No Bad News is Good News

Lately, when we take Shelby Frances to her various doctor appointments, we aren't really looking for good news, we're just hoping not to get bad news. Fortunately, that has been the case this week and last week.

Today we went to Asheville Eye Associates to see the ophthalmologist. The doctor did a series of tests, and did not notice anything too concerning. Her eyes reacted normally to light. He did notice that she was a little far-sighted, but said that it could go away with time. Dr. Wiggins said that with hydrocephalus patients, the optic nerve is often swollen or discolored. Shelby did not have either of those problems. One of her optic nerves was a little under-sized, but he didn't think it would affect her vision.

He did tell us that he's pretty certain that the nystagmus (the jerking movement of her eyes) is caused by the hydrocephalus, and not something else. As we mentioned earlier, we are seeing it happen less these days, so hopefully it will go away eventually.

We have a follow-up ophthalmologist appointment in October to get more information. Here are some more pictures for those of you who have been requesting them.

The big brother and little sister before bed last night
when Trip was reading to them:

Another cute picture of Harding from yesterday:

Celebrations!

It has been a week of celebrations. First of all, on Wednesday Trip and I took Shelby back to the pediatrician for a check-up and weight check. She has officially regained her birth-weight (7 lb, 13 oz exactly). Then on Thursday, we found out that Trip passed his PE exam and is now officially a licensed professional engineer! We are really glad that he is finally finished with the late nights of studying.


Shelby is three weeks old now. Since the stitches and bandages are off of her head, I've been experimenting with different bows and headbands to cover up her shunt (till she grows some hair). Here are some pictures.

In her pink bouncy chair (thanks Ashley and Joel):
Shelby with great-grandmother Burney:
I don't think she likes purple:

1st Follow-up Trip to Duke

Since both Harding and Shelby are sleeping at the same time right now, I thought I'd better jump on this opportunity to update the blog while I have it. Yesterday, Shelby had a couple appointments at Duke.

First, we went to see Dr. Grant to have her sutures removed. He said that everything looks good and the shunt appears to be working perfectly. Shelby's head size continues to go down. I had a couple questions about the signs of shunt malfunction. They are things like fussiness, fever, loss of appetite, and vomiting. These are all issues that typical babies have from time to time. In fact, Shelby had thrown up (or spit-up a whole lot) twice the day before. I had a feeling it was because she had eaten too much, but was still slightly paranoid that her shunt wasn't working. I don't want to worry about that every time she throws up or has a fever. Dr. Grant showed me how to feel the soft spot on her head. If it is still soft, and not bulging, then she is probably fine. He also said to listen for a high pitched cry, which could be a sign of head pain. I feel much better now that we have something else to look out for besides the normal signs of sickness.

After seeing Dr. Grant, we headed to Dr. Patel's office (a pediatric orthopedist). Shelby had some hip clicks that we needed to get checked out and they had done an ultrasound on her hips when she was a patient in the hospital the previous week. Anyway, I was relieved to find out that Shelby does not have hip dysplasia and won't need to wear a hip brace. Yes! One less thing to worry about!

We go back to Duke for Shelby's first CT scan on July 28th. Dr. Grant will review those results with us that afternoon. We're hoping the scan will show that some of Shelby's brain tissue has rebounded.

Meanwhile, we're getting settled into life at home with two kids. I'm hoping to establish some sort of routine in the next couple weeks. Harding has (so far) been very sweet to Shelby and patient about the fact that she requires a lot of our time. Shelby continues to act like a very normal baby. She loves to be held and snuggled. We are so happy to have her in our lives!

Helpful Links

I wanted to share some links with everyone. After reading through some of these websites, I am more optimistic about Shelby's future. There are some amazing stories on the sites, and it seems like a lot of kids who have had it even worse than Shelby have gone on to lead very normal lives.

This first website is a blog from someone else who went to Duke. The before and after MRI's are amazing.
http://enduringthetest.blogspot.com/

This website has good info about hydrocephalus, and more stories as well:
http://www.fetalhydrocephalus.com/hydro/Default.aspx

Reading stories from families who have already gone through this is very encouraging--especially at times when I'm not feeling so positive myself.

