Wednesday, January 28, 2009

Another positive appointment!

Looks like we made it another week without the need for a shunt! Today Carson had another head ultrasound to monitor hydrocephalus. The doctors determined that there is still no change from birth. This is great news! It's wonderful to leave an appointment relieved, especially because we feel so much anxiety prior to these visits. We never know what we're going to learn!
Carson is doing very well these days. He is now 3 weeks old. At his last pediatrician appointment he already weighed 7 lbs 5 oz!

Recently we learned that there is an orphanage in India of 48 children who are praying for Carson. It's amazing how fast and how far his story is spreading. Carson is a testament of God's faithfulness and goodness and we are feel so blessed to be a part of it.

Keep up the prayers!

Friday, January 23, 2009

Carson's appointments

I'm pleased to inform everyone that Carson's many appointments have been going well. On Monday we were back at the hospital for a head ultrasound to determine if there has been any swelling in the ventricles of Carson's brain. The radiologists and neurologists found that there has been no change so far when comparing it to Carson's original head ultrasounds taken when he was born. This is great news! We are thrilled that there hasn't been any increasments in the fluid build up. However, this is only the beginning of a long road. Carson will have to repeat these appointments on a weekly basis. After a month or two, if there is still no change, the appointments will occur once a month. After a year of ultrasounds Carson is home free for no shunt surgery if his ultrasounds continue to look good.
We are more and more encouraged with every positive appointment and we feel that we have so much to be thankful for! Even though Carson has turned our lives upside down, he is a blessing and we wouldn't have it any other way.
Coming soon: appointments with orthopedics, urologists, physical therapists and more head ultrasounds. We'll keep ya posted. Thanks for the many prayers!

Sunday, January 18, 2009

Carson's little world

Carson seems to be adjusting to his new home well, I'm not sure that we're adjusting quite so easily:) I'm lucky if I make it out of my bath robe by mid afternoon! Carson sure keeps us busy but he sure is a joy. In fact I'm told that I'm lucky to have his feeding schedule; he wakes up every 4 hours for food.
Eating, sleeping, and pooping, is pretty much how Carson spends his days. He's pretty peaceful until it's time for a diaper change. He squirms, cries, and frantically kicks his legs. It sure is awesome to see his legs moving so much, he is a miracle.
Tomorrow my flurry of appointments begins. Carson has an ultrasound on his head to monitor the hydrocephalus, and then a visit with the neurosurgeon. We're really hoping that the ultrasound will reveal no change in his head size. We're assuming that Carson will have weekly ultrasounds to monitor this and hopefully soon they will determine that a shunt will not be needed, we'll see...
It seems that our blog is getting a lot of traffic so hopefully that means lots of prayers for Carson! Please remember our neighbors and friends, Andy and Leigh, in your prayers as well. Leigh is having a boy with spina bifida on Jan 29!

Tuesday, January 13, 2009

Carson is coming home!

Great news- Carson is coming home tomorrow! We can hardly believe it. He's finally ready to leave the NICU just in time for the coldest day of the year:)

It's a little scary thinking that Nate and I are completely responsible for Carson. We wish we could not only bring Carson home, but also a nurse! It's scary, but also of course exciting! No longer will we have to say goodbye to my baby; now we get to say goodnight.

Now an update on his recent tests: Carson had an ultrasound on his head in order to find out more about the fluid build up in his head. The radiologists determined that there has been little change since his birth. For now he can come home without a shunt. However, there is still a very possible chance that hydrocephalus could occur which would put in him back in the hospital for another surgery. Carson will continue to have appointments to monitor his head. Hopefully the fluid levels will not go up.
The doctors were also concerned about his kidneys and ability to empty his bladder completely. Recent tests did not tell us much. Carson will be on antibiotics and his bladder will be watched closely.

Today we met with a physical therapist who accessed Carson's leg muscles. He said that Carson had excellent muscles and seemed to use them well. His feet lack flexibility so he showed us some stretches to help. He also said that he believes that Carson will someday walk, perhaps with ankle braces, but he will walk! I couldn't help it, I just started crying. What news!

