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

6 comments:

  1. Oh Joy! Thank you for posting your update. I'm so glad Isaiah's surgery went well on Thursday. He is such a beautiful little baby and I am praying for him constantly. Give him lots of kisses from me!!! xoxo Take care of yourself, too. :)

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  3. Hello, Chris & Joy. We are friends of everyone on your blog list. :-) The Emr's, Jackson's & Mangin's! And I have been following your blog from a while back and you guys have all been in our prayers. It has been so amazing to see the love and strength you have as a family as well as the hearts you have for God to get you through such uncertain & challenging times. Isaiah is absolutely BEAUTIFUL little baby. The recent news must be very encouraging. I love your story of meeting Matt. What hope & blessings God sends our ways to confirm our questions, concerns & sometimes doubts. I look forward to reading more about Isaiah's progress and following your journey as a family. God bless!
    (sorry I deleted the above...I mispelled a few words. :-)

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  4. we are rejoicing with you at the Lord's work in Isaiah, and His continued blessings - we will keep praying!

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  5. My school and Bible Study group are praying for you. I'm so encouraged that you are seeing God's active hand on Isaiah's life. Praying with you and for you!

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  6. He is a BEAUTIFUL baby and is truly a gift from God. As a mother you have every right to be biased!! I have enjoyed following "Isaiah"s Journey" and your faith through all of this has been a real blessing to me. We know that God has a plan and I will continue to pray for all of you. Ellie Steppey

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