2 Months, 8 Days, and Counting.....YAHOOOOOO!

How excited we are that Isaiah made it to his 2 month birthday, and then some! God sure is good, "and His mercies endure forever," I Chronicles 16:34. Isaiah is doing well, except for reflux. He's now on Zantac three times a day to help with the reflux, which is very painful for him. We need alot of prayer in this area. He sometimes cries alot, and it can be really trying. I spend a good part of the day holding him while he cries. By the time Chris gets home, I am exhausted. I try to keep reminding myself that it all could be worse, and that this too shall pass. The hardest part of all of this is that Isaiah gets himself so worked up from the pain that he has been refusing to nurse. Most of you know how much I love nursing, so this has been extremely difficult on me. I often have to make a bottle to get him to eat anything.



This past Wed., April 15th, we were at CHOP for a visit with Dr. Haber, a GI specialist that specializes in biliary atresia (liver problem related to the missing gallbladder). She was very happy with the way Isaiah looks and said if he does not develop any symptoms in the next 2 weeks, he will probably never develop biliary atresia. Praise the Lord for that! Only 1 more week, and he's in the clear. I was also able to deliver the 5 thank you baskets to everyone that helped us out at CHOP and the PRMH, thanks to the help of our wonderful friend Stacy.

On Fri., April 24th, we were back down at CHOP to see Isaiah's cardiologist, urologist, ortho/plastics doctor, and have an echocardiogram done. He now weighs 9 lbs. 2 oz. and is 22 1/2 inches long. All of the doctors were happy with Isaiah's progress. The cardiologist will see him again at 8 months of age to continue monitoring the hole in his heart (the patent foramen ovale/PFO). The doctor is not concerned with Isaiah's heart, and feels the PFO will eventually close on its own. The urologist will still have to perform surgery to bring down his testes, but otherwise everything is functioning ok. The ortho/plastics doctor was very happy with the progress of his left arm. He was actually surprised how effective the splinting was working. We will continue splinting his left arm until surgery at 6 months. The urologist and plastics doctors will coordinate surgeries to cut down on how many times Isaiah has to undergo anesthesia. At 1 year of age, Isaiah's right hand will be operated on. Hopefully, that will be the extent of his surgeries. Thanks to my wonderful friend Rochelle S. for keeping me company on a very busy day.

We continue to be amazed by the outpouring of generosity from our friends, family, neighbors and church family. We could not go through this without all of you behind us. Ecclesiastes 4:9-12, "Two are better than one...for if they fall, the other will pick him up." Many times it was your faith and trust in God that gave us the strength to go on. God gave us our miracle son because of many of you. Thank you from the bottom of our hearts.

By the way, you are all welcome to call, email, or visit our little miracle man. We are still requesting that if you are sick or if someone in your home is sick to hold off until you are all better. Also, we are still not accepting stuffed animals because of all the dust and microbes they carry. Sorry about the delay in inviting you to come. It's just been a little crazy around here. We look forward to having you meet our amazing little boy. Thanks for your patience! God bless!

Some more pictures

Hope everyone had a great Easter. 1 Peter 1:3 Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead... Thank you to everyone that offered to help Joy with her trips to CHOP in Philadelphia. We received many offers and appreciate each and every one. Thank you to our friends Stacy and Rochelle for taking time out of their day to go with Joy for these two visits. And now for some pics.... (Left to right, top to bottom) 1. The thinker... 2. Josiah playing with stickers 3. Josiah sharing his stickers. 4. Brothers playing. 5. He wasn't happy but he sure was cute! 6. Our attempt at Easter pics. 7. There's that smile 8. Check out my Easter outfit. 9. Our Family

We're back online...

Sorry for not getting out an update sooner. Our power cord to our laptop died and the new one just came in the mail. Chris has been extremely busy at work and he didn't have the chance to send one out from there either.

FYI...If you recieved an ealier email stating "Eeyore is cute..." we were not the ones that sent that out. That email had a number in the subject instead of a title. Our updates will always have a title. This is one thing you can look out for when reading our updates. Please do not reply to those emails. Sorry about this. We're not entirely sure how this happened yet or if it will happen again.

So where to begin....

On Wednesday, Isaiah went to his local pediatrician. He now weighs 8 lbs. and is 21 inches long. He's gaining weight very well and the doctor said we don't have to go back until his 2 month checkup. It's only 2 weeks away but at least we get a 1 week break from this office visit.

On Thursday, Joy went down to CHOP by herself to see Dr. Joy Collins, general surgeon. She was the doctor who performed Isaiah's intestinal bypass. She was so pleased with his progress that she signed off on his case (1 doctor down, 6 to go). After this visit, Joy had to go to the CHOP office in Chalfont so that Isaiah could have his splint adjusted for his left arm. Surgery for either arm is not yet scheuled, and probably won't be till at least 6 months to a year from now.

Isaiah's next appointment is April 15th for a visit with the GI doctor, Dr. Haber. She is following him to make sure he does not develop biliary atresia. Then, on the 24th, Isaiah sees his cardiologist, urologist, ortho/plastics, and will have an echocardiogram done. Joy is looking for someone to accompany her on both of these visits. On the 15th, she has 3 thank you baskets to deliver and needs help carrying them.

When all of this started and we thought Isaiah had Trisomy 18, we were only hoping for 2 months with him. Well, God has been good and not only gave us the health of our precious miracle, but He has been giving us more than 2 months with Isaiah. ("Isaiah 58:8 Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the LORD will be your rear guard.") We could not be more grateful. Every day is a gift. We all love being with him. Every day Josiah asks to hold Isaiah and loves to give kisses to him or play with his hair. It is wonderful to watch. We look forward to the day when the 2 of them are running around and playing together.

We want to continue to thank you all for your continued support and prayers. We honestly do not know where we'd be if we didn't have God in our lives. We remember talking with some families at the Ronald McDonald house and to hear their stories and know that they didn't know God and have that personal relationship with Him was saddening. We ask that you also continue to pray for the children we listed on one of the previous blog entries. We know that two of them, Tehila and MacKynlee, have left the hospital and are now home with their parents.

Here is a small video of Josiah playing with Isaiah. Enjoy.

Update....

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.

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...

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.

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.