Sunday, January 31, 2010

Change in plans, cultures came back positive for infected shunt. Doc will externalize shunt wait until all clears and put in a new one. 4-6 weeks in hospital.

Saturday, January 30, 2010

The surgery will be tomm morning at 10am.
Sara's shunt tubing is clogged again, and instead of continually working on this one and exposing it to infection, she will get a whole new system on other side
Please pray for sara, she had been doing well, supposed to go home Wed. she has come down with a fever this afternoon and wont eat. waiting on doctor.

Friday, January 29, 2010

Sara is really doing well. Eating and sleeping good, we got the poo poo train rollin again, and now she is laying in the bed talking, laughing, and squealing!

Thursday, January 28, 2010

After ct scan, we will see about going home. It is not definite that she has to be on antibiotics for 7-10 days. thx for praying!!
Sara is doing much better, docs are pleased. Hasnt slept much today, but we just got the ok to let her sleep on tummy and she is out! CT Scan on Monday.

Wednesday, January 27, 2010

The Baby that Suprises

We took Sara into the doctor Tuesday afternoon concerned that her reflux was not improving enough. I mentioned last week that we had several good nights and days in a row, and we did. We really thought we were turning the corner. Sara was sleeping well, not irritable at all, and smiling like there was no tomorrow. But over the course of the weekend, she progressively got worse. She constantly had to be held, throwing up once or twice a day. Wouldn't settle down and sleep until 3 in the morning, very irritable, almost worse than it was when we first got the diagnosis of reflux. So we took her in Tuesday afternoon.

Her head had grown over an inch in 3 weeks. That was the biggest concern for our doctor that sent us to the hospital. The reflux should have been improved, something must be wrong with the shunt. So, Jennifer takes Sara over to be admitted and have a CT scan done and x-rays. I make my way to the hospital and on the way to Sara's room I run into our Neurosurgeon who is surprised Sara was there. He came immediately to look at her and assured us she was ok, nothing serious. After viewing the results of the CT scan, he decided to go ahead and tap her shunt that night to check for infection and see if it was working.

He was pleased that their appeared to be no infection. And as of now, no infection is showing in the cultures. But he also noticed the bottom half of the shunt system (distillation (I think) - where the Cerebral Spinal Fluid is dispelled into the abdomen) was not functioning strongly. The top half where the CSF is absorbed from the brain was working great. His plan was to first make sure there was no infection - that was worse case which would involve the removal of the shunt system and a new one put in. That was our little 42 day trip to the hospital back in Sept-Oct. If there was no infection he wanted to check the drainage portion of the shunt system to make sure it wasn't clogged.

I stayed with Sara the first night and we have a pretty good night. She eats the last time at 6am. Then around 8:30 the nurse comes in, asks when she ate last, and then tells me not to feed her again. I ask - is something planned? Well she doesn't know, just don't feed her. I quickly find out that surgery had a 2pm scheduled surgery for shunt revision. We see our doctor at 2 who said we had been pushed back because of an emergency. He suspected the end of the shunt tubing had become clogged from protein deposits that occur naturally in your abdomen. He planned to removed them with a small incision and irrigation and motion. If that did not work, he would pull out all the tubing and put in new tubing from her neck to the abdomen. Thankfully, the first, least invasive procedure worked. The plan now is to watch her for a time (days?? weeks??) to make sure all is working.

Sara's second problem is gastrointestinal. Apparently all the Miralax we had been told to give her may have been making matters worse. We don't know what the real issue is, but the doctors think it may be neurologically related. So we will be off to see a gastro specialist in Shreveport soon. The neurosurgeon did see a spot on the CT scan that concerned him. He said it may be damage from the stroke she suffered at birth, that is now beginning to show up. This could be the cause of the gastro problems. We actually remember the neonatal pediatrician telling us that gastro problems could be neurological. That's all we know, thankfully we pray to an awesome God who already knows. We'll keep you posted so you can know how to pray.

Me and Jennifer I suppose are getting more battle hardened. This has not been as despairing as our last trip to the hospital. Certainly also because it is not as serious as an infected shunt. It's funny how quickly you go back into crazy hospital life mode, I guess it's like riding a bike. It sure is different now when they work on Sara and she just looks up at you with those bright blue eyes and long eyelashes wet with tears seemingly saying - Who are these people and what are they doing to me?

How can you pray for us? Patience, wisdom, peace, strength, opportunities to bear witness to the reality of Jesus Christ as our rock and refuge, our ever present help in a time of need. Pray we would be able to faithfully live out the truths about God that we know are true. Always pray for Abigail and Emma Grace, God has given them so much grace to understand at such young ages.

