Thursday, August 27, 2009

Wednesday, August 26, 2009

New Prayer Request

Sara went to see the heart doc yesterday about the murmur they heard in NICU. All is well with that, she has a murmur to watch, but it is very common and they will keep an eye on it for now. We go back in 3 months. For 98% of kids it works itself out on its own. One cool thing we found out at the heart doc is she weighs over 8lbs now!

The prayer concern came this morning at the neurosurgeons. On the top of her head, under the skin there is an angle connector (like an L-joint in PVC pipe) that connects the shunt going down into her brain to the pump and reservoir going down the side of her head. Well the skin on Sara is thin, and the skin on top of that angle connector is white. His concern is that an ulcer will develop and an infection will ensue. (Think of a blister on your skin you get from a shoe rubbing your heel or toe, or you might get one on your hand from raking, shoveling, or playing to much golf).

So for the next week we have to massage that spot, move the skin around and hope it clears. We go see him in a week to see how it looks. If it turns bluish and gets thin like Saran Wrap we have to call him. Worst case scenario - back to hospital for a procedure to cut and lap another layer of skin over it to thicken it up. Yeah, fun.

If you would, pray it will resolve itself and the massaging, time, and the Hand of God would heal it. Thank you all!

Saturday, August 22, 2009

Today was the Day

August 22 was Sara's due date. And Tuesday she turns 3 months. It's been the fastest longest three months of our lives. Our other girls were born in Jan and Dec. At the beginning of the summer Jennifer was saying, boy I sure don't look forward to being big and pregnant all summer. Well, she wasn't serious.

In fact one of the difficult thoughts we have both had go through our minds is - I wish this wouldn't have happened like this. Especially when it has been hard and scary. You think - if only we could go back and not have this happen like this. Why couldn't this have been a normal pregnancy? And the only answer we have come to is - we don't know. But we trust our Father in Heaven and we know He is always wise, good, and trustworthy. And so we forget was it behind and press on to the goal for the prize of the upward call of God in Christ Jesus. Living by faith standing on those truths is a greater reality than wishing away the past.

We have really settled into a nice routine with Sara at home. Other than a few doctors visits and getting therapy set up, this past week was pretty uneventful. We have two more doctors visits this week and then probably none until the end of September, other than weekly therapy.

The issue of colic is still lingering. It is not as predictable as with Emma Grace, more like Abigail's fussy times. Some nights are better than others. To give you an idea of how it's going, Emma Grace asked Jennifer Thursday night - "How can God always be happy if he never sleeps?" Apparently she knows some unhappy sleep deprived humans, must be on TV.

But Jennifer and I have a good system worked out where she takes her the first half of the night and then I come around 3 and take her the rest of the night. That seems to be working. Except Jennifer claims I never hear my alarm go off to come and take over and she has to come and get me or something like that I don't know. I can't help it. You ever are so tired your alarm becomes part of your dream? So I'm not turning off my alarm, but a switch to open the garage door, put up heat shields on my spaceship, or a special seat zapper for that deacon whose falling asleep on the back row. Whatever the case, it's not my alarm. She just doesn't believe me.

Abigail and Emma Grace are doing well with Sara. They have been very patient and helpful. Well, as much as you can expect from a 7 and 4 yr old. Abigail has been great when I am gone to work and Jennifer needs to get things done. If she is fussy she will hold her, give her a pacifier, and help soothe her. It's been cool to watch.

I officiated a wedding in our church yesterday. All through the rehearsal and ceremony I kept thinking about that day is getting closer and closer for my three girls. When the bride came down in all her beauty and glory I looked at that dad, and well, I just couldn't go there. But I figure by the time they are 40 I'll be ready.

I took some pics of Sara last night. She was content with her pacifier on Jennifer's lap and then we took it out to take some pics. So far so good, what a cutie.

Hold on, somethings missing

Is it over here? Look, I'm limited here, I can't look around worth a flip, all I've got is this rooting reflex thing. Don't play games with me, where is my paci?

Ok, I'll try the crazy look!! I'm desperate!! Where is my happy place?

Fine, I will just cry. Is that what you want?

Monday, August 17, 2009

12 weeks old and 7lbs!

Sara had a good visit to the pediatrician. She has cleared 7 lbs, in fact she is 7lbs 2oz. That means she gained a half a pound in a week. The doctor was very happy with how she looked and acted. So are we.

Sunday, August 16, 2009

New Do

No hair anymore

Why do babies look crazy sometimes?

