Check out the Chunk

I mean really, does it get any better than this?

Because of our new schedule, I (dad) hadn't seen Sara since early Wednesday morning (like 12am). So when I walk in last night I couldn't believe how different Sara looked. She hasn't been on the nasal cannula since Wednesday morning and her sats have been higher than when she was on it (at least when I was there). She is up to almost 5lbs 6oz. She was wide-eyed before her feedings and I thought - well, let me just put her in our bag and we'll go to the house!

Practicing karate!

Yes, I know my place when I get home

But alas, we must wait a bit longer. Shunt is still scheduled for next Thursday, meeting with Neurosurgeon on Tuesday to discuss all of that. We'll give you all the details then so you can know how to pray. Sara continues to improve on her bottle feeding and breast feeding. Thanks for checking in and praying - keep it up!

Let the Chaos Begin

Ok, we went to Q3 feedings Monday evening. That means every third feeding will be by bottle, plus Jennifer still gets to breastfeed once a day. Do the math - Sara gets 8 feedings a day (every three hours), every third is a bottle. So instead of a daily schedule which we have done for the last several weeks consisting of afternoon and evening visits, now it is a 3 day rotating schedule involving trips to hospital to bottle feed, breast feed, pump, help take care of 2 others girls, sleep, eat, pray, and oh yeah, breathe. The good thing about it all is - one step closer to coming home.

We were able to secure a courtesy room at the hospital, so we will be sleeping up there 2 out of every 3 nights. I figure we'll get really comfortable in the new routine and then it will all change again. That's usually the plan.

Sara continues to do well. The biggest issue with her coming home seems like it is going to be eating. It is still early to be sucking-swallowing-breathing, and everyone is happy where she is now. But, she is going to have to improve to come home. Right now she can really eat well for a brief time (10-15 minutes) and then she is tired. Thankfully it does not seem to be an issue of IF she can do it, but how long she can last. Over the next week or two pray her stamina and strength increase.

Latest word on the shunt - the surgery has been scheduled for the 23rd. We really have a peace about this. In fact, we are kind of excited that is she has to get one, let's get it done and get home ASAP.

Thanks for praying for Sara's cousin, Elisabeth, they got a good report on the bilirubin level and won't have to check back in for a week.

7 weeks old (34 weeks gestation)

Jennifer and I have found that living with the almost daily ups and downs of NICU are handled better by taking a week by week perspective. So here you and we go...

Day of birth (27 weeks gestation)

1 week old (28 weeks)

2 weeks old (29 weeks)

3 weeks old (30 weeks)

4 weeks old (31 weeks)

5 weeks old (32 weeks)

6 weeks old (33 weeks)

7 weeks old (34 weeks)

Had a busy, but good day with Sara. She had a CAT scan this morning and eye exam around noon. Jennifer got the day going with a solid 30 minutes of good breastfeeding at 6am. Her CAT scan was done later. We haven't heard from the neurosurgeon, but the technicians reading was - it looks better. The horns of the fontanel were smaller and the bones of one part of her skull were closer together. This is all very good news. But hang on, it gets better.

The eye exam went well. She did not appreciate being held down and a magnifying glass and bright light shone into her eye, but she cooperated. So far everything looks ok, there is one spot he wants to watch, so probably in a few weeks she will get another exam.

Her time with the pediatric doctor went well. She is showing more strength than just a few days ago. More strength in holding up her head, which was a concern. The dr was very happy in the progress in that area. There are several things Sara has been doing well that give the dr optimism about her future- although they will never tell you for sure. The fact she has never needed caffeine to strengthen her lungs, she only had episodes of bradying once when she needed blood, she has never had seizures, feeding has gone on without a hitch, and her temperature has been so steady in an open crib. This is controlled by the brain and the dr thought for sure she would be in and out of an isolete trying to make the transition. But she hasn't.

Jennifer did well feeding her a bottle at noon. We think she was worn out from breastfeeding and didn't eat as much. We'll see tonight.

The good news we received was how happy the neurosurgeon was with her progress. We were told by a nurse he tapped on her little box and she would look in that direction. Then he would shine a flashlight into her eyes and her entire body recoils in horror. This is all good. In fact the nurse said that the neurosurgeon said he was tickled at her progress. I asked her - did he actually say tickled? She said yes. According to the dr - maybe a shunt next week. Of course as recently as Wednesday the shunt was supposed to be this week. He says we will watch it. Oh, we're watching it alright!

One other thing, as you so lovingly and faithfully pray for Sara, say a prayer for her cousin Elizabeth. Pray her bilirubin levels get below 10 by tomm morning. We'll let you know.

7 weeks down, ??? to go

How we wish we knew. Maybe 2? 3? 4? more? Too many variables in the air still. But, Sara is rockin' along and getting better. Her weight is now 2345 grams (5lbs 2.7 oz). She continues to do well on room air with a little flow. She ate well from a bottle today, both times we got to feed her. And she did well nursing with Jennifer.

The little hands by her face, can you beat that?

One determined Mamma!

Cozy and cuddled, ready for the groceries!

We found out Saturday that now we can feed her two bottles a day and at another feeding she can try to nurse. Nursing is still more difficult for Sara at her age, but she will get it. Bottle feeding is much easier. As the lactation nurse told us, she could eat from a bottle across the room. Anyway, with the extra feeding time we now make 3 trips to the hospital a day. Jenny by herself at 6am to nurse. And then both of us at noon and 9pm. When they add another bottle feeding we may take advantage of a courtesy room to save on the trips back and forth. We'll see. It definitely makes our life more hectic (gosh and it has been so boring), but at the same time it is exciting because she is doing more and we are getting closer and closer the one of the greatest days in our life - take her home!

