Hope Realized

I just noticed the other day what I had written at the top of the blog describing our site. How Sara's sisters hope one day their sister could come home. Written on a day we didn't know if that would ever happen. But that day has come. Neat coincidence - in our mailbox today - her certificate of live birth. 65 days, 5 hours, 24 minutes, and 37 seconds (not that we were counting) from when we walked out of our house to go to the hospital with Jennifer in labor the 5 of us are back together again under one roof. My friends, there just aren't words.....

As I write this (while drinking a caramel shake), Sara is laying in her bassinet to my right as Jennifer bathes Abigail and Emma Grace. No trip to the hospital tonight, just bedtime at 9pm tonight and every night for the next 3 months.

Jennifer and I felt the pressure of leaving today. We had been told that if Sara bradyed (sudden drop in heart rate) while feeding we could be in the unit three more days. So while I gave her a bottle at 9am and Jennifer at 12pm we were sweating bullets. Here Sara, drink this down, no not too fast, oh no, wait, is she choking, what's her heartrate, is it dropping....AAUUGGHH. Pressure. She made it through. The docs gave the ok, half of her stitches were removed, she nursed and away we went.

This is post-op. Still has IV in hand. But she has no oxygen and no feeding tube - that was a first. She never looked back. Has taken every bottle with no problem since the operation. The nurses continually were amazed at her. That's what happens when God shows up!

This one is for the women, the little shoes on her feet. Every nurse made a big deal of them. Whatever - it's an outfit.

Abigail and Emma Grace hanging out in the courtesy room with Uncle Buck while mom and dad talk to doctors and nurses about leaving.

Going home outfit - HELP! Whose pants are these??? They are swallowing me!!!

Snapped up and ready to go

This is the second time Abigail and Emma Grace have seen their sister. The first time was 7 weeks ago when we had to tell them their sister might not be alive much longer.

Hard to put into words how Jennifer and I feel about Dr. Desolar. He was with us the first three weeks when it was dark. He has been with us the last 3 and we've been doing alot of smiling and laughing with him. He's not only an excellent doc, but has the warmth of a father. Jennifer really appreciated that when it was tough. He loves children and works very hard to help them live.

Neat pic Buck, thanks for being there today and getting these great pics

Emma Grace said - Uh, dad, you put her in backwards

Quick, shut the door, lock it, let's go before they change their mind

Sayonara!!

Big Sis has been dreaming of this moment

The New Normal
So what will life be like now? I wish I knew. I know it will involve 3,745 doctors visits in the next 3 months. Ok, maybe the next 6 months. Pediatricians, neurosurgeons, neurologists, heart doctors, eye screening, hearing screening, and weekly therapy visits to the home. Not to mention us learning therapy routines and doing it ourselves daily.

We have to live with precautions we are not used to. Basically if Sara gets the flu or RSV it will be life threatening. Why? Several reasons. She was born with the strep infection and was hammered with antibiotics. Therefore her immune system is weak. She had lung developmental issues. She's a preemie. Any sickness would probably send her to the hospital and back on the vent. Therefore we have been advised to stay home with her as much as possible until the spring. When our girls come home and have been around other children they have to come in, change clothes and wash hands. Same for Jennifer and I. No trips to church, Walmart, mall or other places with big crowds. Limited visitors at home. Pray we will be wise. Pray she doesn't get sick.

Sara will receive the special RSV shot, so that should help. Are all the precautions necessary? No one knows, she might still get sick. But it's a chance we are not taking. After 65 days in the hospital we don't want to go back.

Several people have asked me about the blog. Of course I'll keep it going. Updates will probably be more weekly than daily. But so many of you have grown so attached to Sara, we wouldn't dream of ending this. This has been a journey God has decided for us to go on. Many of you have chosen to go on it with us. You have made the load lighter. We have felt like we have marched through the valley of the shadow of death with an army of brothers and sisters in Christ, friends, and family. In the spiritual realm you have had our flanks and our backs. Thank you, let's not stop now.

Here is part of our family over the last 65 days. These are docs, nurses, and other support staff who have been incredible! Thank the Lord for them, we get to leave, they stay and continue to help the helpless. I wish we could have gotten all their pics, and I hope I spelled their names right. We'll never forget them.

Aunt Aimee

Aunt Ally

Kim

Mary Grace

Jessica

Hope and Rita

Clay and Anne

Rita and Evelyn

Courtney

Fenishia

Neurosurgeon - one proud doc. He said today - I think the Good Lord has been helping your baby. Could there be a bigger understatement?