June 17 - Visit to Pediatrician

Tiffany took Shelby to her first Pediatrician visit yesterday. She is in the 25th percentile for weight, and the 90th percentile for height! She's going to be a tall one. Anyway, most things checked out well, but he did notice her eyes twitching a bit. We had noticed this some, but had forgotten to ask with all the other stuff going on. Dr. Love called this nystagmus. Our opthamologist doctor friend, Jeremy said that there may be some structural damage to the nerves which was caused by the hydrocephalus. So, we have an appointment June 30th with Dr. Wiggins, a pediatric opthamologist at Asheville Eye Associates. I will say it seems like she is doing this less, so hopefully it will go away altogether.

We are also going back to Duke on Monday to get the sutures removed, and have a few follow up tests done. At some point in the near future we will have CT scans and MRI's done to see how the brain is reacting to the reduced pressure. We are praying that some of the tissue will rebound. We will post something after each of these visits.

Home

My aunt Dearing wrote this to me in an email and I could not agree more...to quote her, "What a glorious homecoming!!!!". Trip has been reading some books to Shelby, but that seems to be putting her to sleep. I think we're all going to take a nap right now since Trip is taking the afternoon off. At last, home sweet home!!!

We finally got out!!

Oh what a LONG day! Barbara and I got to the hospital at 7:30 this morning. The neonatologists told us we'd be able to leave as soon as Shelby had her hip ultrasound. This happened at 11:45 and then Barbara and Shelby and I waited and waited and waited all day long to be discharged. Finally, at 6:45 pm, they let us go home. Shelby is finally out of the hospital!!! We're spending tonight in the apartment to tie up some loose ends, and driving back to Asheville first thing tomorrow morning. I have not slept in my own bed since June 4th, and I am ready to collapse into it as soon as I get home.

My friend, Brooke is at a teaching conference in Raleigh this week and she stopped by the hospital this evening to entertain me while we waited. She snapped some pictures of us as we prepared to get on the elevator. Please ignore how disheveled I look and take note of how happy I am to be leaving and taking my baby home!!

Here is Brooke.... In a couple months, Shelby will be hanging out with that baby in her belly.

The last thing I want to do is brag on Shelby a little bit. When we got back to the apartment this evening, Barbara was holding Shelby and she started holding her head up for a couple seconds at a time.

Thanks Stephanie!

Barbara and I were talking yesterday about how some of these NICU babies don't get held very much. Not so for my Shelby. It is really hard leaving your newborn baby at a hospital overnight! But it is really sweet of my friend from Oxford College, Stephanie Brogdon, to stop by during her breaks and cuddle Shelby Frances. When I called in the middle of the night to check on her, the nurse said that Stephanie was giving her a bottle!! It sure does pay to know people! :)

I have nothing new to report so I thought I'd add some pictures that John took of Harding and Trip at the pool this morning. Trip and Harding are on their way home right now and John and Barbara are staying to bring Shelby and me back as soon as they let her out. Barbara and I are headed to the hospital now to hang out with Shelby Frances till about 10 tonight, then we'll start the whole process over again tomorrow morning.

Updated Timetable

Barbara and I were at the hospital this morning for neonatology rounds. Shelby continues to improve and they will be taking her i.v. off later this afternoon. Dr. Grant, the neurosurgeon who performed the surgery, came by and said we could go home whenever Shelby gets clearance from the neonatologists. The orthopedists have scheduled an ultrasound for sometime tomorrow to check on a hip "click" and make sure there is no displatia there. I'll be meeting with various people tomorrow to get the ball rolling for us to leave...I have to learn about caring for the shunt and things that we need to be on the lookout for, in terms of malfunctions. It sounds like we'll be coming home either Monday or Tuesday. We'll have to drive back to Duke in a week to 10 days for follow-up and the removal of Shelby's sutures. Trip is going home this evening after he spends the afternoon with Shelby so that he can work tomorrow and will have some vacation days left for us to go somewhere and relax towards the end of the summer. I am really looking forward to our little family of four all being together in Asheville and under one roof for the first time!

She's doing great!

