Only God Counts the Stars

At Peace, At Last

2011-03-24T07:33:00.002-04:00

Seren died quite peacefully early Sunday morning, March 20. We are grateful that she ended her days in peace and are reassured that she feels no more pain or suffering.

If anyone wishes to make an acknowledgement of Seren's life, please let them know that we are requesting that donations be made in her name solely to the following charity:

Kidspath of Greensboro

2500 Summit Ave.

Greensboro, NC 27405

Kidspath of Greensboro is the hospice service provider that cared for Seren at the end of her life. We wish to maximize Seren's legacy by concentrating donations to this one place, that cared for Seren, and for all of us, so amazingly well.

We are humbled by the love and support of our friends and thank you for all your kindnesses and prayers during Seren's life.

Christmas Again-Update

2010-12-18T16:46:00.010-05:00

Ok-clearly I haven't updated the blog in a while. Over the holidays enough people have asked about the blog that I decided to pull myself out of hibernation. I kind of froze up on the blog because I didn't know what to write. I haven't really known what to say. I feel like I should be writing about defying the odds or huge amazing miracles or even news of something that turned things around for Seren. I think we all initially hoped that Seren would have some sort of mental development or some sort of awareness. That isn't going to happen. When I look back at my initial posts it is almost painful how much hope I carried. As time has passed, it has become clear that Seren is permanently and profoundly impaired. I think she most accurately could be described as in a permanent vegetative state. She doesn't respond to her environment. She does have periods of sleeping and waking, but she doesn't smile or respond to stimulation. She does not have the slightest bit of development, nor will she. It's difficult to explain to people. Its uncomfortable for people to hear and understand. It is incredibly sad for everyone. Its kind of hard to put that out there.

I do have one plug-something that almost made me blog again a while back-

If you wish to understand the perspective of a mother with a profoundly impaired child and the impact it has on a family-I highly recommend Before and After Zacharia by Fern Kupfer. Fern wrote this book in the 80's. In fact, Zacharia was a year younger than me. Fern gives a no holds barred account of her feelings and the impact of Zacharia on her family. The only real difference in our stories is that it took their family two years to determine what was discovered about Seren in two weeks. (Note: their conditions are not the same but their level of impairment is similar).

Most people can't begin to understand what its like to be me. Fern explains a mother's perspective bravely and perfectly. I warn you, its not a feel good story, but it is a good story, and one that isn't told very often. Parents in a difficult situation should have choices. Fern explains the choice that both she and I made. There is no judgment of any other choices. I contacted Fern via email and she has been a huge encouragement to me.

We are all doing well, and counting the blessings we have, as we find them. Sorry it has been so long- but Merry Christmas to all and sincerest wishes for an glorious holiday season.

Stepping Stones

2010-02-28T09:38:00.004-05:00

I realized I never posted the stepping stones that we made Lance for Christmas. Although I'm sure no one is going to be seeking me out as a toddler art teacher, we had a great time making them! The top one is Gray's free form interpration, the bottom is Seren's butterfly. It's more difficult getting footprints in wet plaster than it looks!

Happy Sunday!

2010-02-07T19:51:00.001-05:00

Krispy Kreme Challenge

2010-02-06T10:32:00.002-05:00

So, in 2004 some crazy students decided to run the two miles from the NCSU Belltower to Krispy Kreme, eat a dozen donuts, and run back. Its now turned into a "thing"- a huge thing actually. 6000 People huge. This year was super cold but filled with super excited and insane people. Three of them were Lew, G and me! We just brought our donuts home instead of downing them during the race but it was really fun. We have no pictures because we had not one single electronic device with a charge (not surprising). Another nice thing about the race is that it benefits NC Children's Promise at UNC Hospitals where Seren was in the NICU and had her recent surgery. It was a fun start to the day thats going to end with a hopefully very successful Casino Night!

North Hills Club Casino Night benefitting Hilltop Home for Children

2010-02-01T14:31:00.003-05:00

I have talked repeatedly about the amazing facility that provides care for Seren. I know that I can never repay them for everything they have done for our family, nor, for various reasons, have I ever stated their name on this blog. However, I now have a compelling reason. Hilltop Home for Children has been in Raleigh since 1963 and has provided amazing care ever since. Hilltop is a private facility, but cares for children as a 501(c)(3) regardless of the amount the individual family can pay.

North Hills Club is a swim and tennis club in Raleigh that hosts a charity casino night each year. The membership votes on the charity. I was shocked, yet pleased beyond words, when this year Hilltop was selected as the beneficiary of this event.

The event is open to the public and will be this Saturday, Feb. 6 from 7:00 p.m to 11:00 p.m. The event is held at North Hills Club in Raleigh located at 4824 Yadkin Dr., Raleigh, 27609. You can call (919)787-3655 and pay for your tickets via credit/debit card. Tickets should be purchased in advance. Tickets are $50, $30 of which goes directly to Hilltop Home. If picking up tickets is a problem I will be HAPPY to get your tickets and get them to you the night of the event. You can email me at jenniferrader@hotmail.com and I'll make arrangements with you!

