Wednesday, September 30, 2009

New Pics

Here is Sara this morning. She turned 4 months old last Friday. She is eating 3-4 oz every 3-4 hours. Sometimes even more. She is sleeping well, having some good wake times, smiling, cooing, and being very enjoyable. I have to check her weight from last night and I will give you her updated weight.

Hey dad, just look at me. I'll never do anything wrong, never throw a tantrum, never disobey, I'll be perfect. Can't you tell. (Yeah I can tell, your sisters looked the same way at your age)

YYYAAAWWWWNNNN! I am so tired, could you put your phone up and help me get some sleep. (and no, I haven't been preaching to her, she got sleepy on her own)

Uh, you want me to do what? Oh here goes.. this is really uncomfortable.

Ok, I said her name and got two huge smiles and this is all I could catch on camera. Crazy cell phone camera takes too long to snap.

Tuesday, September 29, 2009

Shunt surgery scheduled for next Tuesday

Sara looks great, is acting great, but the CT scan shows a need for a shunt to be placed. The plan is for this to be done next Tuesday morning. She will stay in the hospital until then to be monitored and then receive antibiotics prior to the surgery. For those still praying for a miracle, you still have a chance. He is going to do a CT Scan on Monday just to be sure. So the conditions are set, the Lord knows what needs to happen between now and then. And even though we will pray like crazy for Him to intercede, we are ok with whatever He decides. Thanks for caring and praying. (Pics coming tomm)

Monday, September 28, 2009

CAT Scan - Tuesday

Not Monday, but Tomm. Based on what he sees, he will decide. If it is bad, then shunt soon. If not we may go home and just have weekly checkups with neurosurgeon. He said he is "pretty sure" she is going to need one. But notice what he didn't say - it is definite. He said the longer she waits the better. Keep praying, keep believing and asking God to show up! He just might do it.

Saturday, September 26, 2009

CAT Scan Monday

That's the plan. So far Sara's head size has either stayed the same or had a very small increase. The fontanel is still soft- all good news. Still praying for God to work a miracle so people would know He still has power to do miracles and give people eternal life - and that they would believe in Him! (John 20:30-31)

Wednesday, September 23, 2009

The Plan

Ok, as of Wednesday 9-23 @ 3:46pm the plan is to take a CAT scan of Sara at the end of this week or Monday. Based on what he sees he will go ahead and put in the new shunt or send us home and do it later. Of course I am sure there are 37 other options on the table we don't know about yet. The pediatrician told us - I am praying she won't need the shunt, but I think she will. We are praying she won't. Let's see what Jesus says.

Tough little girl that Sara is. Really came home to me today. She has developed a terrible diaper rash from the antibiotics which loosen the bowels. It is RED RED RED and BIG! Yet as the nurse changed her diaper it didn't even phase her. She didn't even change her expression as she was wiping it. I would be bawling in the corner in the fetal position. That along with the embarrassment from having to explain why I was wearing a diaper and had a diaper rash. But Sara? No big deal. Wow!
Shunt is out, she is back in room and doing great!

Tuesday, September 22, 2009

Shunt coming out tomm

Change of plans because of change in docs schedule. The shunt will come out Wed morning at 9am. From there? We will just watch her and see. Thanks for caring and praying

Monday, September 21, 2009

God said no

After much praying, fasting, hoping, dreaming, wishing, waiting, more praying God has said no to my prayer request. It's ok, I understand He can't say yes to everything. But this was a small request, surely it wouldn't be too much to say yes to this right? But the answer was no and so yesterday Jennifer got Sara's first smile. Or at least - the first smile to a parent. Sara has also been smiling at her fish aquarium music and light thing in her crib and at the nurses and docs. She also has been cooing. (I wasn't the only one to get a no on this issue- Maw Maw too)

So I get to the hospital this morning for my time feeding her and holding her and what do I get? Zzzzzzzzzzzzzzzzzz She was out! Even after eating (up to almost 3 oz's now) and filling up a diaper, we changed her diaper, maybe she will be awake, maybe she will smile and coo at me, but instead - Zzzzzzzzzzz. Oh well, I can wait. When Jennifer gets there in a little bit she will get all the wake time fun time.

All her cultures have been negative. Now we wait to take shunt out on Thursday or Friday and go from there. There has been some speculation that with the shunt out - what if she wouldn't need one? Well, if you are interested in praying for a miracle - maybe God will say yes to that one.