Well around 9:30 this morning Trip called me and said the doctors had given the okay on eating and that Shelby was definitely ready to nurse. I got to the hospital at 10 a.m. and Trip had helped the very sweet nurse, Heather, give her a bath. She was decked out in a cute onesie and they had even put a little pink bow on her head in front of the surgical bandage. Shelby was awake and alert, looking around and being exceptionally adorable, then she had a really good feeding. I feel really good about everything today. She doesn't seem to be in much pain anymore and I think we're really going to see Shelby's personality come out, now that there isn't any pressure on her brain. She does have a big ridge on her head from where the fluid has dissipated, but the doctors say that within a couple months, the bones will have fused together and her head will not be misshapen any more. I am relaxed for today for the first time in a week! I feel like we have made it past a major milestone and taken care of Shelby's short-term needs now that the surgery is over and she is feeling better. We'll worry about and deal with any long-term effects of this later....I pray that they are minor.

New plan for the weekend

We were with Shelby till 10:45 last night. She had calmed down a little and we were able to hold her. The doctor was starting to ease her off the morphine at this point and her vital signs were looking better. I called ever time I woke up to pump last night and she apparently was able to sleep pretty well, but had thrown up (morphine effects).

Our plan for today and tomorrow is to switch off spending time with Shelby and Harding. The nurses did not think that she would be able to eat until this afternoon, so Trip is with her now. I've been relaxing, playing trains with Harding, drinking coffee, and watching the Today show which is wonderful. It is really nice not to be at the hospital for a little while. Trip and I will switch off sometime in the middle of the day. My parents are leaving today and John and Barbara are coming up to stay with us. We are really lucky to have such helpful and supportive families. I don't see how people go through something like this without that.

Recovering

Shelby's head is already getting smaller, which the doctor said is good. I am so thankful the surgery went well, but my heart is just aching right now. She's in a tremendous amount of pain and I can't stand to watch it (which is why I'm in the waiting room on the computer). The doctors and nurses are trying to help her by alternating morphine and tylenol. They've got the lights turned down low and everyone is whispering and touching her the least amount possible to keep her from getting too agitated. I really haven't heard her cry since the first couple of minutes after she was born (only 1 week ago) and it was nothing compared to this. Trip and I feel pretty helpless. I know that she will be feeling much better tomorrow....

Surgery over - in recovery!

*Posted by Aunt Chris*
Tiff just called and said that the surgery is over, everything went well and Shelby is in recovery now. Thank you everyone for your prayers this afternoon! Tiff and Trip will provide more information when they can.

She's in the operating room now.

They took us down to the pre-op room around 1:00. Trip and I met with Dr. Grant and the anesthesiologists briefly, then they took Shelby back for surgery. Don't think I'll be able to update for awhile because we want to spend our time with her when she gets out. BUT we will let everyone know later this afternoon how things went. In the mean time, I'll be uploading some pictures to distract myself from thinking about what is going on.

June 12 - Nervously waiting for surgery.

Blissfully Unaware

Well, Shelby Frances went on IV fluids last night and hasn't been able to eat since midnight. The poor girl is hungry!! We got to the hospital as early as possible this morning and have been trying to hold her and spend as much time as possible with her while we wait for her to go into the OR. We're told it should happen around 3, but that there is a chance they could push it up or back, depending on availability. We'll post some pictures in a little while, but there is red marker on her head showing where the shunt will go in. This is a vanity thing, but I think she might have to wear bangs to cover the shunt up. We'll see how her hair grows in. Also, we are getting different stories from different people about when we'll be able to come home after the surgery. Now our timetable is anywhere from Sunday to next Friday. I am ready now! Can't wait for our lives to go back to normal.

Meanwhile...Harding chills at the apartment complex pool with his grandparents!

BB thinks he'll be swimming on his own by the end of this week!

June 11 - The Diagnoses From the Attending

Ok, I'm going to try and explain what the attending neurosurgeon told us this evening. Any doctors, nurses (or spouses thereof) please excuse my ignorance.