Further, there is also a silent auction at the event and all proceeds go directly to Hilltop Home. We have a great committee getting this evening underway and we have some great auction items this year. We have beach houses, hockey tickets, panther tickets, theater tickets, even autographed Peter, Paul and Mary C.D.'s for the music lover in your life:)

Casino Night is a fun evening with craps, blackjack, Texas Hold'em and more. If you want to attend we would LOVE to see you there.

I am proud to be raising money for this amazing organization, and the even more outstanding people who comprise it, even if it will fall short of ever truly representing how much they mean to us and all the other families that they help.

Hope to see you rolling 21!

xo, j

Update

2010-01-17T14:30:00.002-05:00

We've had a sick little boy around here the last few days so I haven't had a chance to provide an update on Seren's surgery. The short version is that it went totally fine. Her heart took the anesthesia just fine, and she started taking her normal formula through the new tube within twelve hours.

The thing that is difficult to explain, or to even grasp when you see it, is that Seren's mental capacity essentially means she is almost entirely unaware of anything around her except her comfort level. This means that Seren generally doesn't know where she is or what is going on in a cognitive sense. She does respond to her environment, but not in the sense that she sees something and thinks "that's a noise", "that's a blanket," "that's a face" etc. This is of course, the saddest part of her diagnosis. Her severe disabilty also means she doesn't "suffer" in the sense that the surgery would have been a traumatic event for her. With a child like Seren, the difficult thing in this situation was determining whether she was in pain or not. She was generally very peaceful in the hospital which was comforting. When she cried was it just a cry, or was it pain? We made sure she got medicine, and used information from people who have had the surgery before who are able to communicate to determine what type of medicine she needed. My goal was to keep her as comfortable as possible, and return to her to her home quickly. Although there is no real proof, I think she does better in a familiar environment. Its just my mother's instinct that she does better with the least "information" thrown at her as possible, so I wanted her back at her facility asap (plus, I trust them more than I trust anyone else). So, to that end, baby girl is back to her facility and doing just fine. I'll post a picture with her face tube free soon!

It's eight o'clock and all is well....

2010-01-13T20:06:00.003-05:00

We are all back to our respective dwelling places. Everyone is safe, snug, and, in Seren's case, doing well post-op. We're all super tired so more details will have to wait until tommorow. Nighty, night everyone.

Pre-Surgery

2010-01-11T17:07:00.003-05:00

So-it seems that the day of surgery is almost upon us. Since the procedure is considered "elective" I'm expecting to get tossed about a bit. We were originally told that the procedure was at noon, and that we needed to get to UNC at 10:30. We've already received notice that the schedule has changed and we need to be there at 6:00 for a 7:30 am procedure. Good thing I'm an early riser!!! Here's hoping that this means that S has less of a chance of being bumped off the schedule. The surgery is only scheduled for 45 mins. so by the time most people are getting their day started we should hopefully be in recovery with the whole thing behind us! Thanks for all the thoughts, prayers, emails and hospital goodie bags. :)

xo,

J

Welcome 2010!

2010-01-02T07:41:00.002-05:00

The Windley family is seriously excited about putting the last decade behind us! It took me a while to realize that instead of just a new year we were saying goodbye to the 2000's (what do you call that-the millennium decade or something?) Ten years ago, I ushered in 2000 in New York with a bunch of friends from law school and graduated and got my first job later that year. I met Lance in 2001. This has been one incredibly eventful decade.

This year, we spent New Years Eve roasting oysters with some great friends. It meant a lot to me to be with these people who have been so wonderful and supportive of us in the last year, and whom we could just be ourselves around. It was a really fun evening.

On New Years Day, Lance took G "hiking" in the backpack over to see Seren. Once they got there, I went and picked them up. It was time for Seren to eat while we were there, and since Seren is fed through a tube and a pump hanging on a pole, we had to roll the pump with us to the family room. G was determined to roll the pole "all by myself," and bless his sweet little heart, he did it. It took a while, but he rolled it all the way there and all the way back with Lance carrying Seren behind him. I was quite proud of my sweet and determined little guy. It was great start to the next ten years.

xo

Happy New Year

2009-12-28T11:06:00.005-05:00

We made it through the Christmas season. My parents and grandmother came to town through Christmas Eve, Lance, G and I had Christmas morning at home and then went to Lance's parents. Although it wasn't the Christmas that any of us would have envisioned a year ago, as a group I give us all gold stars in the "counting your blessings" department:) It was a very nice Christmas season.

I'm writing this with G on my lap as he is VERY excited about Baby Seren's Christmas present. As Lance's Christmas present we made a stepping stones- each from G and S. I thought this would be a great gift for the garden Lance made right after Seren was born. G's is more a free spirited interpretation, but, completely on his own, he told me Baby Seren's was going to be a butterfly. So-a butterfly it shall be. We are heading over to see Seren in a bit to get her footprints as the butterfly wings. Luckily Lance's parents are meeting us over there to give me some help with the whole "project." Should be an interesting morning!!!

Happy Holidays

2009-12-19T14:42:00.007-05:00

We have survived Thanksgiving and the Drumstick Dash. Grayson even made the picture section of the race's homepage!! Depending on when I have seen any given person in the past month, I will have told you a different surgery date. Nothing is as easy as it seems. However, it appears that the surgery is now definitely set for January 12th. We can still get bumped the day of, but, unless that happens, the 12th should be the date. I think we have made all the necessary arrangements for Grayson etc. and I pray everything goes as planned.