The big variable still on the table is the shunt and I discussed that below. Our church family, Paron Baptist, had a special prayer for Sara tonight and it is so cool to have that support and love believing with you that with God all things are possible. Thanks you all!

Thoughts and Reflections on the Inevitable

At least that is what we are being told, the shunt is inevitable, it is coming. One of our favorite nurses told us that is how we need to look at this, and we are. But she also said, short of a miracle, Sara is getting a shunt. And there you have it - short of a miracle – that’s why we pray. We follow and love a God who has revealed Himself through the living Word (Jesus Christ) and the written Word (The Bible) to be a God who transcends the physical universe. He isn’t limited by time, weather, circumstance, or the decrees of man. Jesus continually did miracles in part to reveal that He is God and he did things only God could do. Apparently only God will keep Sara from getting a shunt. And that’s why we pray and ask you to do the same.

Of course, Sara does have hydrocephalus. Look back at historical pictures of children born with “water on the brain” as it was called. It’s not pretty. Thank the Lord he has given man the creative ability to come up with a device called a shunt. Without it Sara may have no chance at normality, or even life. And so this shunt may be the best thing in the world for her – why pray that it doesn’t happen?

I was holding Sara Friday night while Jennifer was in another room pumping, and just looking into her face. Amazed at the beauty and perfection of a baby. All you parents know what I’m talking about. And I was thinking – why did God allow her life to be like this? What do we say when she is 3 or 4 and notices this strange tubing under the skin of her head? Or when she gets a little older and notices she is the only one of her friends with this strange device. What do we say when she has to go have a surgery to have it lengthened or adjusted? Or when she can’t play contact sports to protect this device, that she didn’t ask for, from getting broken. What about later in life, Lord willing, she has children and she has to explain to her children why mommy has to go in the hospital for a procedure? This is why we pray for God to do a miracle – for her sake not ours. Who as a mom or dad wouldn't pray for that?

Based on what is going on in her head, it really would be a miracle if all of that resolved itself and she didn’t need a shunt. And that is why we pray. What if God thought he could best display Himself, His glory through this situation by allowing Sara to avoid the shunt? What if? Or what if God says no? And she gets the shunt. How do you live with this tension?

Well, you recognize God is sovereign over everything. You kind of get that inherently when you create everything from nothing. He is not a genie in a bottle and if we rub the lamp, say the right words, believe enough – PRESTO! we get our wish. That is not a sovereign God, but a servant of man. The early church prayed fervently for Peter to be released from prison in Acts 12. And guess what – an angel came in the night and miraculously rescued him. But history tells us he was later arrested and martyred. Couldn’t we assume the church prayed then as well? But God’s answer was different.

And so we pray believing God can do anything. And He may just decide to do a miracle. He may just decide He could be best seen through that. Or, He may decide that He could be best seen through Sara receiving a shunt, living with it, and being a continual witness for Him living each day by his sustaining grace. We pray because the Lord has not given the final word on this matter. And believe me – it is His word that is final. And believe me – Jennifer and I are content in both answers.

I was reminded of Esther this morning. When she was going to see the king to intercede for the life of her people, the Jews. She could be killed just for showing up in the throne room unannounced. Or she could be received and help her people. Her final words to her uncle Mordecai– “if I perish, I perish” She was ok with whatever God chose as the outcome.

If the shunt is to be, then it is to be. We can live that life. But what if God is putting the pieces in place to show up in a mighty, mighty way. We’re ready for that also. Thanks for listening and praying with us.

The Big 5-0

You could see it coming each day and last night we hit it - 5.0 lbs! Actually 5lbs and half an oz. (2283 grams). This is one of the benchmarks they like for her to be at to go home, but by far not the most crucial. In fact we were told early on 35 weeks gestation and 5lbs, but that's not exactly true. She has to be 35 weeks gestation, but she does not have to weigh 5lbs. She can be less and just be eating good and gaining weight. But, the fact she is already there is good and so we praise God. Sara's sisters have been praying for her to get more brown fat for a few weeks.

We were also told early in this process that this ordeal would be full of ups and downs. And while we think we have been on that rollercoaster already, we had some more of that the past few days. Mostly normal preemie issues. They eat well for a few days and then take a few days off. She does really well with little to no oxygen for a few days and then back on it. Her temp is good for a few days and then you walk in to a heated lamp and an isolete (plastic box aquarium) heating up next to your crib. She got cold the other night, they put the lamp on her and she warmed back up and hasn't had to go back in the isolete, but we shouldn't be surprised if we walk in one day and she is in it. In fact last night we got to give her a bath and had to put the heat lamp on her while we did it. First time in my life I felt like a french fry.

Sara is eating up to 42cc's at every meal and the whole weight thing is going great. Continue to pray the other issues will resolve themselves and we can be patient as we wait. They are her oxygen, feedings, and shunt. Pray for Jennifer, she really wants this to be over. She has jokingly (I think) started to refer to NICU as The Baby Prison. Ha! We know it takes time, we'll get there. By the hand of our gracious God and the support of so many of you!

Nice and cozy after my bath

This face could be the result of:
a. my dad just told a funny joke
b. impending bm
c. wondering why they unwrapped me
d. all of the above

You know there has to be a pic of each new outfit I put on

Thursday Night

In this pic Sara was sucking on her thumb. She was about eat and was showing signs of hunger, which is good. She found her hand and then her thumb. We will take that! You don't have to find a thumb in the middle of the night to put back in their mouth.

When she did eat from a bottle at this time, it was 32cc's! Another new personal record. She also did great with Jenny tonight. She weighs 2205 grams, 4lbs 13oz. No tap today and her head did not grow at an unacceptable rate. Keep on praying about that. Have a great Friday

Crazy sleeper, must have gotten this from her sisters

They tell me this is my hand

Hello! I'm awake!