Sara got a haircut from dad Sunday. The neurosurgeon only shaved half her head before the shunt surgery and I have been meaning to fix that - so today I did. Now she's got the Mr. Clean look. I have this handy little micro ear, nose, whisker, small hair that grows in odd places razor that worked like a charm. It came right off, she didn't move or jerk, and no blood. I also did it when mom wasn't around to lighten pressure of cutting her head open.

Sara had a good visit with the ear specialist Friday. She had her second hearing screening. We learned from her that the antibiotics Sara was treated with at birth can cause damage to the cochlea. I am sure everyone knows this, but the cochlea is the auditory part of the inner ear. Kind of important. If it was damaged it might not show up for 6 months to a year. So we will go back both times. If there is no damage by 1 year she should be good to go. So far - no damage. Something more to pray about, not to worry about, but trust the Lord about. Why sweat it, He's not.

Off to the pediatrician tomm to get last 2 month immunization. Later this week we have her therapist coming in to screen her and then to see the neurosurgeon. After that, the doctors visits will begin to taper off. Thankfully. Hope you had a great day worshipping King Jesus, have a great week!

Happy Birthday Mom!

Friday, August 14, 2009

Sara and the Neurologist

We had a really surprising appointment with the neurologist yesterday. This doctor has not seen Sara since her brain bleeds were first discovered and the initial CAT scan was done. The NICU pediatrician called him in to advise us about the severity of Sara's condition way back in week 2. That week he informed us that the damage in her brain was the equivalent of a 45 gunshot wound and we should consider the possibility of DNR orders and comfort care.

His tone was just a bit different yesterday. He was ecstatic and amazed at how well Sara is doing. He just couldn't believe how good she looked, how well her reflexes were working, and he said she is acting like a normal newborn. There is one reflex that has a long medical name, but if you turn the babies head, which ever way she is looking she will stretch out that arm and bend the other one behind her head. This is a primitive reflex. But this reflex has to go away if she will ever roll over. If it goes away that is an upper brain ability, not just the primitive brain stem reflex. Well, Sara not only has the reflex, but also stops doing it on her own. Signs of good upper brain development. These are the little things we will start watching for to see how the upper brain has been affected by the infarction and bleeds. So far so good.

The next ability he was looking for was fixing and following. Can she fixate on an object and then follow it. She is too young for that right now. We go back in November.

One other interesting tidbit we learned concerning therapy. All the doctors and nurses have continually encouraged us to make sure we get therapy started, work with her every day, therapy her to death during these first crucial years of brain development. In fact, starting next week we will have a therapist in our home once a week working with Sara and showing us therapy we can do with her also. But no one has ever told us why it is so important and we haven't asked. Our assumption was you wanted to do all you could just to make sure she has the best chance of reaching her developmental milestones. The neurologist gave us a good explanation.

He said if damage to the brain from a stroke were to cause the right arm to be some what paralyzed then therapy for the right arm would send signals to the brain like - "what is this thing moving down here, oh I have another arm". And the brain would begin to create new pathways to control and sense that arm. Obviously in a newborn the brain is more elastic and new pathways can be created easier than in a fully developed adult.

We don't know how the damage to Sara's brain will show up in her development. We had been told it could be as severe as eating, sucking, walking, etc. It could be as less severe as learning disabilities, trouble in Math, speech problems. But as we work with her we can begin create new pathways and prayerfully circumvent possible developmental problems. The brain - very cool thing God created. We are indeed fearfully and wonderfully made.

We are off to celebrate Jennifer's b-day today. Well, we aren't off, we can't really go anywhere. In fact the four of us and her parents celebrated a few weeks ago when Sara was still in NICU. But we sure can go pick up some big juicy hamburgers, play some games, watch a movie tonight, and eat some fudge (yes my wonderful wife has a serious chocolate addiction and wants fudge for her birthday cake). Have a great Friday!

Wednesday, August 12, 2009

Hanging Out With Mom and Dad

Hey what you got over there mom? Skittles? oohh I think I may like those

Hah! I got one

No, you can't have it back! It's mine!!

Tuesday, August 11, 2009

11 Weeks Old

Had a busy Monday with Sara. Her eye exam was passed with flying colors. She has no sign of ROP, where the blood vessels in the retina are not developed. She also had a good appointment with the pediatrician. Her bowels are good and have been working great. Really great. She is up to 6lbs 10oz. Only 2 more doctor's visits this week. 3 next week.

