J's Newborn News, pt. 1

The following are the "Cliff Notes" to time we spent in the NICU. It comes from the newsletter that we sent out regularly to a rapidly growing body of people praying for J after she was born.

Special Edition
Greetings from Peoria! And Welcome to the first edition of J's Newborn News, a monthly newsletter (we hope!) dedicated to updating all of those we know are thinking of and praying for our little Micro-Preemie (we have been informed that she is too little still to even qualify as a preemie.).
On February 12th, at 6:32pm, JL Christian was born by an emergency, 45 second cesarean section. She was 16 weeks early and weighed just 1 pound, 1 1/4 ounces and was 11 1/2 inches long. The last month has been one of the longest of our lives, but at the same time we can't believe it went so fast.
J has been busy. She has had one helicopter ride, three infections, seven ventilator changes, eleven medications (not counting I.V. electrolytes, nutrients and fluids) and who knows how many lab tests. If you can guess how many X-rays she has had to-date (3/17), we will send you an autographed photo--when she learns how to write! :)
J did not have any of the cerebral hemoraging that is possible in such tiny babies and the doctors were able to close her PDA (patent ductus artery--which shunts blood away from the lungs in the womb where they are not functioning) with medication. She did, however, develop a condition called PIE, or pulmonary interstitial emphysema, where the little alveoli in the lungs burst and leak air into the surrounding tissue. It is caused by trauma to the lungs, which in this case, was probably a combination of pneumonia and the ventilator. But...X-rays have shown no sign of PIE for more than a week now!
The only continuing problem that she has had is what is called Chronic Lung Disease. Although it is serious, it is also not unexpected. A baby this age would not even be in contact with oxygen in the womb, but since the ventilator support is unavoidable, the oxygen that keeps her alive is also toxic and can cause damage. It is possible that J may come home on some type of oxygen support, and it may take her until she is about three to grow out of it completely. Currently, steroid treatment to help with the inflammation and lots of milk and a little time to help her grow are the orders of the day. There are some side effects to the steroid, including an increased risk of infection, and stunted growth (ha-ha!).
The other thing that the doctors are trying is nitric oxide therapy. NO is an experimental gas that acts as a vosodialator (or opens up the blood vessels to give a better exchange of oxygen). If it is effective, it will work well in conjuction with the steroid to help relieve J's lungs.
In all of this, God has supported and sustained us and shown Himself mighty in our lives. Just the way He helped us to discover how sick I was and provided for us to deliver Jurene at the optimum time staggers me when I think about it. And the way He has upheld our daughter...I cannot even put it into words. All along the way, He has given us reassurances that He is taking care of us. When I asked for a verse to cling to, He gave me Job 33:4, which says, "The spirit of God hath made me, and the Breath of the Almighty hath given me life." It doesn't matter what the ventilators do or don't do. As long as our Sovereign God chooses to support her, J will be fine. And what a party we are going to have when she comes home!!
A special thank you to all of you who have sent cards, gifts, and "gas money". We can't even begin to thank you all. Knowing that God's people are praying for us is one of the things that make it possible to face the NICU each day. We love you all!
Going to press we have learned that J now weighs 1 pound, 11 ounces! Wow!
Just a note from hindsight: I am amazed that I even spoke of her coming home in this first newsletter. I know that we had faith and were trying to be positive, but they had only given us a 20% chance of survival. Daily, we wondered it that would be the day we would say Goodbye. What a poke in the eye for the whole idea of "chances"! There are no chances with a God who never sleeps or slumbers and is never taken by surprise!

Issue 2 4/12/99
Wow! What a month this has been! As we celebrate J's two month "birthday", and I reflect on the progress she has made, at first it is hard to believe that she has come this far. But then I remember who our God is, and how He loves to surprise us by answering our prayers in ways we never would have dreamed of.
This month we have had some dark nights, great relief, spiritual lessons, and many firsts. And through it all, you have continued to pray. Will I ever be able to express to you the great peace and calm that God sends each time the prayer chains are started?
The Journey
One month ago, the settings on J's ventilator were as high as they could go, and it still wasn't enough. I made a dumb mistake then. I took the matter out of God's hands and asked the doctor what his "gut" feelings were about her prospects. And he told me. He was "very pessimistic about her survival." I forgot that gut feelings don't count when God is in control. The next twenty-four hours was very black for all of us. They wanted to try an experimental gas (the Nitric Oxide I mentioned in the last issue). We signed the consent forms and waited and prayed. And the NO began to take effect!
Next, they added the steroid, Decadron, to J's list of medicines. In conjunction with the NO, it worked wonders. In short, last week J came off of the ventilator and onto a CPAP (continuous positive airway pressure), and yesterday she graduated to a nasal cannula! She is only getting 25-29% oxygen now. The air we breathe is 21%. What a long was she has come!
The next step in the plan is to wean her off of the Decadron so that she can grow faster. After losing a little, J has managed to gain some weight, and now weighs a hefty 1 pound, 13 1/2 ounces! She continues to do well with her feedings and might get to try a bottle feeding in a week or so.
Last month, I gave you the opportunity to guess the number of J's X-rays from birth through March 17th. The correct answer is 74!

Some Firsts
Chad and I have both gotten to hold J!*
I gave her her first bath! She hated it!
First real tears
First unassisted breaths
We can see her whole face now!

Out of the mouth of...
"That baby needs some steak!" Eric, age 11--on seeing J's picture for the first time.
"How is that Baby? Has she outgrown that wedding ring yet?" Amy, age 6*

More on holding her later! A picture in the next post will explain the last comment.