Thanks to Heather for all the dressing up and pictures this past weekend. In fact we had a guest preacher for Homecoming Service yesterday and Heather texted me during the sermon. Glad I wasn't preaching.

I personally am not down with the headband thing, but if someone goes to the trouble of dressing her up so great I can live with it.

Friday, September 18, 2009

Some definite plans (i think)

Just saw doc, the plan right now (and it seems pretty definite) is take shunt out next Thursday, let her body rest with nothing in it for a while (week or so?), then put new shunt in. What about a build up of spinal fluid when there is no shunt? He will check her closely and if it builds too fast - put the shunt in right away. He is very happy with how she looks and is showing more and more maturity. So we are here for at least 2-3 more weeks.

Friday Morning Suprise

Got to the hospital to feed Sara Friday morning and the nurse took the time to doll Sara up a bit. I almost forgot she could actually wear clothes and look like a little girl. Enjoy!

I wish dad would just turn his camera instead of turning my bed on it's side like this, I think I am about to fall

Uumm, bow on head with no hair.... how is that done?? Nurses secret

This blue dress will make my sisters so happy, they love blue and they love dresses - hey Abigail and Emma Grace!

Third test looks good

So far the third culture for bacterial infection is negative. There was a plan for a fourth, but I think that has changed. The doc has mentioned some other ideas, but we won't really know until sometime today what the new plan is. Thanks for praying and we will let you know when we know.

Tuesday, September 15, 2009

Sara is looking good!

She is continuing to improve. She will be tapped today for the third time (I know it seems like the plans change every day - they do), and if all clear then a fourth and then surgery. Her pediatrician is very happy with how she looks and he is doing great. You know there are some blessings we can find in going through this right now. Sara has her days and nights mixed up, up all night, asleep all day. We told them to get that worked out before they send her home, and she probably will. We also were dealing with colic a lot at night, and that seems to have subsided. So you can find those slivers of sunshine on a cloudy day.

Heard an encouraging word this past weekend, maybe it will encourage you also. James 1:2-4 "Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing." I was listening to a pastor whose podcast I subscribe to preach on this passage. And he was encouraging his church to remember God's purpose in our trials.

You see, Jennifer and I have caught ourselves through this recent ordeal just longing and wishing for Sara to get better and get home. And I think in a way putting our hope in the normalcy that would return when she came home. But God's purpose in our trials is not for our lives to return to "normal". Nor for our situation to be solved and made better according to ours or anyone else's definition of "better". His purpose is for us to be made "perfect and complete, lacking in nothing" Or as Paul would put it in Romans 8:28-29 - to be made like Jesus. His purpose is to make us like Jesus. Now that changes everything in a trial.

We aren't looking for the situation to get better or get solved for our joy to be real. We aren't looking to get through the trial to bring us joy. Our joy in the trial is the work God is doing in us in making us more like Him. Something Jennifer and I knew, but maybe we had lost sight of. Knowing a truth and having to live it are two different things. Maybe that will encourage you, pray that we won't forget it and find our joy in Him to be exceedingly abundant.

Friday, September 11, 2009

Infection still clearing

The preliminary results from the 2nd culture are negative, so the infection is clearing or cleared. Just to be safe he will take 2 more samples next week to make sure it is still gone. The doctors and nurses have let us start holding her (very carefully, we can't move her around) and feed her. That is nice, and Jennifer and I are noticing changes in Sara. She is locking into our eyes more than she did at home. I am desperately trying to get her to smile at me before she smiles at Jennifer, that's something you can pray about. Ha! She is eating more now, and her weight is over 8lbs after she lost a little bit. Thanks for praying, keep it up! (especially that special request)

Wednesday, September 9, 2009

Not Much New

Not much new to report on Sara. Just waiting for the antibiotics to run their course. Supposed to tap her today to check infection, but the plan may have changed until tomm. Don't know why. Thanks for praying, keep praying for no new news until surgery - that would be good.

Monday, September 7, 2009

So Far So Good

The 24 hour preliminary report on the cultured bacteria is negative. We will know 100% sure tomm. The plan is to check again Wed, Sat, and Mon. If all clear - new shunt next week.

Good Weekend

Sara had a good weekend. Just doing normal baby things - sleeping, eating, pooping, being awake, talking, walking, ok maybe not the last two. A tap was made of the spinal fluid yesterday to check for infection. We will get preliminary results today and final results tomorrow (48 hours after tap). Hopefully and prayerfully we will see that the infection is clearing. Then later (don't know when yet) he will do 2 more cultures and when we have 3 clean cultures then we can look at replacing the shunt. Until then we wait, pray, and live life.