Of course with everything that happens that is good with Sara we seem to pick up something new to work through. And the great devil of infancy, the scourge of newborns, the thorn in the flesh of babies has shown it's ugly head. That's right. Good ole COLIC has appeared. Just a few hours after coming home from the hospital Sunday we saw the old demon show up, the same monster we had in Abigail and Emma Grace. Colic - no one knows why and there is no cure but time. But until then it takes teamwork, lots of Tylenol, and naps. And that's just for me and Jennifer. As for Sara, patience. So there you go, that's the new situation you can pray for us about.

Jennifer is making some adjustments in her diet so her milk won't contain milk products. Same thing she had to do with Emma Grace. So hopefully in another week or so that can be ruled out as a possible cause.

I know I haven't posted pics in a while, I promise I will tonight or tomm.

Sunday, August 9, 2009

Home. Again. Aaaaahhhhh

A large offerring was presented

Sara did poop Friday night, but early this morning she did again around 2:45. It was without any help (suppositories etc..). So that is huge. Two in a little over a day keeps the doctor away. She is eating great, she for sure should be coming home this morning with Jennifer while we are at church. Unless the warden has something else in mind. And the fact she did it on her own means we probably won't be going to see a gastro specialist. We are ecstatic.

I had just finished feeding her at 2 and laid her back in her bed when I laid down on the so-called bed/chair/lumbar torture device. I was texting Jennifer who happened to be up pumping at home telling how I just heard her pass gas. But something told me to get up and check her out and viola! Poop from her belly button to her back! What a great sight, I took a picture with my phone and sent it to Jennifer. I was so excited I could hardly go back to sleep. Thanks for praying. It never ceases to amaze me how the creator of the universe cares about even the poop of our children. He is incredible - can't wait to get to church and praise Him.

Saturday, August 8, 2009

Something to Praise and Pray about

We got some poop last night around 11. Sara has needed some help to get it out. None since then. Her bowel sounds are still good, just no merchandise.

What the doc is trying to figure out is - is Sara just irregular and what all do we have to do to help her stay normal. This is something we have already been through with Emma Grace, we get that and know how to deal with it.

The doc is concerned it might be more serious. She could be lacking some nerve cells around the rectum that trigger the release mechanism. She would have to see a pediatric gastrointestinal specialist in Shreveport to look at that and recommend treat which could include surgery. Is this related to her brain bleeds and infarctions? Don't know. It is something fixable, it's just going to take time to observe. That is - time in our favorite place - the hospital. Please pray they would know soon and we could get on the road to resolving this. Please pray for Jennifer and I to have strength, wisdom, patience, and peace. Thanks

Friday, August 7, 2009

Pray for Poop

Apparently that is all Sara needs to do well to come home. Pray in flows in abundance today. She is eating well, the shunt is fine, all is well except needs to move some merchandise. The bowel sounds are fine so pray she presents a sweet smelling aroma and sacrifice for the gods in white coats. Pray also for Jennifer and I that our patience level would increase and our frustration level would decrease. Thanks

Thursday, August 6, 2009

Continued Improvement

Sara has gotten better through the night and day. Her bowels sound good, much softer. She is eating again and now we can feed her whatever she will take. I was thinking a milkshake, but we better wait. All of the various x-rays, blood tests, CT scans have come back negative for anything serious. Also negative for infection or inflammation. She does have a low grade fever, not sure what that is about. That may require her to stay a little longer just to make sure all is ok. Jennifer's doing good as well as the girls. They sure have been awesome through all of this craziness. Thank the Lord for He is Good

Wednesday, August 5, 2009

Sara is eating again

They have let her eat 3 times so far this afternoon and late morning - 30cc's each time. She has wanted more. They may bump her up tonight. She is doing well, bowels are working. They want to keep her tonight and maybe tomm night just to make sure this is all clear and it is not shunt related. Her CT scan looked good and the ventricle size has improved. Thanks for praying - keep it up!

Sara's bowels are improved

Sara was very fussy and irritable yesterday - very unlike herself. And she quit eating - again, very unusual. So when we tried once again to feed her around 6:30 she puked and that is when we called the neurosurgeon. We thought for sure it was shunt related because we had just seen the pediatrician who noticed nothing unusual, she had no fever, no other signs of sickness. The neurosurgeon told us to meet him at the ER. We did, they did x-rays and thankfully it was not the shunt.