Christmas is coming fast upon us, and we are hoping for a happy time as a family. This is G's first Christmas where he can really understand what is going on so we are having a good time introducing him to the Christmas story and starting ongoing family traditions with him.

This Christmas I know I have gifts that can't be put in packages and wrapped in bows. So does Lance, and so, hopefully, will Grayson. Many people have said how they enjoy holding Seren. I think I have figured out why-its because most of us never see another person who is utterly without guile. She is a true innocent. Maybe that's the lesson she was sent here to show all of us.

I'm not a crier. Never have been. However, as long as I can remember, I have cried at the sound of a children's choir singing. Those little hopeful voices always got me all choked up. The other Sunday at church when the Angel Choir sang I finally realized why--its the sound of all those miracles in one place. Every voice you hear is a multitude of miracles. Like Seren's, there are also voices that are silent. There are people who communiate in other ways. They might take more effort to understand, but, in the end the messages are worthwhile. I hope we all can stop and listen to the quiet this holiday season. Merry Christmas.

xo,

Jennifer

Its a go!

2009-11-20T11:31:00.002-05:00

Seren has hit the seven month mark. I didn't mark the occasion because we had a very busy week last week. Most importantly, Seren had her appointment with the ped. surgeon and he's approved the G-tube surgery. This procedure places her feeding tube into her stomach instead of having to have it through her nose. It seems like the nose tube might irritate her a bit so inserting the tube directly into her stomach will be a more comfortable long-term solution. Yesterday she had an upper GI, and, while the initial report didn't seem to show anything we don't have the full report yet. However, as of right now it seems like the sugery will be a simple laproscopic G-tube insertion.

The sugery SHOULD be scheduled by now but I haven't received a call from UNC yet. Seren will be kept overnight at UNC for the procedure so we need to go ahead and get this scheduled in order to make any necessary arrangements.

We are registered for the 5k in Roanoke on Thanksgiving Day. Hope to see some people there! Happy Holidays.

Running and Running

2009-11-04T12:52:00.002-05:00

Its the beginning of yet another month so I'll be collecting miles! One friend completed the NYC Marathon and one the Raleigh half marathon so that was a really big deal runningwise. I think I have suckered Lance and my nieces into running in the Roanoke Drumstick Dash with me on Thanksgiving morning. I've been getting lots of miles from friends from home so I thought I would tell anyone in Roanoke that would be interested in joining us that the signup info is here www.rescuemission.net//category/drumstick_dash/ (I can't get that be a live link so you'll have to cut and paste).

Seren's appointment for the G-tube consultation is next week. Other than that things remain the same. Her latest ear infection seems to be clearing up and we are getting close to a seven month birthday. More updates soon.

Catching Up

2009-10-22T15:17:00.014-04:00

So I've done a terrible job keeping up with the blog. Life has been catching up with me and now I've gotten myself into a situation not unlike when you don't call your friend for a while and you know the call is going to last three hours so you keep putting it off. The pictures above are a few months old and long overdue. These are pictures of Seren in her class. She was pushing the easy button to make the machine react. She was also reaching out to touch a mylar pompom. (Thanks Diane for sending these to me!)

Seren hasn't really made any further progress in reacting to the world but she has definitely made a lot more progress in seeming more comfortable. Its seems she had the dreaded flux (my nickname for reflux) so some medicine and a formula change have really helped her out. Her seizures are much improved. We are starting to figure out what other things she needs to make her comfortable and I think progress has been great on that front. Its much easier to sleep at night knowing she is comfortable and content.

Since last month, Seren has, of course, turned six months old. A huge milestone. She is weighing in at 9 lbs, 13 ounces and is doing generally well. She is ready to be upgraded to the next size hair bows:) However, her big news is that she will likely be getting a feeding tube inserted in her abdomen soon! This will get that wretched tube out of her nose and hopefully make her more comfortable.

This morning we took her to a cardiologist who did another echo cardiogram- everything is still pretty much the same but right now her body is compensating for the defects in her heart. I think that is pretty amazing. SO-after getting general clearance to go under the anesthesia necessary for the surgery we now have a consult with the Dr. who will do the surgery. I anticipate that it will happen pretty quickly once the decision is made but then what do I know?

I've always been a date oriented person so the six month birthday hit me pretty hard. I don't have anything profound to say about it in our individual situation. It takes a while to adjust to what your life looks like and I think we might be getting there. We have realized with absolute wonder people's capacity to be greater than you could ever expect. In honor of Seren's six month birthday-to everyone who has touched us in such an amazing way-thank you is not enough but at the moment it is all I can offer. Thank you for truly caring about us and letting us know. On difficult days we remember our dear dear friends as well as the people who knew us only a little bit, or even not at all, who have prayed for us, brought us dinner, sent us notes, sent baby S gifts, let us stay at their house, watched G for us to go to doctors appointments or on a date, met, held, cried and prayed over Seren and cut us such slack for not being the people we used to be as we find our new footing-as well as the amazing wonderful special people who care for Seren so so so very well-- you are the people who remind us of what is good and worth trying for and what gets us through the day.

