Tuesday, March 10, 2009


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


  1. Strongly praying for Isaiah and your family. I am so happy that going home is in the very near future for your family. What a blessing that will be! Know that I am thinking about and praying for you guys.


  2. What an amazing God we have! What an amazing and inspiring faith you have! What a beautiful baby God gave you! You all have my continued prayers.

  3. Joy,
    Just wanted to let you know that I read in your list of upcoming needs that one of them is outpatient OT/PT and a good amount of traveling with it. I just wanted you to know that you are most likely entitled to Early Intervention services, which covers children birth to 3. The awesome thing is that these services are most often provided in the home! Hope this brings a bit of peace about this area. If you need anything in regards to info/resources for OT/PT when you get to that point, please get in touch with me. I am a pediatric OT (mostly school aged)but have a good friend who has done EI OT and could probably answer any questions you have! You continue to be in our prayers!