Friday, September 4, 2009

Back in NICU

No reason to be alarmed, she was moved back into NICU tonight primarily due to staffing issues. She has continued to progress today. She is eating good, resting well, even feeling well enough for the colic to return this evening. Poor nurses. The neurosurgeon said Jennifer would get to hold her tomorrow. Thanks for praying, keep it up. God has been good and faithful once again. Praying for another good day tomm.

Thursday, September 3, 2009

1000 X Better

Just saw the pediatrician, she said Sara is 1000x better. The other day when we brought Sara in she was worried about life or death. She said she is not out of the woods yet, but much better. She will get some blood today. She has continued to eat well and now it is just wait and heal.

The two bacteria she is fighting could have possibly come from the skin and bowels. What is unusual is that they passed into the blood stream and attached themselves to the foreign body in Sara - the shunt. Thus infecting the spinal fluid which brought on the meningitis. This did not happen during the shunt surgery. Sometime after we left PICU and now. Who knows?? You are so careful, yet your taking her into dozens of doctors offices. Even though we wash hands constantly and require family to wash hands, it could have even come from us. Just one of those risks you take from procedures like this. Can't worry about the why, just get her better and continue to be careful.

Wednesday, September 2, 2009

Wednesday Night

Just got back from seeing Sara. She looked her best yet. Sleeping more peacefully than she has in days. Her color has really improved from yesterday, she was very pale yesterday. She is able to take a full feeding now without throwing up - this is good. Her hematocrit level is low, so we may be looking at another blood transfusion soon. I look at her and stare in awe at all she has had to fight through. God has made her strong, I can't wait to see how that translates into toddlerhood, childhood, teenage years (ok I'm scared on that one), and adulthood. Thanks for the encouraging words and emails everyone - they really lift our spirits.

Encouragement for us maybe you too

One of my favorite dead guys I like to read is 19th century preacher Charles Spurgeon. He had an incredible way with words and was used by God mightily. This was this morning's devotional from the devotional book - Morning by Morning. Kind of timely, Enjoy

Mark 1:30
But Simon's wife's mother lay sick of a fever, and anon they tell Him of her.

Very interesting is this little peep into the house of the Apostolic Fisherman. We see at once that household joys and cares are no hindrance to the full exercise of ministry, nay, that since they furnish an opportunity for personally witnessing the Lord's gracious work upon one's own flesh and blood, they may even instruct the teacher better than any other earthly discipline. Papists and other sectaries may decry marriage, but true Christianity and household life agree well together. Peter's house was probably a poor fisherman's hut, but the Lord of Glory entered it, lodged in it, and wrought a miracle in it. Should our little book be read this morning in some very humble cottage, let this fact encourage the inmates to seek the company of King Jesus. God is oftener in little huts than in rich palaces. Jesus is looking round your room now, and is waiting to be gracious to you. Into Simon's house sickness had entered, fever in a deadly form had prostrated his mother-in-law, and as soon as Jesus came they told Him of the sad affliction, and He hastened to the patient's bed. Have you any sickness in the house this morning? You will find Jesus by far the best physician, go to Him at once and tell Him all about the matter. Immediately lay the case before Him. It concerns one of His people, and therefore will not be trivial to Him. Observe, that at once the Saviour restored the sick woman; none can heal as He does. We may not make sure that the Lord will at once remove all disease from those we love, but we may know that believing prayer for the sick is far more likely to be followed by restoration than anything else in the world; and where this avails not, we must meekly bow to His will by whom life and death are determined. The tender heart of Jesus waits to hear our griefs, let us pour them into His patient ear.

Wednesday Morning

Sara had a pretty good night according to the nurses. Not as much crying in pain, more restful sleep. I just saw the neurosurgeon and he said she is definitely better. Her spinal fluid is clearer. She is fighting against two types of bacteria. They have added a third antibiotic and watching for any signs of the side effects of all of that. So far the CAT scans have not shown any new bleeding or other complications in the brain. She was even able to hold down 2-3 oz's of pedialyte in the last few hours. If she continues to do that they will try and feed her some watered down formula. In seeing her, she is a bit fussy, but most of it looks like she is hungry and not the pain she felt yesterday.

They will do a new culture on Monday to check for infection. He wants 3 negative cultures before we look at putting in a new shunt. She is still critical, but he said she won't turn for the worse suddenly, but it could happen. He said this takes a lot of time and she has their utmost attention. So keep on praying!