We are even more full of hope than ever before about Sara's life and future. As the neurosurgeon spelled out some negative prognosis' he said - "but remember, this is the baby that surprises us." From the time she was tiny and they didn't think she would make it through the day until now, she is the baby that surprises us. Thanks for caring, loving, and praying!
Surgery was successful with the least invasive procedure, thx for praying, now we can praise God once again for showering us with love, grace, and mercy!
Sara is finally headed to surgery. I'll fill in the details tonight.
Shunt revision surgery scheduled for 2pm. Havent seen doc, that is all I know. Please pray

Tuesday, January 26, 2010

Shunt Problems

Sara is being admitted to the hospital. Something is wrong with her shunt. She will have CT scan and Shunt series xray done and then we will go from there. Thanks for praying!

Wednesday, January 20, 2010

New pics

By the way, thanks for the prayers, we have had 2 good nights of sleep the last two nights!!

Monday, January 18, 2010

Rocking Chair and Infomercials


I asked Jennifer to write the first paragraph. but that's all she's got. Rocking Sara into the night watching infomercials has a negative effect on wakefulness.

There are so many things we thank God for concerning Sara. When awake, she is very happy, can't hardly quit smiling. She is improving all the physical skills she needs to be improving. She is responding to her therapy and her two fantastic therapists who come once a day each week. Which is nice because we know at least two mornings each week the house will be straight. Her reflux is improving, her bowels are working well, and she is growing. Sara got her latest round of immunizations. Her sisters went with her and did not enjoy that viewing experience. She goes next week for an eye exam. Pics will be posted tonight. Most of all, God has protected her from sickness, and we haven't been in a hospital for 3 months!!. Many, many thanks for all of that.

But my oh my, when is she going to start giving us some consistent sleep. I know, I know, the travails of a new born. It's the nature of the beast. But if I don't tell you about it, then you can't pray with us. And in light of the other serious issues Sara has faced and by God's grace overcome, this seems minor.

Of course we try and figure out what is causing the wakefulness. It's not always fussiness, sometimes she is just wide awake and smiling from 2-3. Is it reflux? Constipation? Colic? Growth Spurt? Teething? Shunt related? Loneliness? Cold Temps? Phase of the moon? Divine sense of humor? Testing of our marriage through sleep deprivation? Demonic possession? It's got to be something.

In perspective, we have much the thank God for in how He is helping Sara. It's just sometimes we are too tired to see that perspective. But hey, at least if anyone needs any recommendations on magic grills, bullet choppers, workout systems, or vacuum cleaner hair cutting systems - ask Jennifer, she would be glad to recommend. If only I could wake her up....

Tuesday, January 5, 2010

Happy New Year!!

What a great and difficult Christmas season we had. Lot’s of good times and memories made with family and friends, too much good food eaten, too many pounds put on, but it was one of my favorite Christmas'. On the difficult side, over the last 2-3 weeks we have learned Sara is allergic to rice cereal and has reflux. Twice Jennifer has gotten ready with both of us convinced we were headed back to the hospital with Sara. Jennifer remembers one of the NICU nurses telling us – with Sara it is always going to be something. Boy was that an understated prophecy.

I posted the video below of Sara eating rice cereal. You know rice cereal, the substance so bland, so safe, so easy that any child can learn to eat with it with no problems. A substance so safe we fed it to her 4 straight days. I commented on the video that it was clogging her up – ok understatement of the year. Only for the next 3 weeks would it cause poop problems. By the end of the first week of cereal (this would be the weekend before Christmas), she was incredibly fussy, straining to pass a stool, and was not eating as much. It sounds like it all happened at once, but it was a gradual process that only happened at certain times of the day. By that Friday night (Dec 18) we were convinced she was getting distended and off to the hospital we go.

We woke up that Saturday morning and called our pediatrician who is kind enough to let us have his cell number. He said give her a suppository and call him back in an hour. If it doesn’t help, bring her to the ER for an x-ray. So I’m rocking her and pleading with God to be merciful to Sara, our other girls and our family one week before Christmas while Jennifer gets ready. Jennifer comes in the room to get her clothes and car seat ready, I stand up with her out of the rocking chair and all of a sudden she poops everywhere. I’ve never been so happy to smell it or clean it as I was then.

The doc said just watch her, increase the amount of Miralax we were giving her (all natural stool softener that is awesome, and apparently they can’t get too much), and see what she does. So through the rest of the day she was better. That evening she is hurting again, in pain, straining, fussy, not eating. Here we go. Jennifer is at the church with Abigail and Emma Grace rehearsing for the children’s Christmas play and having a Christmas party while I’m walking around the house with Sara praying about should we take her to ER or not. We both decided that when Jennifer comes home, she’ll take her and I’ll get the girls in bed. While I’m walking around a thought pops in my head – give her a warm bath. I’m sure I’ve heard this advice before, but I’ll chalk the timing up to God. So, I give her a bath, she relaxes and voila! We have more of the golden goop floating in the tub.

