Thursday, February 26, 2009

He's OK.

Praise the Lord! Isaiah made it through his 3 hour abdomnal surgery. We will post all the details later b/c right now we are exhausted. Continue to pray b/c he has a long road of recovery ahead of him. Thanks again for prying for us. We plan to go to bed early tonight so look for an update tomorrow.

PS - just a reminder that if you want to look at the pictures on Mike's Blog, the password is "emr"

Wednesday, February 25, 2009

Some Good News but still Need Your Prayers

Hi everyone,

We wanted to wait till we had some concrete news before posting anything. It has been quite a roller coaster down here.

First and foremost we are so happy to we have a gracious and loving Savior in our lives. He is giving us strength amongst the storm. Thank you also, for all those that are praying for us. "The eyes of the Lord are on the righteous, And His ears are open to their cry. (Ps 34.15)"

Now for some good news.
The one test confirmed that there was drainage from the liver. He does not have the life-threatening biliary atresia like they thought. This is a HUGE praise. Isaiah will not need this surgery for his liver at this time, but will still need to be monitored due to the fact that they still cannot find his gallbladder.

Isaiah had a repeat echo-cardiogram to confirm that the hole he initially had in his heart did close. Praise the Lord for His good works! The hole did close.
Isaiah also had a repeat MRI. The MRI showed no excess buildup of fluid in his brain. He does have prominent ventricles, but sometimes boys do have more prominent (bigger) ventricles. They feel at this time, that that is all this is. Isaiah will still have to be monitored by measuring head growth and seeing if he is meeting his milestone markers of development.

Isaiah also had his left hand and arm splinted to start the correction process of returning the hand back to the top of the wrist (ulna bone). He REALLY does NOT like the splint.

Also, Joy was discharged from the hospital yesterday night. We were able to stay almost till midnight so we could spend time with Isaiah. We were also able to get into the Ronald McDonald house which is a mile down the road. We have a beautiful room and the people here are wonderful and helpful. They have a shuttle to and from the hospital. We are thanking the Lord that he provided a close and inexpensive place for us to stay. Joy's mom flies in this weekend and will join us on Monday. Hopefully if all goes well, we will also be able to have Josiah down with us.

Our biggest prayer request is that Isaiah is now planned to go into surgery on Thursday morning or afternoon. (This terrifies us!)
There is a web like membrane blocking food from going into his large intestine. The doctors will go in and create a by-pass to fix this. In a couple days and if all goes well, Isaiah will be able to start feedings. Hopefully, in 1-3 weeks, he will be able to eat and nurse regularly. This has been hard for Joy not to nurse up to this point. She has sometimes felt helpless not being able to help/heal her little boy. Please pray that Isaiah gets over this hurdle and that Joy for continues to heal and gain her strength back.

We were able to have Josiah down here today to visit, thanks to one of our wonderful sisters-in-law, Lori. (We have been blessed with a wonderful extended family.) Josiah was actually asking to see "baby", and he called Isaiah, "brother". Josiah also calls Isaiah, "Zaiah". It was really very cute and we were excited to see Josiah trying to bond with Isaiah.

Thank you again for all your prayers.

Monday, February 23, 2009

Monday's Status

Hi everyone,

Yesterday was a good day just to spend time with Isaiah. It was a quiet day for rest.

Just to give you a quick update. There are a lot of tests being done today. We are hoping to have some more feedback and answers tomorrow. Surgery has been postponed indefinitely till test results are in.

PS - Sorry for not getting more pictures up yet. On the other hand, we were blessed with a professional photographer that works for an organization called "Now I Lay Me Down To Sleep" (NILMDTS). Click Here for the organization website. On the right hand side of this blog, there is a link for "Mike Landis Photography" (password is "emr") and you will be taken to his personal blog where he posted some of the pictures he took this weekend. Sorry, we were just told that a password was implemented. For those that want a copy of the picture, you can right click and "save picture as" to your computer. Please feel free to look at his site and see some more beautiful pictures of Isaiah.