Tuesday, September 1, 2009

A Long Day

We went to bed last night at an early time, trying to catch up on sleep. Knowing we would have to wake up for an early appt with the Neurosurgeon. You may remember I posted about a spot on her head he was watching and wanted us to return in a week to check. Well that appointment was originally scheduled for Wed, but got moved to Tuesday due to his surgery schedule. Jennifer always takes the first shift with Sara at night. She is still somewhat colicky at night, although it has improved. I was supposed to switch with her at 2:30. But I woke up before two to paint - peeling screams from Sara across the house. I thought - uh oh, that does not sound good.

I got up and went to help. She had eaten, but thrown up. So immediately your trying to figure out why she threw up. Stomach Bug? shunt? Fever? I was able to hold her and she calmed down and slept nicely until 4. I tried to feed her thinking she was hungry - throw up again. I leave at 5:30 to get some pedialyte, come back we try again at 6:30 - more throw up. More throw up again closer to 8. Now we are planning to go see her pediatrician after the neurosurgeon. At some point in all of this process we thought to check her fontanels (soft spot on head) and there was a definite increase in pressure. A sign that something was wrong with the shunt. Hmmm, thank the Lord for the change in appointment and we would see him at 9.

The neurosurgeon checked her out and was not immediately alarmed, but concerned enough to send us to the ER where he would tap the shunt and make sure it is working. So we eventually made it there, he tapped it and immediately saw by the cloudiness of the cerebral spinal fluid there was an infection. So in the next 37 seconds he tells us the plan. Externalize the shunt. This means he cuts open her stomach, fishes the tubing out of her abdomen where the shunt drains and let it drain into a bag. If there is an infection you don't want it to continue circulating in her body. Let antibiotics clear it up while she was in hospital for 7-10 days and then take out her shunt and put a new one in the other side. We couldn't believe our ears. You have to be kidding me. This is not real. I'm watching this happen to someone else right?

We continue to wait in ER as IV's are put back in Sara, CAT scans are done, X-rays, and then he comes and says they are going to externalize the shunt right now. So we took her to surgery and waited for the very simple procedure to be done. From there we were put in a room where we could not feed her, change her diaper, pick her up - but we could sleep near her, hold pacifier in her mouth, and just be there. At that point I left to go get some things to come back and spend the night. Jennifer was left to tend to her and man did she get the worst side of it.

Sara was extremely irritable, fussy, unhappy all afternoon. Couldn't be soothed. Couldn't hold anything down. And now the docs start coming in and talking about the seriousness of the infection. It is bacterial meningitis. This is the worst kind and you can read about it here or just Google it. It is very much life threatening, could cause more brain damage, loss of hearing and/or sight. Vegetative state is also a possibility. Basically her nervous system and brain are under attack.

The doctor thinks (I do not know to what degree of certainty) that a germ from her skin attached itself to the shunt before it was placed and has been circulating through her body for the last 5-6 weeks. Now it is full blown meningitis. The neurosurgeon believes she will make it, we caught it early enough. We hold fast to his optimism. We hold even faster to our gracious God.

So Jennifer is there by herself absorbing all of this. Then they decide it would be best for Sara (and I think us too was part of equation) to move her into an ICU setting with limited visitation by parents. No visitation by anyone else. We can only go at 9, 1, and 5 around the clock and stay 30 minutes. For Jennifer this was heart wrenching. But we both agree know it is a blessing in disguise. It would be emotionally unbearable to tend to Sara in the pain she is in. We need her to just rest and be int he hands of great nurses. Her condition right now is so critical she has a nurse to herself. They don't even do that in NICU. We have it figured out to where one of us will be there for all but one of the times. And so hopefully we'll get a courtesy room and be much better off.

We kind of feel like a boxer who just won the title in a 12 round decision only to be told by the ref he has 12 more rounds with a fresh boxer to keep the title. But while our strength is limited - His is not! While our faith may falter - He does not. While our emotions may stretch to the breaking point - His hand holding us up only gets stronger. That is what it means to be a Jesus follower and to know personally the Shepherd who leads us beside still waters and through the valley of the shadow of death. Pray for us and Sara of course. We know you will. We'll keep you updated as always.
Bacterial Meningitis - more later, keep praying!
Definite shunt infection. Surgery to externalize shunt right now. Simple surgery then to our room.
We are back in hospital. He thinks shunt infection. The plan- clear infection for a week then new shunt on other side. More later, thanks for praying.