Sara has distended bowels. Basically they quit working, filled with pockets of air. Thank the Lord He gave us the wisdom to call and go, it could have gotten worse. It is not extremely serious, in fact the pediatrician said for a normal full term 2 month old they would have sent us home. But welcome to the wonderful world of preemies. With her history they admitted her in PICU (not the same unit we have been in) and began to draw that air out and decompress her bowels. They did another x-ray at 4 this morning and it looked better already. The doc checked her at 6:45 and he could hear bowel sounds. She had another CAT scan at 8:30 and if that looked good she would get to eat a little bit from a bottle to see how she would do.

Apparently, this is a semi-normal thing in the NICU. One of our nurses said she was surprised Sara hadn't had to deal with it already. Hopefully everything will get to working and we can bring her home once again this evening or tomorrow. Thanks you guys for lifting her up - God is good, has been good, and will always be good - no matter what!

Tuesday, August 4, 2009

Hey guys, had to take Sara to ER tonight- wouldn't eat. She has distended bowels, and we have a few days in PICU. Please pray.

First Pediatric Visit

Sara did great today. She is up to 6lbs 5oz -thanks for praying about weight issues -she is good.

Monday, August 3, 2009

We Haven't Forgot about You all

Did ya miss me? I just ate and am now milk drunk

Ok, ok, ok. Sara's fans have spoken and I can no longer take a weekend off from letting you know how she is doing. Or at least for the time being.

She has done great since being home. This is by light years the most laid back of our three kids. Now, even though she is over 2 months, developmentally she is still a newborn. That was an interesting thing we learned from a nurse that for preemies it takes about two years to catch up. So when she is 12 months old she should be doing what a 10 month old is doing. These are not hard and fast rules, just general guidelines to watch for. And with a the head trauma she has suffered there may be more delays. Or by the grace of God, His kind hand and therapy- small to no delays.

The first night - not too much fun. Oh, Sara did great. It' s just her nutty parents who woke up every 18.7 seconds to make sure she is alive. You would think with our third child we wouldn't do that. But, we also hadn't had a preemie. Finally I told myself, ok God if she just lays there and dies then she is going to die. I can't watch every breath all night! It has definitely improved since then. We are getting used to her little squeaks and sounds all night. We know she is stable. Or maybe it's just gotten better because her bassinet is on Jennifer's side of the bed now. Whatever the case, I'm sleeping better.

The bassinet - why we didn't have one of these with our other two I'll never know. I think at the time we were ascribing to the idea that sleeping children should be isolated in total darkness inside a soundproof nursery that your spent umpteen hours painting and oodles of dollars decorating. Hindsight always gets me.

You can see the clear outline of the shunt system. One top is the incision which is now stitches free.

You know how lions sleep like 18-20 hours a day. I think we have a lion-human hybrid. Sara just sleeps. She has two good wake times a day and then sleeps. We have her in her bassinet in the middle of the hub-bub of two older sisters who do not hold back volume wise. And she sleeps. It's really amazing. If our first child would have been like that we would have had a dozen by now.

Emma Grace is also happy little sis is home. This is improvement. When we told the girls we were pregnant Abigail did the Mexican Hat Dance screaming around the living room. EG just laid on the couch in my lap and said nothing. Jennifer said - Emma Grace are you happy we are going to have a baby? She wagged her finger back and forth saying -No, no, no, no, no. Classic middle child

Her first doc appt was today with the neurosurgeon. He was very very pleased. He took out the stitches in her head. The spot where the reservoir was is still raised, but he said it is going down. We won't see him for 2 weeks. Next up - pediatrician. Pray for her weight to be good so Jennifer can keep nursing. Thanks to a best friend from high school (thanks Goldie) we have a borrowed scale and have been weighing her. So far so good.

The biggest adjustment she had to make was her temp. Needless to say we keep our house a bit cooler than NICU. So her first temp check was...shall we say - too low. So we have been keeping her bundled in a onesie, snap up thingy, socks, hat and blankets and she is getting better. We can take her hat off during the day. In fact the neurosurgeon was starting to take her clothes off today to check her stomach incision and saw all the layers and said - Good gosh woman, it's summertime! (you would have to know him).

Sara is now nursing at each feeding and we are following with a bottle if she tires out before she gets enough to eat. It is amazing being home with her. Not going to the hospital. It feels like we have 36 hours in a day right now. I know that isn't going to last long, but we are going to enjoy it right now.

We got a surprise today from some members of a church I used to pastor. They overwhelmed us with their love. Thanks you all- you will always be dear to us. And to the rest of you - thanks for the prayers, thanks for caring, thanks for loving Sara. I don't often comment on all of your comments - but they continually encourage us with smiles and tears. You all are the best!

Give me a hug ya big lug!