Somebody told me that Seren would bring out the best in us. It gave me something to strive for--at the moment though I do know that Seren has shown her parents the best in other people. Thank you.

Oh and I almost forgot the miles-We have gotten 612 more miles!!! One bible study group contributed over 100 and the lead up to the New York Marathon is also helping out in a major way (nooo its not me running in it)! She's had three people run in half marathons for her and lots and lots of other contributors-People from high school and college who have made the effort have really touched my heart. It makes my day to hear from someone from my past who thought of Seren that day. I'll be collecting again in a few weeks!

Five Months Old Today

2009-09-13T12:51:00.006-04:00

Today is Seren's five month "birthday." The time has really gone by terribly fast. Five months is where I start to really remember G as a "person," when his personality really started to come out and I got to really know him. Its tough not getting to do that with Seren. Its tough to see that she isn't past a newborn stage of development to see a personality shine through. Its difficult to watch days pass and milestones pass her by.

I'm glad Seren is well-cared for and comfortable. I'm glad a place exists where she can receive the necessary medical care and where I can rest easy that Seren, as well as every other child, is loved, appreciated, and taught to thrive in their own individual capacity. Her community is larger than one I could give her, and I know she benefits from all that care. I love how each nurse has their own individual special interest-one delights when she turns her head, one when she pushes a button or reaches an arm, one when she takes a paci-its a special thing to see a group of people, who care so much for her, working with her in various ways. I know it will aid in her development to have so many people working with her in so many different areas. I am grateful to them beyond measure or words. It has taken a lot of people, a lot of work and a lot of love to get us all to this five months point. Even though its a very short period of time, five months is much longer than the doctors told us to expect and quite an achievement. So congratulations Little S! We love you. xoxo, mom

P.S. We have also hit the 500 mile mark just in time for Seren's five month birthday! We are at 513.3 miles-Thank you!!!

Five Days Until Five Months Old

2009-09-08T16:51:00.006-04:00

In just five days Seren will hit the big five months-hard to believe it. Here's a current photo-taken this morning while G was in "school." The weather was humid so her hair wasn't cooperating with us but we tried to tame it a bit! S and I hung out and watched thirtysomething on my ipod...she thought the characters were too self involved so she went to sleep. :)

Her seizures are better. Her tummy is better. Nothing is perfect but both have improved. The antibiotics seem to have worked on the infection. She still has a bit of a cough (which is a difficult thing to do with a feeding tube in place). She's about 9 and a half pounds, so she's very tiny for a five month old.

Developmentally she is still just as she was as a newborn so I don't have much to report. I can't brag about her sitting up or rolling over or eating solid foods so instead I'll brag about how much everyone loves her, how well her nurses take care of her and how she is clearly one tough cookie. Seren's five months have been eventful. Her small victories are larger than our large ones. She puts the world in perspective for almost everyone who meets her. She can't see or smile or even drink out of a bottle, but she has a huge impact on everyone who knows her. Not bad work for a five month old.

Miles Tally

2009-09-03T08:12:00.002-04:00

Thank you so much to everyone who donated miles for Seren-so far we have 327.5 miles! That is some good progress!!!! My own contribution was sad and pitiful-only 30-- but its a start. Its inspiration to do more next month. The beautiful weather we are having is a great motivation to get outside.

If anyone is interested in a 5k in the Charlotte area-Sat. September 26, 2009 there is a race called the Live Right 5K. Please see Live Right 5K Charlotte, North Carolina 28226 Saturday, September 26, 2009 @ 8:30 AM (Source: www.active.com) One of Seren's mile donor's (and a friend who is actually somehow related to Lance) is running in this event and we would love to have everybody double up their miles for a good cause!

Seren is doing a bit better on the antibiotics but still has cold symptoms. I hope we caught this early enough so that she doesn't have to suffer. There's a lot of crazy illnesses going around these days! My goal for Labor Day weekend is to post some current photos.....

Another Ear Infection

2009-09-01T07:40:00.002-04:00

Yesterday I got a phone call from Seren's nurses that she had spiked a fever and was not doing well. Luckily we were able to get someone to watch G and get a doctor's appointment within a few hours so we were able to get to the doctor really quickly. I don't think she seemed as uncomfortable this time as she did the last time she had an ear infection but I'm not sure. She's on a big dose of antibiotics so hopefully they will take care of the ear infection as well as any thing that is going around. She also weighed in at 9lbs, 8 ounces. I think this was more of a function of the scale being wrong last time as opposed to drastic weight gain but I'm glad she's "officially" passed the nine pound mark.

I'm tallying up the miles (there are a lot of them-yea!) and will post them today or tomorrow.

Miles Collection!!!

2009-08-30T14:55:00.002-04:00

Its the end of the month so I am collecting all the miles I can get! Lots of people have already sent me miles and we are making fantastic progress. I had no idea I knew so many runners! It touches my heart when people give me miles for Baby S. My own contribution definitely needs some improvement but I'm doing better than nothing at all. You can send them to my email or on fb or as a comment to this post. I'll get them up one day this week!