The events of today were an answer to prayer. God has shown us such mercy. Carson is a blessing; it's amazing how much we love him. Even more amazing is that God loves him even more.
Please continue your prayers for Carson.

Sunday, January 11, 2009

Another Carson Update

It has been a busy past few days! Carson has been getting lots of visitors and lots of love. A typical day for us at the NICU now includes diaper changing, trying to feed him while he’s on his tummy, holding him on our chests reclined, watching his many adorable facial expressions, and learning as much as we can.

Carson always finds a way to bring a smile to our faces. He seems very comfortable and content as he sleeps the day away. Our creative and awkward feeding solutions put a bewildered expression on his chubby little face.

The nurses have a checklist of things we have to learn before they will release him. The list includes simple tasks like taking his temperature, feeding him, & bathing him. There are also some more complicated items on the list, things like Infant CPR/ First aid training, and changing Carson’s Diaper.

One might think changing a diaper is a mundane task, but let me assure you, it’s not. Because he still can’t be on his back, we have to put on diapers backwards, while he is lying on his stomach. The wipes are cold so whenever one touches his cute little butt, he tries to crawl away. It takes one person to hold his ankles and one person to change his diaper. The nurses say that if we change his diapers every time for the next three days, we just may pass.

A few things to pray for:

We found out Saturday morning that Carson’s fluid levels in his head went up by ¾ of a centimeter. Today it stayed the same. They are planning on doing an ultrasound tomorrow morning to determine what is going on in his brain. If they don’t find anything major, Carson may be coming home in the next day or two. The tests may result in some disappointing news. It’s likely that Carson may need a shunt. It breaks our hearts to think that we may have to send him back into surgery after he has already spent so much time recovering.

They will also be running some tests on his kidneys. Carson has been able to pee on his own, yet some urine may be backing up into his kidneys. This test will confirm or deny that. If they do determine it is, we still don’t know what it means or what they will do about it.

Please pray that these tests will bring good results and that Carson can come home at last!

Thanks for your continued prayers,

Nate & Em

Friday, January 9, 2009

An answer to prayer...

Last night we asked people to pray specifically for Carson’s head to decrease in size. This morning it had gone down ¼ of a centimeter. Praise the Lord. Emily also got to breast feed today. It was a little awkward because he still has to be flat on his stomach, but he managed okay. It was really fun!

We also had some not-so-good news. The doctors said not to get too excited yet about the lack of swelling in his brain. Often times it can take up to a month before the baby requires a shunt… More waiting.

We were really excited about Carson’s ability to pee on his own, but it appears some urine may be refluxing back into his kidneys. They are doing a VUR test to check for that tomorrow. It may be a symptom of the surgery, or it could be from the Spin bifida. Please pray specifically for this tonight.

We also realized today that his feet are clubbing some. Not in the traditional sense where the toes curl down, but his feet won’t bend down past 90 degrees. Sometime in the future they will do physical therapy to try and help it.

Emily and I are going home today. It’s sad because we won’t get to spend as much time with him. Last year a friend of mine had a baby and I asked them, “So now that you have a baby, what do you do with it?” I guess now I know. You stare at him because you can’t get enough. Carson is the best little boy we could ask and we couldn’t imagine life without him. Thanks for your continued prayers.

Love you guys,

Nate & Em

Thursday, January 8, 2009

Good News to Report!

Today was full of blessings! Carson is growing and doing very well. Today they removed the cath and he is urinating on his own and filling his diapers. This doesn't necessarily mean he will have adequate control over these things, but it's a step in the right direction. The doctors have also been monitoring his head for fluid build up. We're happy to report that his head size has stayed the same so far. We are continuing to pray that the fluids will not increase so that he will not need a shunt. Carson has also been impressing us, his visitors, and the staff with his strong leg movements. In fact one of the nurses said she was keeping a close eye on him because she was afraid he would scoot himself all the way to the edge of his bed area!

Carson also got to eat for the first time. We fed him while he layed on his tummy by bottle. We also got to "hold" him for the first time. This evening he was placed on a pillow and then on to our laps. We fed him and burped him this way. It was amazing.