Kate

Mona

Jennifer

There's more to this story we haven't told. I'm working on putting something together that tells it. All of you are a big part of it - thanks. Your prayers, encouragement, and support have meant the world to us. Jennifer and I look forward to the day we can be that for a family in our situation. I pray God's richest blessing to flow freely in your lives for years to come! With His Love and all our love - go have a milkshake!

Home!! 4:24pm

Pics and details to come later tonight

It's Official!!!

Going home tomorrow sometime after we meet with Neurosurgeon at 1. Somebody pinch me.

It's looking like Wednesday is THE Day

If Sara's CAT scan looks good tomorrow, then it looks like we could go home Wednesday. Nothing is ever definite in NICU except the fact that nothing is ever definite. But right now that is how it is trending.

36 Weeks (9 weeks old)

And probably our last week in NICU. That's right, unless we have an unforeseen setback - this is the week we are going home. Don't know when, still some things to be done, but later this week. She is up to 6lbs 3oz, eating over 50cc's of breast milk every three hours from a bottle, no more feeding tube, and she is eating it in less than 10 minutes. Us, the nurses and doctors are marveling at her. Most think the shunt has relieved whatever pressure she was having on her brain. It would be like going from having a constant headache to no headache. In other words, she feels good!

As of right now she is fatter than both of her sisters when they came home after being born 3 weeks early. Although neither of them spent a second in NICU. I have new pics, but the camera is at the hospital. We are trying to get pics of as many of the nurses as we can who have taken care of her before we leave and while they are working.

Got Sara's room ready this weekend, a little paint, put the baby bed back together, and moved other furniture around. Got the car seat out of the attic and cleaned up. It's getting close. Our church family even threw us a Welcome Home party last night and overwhelmed us with love, gifts, and support. They are awesome and we thank God for them.

6 lbs!!

She was weighed tonight at a touch over 6 lbs! That is after almost no food for the last 2 days. She woke up at midnight, scarfed down 40 cc's of milk in 3 minutes and went back to sleep. She now weighs more than her sisters did when they came home from the hospital.

2 Months Old

That's right 2 months have gone by that fast - but we are getting close. Sara is up to 40cc's a feeding and receiving a bottle every three hours. The neurosurgeon is very very pleased with her progress and he said all she needs to do is #2 and eat well and she is going home. So pray for that.

Her bandages were removed and when she has a bowel movement she will move back to an open crib. Jennifer got to hold her this afternoon - that was sweet. It's getting close friends, we can smell the end of this. Either Jennifer or I are at the hospital now all the time. She takes the days and I stay at night. I am about to head in at 9 to give her a bottle, then 12, then 3, then 6, then home, then church, preach, then back to the hospital. Thank the Lord for a courtesy room. Have a great Sunday!

The Girl keeps getting better

We seem to have one laid back kid. She hasn't had pain medication most of today, no food for the last 36+ hours and she is just kicked back all day on the radiant warmer hardly fussing at all. Both doctors, pediatrician and neurosurgeon, said she is doing fantastic. She finally got to eat 10cc's of breast milk today around 4:30. They want to give her 20 later tonight followed by another 20 3 hours later. They want to go slowly to make sure the bowels are working before they up it to 30 cc's. The doc thinks in a couple days she will be back where she was before the surgery but they want to go slow. If the bowels get clogged she will go off all foods for a few days and it would be a set back.

She looked great this afternoon. After the surgery she was totally sedated, not moving, on the vent and swollen. It really looked liked she first looked. Not good. But, today she is moving, her color is good, less swollen, sucking a pacifier, and ate her milk in about 45 seconds and then was content with the paci. They even let Jennifer feed her the bottle while I held her up. She is already off all oxygen support and soon, maybe late tomm she will be back in her crib. The doctor even said all that is left is to go home and that will depend on how she eats. So that is how you can pray. We will head back later to feed her the bottles and may have to spend the night depending on how much she gets to eat.

Laid back after eating my whopping 10 cc's of breast milk (2tsp)

You can see the shunt tubing running down the right side of my head just behind my ear and going up. The crazy doctor shaved my head, but when my hair grows back you won't even see that.

This may not look great but it is 100% better than after the surgery, those pics will stay in the family.

Hanging out in my favorite spot the night before the surgery

Like my strawberry outfit?

These are the three latest taps on Sara. From left to right in order, the one on the right being the latest. I hope you can tell how much clearer it is getting. If you remember, when this started it was like dark cherry kool-aid.