She definitely has hydrocephalus. So hydrocephalus basically means one of the ventricles is enlarged with fluid and under pressure. This pressure pushes brain tissue up against the skull, and can sometimes even enlarge the head. In Shelby's case, this enlarged ventricle is also coupled with an area of the brain that is thinner than normal anyway. So, even when they relieve the pressure, that portion of the brain will still be a little undersized. The extent of that is unknown right now.

The affected area is the right, back, and upper portion of the brain. These areas control the motor skills and vision of her left side. The good news is that so far, her left side motor skills dont seem different than her right side. It sounds like the cognitive portions of the brain which are toward the front are much less affected. Of course the neurosurgeon can't really predict anything with much accuracy right now.

We will be coming back to Duke many times in the next few years. One thing we really like is that they have a developmental program here which, along with our pediatrition in Asheville, will be following Shelby's development progress and looking for anything unusual.

The bottom line is that surgery is fairly basic, and we won't know much about long term effects. The doctors have seen the whole spectrum from no impairment to pretty serious long term disabilities. The doctors seem pretty confident that she will not fall into the latter category.

We will update tomorrow after the surgery which is sometime in the afternoon. Keep us in your thoughts and prayers!

Feeling encouraged

So, yes...Shelby will be having surgery sometime tomorrow afternoon. Trip and my dad are on their way right now so that Trip can be there when we meet with the attending who will be performing the surgery (Dr. Grant). Anyway, the resident neurosurgeon I met with this morning was very thorough and made me feel hopeful about Shelby and her potential for leading a normal life. She talked about the plasticity of the infant brain and how the connections that were damaged could be taken over by other parts of the brain. Of course, only time will tell how this damage will affect Shelby over the long term. But, bottom line she is having surgery tomorrow afternoon for the "placement of a right frontal ventriculoperitoneal shunt". The best part about all of this is that if everything goes well, sometime between Sunday and Tuesday we will be bringing our baby girl home!!!
Trip will kill me for saying this, but watching Grey's Anatomy since Season 1 is really paying off here at Duke. :) I feel like I know the lingo....residents, attendings, etc. It was cool being there for rounds this morning. I got to listen to the Pediatric ICU Group and the Neurosurgery Group. I withheld the urge to ask the residents about what happens in the "on-call room" here at Duke. Just kidding...now back upstairs to the Pediatric ICU for another feeding...

June 11 - I am Heading Down to Duke

Well, I am about to head down to Duke with Pete because the surgery was scheduled for tomorrow. It sounds like we should be able to finally bring Shelby home as early as Monday. After talking to another neurosurgeon resident, Tiffany and I are feeling a whole lot better about everything in the short and long term. I understand it is very difficult to predict the long term effects of the brain damage, but the last neurosurgeon seemed confident that they should be minor. The shunt is something that we and Shelby will have to be cognizant of for the rest of her life, but really it isn't that big of a deal. We have to get it checked every couple of months for the first year, and then probably once a year from then on. Right now we are just praying for her to make it through this surgery safely, and move on from there.

Things are moving fast here!

Wow....I cannot believe that Shelby and I have been at Duke for 4 hours and we have already met with people and have some answers. Like Trip said, Shelby will be having surgery Friday or Monday to put a brain shunt in her head to relieve the pressure. I am meeting with one of the two attending pediatric neurosurgeons tomorrow, Dr. Grant. Either he or Dr. Fuchs will be doing the surgery and apparently they are awesome. I hope so. Anyway, mom is here with me and we are going to have a tape recorder with us and a typed list of questions when he comes by. In the mean time, we'll be visiting with Shelby. They are pretty strict at Duke. I have to literally "scrub in" and wear a drape and gloves to hold her. But that is okay, because I feel like she is in good hands. I'll post more pictures later tonight. I was an emotional wreck when they left me in the waiting room while they did Shelby's "assessment", but after meeting with everyone, I feel much better. Its nice that we are moving forward. Now, back to the hospital for another feeding. Luckily, we're literally 5 minutes away.