This is basically how we lived for the next week and a half through Christmas. Increase Miralax, if it gets bad give her a bath, talk to one of the nurses, and maybe give her a suppository (which we only had to do once more). Slowly she continued to improve and right around New Year’s Eve – New Year’s Day we feel like that was resolved. Talking to the doc and nurse, we all feel it was an allergy to the rice cereal. So, the game plan is to skip cereals and begins fruits and veggies later on moving very, very, very, did I mention very? Very slowly.

Enter situation #2. Just as the poop issue was resolving, she threw up on Tuesday night (29th). Jennifer had just fed her, laid her down to change her and a fountain of vomit came forth from Sara. Now we’re thinking distention or is it the shunt (both things happened the last time she vomited). She’s fussy, but she sleeps good. We head home the next day from the outlaws, err I mean in-laws, and she throws up on way home. Jennifer calls doc, they give advice to watch her. We do and over the next few days she throws up every now and then.

We think the throw up is kind of phlemy or snotty. All of us have been around and had a little bit of that over the last month or so. Not colds, just snotty (in this part of the country they call it The Crud – don’t ask why, I don’t know). But it hasn’t affected Sara. God has helped us to be very diligent with Purrell, changing clothes and limiting who deals with Sara to basically me and Jennifer. We don’t really even let our girls touch her much right now. But by New Years day we think she is getting congested and snotty in her throat. Coughing a bit, though dry. We set up the cool mist humidifier in her room., get out the Vicks and start praying. She is sleeping some in her bed, but at night she is having to be held by one of us and rocked part of the night. But then every few days she has a good night. I think that is God’s mercy extended to us.

By this past Sunday night it seems to us like she is trying to cough but can’t. Maybe her lungs aren’t strong enough. We both pray but are convinced we are hospital bound. Jennifer actually takes Sara to the doctor yesterday. My parents are on hold in case they need to come and stay with our girls for me to go to hospital. I sit and wait for Jennifer to call. Tick-tock, tick-tock, tick-tock. Almost an hour passes before she calls on the way home- it’s reflux. Never thought I would be excited about reflux. No hospital, just Prevacid. That’s ok, we’ve been through that with Abigail and a little bit with Emma Grace. We know reflux, we can deal with reflux. And of course, that explains a lot of her behavior, especially over the last week.

So we are still home, Sara had a much better night last night, settled down around 12:30. With the Prevacid we should see some major improvement very soon. The doc was a little concerned about some things he is seeing with her shunt, but he said nothing to worry about now, just watch it and notice if what he sees changes. It could just be her body getting used to it and it will always be a little puffy in a few spots. Pray along those lines. She isn’t showing any symptoms of shunt problems.

We thank God that he gave us wisdom and patience over the last few weeks. We thank Him that we made it through Christmas with our families and no sickness. We thank Him that you all continue to love and pray for Sara.

Over the last few days when Sara has felt better she has been a smiling machine. You see that in a few pics Uncle Buck took of her on New Year’s Day at my parent’s house. Well, I come in Sunday night from church and Jennifer has her genuinely laughing. When she feels better and does it again we’ll video it, but my sweet considerate and caring wife was gracious enough to remind me that she got her first smile and her first laugh. Yeah, whatever, who cares.

One funny story and then I got to go. Two days before Christmas we still have to get stockings and small gifts the girls give each other and Jennifer and I. Because we are all buying for each other, we have to have some way of keeping it a secret. Normally, we all go to one store and use coats to cover up things in buggy, etc. But we can’t take Sara to a store. So we could take turns taking 3-4 trips from home to a store. With Christmas traffic – not gonna happen. So we decide to all go and Jennifer and I would take turns going into store with girls, by ourselves, and Sara stays in car. Brilliant! Great plan. Save time, save gas, the efficiency nerd in me is loving it.

So Jennifer is in the store by herself, Sara is getting a little fussy. I’m thinking she’s about to eat, so I look down into the diaper bag for her bottle and formula to get it ready. I’m looking, looking, looking, not finding and then it hits me. We forgot it. I fixed the bottles and had them on kitchen counter. I assumed Jennifer would grab them. She assumed because I fixed them I would grab them. And in all the hustle and bustle we left them. I’ll let you all sort out the blame.

So I text Jenny – did you happen to pack her formula? She later tells me she almost dropped her phone in the aisle in Target when she read that. So, off to the baby aisle, can of premixed formula, one bottle, and one can opener coming up. If there weren’t two other children sitting in our van I would have sworn we’ve never been parents before. How do you leave home and forget food for your baby? I don’t know, but we did it. Breastfeeding was so much easier – food is always packed and prepared and dad gets more sleep at night. Oh well. We got it, Sara ate and our little happy crazy adventure continues.

Is this the life or what?

Playing in snow flurries yesterday. In La you have to celebrate every little bit of snow

Our dog Bella. When we wants to come in she will just sit and stare through the door like this. So your sitting there and look over and see this dog staring at you. Sometimes she will do this through the kitchen window while you are at the sink. Kind of cute and kind of creepy, ha!