Off the Vent

Sara can off the vent at 2 this morning and her sats and numbers have been great since then. She hasn't eaten yet, but that should be soon. They want to do some xrays and make sure everything looks good. She hasn't been continually fussy, just every now and then. She also hasn't had to have any pain medication since yesterday evening. Looking good!

Shunt Surgery a Success

Thanks for praying everyone. Sara's surgery went great, the neurosurgeon was very pleased. Should be on vent most of today, maybe off sooner. Should get to eat tomm morning. Pray all wakes up and works well so she can eat. Her vitals and everything did great through the surgery, and very little bleeding. Pray the fluid going into the abdomen is received and absorbed into the body well. We are spending the rest of today and tonight hanging out with Sara's sisters and getting some much needed sleep!

Sara is through surgery and doing great! will be on vent most of today and probably be eating by tomm. thx for praying

Change of Surgery Time

Pray a little earlier folks, surgery has been moved up to 9am. The surgery that was supposed to precede Sara's was done today. Thanks

Preparing for Surgery

Sara is up to 5lbs 12.9 oz (2633 grams), that's more than double her birth weight. She continues to eat well and now we just have to get through the shunt surgery tomm, get her back to eating, and progress to where she eats everything from a bottle or breast and we are headed home.

As I texted from the hospital, we have total peace about her getting the shunt and total confidence in her neurosurgeon. Better yet, we have total faith in our great God! Jennifer is a little nervous, as a mom would be, about the whole surgery thing. It's just heavy and scary to watch your child go through this. But, she also knows she needs it and know it is going to help her. I, being a dad, wish they could do it right now, let's get it done and get home.

Her surgery will be around 11:30. The actual surgery only takes about 20 minutes. There will be an incision in the head, neck, and abdomen. She will receive the system on the left, where the shunt will drain the excess cerebral spinal fluid (CSF) into the abdomen. The CSF is full of protein, electrolytes and other nutrients that are too important to discard. It will not drain into her stomach, but into her abdominal cavity where the body hopefully and prayerfully will absorb it.


Sara has a condition called hydrocephalus. It is almost always a life-long condition. She has excess CSF. She produces each day 1 oz of CSF, just like we all do. This normally circulates through the membranes that surround the brain and spinal cord. It acts as a cushion, provides nutrients and even carries waste products from surrounding tissues.

Because of Sara's intraventricular hemmorrhage (brain bleed) during her first week of life, the blood clogged the drainage system in the ventricles where the CSF is produced. Her problem is not that she produces too much fluid, but that it did not and does not drain well out of the ventricles. Therefore, excess fluid accumulates in the brain and causes pressure and swelling. This pressure can squeeze the brain like a sponge, damaging it. The shunt will allow the excess fluid to drain into the abdomen and give the brain plenty of room to develop. The shunt is called by one website and our neurosurgeon the greatest medical device ever invented. 75,000 people receive one each year.

Right now Sara's ventricles are swollen with CSF. In the pic below you see an example (this is not Sara's CT scan but an example I found on the web - the ventricles are the dark black kidney shaped areas).


The ventricles are where the fluid is produced and you see their normal size on the right. Sara's right now is probably 4 times larger than the ventricles on the left. Her head which is supposed to grow about 1 cm a month has grown 8. Even still, her head size and swelling has been controlled by tapping the CSF and withdrawing it. This used to be done by sticking a needle into the brain and drawing it off with a syringe and hopefully a very skilled dr. Now, they are able to put a reservoir under the skin (that is the bump on her head), and draw the fluid from that reservoir. It is like an accumulation point. They could actually continue to do this and control the fluid in her brain, but every time you stick her head you open up a possible infection spot. And eventually you would exhaust that spot and have the keep moving it. A reservoir is not a permanent solution, a shunt is.

Sara will probably receive her first revision around 3-4 years of age. As she grows up the shunt tubing will have to be lengthened. Because the shunt is a mechanical device, one day it will not work and have to be replaced. When I say mechanical, it is basically a plastic chamber that is calibrated to open and close at a certain pressure. When the excess CSF reaches that pressure, the shunt opens on one end and then the other letting the fluid flow into the abdomen. Interestingly, the opening and closing is controlled by rubies. A ruby is the second hardest crystal behind a diamond and conducts zero electrostatic energy. It is very stable and able to do it's job.

There is between a 2-3% chance that the proteins (blood) in the CSF will clog the shunt and it will have to be replaced. There is a 1.5-2.5% chance of the body fighting against the shunt and an infection setting in. Another interesting point - after about 2-3 months the body will encapsulate the shunt system and actually see it as part of the body and fight to protect it. The neurosurgeon touted his stats concerning those percentages as being the best in the state and among the best in the nation. And he is very optimistic about Sara's chances of success. Once she gets past 6 months with no problems the chances of failure or infection drop drastically.