June 10 - Finally Some Better News

Well, I better retract my previous statement about the doctors at Duke. Apparently the resident neonatal doctor and the resident neurosurgeon were very helpful, and gave Tiff a lot of information. The news is getting a little better. It sounds like they will be performing surgery this Friday or Monday to place a shunt in Shelby's brain. This is a pretty minor surgery as far as brain surgery goes, and recovery time is only a few days. It also means, I believe, that there was indeed some pressure in the brain from the fluid. Once that pressure is removed I think it may be possible that some of the displaced brain tissue will be able to function normally. Apparently it kind of depends on the amount of pressure that was there. The resident did say it was an "impressive amount of fluid" whatever that means. At this point we are unsure about the percentage of the brain that will be damaged, or what that means for her long term. We may have a better idea after surgery, but likely we wont know what the extent of the damage is until we watch her start to develop. We will have to go back to Duke a few times every year for quite some time, but that is no big deal.

At least there is an end in site now, and we will know even more tomorrow after Tiff talks to the attending neurosurgeon.

Anyway, here are some more Shelby pics:

June 10 - They have arrived safely

Tiffany and Shelby have arrived safely at Duke. Apparently the doctors and nurses down there are MUCH less helpful and communicative than they were at Mission. As long as they do a great job, that's OK. Stephen and Cambridge are keeping Tiffany company while they assess Shelby. I'll post more as I learn it.

June 10 - Shelby is on Her Way

Finally, Shelby was loaded into an ambulance at 12:00 and is en route to Duke Children's Hospital. Tiffany is riding shotgun in the ambulance, and tells me they will arrive at 3:30. I will be heading down tomorrow. As happy as we are to have her on her way, it has just brought up all those nervous feelings again. I will post again to let everyone know they arrived safely. I doubt we will hear much from the doctors there until they have had several days of exams and observation.

Again, thanks to everyone for the comments on this blog, and the emails. We do read them, and they are very helpful.

Shelby Pictures

Our friend Julie came over this evening with her camera to take some pictures of Shelby. The nurses let us unhook her from the monitors so we could move her around better. Anyway, here are a couple of the pictures. They came out well and I have to say, I love dressing this baby girl up! Thanks so much Julie!



It looks like we will be transporting to Duke tomorrow at 11:30. Shelby will go by ambulance with two nurses. Trip and I will be following in the car. Harding is going to come over tomorrow morning and spend some time at the hospital before we go. I'm glad, because I really miss him.

June 09 - Still Waiting...

Well, we finally got some sleep. Being in the transition room at N.I.C.U. is wonderful. We are left alone to take care of Shelby by ourselves and I feel almost "normal". We set an alarm for 4 hours after the last feeding, and that was the only time we woke up all night. A night of rest was definitely much needed! We are all feeling a little better and more optimistic today. She continues to show signs of being a very normal baby, and had several hours of good alert time this afternoon.

Unfortunately, we were delayed again in the transfer to Duke Children's Hospital, which we now hope will happen tomorrow morning. But, as one nurse reminded us, the longer she is out of the womb, the stronger she gets should surgery be necessary. Also, we know that our situation in terms of caring for Shelby ourselves will be a lot more restricted at Duke. We will not have the privacy of having our own room with her and may not be able to see her whenever we want to.

My cousin Katy has reserved us a very affordable furnished 2-bedroom apartment in Durham that is within two miles of the children's hospital. We are very relieved to have set up somewhere to stay. Also, we know that our parents will be able to bring Harding to visit us there from time to time which is really nice. I am sure that this is a difficult and confusing time for a two-year-old, but he seems to be handling it well. He is very at-home at my parents' and Trip's parents' houses and they have spoiled him the past couple days.

I want to tell everyone that we really appreciate all your love, prayers, and support. Even though we cannot always answer your calls and emails, they have all been received and are more helpful and comforting than you know.