4 Month Well Check

2009-08-24T14:28:00.002-04:00

Seren had her four month well check this morning. Since Seren doesn't get to go on outings like other babies we get her all dolled up for the Doctor. She looked quite stylish in her cute new bubble from Mimi. She's still incredibly tiny. She weighed in at 8lbs, 12 ounces and 22 1/2 inches long. She's grown only a tiny bit since she was born but she is still doing remarkably well for a baby that was "guaranteed" not to make it to the four month point. We think she has the dastardly reflux so shes on some medicine and a new formula. The only times she seems really fussy seems to be correlated to when she gets formula so we are crossing our fingers for an improvement! Poor S also had to get some shots so she was not pleased with us at all, but overall she recovered quite quicky. We go back for the next well check at six months, which, as her nurse pointed out, means that when we go to the next appointment it will be cold outside. Time really does pass so quickly!

Its been a while!

2009-08-18T07:46:00.002-04:00

I just realized it has been a really long time since I made any posts about Seren. I have been traveling around with G a good bit-making sure he enjoyed his summer. Lots of our friends have been wonderful about inviting us to the beach or for visits and we have really enjoyed catching up with the people we love and getting to escape the heat.

Seren turned four months old last week. She got dressed up in the most adorable dress that Lance's mom gave her to celebrate. I didn't get any pictures because I forgot my stupid camera! Lately, Seren has been working on sucking on paci's--the success of that venture all depends on her mood. Some days she hates it and some days she will go to town for half an hour or more. She also went to the classroom and got propped up in a chair-she repeatedly reached out to a mylar pom pom placed in front of her with her right hand. The difficulty is determining whether her movements are purposeful or by chance but the more she does something the more there is an indication that her actions are purposeful. She also seems to pay attention to sound, noise and even hearing a book read. Her small victories are what keeps us going.

As for me-the running is going pretty well. Lots of people have contacted me about donating miles. Thank you!!!! If you just want to let me know I'll put up a post at the end of each month showing where we are. I'm trying to find a way to put up some sort of application on the blog where people can enter their own on a counter. I think we may get together some groups to do some 5k's too-of course most days I have a hard time getting it together so those things may take a while. I can't believe this summer is almost over and its back to school time already. Hopefully, I'll be better about posting when school starts and we get back into a set routine.

The Journey of a Thousand Miles...

2009-08-03T12:57:00.004-04:00

A while back one of my friends posted on Facebook that she had heard a good way to ensure a good run is to run "for" someone else. She dedicated her run that day to Seren. It was very sweet. I have been running off and on since my very non-illustrious days on the high school cross country team. I started running again about a month ago since I desperately need to get back into pre-baby shape and I need a good stress reliever.

I like to make fun of Lance for making statements that are overly dramatic about simple events. After my first run I came back and told him I had not made it very far at all to which he replied "The journey of a thousand miles begins with a single step." He must have memorized a bunch of those inspiration posters at some point in his life:) Even though he tends toward the corny sometimes, he does have a point (which is one of the many reasons I love him). So in the interest of public accountability and potential humiliation I'm putting this out there. I am going to run a thousand miles for Seren. Maybe with a little help from my friends?? I'm starting today and my goal is to have a thousand miles by Seren's first birthday-April 13, 2010. Anybody who wants me to count their miles toward the goal just shoot me an email. I'll try to update the progress about once a month or so as a reminder to myself to be thankful for what we have and what we can do and to take that time in honor of Baby S.

Happy trails to me! YIKES!!!!!

Fun Socks

2009-08-01T19:37:00.007-04:00

I haven't been very good about keeping Seren's status updated. The main reason I haven't posted much is because there isn't much news. Its good that I don't have any news because it means Seren hasn't been sick or had a fever or any other complications. Its not so good that I have little to report because we haven't had any real advancements or milestones. She is growing a bit and generally doing well. Her seizures are much less severe and much less frequent and she definitely seems comfortable. The Governor Morehead School came and evaluated her and she responded to both sound and light so that was very exciting for all of us (we already knew that but it was nice to have it confirmed).

Poppy and Mimi were in town a few weeks ago which means...more pictures! I have attached a recent picture of Baby S sporting her fancy Trumpett socks. G had the boy ones that look like tennis shoes and a good friend gave S the Mary Janes. They are hysterical--I love them!!

Looong Day

2009-07-23T19:36:00.010-04:00

I screwed up on a million fronts today. Before 7:00 am I had already overslept, forgotten to eat breakfast, forgotten my directions, and failed to confirm where we were actually going for Seren's genetics appointment. Stellar. Like a complete idiot I actually thought that I would be able to get Seren to Duke and back in time to get Gray to a birthday party in Raleigh at 11:00. Seren's appointment as at 8 so I figured we would be done by ten and home in time to get to the party. Ha! Ha! Ha! I didn't get back to Raleigh until 2:00 in the afternoon and I didn't bring any food or drink with me. I was starving . Seren's sweet nurse wouldn't even let me buy her lunch. She had to be ready to pass out! I hadn't even made lunch arrangements at home for G. I was a complete trainwreck. Seren had enough food though so we at least took care of the wee one.

Discombobulated morning aside, I really like the geneticist we saw today. She had a really nice manner about her and seemed to really know her stuff. I liked the way she explained things to me as well. We also got to work with a genetic counselor that specializes in genetics related to eye disorders so it was nice to talk to someone who could really explain things in detail. I really appreciated the advance work and paperwork they had prepared for our visit. The geneticist at UNC and the geneticist at Duke agree as to a probable diagnosis. We have had blood sent off for testing but since we are part of a study the timing works differently and it is anyone's guess as to when we will find out any results.