Saturday, February 21, 2009

No Surgery Tonight - Saturday

The doctors have decided to postpone the surgery till Monday. They are waiting for some more test results to get back so that they can maybe try to combine surgeries and fix a couple things at once. At this point the doctors feel he is stable enough to make it to Monday where they will be able to address more of the problems at once. The surgeries planned for Monday are critical. Please continue to pray for strength for Isaiah. That he'll remain stable till Monday and fight through his surgery.

Thank you all for your continued prayers and thoughts. We are reading them all when we get the chance.

Chris and Joy

Isaiah - 2 Days Old

Dear Family and Friends,

Just letting you know a quick update about Isaiah. All I'm about to tell you is all we know right now. We don't have answers to all your questions; we are still waiting on many tests and other doctors visits. We will probably know more on Monday when the rest of the staff is in.

From head-to-toe:
BRAIN: Isaiah still has hydrocephaly, but how severe it may be is still unknown. He may have brain damage/delay. He also missing the septum pellicudum between the 2 hemispheres of the brain, but he is responding to us and tracking us with his eyes.

HEART: On Monday, the cardiologist will reevaluate his heart to make sure it is functioning ok and that the defect did close up.

DIGESTIVE TRACK: Isaiah has been unable to eat. He is getting his nutrition via IVs, called TPN and Lipids. He has had a tube in his stomach to drain it for the past day. Today, the docs tried to clamp the tube to see if his body could digest and pass his stomach secretion. Unfortunately, Isaiah threw up. He is now going for another test. If this shows a blockage, he will have emergency surgery today.

LIVER: He is showing signs of biliary atresia with bile backing up into his stomach. Biliary atresia is a life threatening condition. The docs will test this on Mon.

KIDNEY: Right now his right kidney may be blocking his testes from descending. They are not in his scrotum, and the docs have not been able to locate them yet. But, both of his kidneys appear to be functioning. Also, the right kidney may be pulling on one of the adrenal glands.

MUSKULOSKELETAL: Both of his hands are missing thumbs. His L arm is severely deformed due to the missing radius, and the orthopedic docs plan on splinting it to try to make it straighter by moving the hand back onto the ulna. After they do this, Isaiah will have to be down here every week for evaluation just for his bones alone. He has extra ribs, and all his ribs are thinner than what they should be. Also, he has a floppy sternum, meaning the ribs are not firmly attached to the sternum via cartiledge. His chest is somewhat concave.

His lab work is normal and he does not appear to be uncomfortable. Just pray because we have so many unanswered questions and we are really struggling. We still don't know what his outcome will be. We ask that if you have any questions about the terminology in this letter, to please look it up. We just don't have the time to explain everything.

Today in my devotions, (I've been reading Jabez's prayer-I Chronicles 4:9-10) God calls Isaiah, saying, "Whom shall I send, and who will go for Us?" Isaiah answers, "Here am I Lord, send me." Isaiah 6:8 Pray that we will be willing to send him to wherever God calls him.
Thank you again for your continued prayers and support.

Friday, February 20, 2009

First Pictures


Isaiah Benjamin Miller
6.8 pounds
19.9 inches
Time 10:07am

Mom and Baby are doing well. Joy had to wait to see the baby till the anaesthesia wore off a little. We just got back from seeing our little guy down in the NICU. Isaiah is doing really well. We don't have much info on his condition other than he's stable. The doctors are all examining him and still trying to figure everything out. We won't know anything till the tests come back but the doctors are pleased with how he's doing so far. We will write more when we have some more answers.

Thank you for your continued prayers. We can see the GREAT PhYSICIAN at work and it's encouraging.

