary atresia in the future, but the gastro-intestinal specialist thinks that if Isaiah makes it to 3 months of age with a functioning bile duct, he will unlikely develope liver problems. This is a HUGE praise. Isaiah will continue on antibiotics and IV feedings for 1-3 weeks until his bowel/stomach recovers. He needs to have bowel sounds, pass flatus, and have a bowel movement before they will start feeding him. I/We are hoping for 1 week versus 3 weeks. The sooner he eats, the closer he is to coming home.
Over the past few days,the following doctors came to see Isaiah: neurology, urology, and gastro-intestinal. On Tues., Isaiah will have an ultrasound scan of his kidneys to make sure he is not having a reflux of urine back into the kidneys. Also, the urologist stated that at about 6 months of age, they will do 1-2 small surgeries to bring the testicles back into the scrotum, if they haven't descended by themselves at that time. Neurology wants to scan his spine because Isaiah has a very small dimple at the base of his back that could indicate problems with his spine. Plus, when going to surgery, the anesthesiologist was unable to thread the epidural catheter into Isaiah's spine. The neurologist just wants to rule out any unseen/missed deformities. Also, because of the missing septum pellucidum (I don't know what this does or mean), they will check Isaiah's eyes. GI feels Isaiah is doing quite well right now, and they will continue to monitor him. Cardiology will continue to follow him because Isaiah still has the PFO (Patent Foramen Ovale) in the heart still open. The PFO should close on its own in a couple of months, but if it doesn't, he would need surgery. Hopefully, he will not need surgery.
I was encouraged the other day by a complete stranger named Matt. He is a professional counselor with his own private practice here in Philadelphia and he works closely with CHOP. He had a full ride to Delaware College and had half of his tuition taken care of by University of Penn for his masters. Matt has both hand and arm hypoplasia (short arms and hands) and is in a wheelchair. I stopped him because I wanted to know how he felt about being born with deformities and how life treated him while he was growing up. I explained to him we just gave birth to a little boy with similar arm/hand hypoplasia issues. Matt said life was tough, but he was glad his mom decided to have him and he wouldn't change anything even if he had the opportunity to have normal length arms. He was a real inspiration to me, and gave me a lot of hope for the future of Isaiah. Matt even said if we ever needed to talk, we could look him up. Every day we have small and big blessings, like Matt, enter into our lives that encourage us to keep going.
Every day God reminds us that He is ever near, hearing our requests and answering our needs, often before we even make them known. He hears the groanings of our hearts, "...But the Spirit itself makes intercession for us with groanings which cannot be uttered. He maketh intercession for the saints according to the will of God," Romans 8:26-27. As tough as this situation is, we have been taken care of by some amazing people and have met some unbelievable people also going through difficult times. The Ronald McDonald house is beautiful, roomy, and they serve us delicious food daily. It's nice not having to worry about what we are going to eat every day. Josiah is now down with us, and even though it makes things a little more crazy, we missed him so much and are glad to be back together. God has taken care of even the smallest of details, just like He pays attention to the sparrows and the lilies of the field (Matthew 10:29-31 and Matthew 6:25-30)
We will continue to keep you updated as we receive more information. As a side note, when Isaiah comes home, we will continue with CHOP regulations to keep him safe and healthy (no balloons, flowers, stuffed animals, or sick people). We will also keep visiting to a minimum until we get a good idea of how he is going to do. We ask that you respect and support our decision to keep our little boy as safe as we can.
With great appreciation for ALL you have done, The Millers
I cannot believe already one week has gone by, and Isaiah is still here and fighting strong for his life. He is so precious. I love holding him and just looking at him. I think he is one of the most beautiful babies I have ever seen (Josiah being the other one), but I guess I am a little biased.
Just to give you a thorough update on his surgery:
Isaiah's stomach surgery was this past Thursday, Feb. 26th at 12n. It was one of the hardest things I have ever had to do to watch my little 6-day-old, with eyes wide open and looking at me, being rolled away from me into the OR room. It seemed like his little eyes were saying, "Mommy where are they taking me and what are they going to do to me?" His helplessness made me cry. I just had to give my little angel over to the Great Physician to do the surgery through the expertise of Dr. Joy Collins' hands.