I have to say that genes are fascinating. They are at the very core of what makes us people. The only thing I remember from high school science class was the square of dominant and recessive genes and how they are passed on to children. Its amazing how one tiny thing can send information to so many different parts of our body. One thing I've learned though this process with Seren is that we all have genetic mutations. Most of us have mutations that don't affect anything. However, in Seren's case the mutation was somewhere critical. It is what changed everything for us. Maybe today we got a tiny bit closer to getting some answers.

Maybe?????

2009-07-22T19:55:00.003-04:00

Seren's new seizure medicine seems to be working!!!!! The third medicine was the charm. She is a tiny bit drowsy but her seizures are greatly improved. She seems so comfortable and content now. It is a wonderful wonderful answer to prayer! Its so great to be able to hold her and not worry that at any moment she is going to go into a painful looking episode. We are going back to Duke tomorrow to see another geneticist. I'm not sure what I'm hoping to get out of this appointment, but it would be great to walk in and have the doctor say that she treated a baby with the exact same symptoms and it was "x" so that we can have an answer and be done with the uncertainty as it relates to a diagnosis.

Seren has started school (she's an overachiever clearly) where her reaction to stimulus has been quite encouraging. She's also been making efforts toward taking a paci. This would be huge. I'm so very sorry but in addition to being a great stride in her development, I think paci's are just adorable. She also got her first pair of fancy pants. I searched everywhere to find a pair small enough but I finally uncovered some. They are so stinking cute! Hopefully a picture will be forthcoming. I must admit that girl clothes are fun!

Photos with Mimi

2009-07-15T12:08:00.014-04:00

Two weeks ago Mimi was here which meant we got some pictures with Poppy's camera. The picture above is Mimi with her grandchildren in the family room at Seren's facility. It was donated by a Wake County organization so that families can spend time together in a true family setting. Its stocked with some really neat toys that G enjoys getting into. The room always starts out perfectly neat and gets torn to shreds in minutes (hence the toys all over the place and the upended chair). Grayson figured out how to put movies in the VCR which sometimes keeps him still for second or two but he mostly runs around like a banshee. I'm not sure how Seren feels about the wildness that ensues.

This particular day Seren managed to stay peaceful during all the chaos.

But then we wore her out.... I thought this little yawn was just precious.

Three Month Update

2009-07-13T14:32:00.006-04:00

I'm having a hard time staying current with Seren's updates! She was born three months ago today which boggles my mind. She had a doctor's appointment last week that confirmed she had finally gotten rid of her ear infection. Her rash is totally gone as well. The jury is still out on the new seizure medicines. Yesterday, in a three hour span, she only had two episodes, and one was very mild, so it seems to me that she is improving a bit-however, sometimes I think that and the next day they are worse again, so, I'm withholding any sort of determination.

As time passes its definitely hard to see other tiny babies who are progressing when Seren is still just as she was as a newborn. Even though some of her prognosis breaks my heart every single day, she is the sweetest most lovable little baby just the way she is. Seren is a "floppy" baby so when she lays up against you she does it in the sweetest, most dependant, and seemingly trusting, way that she can't help but melt the hearts of everyone who gets to hold her. Its like a little gift she gives us.

Happy three month birthday little S-You truly are special!
(xoxo, Mom)

July Already?

2009-07-06T13:23:00.002-04:00

Its a Monday which means Seren is another week older. She's thirteen weeks today if my math is correct (and frankly, it may not be-Lance is the sole numbers oriented person in the family). Time is flying and baby girl is definitely getting bigger. She's not on any charts but she is still outgrowing clothes and looking bigger. Her hair is starting to curl a little, which, really, we all knew would happen sooner or later. You just can't entirely escape the curly hair! Several of her nurses agree with me that she smiles in response to certain stimulation which is just thrilling for all of us!!

Medically, Seren's ears seem to have cleared up but her seizures remain problematic. We are working with several doctors to adjust her medicine to try to get the seizures under control. The good news is that other than the seizures Seren seems to be doing rather well. One of her eyes seems to be slightly less opaque than it was at birth. We were told that sometimes this can happen. Her vision would remain restricted in that eye but we will take any improvement we can get. We do think that she can hear some sounds and perhaps see shades of light. I've been taking my ipod and playing it with the ear buds about four inches away from her ears. I think she maybe liked the "Rainbow Connection" but she was definitely not a Sinatra fan. Oh well-points for trying I guess. Tomorrow maybe I'll try some Coldplay or Elvis or something:)

Progress

2009-06-28T08:37:00.008-04:00

Last weekend, Seren started having more seizures. The duration wasn't as long, and they didn't seem as severe, but she was having them with increasing frequency. Then, on Tuesday she broke out in hives. They were all over her body from head to toe. Poor baby just did not look like she felt good at all. On Wednesday she had her two month well-check at the pediatrician. He looked her over, said her ear was still infected and that the hives were an allergic reaction to the antibiotics. She was having a seriously rough week! After conversations with multiple doctors, Seren was placed on a new anti-seizure med and a new antibiotic. Thankfully the new system seems to be working - within 24 hours she was looking a thousand times better and showing improvement on all fronts!