Pray all goes well tomm. Pray she is able to recover quickly and get to eating quickly so we can get to leavin quickly. The hardest thing as parents will be seeing her sedated, back on the radiant warmer (that's the table she was originally on), back on the ventilator. It's like going back in time to a very dark period early in her life. BUT - we know God has us in a different place and this surgery is temporary. We also know He has allowed everything we have been through, both good and bad, and we trust His sovereign plan and wisdom no matter what happens. We can't say it enough - thanks for walking with us through this and praying for us. We'll let you know tomm how it turns out.

From talking with him- Sara really needs it and statistically he is one of best at this in nation He stopped counting at 3000 in 1989. More details to come tom

Texting from hospital- surgery for shunt around 11:30 Thursday. Neurosurgeon is very optimistic about her success. We are totally at peace.

This girl likes to eat!

Hey, you got any more of this stuff out back?

Sara is flying through these bottles. She has now taken 4-5 in a row, the entire thing. It is so cool. They told us a switch would flip and she would have it - and boy were they right! I was planning on letting you all know that she has moved to getting a bottle on every other feeding. But she is doing so well, I wake up this morning and she is now getting a bottle every 2 out of 3 feedings. I think we are moving into the hospital today.

We have our meeting with neurosurgeon today to discuss the shunt surgery. I will let you all know specifics so you can know how to pray. Thanks always for praying for Sara and our family. And while you do that, don't forget to praise Him for all He is doing!

35 weeks (8 weeks old)

Here we are at the magical 35th week. Now the discussions can begin about going home. If it weren't for the shunt surgery this Thursday they may have come pretty soon. But, the surgery will be so good for her, it won't be much longer. As I mentioned a few days ago, after the surgery once Sara gets back to where she is now and eats all her food from a bottle around the clock - Vominos Casa - Let's Go Home! (that's my pathetic spanish learned from Dora the Explorer)

Sara is up to 5lbs 11.6 oz. In fact she is 2 grams from doubling her birthweight of 1300 grams. When I weighed her last night I felt like spitting on the scale just to get the two grams. (Or I could have put my pen on the scale and been a little less like I was still in jr. high) Sara is now 18 3/4 inches long.

The eating is even getting better, yesterday at noon and this morning at 6 she at the entire bottle of breast milk. It was only about 46 cc's (30cc = 1 oz), but for her it was huge. She definitely has it down and is getting the endurance. Both nurses we talked to last night thought it was a miracle that Sara could even eat from a bottle. It is amazing what God can do, and we are thankful He is doing it!

Big week for Sara, we meet with neurosurgeon tomm to discuss the surgery, surgery Thursday, prayerfully we get things rolling again on Friday and it is just a matter of getting it all down before we head home.



Spa Nite in NICU

Yes, the little girl got the total package - bubble bath, massage, warm towel pat, lotion rub-down, left stark naked to pee on the scales - it was the full treatment.

Waking up on a Saturday morning

moannn, hmm, is it already time to get up?

ssttrreeettcchhh

yyaawwnnn, oh man i'm so tired, another night in this place?

Oh! Its you! I didn't see you there

And you too? you people in your scrubs are always hovering over me

I just want to know, can't a girl get some privacy?! here i am in my undies and you come along and uncover me letting all that cold air in.

You know, just because I can't do anything doesn't mean i have to be treated like this, you hear me over there?

Now, I'm gonna say this one more time, treat a girl with some respect and get me some covers! Got it!?

Now, was that so hard? Aahhh that is so nice and warm. This is what Saturday mornings are supposed to be about.

Breakfast time. Milk through my nose while I suck on a piece of rubber, can't beat it!

Sara has continued to improve. In fact the last three bottle feedings have gone really really well. She almost took the whole bottle last night at midnight. They have been telling us that all of a sudden a switch will flip and BOOM, she's got it. It appears that may have happened. She is even waking up and looking hungry for most of her feedings. This is all great improvement. She also continues to breast feed really well. Jennifer is very optimistic that when she gets home she can go all breastfeeding with no problems.

She has been off of all O2 assistance since Wednesday morning and is doing great. In fact, as you can tell in the pics, they moved her feeding tube to her nose so she could get a better suck. The pediatric doctor told us yesterday that after the shunt surgery once she gets feeding well she's going home. That's is almost too exciting even to think about. But it's coming.
(Thanks Aimee for the pics)