"Momo" holding baby Shelby:

Uncle Stephen with Baby Shelby:

June 08 - Move to Transition Room

Today, we were informed that we should not expect to be transferred to Duke until the 9th at the earliest. Basically, Shelby is being monitored by N.I.C.U. here at Mission to be sure that everything is fine, but she doesn't really need nursing care. They are not going to run any tests on her here, because Duke would just re-do everything once she is transported anyway. They decided to move us from the main hall of N.I.C.U. to a "transition room". This is wonderful, because we have our own room, and we can take care of Shelby and bond with her more with privacy. We also have our own bathroom, which Tiffany is very happy about. Public restrooms are not ideal postpartum. We started feeling a little better after this move. The nurses for the Transition Room are excellent, and we have been getting positive feedback from them, from doctors, and from family and friends who have experience in nursing. We keep hearing about how malleable the infant brain is, and how it can handle damage of this nature much better than an adult's brain could.



We hope that we can finally get a good night's rest tonight, and wake up tomorrow ready to start tackling any issues that we can.

June 07 - A Day Full of Bad News

On Sunday, we prepared to get discharged from the hospital, and take Shelby home to start life with our new family. Tiffany's exam went fine and they started her paper work. At 11:30 a.m., Shelby's pediatrician came in to do a routine exam. We told him we were ready to go home and he literally said, "Let me take a quick look at this cutie, then I'll be happy to oblige". He found some irregularities on her head that he could not feel the previous day because of swelling from her hematoma, and thought that maybe she had fractured her skull during birth. He ordered an MRI at about 3:00, just to be sure everything was okay. At 3:00, Trip went with the nurse to take her down for the MRI. She slept through the whole thing and as they came back up to the room, we were told that Dr. Love was already reviewing the results. We waited for over 2 hours (our bags were already packed to go home), and were starting to get a little nervous. After 5:00, Dr. Love came in and sat down to talk to us. He told us that Shelby's skull was not fractured, but that she had a condition that might require surgery soon. He diagnosed it as Hydrocephalus. As a result of this news we decided to move Shelby to N.I.C.U. to be watched more closely. Of course at this point, we were very upset. Dr. Love hugged us, and went back upstairs to consult with the Neonatologist and Neurosurgeon. We called our good friend, David Bradley, and he came over to pray with us before Shelby was moved upstairs. Tiffany had already been discharged from the hospital, but we were given a "sleep room" down the hall from her. Once in N.I.C.U., we were informed that the fluid in her brain was more substantial than they first suspected. He showed us her MRI slides and what we saw was absolutely terrifying. We were told that Shelby would require brain surgery to place a shunt to drain fluid from her brain either that night or the next morning. Even later that night (about 9:30) we finally met with the neurosurgeon on call. He re-diagnosed Shelby's condition as Ventriculomegally which means that one of her ventricles had swollen significantly and was full of blood. He recommended that we be transferred to Duke Hospital to see a pediatric neurosurgeon because there were none in Asheville. We were told that the transfer would happen either that night or on Monday morning. Obviously, this was a lot for us to process in just a 4-hour period. That morning, we thought we were taking our baby home, then later that night, our girl was facing brain surgery and a trip to Duke Hospital.


Needless to say, this was a terrible day, and the news kept getting worse and worse. Right now, the only good news is that this was caught early (almost by a fluke), and that Shelby seems to be acting normally for an infant. We are unsure what the long term effects will be, and we are just trying to focus on the next couple of days and weeks.

June 06 - Shelby meets her family.

After our first night in the hospital and a little rest, we we could not wait to introduce Shelby to her big brother Harding. Apparently he had been a little nervous the whole day before when he woke up to Papa and BeeBee and was told that Mommy and Daddy had gone to the hospital to get Shelby. He took a nap clutching Shelby's pink blanket. Anyway, Harding came in and kissed Shelby on the nose:


He gave her lots of hugs:


And was very excited to be a big brother:

All of Shelby's exams were perfect. She had a bruise on one side of her head called a hematoma from coming through the birth canal. Dr. Love (our pediatrician) came in and said she was exceptionally "cute" and was doing great. She continued to nurse really well, sleep, and poop all day. We rested, introduced our baby girl to friends and family who had come to visit, and cuddled with Shelby all day long.

June 05 - Shelby's Birth

Shelby Frances Kinnaird made her entrance to the world on her due date, June 5th, at 5:59 p.m. She weighed 7lbs 13oz, and was 22" long. She is absolutely beautiful and looks a little like Harding, but has a dimple on her chin and white blonde hair.