My mom has been in town since Tuesday to help us out. G is spoiled rotten (and frankly, so are Lance and I). The timing was nice since mom was able to watch Gray and help out at home which allowed me to focus on what we needed to do to make Seren more comfortable. Mom also helped get Gray out of the house for some summertime fun and even got Lance and I out for a couples night. Mom is leaving today despite our best efforts to convince her she should move in permanently:)

After her big week, Seren had a huge development yesterday. We aren't positive- but yesterday both mom and I thought we saw Seren smile! Even the possibility was thillling. It was a fantastic ending to a long week!

Happy Father's Day

2009-06-21T15:08:00.002-04:00

Happy Father's Day to every wonderful Dad out there. G and S are very lucky to have Lance as a daddy and I am very lucky to have the wonderful dad I grew up with! Happy Father's Day to you both-I love you.

Jennifer

Back to the Doctor-

2009-06-18T12:46:00.010-04:00

Seren started on Phenobarb last Thursday night. We were excited because it initially seemed like Seren's seizures were getting less frequent and less severe. However, over the weekend Seren's condition changed and she started having seizures again. She also became very irritable and fussy. Up until this point she seemed very content and comfortable and rarely ever cried. We were all sure something was wrong but none of us could pinpoint a cause. The nurses called and confirmed the the meds weren't the cause of her agitation but she just wasn't improving. The head nurse (in her infinite wisdom) was concerned that we might be missing another cause of Seren's change in behavior and recommended we take Seren to the doctor. And so, yesterday morning, we found ourselves at the pediatrician's office, where we were informed that Seren has an ear infection-just like the rest of us!

Seren's ear infection was actually good news. It could be that the seizures and fussiness are just due to the ear infection and not an indication that the Phenobarb won't work. We know she didn't have an infection last Thursday because they looked in her ears at Duke so its likely that she developed the ear infection and got fussier and fussier as the pain got worse.

I had been feeling pretty low because I still want to believe that everyone is wrong about Seren and that her brain is really in much better shape than predicted. This little hope/delusion/whatever you want to call it, always gets smacked down whenever I have to read a doctor's report. I got the report from Duke this week. I hated it. On top of that, I couldn't sleep at night because all I could worry about was that Seren was trapped in pain, crying, fussing, having seizure after seizure. However, now we know Seren isn't totally trapped. She can tell us when she's uncomfortable. Not only did she get fussy with her ear infection but we know she doesn't like getting her toe pricked to draw blood and we know that she can be comforted afterward. So it seems that despite all the bad news we did get some good news. Poor baby has an ear infection (and those darn things HURT) and I hate that for her. But, at the same time I'm so glad she let us know and that its something so easily fixed! The antibiotics should start working by this weekend so hopefully we'll get some idea of whether the seizures are slowing down also. Here's hoping!

4 Gens of Jens

2009-06-15T19:53:00.016-04:00

Ok-so I'm sure many people have wondered about Seren's name. First, how to pronounce it. Its pronounced like the name Erin but with an "S" in the front. Its definitely a confusing one as far as pronunciation, and, we know its unusual, but, we like it. Secondly, where did we get it? We actually picked the name for our future baby girl on my 30th birthday. Lance surprised me for that birthday with a visit to one of my BFF's who lives in NYC. While there, Lance and I saw the name Seren. We thought it was a cool name but we weren't really sure it was a "real" name. Later, I checked online and found the name was a was a Welsh name translating to "star". We also ended up meeting a girl named Seren a few weeks later (She worked at our vet and we met her when we were picking the dogs up). All of those factors made both Lance and I know there would be a Seren. We didn't know how she would end up with us, or when it would be, but we knew there would definitely be a Seren Windley.

Another check in the plus column for the name Seren was that it was just close enough to the name Susan which was both my mother's and my (completely superfluous) first name. My mom was named Susan after one of her grandmothers. Seren was close enough to Susan for a family tie-in without being the same.

As for Virginia-at a random point in my life someone pointed out that every female on my mom's side of the family is named a "Gen/Jen" name. My grandmother is Genevieve, my mother Jeanette, and then me, Jennifer. Further, my mother's other grandmother was named Virginia. Put that coincidence together with fact that Lance and I are both from Virginia and really there was no question whatsoever of what our baby girl would be named!

My use of the phase"Only God Count's the Stars" is a complete coincidence and a phrase I found from someone else's blog when I was researching high-risk pregnancies. I totally stole it from another mother because it fit so perfectly for Seren. I had planned on painting that phrase above her bed. I still may be able to tackle that project. Right now I use it to tell people her story.

So that's the history of Seren's name and part of what led us to this blog. With all that history, the fact that we were not only able to bring the four females of four generations together but that those four females are all named after each other was a HUGE deal. When my grandmother came to Raleigh , we were able to take this picture. It is something that means a great deal to us. So there it is-the four generations of "Jen's".