Unlike yesterday Carson seemed comfortable and content. When baby is happy we are happy!

Although we have all of this great news to report, please continue to pray for his health. Although he is doing very well, we still don't have a clear assessment on his physical abilities, he may still lack bowel and bladder control, and a shunt surgery could be in our future.

Thanks for reading, I hope to write tomorrow with more good news! Thanks also to our many visitors and all the emails of encouragement. God has blessed us with such a caring community and a thriving baby. We are so thankful because all of these good things are a gift from God.

Wednesday, January 7, 2009

Another Quick Update

Today Carson had an exciting day filled with visitors. We just can't get enough of his chubby little face. Today he was visited again by his family members and he also met Brenda and Brandon, Jenn and Scott.

There hasn't been a lot of significant change to note, but a few changes- some good, some not so good. On the positive side, Carson was taken off the ventilator. This device was inserted into his throat yesterday to help with his breathing. He is now breathing on his own and seems much more comfortable without the tubing. He also is constantly moving around on his tummy and likes to stick his little tush in the air. This of course requires leg movement which we have seen quite a bit of so we're are very happy to report that. He also has had a few bowel movements and is urinating well, but still no word on whether he will have adequate control over these things. Unfortunately, the ventricles in his brain have increased. He is still shunt free, but if the fluid build up continues to increase we are probably looking at another surgery to install the shunt.

Today he seemed agitated and uncomfortable. He has to constantly stay on his stomach and his hooked up to multiple devices through multiple cords. It's hard to see him squirming around in discomfort without being able to relieve him. Today he was especially stubborn about keeping his head turned to the right. In fact, after his head was turned he managed to turn it back on his own! I think he is already revealing his stubbornness:) On our last visit to say "goodnight" he finally seemed content and was resting soundly. Finally seeing him comfortable was like the ultimate achievement.

We can't wait to visit him tomorrow and hopefully learn more.

Tuesday, January 6, 2009

Post Surgery

Carson made it through the surgery well. He will be heavily sedated for the next day or so to make sure he doesn't move around too much. After the surgery, the doctor's still can't tell us anything about bowel/bladder control, the necessity for a shunt, or the sensation in his legs.

All they know is what they found in surgery: His spinal cord was sticking out through the cyst. Two nerve endings that were supposed to go to his legs were attached to the skin on his back. The doctor needed to cut them so the spinal cord could lay into the spinal column. They can't tell the extent of the damage.

Because the cyst was smaller than they originally thought, the plastic surgeon had an easier time closing up the wound than expected. A two inch cut is all that is left of the cyst. It should heal up in the next few days.

From here we wait. Doctors don't think they will know anything about anything for at least a few days. Most likely we will not know about the leg sensation for one or two weeks.

The Lord answered a lot of prayers for us today. We slept well last night, were at peace through most of the day, Emily's surgery went great, and our baby is the cutest ever (we especially prayed for that). We move forward with faith that God is in control. We know that your prayers are helping carry us through. Thank you for your prayers and support. We will post again soon!

Nate & Em

Carson Nathaniel Bush

Carson Nathaniel Bush was born at 7:56am today! At 6lb 100z he is 18 1/2 inches long. He has thick black hair. We can't decide on who he looks like, but most people say he looks like both of us combined. Everyone at the hospital thinks he is the cutest baby alive; of course we agree.

Em is recovering really well. She will be here till Friday or Saturday.

Currently Carson is in surgery. We are quite sure he won't be getting a shunt today, but that can change. The size of the defect is smaller than anticipated, which is great news. He can move his legs, but is clearly lacking some sensation there. They don't know if the surgery will improve his sensitivity and motion or hurt it. It depends on how many nerves they need to cut to get the spinal cord in place. Because Carson will be drugged up for the next several days, we actually won't know how successful the surgery is for a week or two.

We will keep you updated. Thank you all for the many prayers! We really need them right now.

We are in room 4406 if anyone wants to visit.

-Nate & Em