Chris, Joy, Josiah, and Isaiah

Sunday, February 15, 2009


Hello Everyone,

This is just a quick update on what happened down at CHOP on Tues. My Aunt Liz and I met with the neonatal surgeon, the social worker, the genetic counselor, the nursing surgical coordinator, the lactation consultant, and one of the midwives. It was a very busy day. The surgeon, Dr. Leichty, will be part of a surgical team that will be assessing Isaiah when he is born. He feels Isaiah probably will need some type of surgery early on. They will obtain blood work, X-rays and an ultrasound shortly after he is born to determine if his stomach/bowel issue are critical enough to perform surgery right away, or to see if they can wait. We won’t know until Isaiah is born whether or not he can eat. They will probably use a naso-gastric tube that goes from his nose into the stomach to decompress the stomach until he is stabilized. They will also probably use IV nutrition for awhile.

Shortly after his birth they will also assess his brain growth and development. He may need intervention for his hydrocephaly, but right now the doctors plan to just monitor him. They will also assess his liver. If it is functioning ok, no surgery will be needed at this time.

Unfortunately, the results of the amniocentesis have not been conclusive, and the final results are not in yet. As of right now, the doctors have absolutely no idea what Isaiah has. They basically said, we will have to wait until he is born for them to determine what he has and their plan of treatment. Dr. Zackai, the geneticist/morphologist, will come see our son and give her best educated assessment for diagnosis and treatment. It is rather frustrating. Chris and I have absolutely no direction. Most of the time, we don’t even know how to feel. Isaiah may still live a very short life, but maybe he could live. We just don’t know.

Since Friday, Feb. 20th, is the day of my scheduled C-section, CHOP has given us specific guidelines for us and for any family/guests to follow. Please keep in mind that we are in a critical situation, and this is not a normal delivery. I am having major abdominal surgery (a C-section) and Isaiah will be rushed to the NICU. We know that there will be a lot of people who want to come and visit, call, or send gifts, and we deeply appreciate everyone’s generosity. But, we are asking that everyone be extra sensitive to our unique situation.

CHOP’s guidelines are as follows, per Marty Hudson, MSW,LSW:
1. No visitors on Friday until the doctors give us the ok to call a few people to come down. We are only allowed a short list of visitors. Whoever is on the list will be notified by us. Please don’t take it personally if you don’t get a chance to come down to CHOP.
2. No stuffed animals allowed.
3. No flowers allowed.
4. No balloons allowed.
5. Absolutely no sick people allowed. If you or your children have any type of cold, big or small, you will not be allowed to see Isaiah. Please understand that Chris and I also do not want to be exposed. We have to protect Isaiah at any cost.
6. Please visit the blog for updates or call your contact people for information. We will update the blog and post pictures as soon as we are able to. Please do not call us at the hospital. We will have our computer, so we can receive emails.

The following individuals will be the point of contact for the Emr/Solt families and for our church family: David and Lori Emr. For the Miller/Novia families, Glenn and Viviane Miller will be your contact people. Please only call them if absolutely necessary. Otherwise, the blog will be updated as soon as we have information. The contact people will not have more or newer information that is not already on the blog. As the days progress at CHOP, they will have a better idea as to how to help or assist us.

Thank you again for all your prayers and support. We are constantly reminded of God's grace and provision in this difficult time. He has provided over and over again when we needed it most and in the most unexpected ways. God has stayed true to His promise that He "will never leave us or forsake us," Deuteronomy 31:8.

Monday, February 9, 2009

How we're doing...

Hello everyone,

Sorry this wasn't a little sooner. I'm sure most are wondering how the amniocentesis went. Well, we definitely saw God's hands in action and all your prayers coming through as there were no problems during the procedure. God guided the doctor's hands and with the other held Isaiah still. It was amazing to see. Joy was monitored for about 30 minutes post procedure and everything was normal.

We now have to wait to see what comes back from the tests. It will probably be about 1-2 weeks till the results are in, if they are able to obtain results off of the fluid. Once the tests come back we should be able to plan for care when Isaiah comes into this world.