Thankfully, the surgery went well. Dr. Collins was able to perform the duodenal bypass with minimal difficulty. She was very happy with the work. However, Dr. Collins did find more problems once inside Isaiah's little stomach. She found that he had what is called 'intestinal malrotation', meaning his cecum and small intestines were in the wrong location. She had to rearrange Isaiah's cecum so that it is now on the left side of his abdomen, and his small intestines are on the right side. Also, she removed his appendix to prevent any complications from it in the future. Dr. Collins was unable to visualize the gall bladder, but the common bile duct (that drains the bile from the liver to the intestines) was present. There is still a small possibility that Isaiah could develope biliary atresia in the future, but the gastro-intestinal specialist thinks that if Isaiah makes it to 3 months of age with a functioning bile duct, he will unlikely develope liver problems. This is a HUGE praise. Isaiah will continue on antibiotics and IV feedings for 1-3 weeks until his bowel/stomach recovers. He needs to have bowel sounds, pass flatus, and have a bowel movement before they will start feeding him. I/We are hoping for 1 week versus 3 weeks. The sooner he eats, the closer he is to coming home.
Over the past few days,the following doctors came to see Isaiah: neurology, urology, and gastro-intestinal. On Tues., Isaiah will have an ultrasound scan of his kidneys to make sure he is not having a reflux of urine back into the kidneys. Also, the urologist stated that at about 6 months of age, they will do 1-2 small surgeries to bring the testicles back into the scrotum, if they haven't descended by themselves at that time. Neurology wants to scan his spine because Isaiah has a very small dimple at the base of his back that could indicate problems with his spine. Plus, when going to surgery, the anesthesiologist was unable to thread the epidural catheter into Isaiah's spine. The neurologist just wants to rule out any unseen/missed deformities. Also, because of the missing septum pellucidum (I don't know what this does or mean), they will check Isaiah's eyes. GI feels Isaiah is doing quite well right now, and they will continue to monitor him. Cardiology will continue to follow him because Isaiah still has the PFO (Patent Foramen Ovale) in the heart still open. The PFO should close on its own in a couple of months, but if it doesn't, he would need surgery. Hopefully, he will not need surgery.
I was encouraged the other day by a complete stranger named Matt. He is a professional counselor with his own private practice here in Philadelphia and he works closely with CHOP. He had a full ride to Delaware College and had half of his tuition taken care of by University of Penn for his masters. Matt has both hand and arm hypoplasia (short arms and hands) and is in a wheelchair. I stopped him because I wanted to know how he felt about being born with deformities and how life treated him while he was growing up. I explained to him we just gave birth to a little boy with similar arm/hand hypoplasia issues. Matt said life was tough, but he was glad his mom decided to have him and he wouldn't change anything even if he had the opportunity to have normal length arms. He was a real inspiration to me, and gave me a lot of hope for the future of Isaiah. Matt even said if we ever needed to talk, we could look him up. Every day we have small and big blessings, like Matt, enter into our lives that encourage us to keep going.
Every day God reminds us that He is ever near, hearing our requests and answering our needs, often before we even make them known. He hears the groanings of our hearts, "...But the Spirit itself makes intercession for us with groanings which cannot be uttered. He maketh intercession for the saints according to the will of God," Romans 8:26-27. As tough as this situation is, we have been taken care of by some amazing people and have met some unbelievable people also going through difficult times. The Ronald McDonald house is beautiful, roomy, and they serve us delicious food daily. It's nice not having to worry about what we are going to eat every day. Josiah is now down with us, and even though it makes things a little more crazy, we missed him so much and are glad to be back together. God has taken care of even the smallest of details, just like He pays attention to the sparrows and the lilies of the field (Matthew 10:29-31 and Matthew 6:25-30)
We will continue to keep you updated as we receive more information. As a side note, when Isaiah comes home, we will continue with CHOP regulations to keep him safe and healthy (no balloons, flowers, stuffed animals, or sick people). We will also keep visiting to a minimum until we get a good idea of how he is going to do. We ask that you respect and support our decision to keep our little boy as safe as we can.
With great appreciation for ALL you have done, The Millers
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