Our next visit will be Feb 10th. Joy will be going down with her Aunt Liz. This is just one of her weekly checkup visits. Unfortunately, I need to work so that I have the time off when Isaiah is born. Joy is hoping to meet with one of the surgeons (Dr. Hedrick) this visit. This is the only person we have not met with that is on the team down at CHOP (Children's Hospital of Phila). Please pray that the surgeon is able to meet with us before the delivery, because we need to discuss what type of feeding tube Isaiah will need. She will also be meeting with a lactation consultant to learn how to possibly feed Isaiah, with the surgical coordinator, and with the genetic counselor to learn more about what Isaiah possibly has. It will be a long and busy day for Joy, so please pray for strength for her.

Our main request for prayer is that we had to pick a date for a scheduled C-Section. We were hoping for February 27th but the doctors feel this is too late. Their concern is that Joy could go into labor early and since Isaiah is currently still frank breech, we would run the risk of having an emerency C-section. So, as of right now, it will be on February 20th at 8:30am. The medical team will check Joy before the procedure to see if Isaiah turned. If Isaiah turns, they will hold off on the C-section. We are both overwhelmed at the fact we will have another son in the world next week, and we still don't know how to prepare for him. That is our biggest fear, we just don't know what to expect and we have no way of planning. Everything is out of our hands and in God's. Pray that we will truly put our confidence and faith in the Great Physician.

Thank you ALL for your prayers and emails. They are truely uplifting and we see God working through all this. It's amazing to see how many people are praying for us. We know that there are people all over the world praying for our little son.
1 John 5:14-15
14. And this is the confidence that we have in him, that, if we ask any thing according to his will, he heareth us:
15 .And if we know that he hear us, whatsoever we ask, we know that we have the petitions that we desired of him.

In Christ's arms,

Chris, Joy, Josiah, and Isaiah

Sunday, February 1, 2009

Urgent Prayer Requests…

Dear Family and Friends,

We have some urgent prayer requests that we would like you all to pray for. We honestly feel everyone’s prayers. God uses them to keep us going, give us strength, and give us hope to face another day.

We were down at CHOP again last Thursday, Jan. 29th. We were supposed to meet with the neonatal surgeon, Dr. Holly Hedrick, but she was pulled away to surgery and we never got to meet with her. Instead we met with everyone else on the CHOP team, which included a nurse midwife, an in-patient OB/GYN doctor, a social worker, an anesthesiologist, our regular OB doctor, and we received a tour of the NICU and the new maternity ward. Everyone was very nice and took a lot of time with us. They never rushed us. We were treated like the most important people at that time. They helped put our minds at ease with our transfer of care officially down to CHOP.

We had another ultrasound while were we there. Isaiah is growing nicely. He is approximately 5 lbs. Unfortunately, he has more fluid on his brain and has borderline hydrocephaly (water on the brain, not just in the ventricles). I am still hoping he can be born naturally, which leads us to our prayer requests.

The most pressing issues right now are as follows:
1) All of us have been sick. Josiah is recovering from pneumonia, RSV, and an ear infection. Thankfully, we caught it in time and he didn’t end up in the hospital like he did last year, but we still had to postpone his 2nd birthday party. Chris and I have been fighting colds, but then on Sat. I ended up with food poisoning from Olive Garden. Pray that we all get better soon.
2) Isaiah is breech again, and the doctors at CHOP are tentatively scheduling a C-section for my 38th week (around the 3rd week of Feb)of pregnancy. I am terrified of having a C-section, because I need to be able to get around and help take care of a sick baby. Pray that Isaiah turns head down and makes it home for 2 months.
3) On Tuesday, Feb. 3rd, we are back down at CHOP for an amniocentesis. They will hopefully determine exactly what Isaiah has so we can prepare a plan of care for him. They will also be taking blood from both Chris and me for further testing. I am scared about having the amniocentesis done. Pray for steady hands for Dr. Johnson and calmness of heart for me, and that we will be over our colds by Tuesday.
4) Pray that I will be able to pick up some work in the hospital before Isaiah comes.
5) Lastly, we have some unspoken requests that really need God’s intervention. Pray that God works out the situations for us.

Thanks again for all of your support. Please keep in touch. We have been encouraged to know that even people we have not seen or talked to in many years have been praying on our behalf.