Day at Duke

2009-06-12T08:28:00.011-04:00

Yesterday was the "Big Appointment" at Duke. We sat down with four doctors and a social worker to discuss Seren's health. Seren's condition is not one that can be fixed. Her condition isn't something for which we can go and find a cure. The goal of this appointment was to get a medical team in place to make sure Seren will be as comfortable as possible and be encouraged to reach her full potential- whatever that might be. I think we really made great strides in reaching that goal at yesterday's appointment.

On a personal level, I really like the Doctors as people and their personalities. This is secondary to their medical knowledge, but I still think as far as implementing strategies for care of your child its important to connect with the team of caregivers. I also thought it was pretty neat that the entire team was female! (I know that shouldn't matter but since I spent years of work sitting in rooms with only men I just thought it was neat to see an entirely female team-you know-girl power and all that:)

As far as her general physical well-being baby girl looks pretty good. She is growing and gaining weight. I think the most immediately productive outcome of this appointment was that we reached a decision on how we are going to attempt to control Seren's seizures. She started on medication last night, so hopefully we will see some progress on that front. Everyone agreed that we thought the seizures were uncomfortable for her. Hopefully the medication will get those under control and eventually stop them entirely. She is still in heart failure but its not causing her any discomfort at this point. We will have a follow up appointment in a few weeks to look at her heart again.

No one knows what Seren will be able to do. We don't know if she will be able to interact with her environment or meet any developmental milestones. I trust the nurses at her facility a great deal more than I trust a neurologist or any other physician's opinion. They have seen many many of these children and they see them day in and day out. Right now the general consensus is that we will have to wait and see. There are children who are initially given a very grim diagnosis and who have serious problems with their brains that are able to surprise everyone and interact with their environment in certain meaningful ways. Some children are even able to make great strides. Seren's condition is complicated by the fact that in addition to being severely impaired she is also blind. Even without the malformation of her eyes, Seren would likely be blind because of the lack of function in her brain; however, I believe the inability to see images makes her condition more limiting.

We probably will never know what Seren understands or feels. There is a good chance she won't progress beyond where she is now. However, there is always hope. The only way we can say with certainty that Seren won't make any progress is if we don't try. So rest assured-we will try and try and try. We will give her every chance she deserves! Thanks to everyone who offered encouragement yesterday-it was a rough day but still a day to be thankful.

FINALLY!

2009-06-06T12:28:00.008-04:00

Well last night after a trip to urgent care where I was informed I had a sinus infection and an ear infection (what am I-a five year old?) I was told that I could go look at Seren while wearing a mask. After 24 hours on antibiotics I'll be able to hold her again. So last night at eight o'clock I tore over to see baby girl as fast as I could. She looked so big! She has definitely grown this week. She is also somewhat of a night owl so she was wide awake and very alert. She kind of turned her head when I came in so I don't know if she heard my voice or could detect a shadow at the side of the bed. Maybe it was just wishful thinking on my part on either count. Either way, it definitely was wonderful to see her and I'm counting the minutes until I can hold her.

Seren will be having a very social Saturday. My mom and grandmother are coming to town so my grandmother can meet Seren (Poor Dad got stuck at home watching the dogs). I can't wait to get a picture of four generations of the "jen" names in one place. My parents have been great about coming to Raleigh to visit and help us. I added up their time in the car since Seren's birth and it came to over forty hours! Seren also gets to see her other grandparents today. Lance's parents have been wonderful about coming to visit Seren. They come and hold her and cuddle her at least two times every single week. It warms my heart to know that when I can't be there Seren is still getting lots of love and family time. Lance's parents moved about an hour away from us last summer and I must say that it has been great having them so close. All of our parents have been so supportive of Seren and of our situation in general. Seren is a lucky girl to have four such wonderful loving grandparents and to get to meet her great-grandmother today! Should be fun!

Rendered Speechless

2009-06-04T11:05:00.004-04:00

We've had a long week here in the Windley house. I got that cold/sore throat combo that has been going around which has meant that I haven't been able to see Seren since Sunday (although Lance assures me that she is doing wonderfully). Its KILLING me not to see her. I know that right now my staying away is the best thing for her since we can't even consider exposing her to something that might make her sick but for me personally its been awful! It just goes back, yet again, to what I have said since the beginning- as a parent when given the choice between you suffering and your child suffering you pick yourself every time. I just remind myself I should be thankful that I'm the one that came down with the cold instead of Seren.

One side effect of the cold has been that I completely lost my voice. Nothing. I could barely whisper. I have never completely lost my voice before. I always knew I was a chatterbox but didn't realize how much until I was rendered completely speechless. I found it very upsetting. Losing my voice really made my heart ache for Seren, who we have been told will never speak. Just not being able to speak was isolating so thinking that not only will she not be able to express her needs and wants but that she won't be able to see or possibly hear the people around her has really hit home this week. I know her brain operates differently than mine and I know we will do everything possible for her to communicate in her own way but I have really struggled this week with understanding what the world is like for her. Please pray that we can see God's plan for our baby girl. I know He has something in store for her that I can't possibly comprehend so we really need prayers to help us see and do what God intends.

Along those lines, we have been able to schedule our appointment at Duke for next Thursday. I'm not exactly sure what we will do at the appointment but they are closing the clinic for the afternoon so the doctors can see us. I'm quite pleased with our pediatrician for getting us into this program since I think it really will help us get a comprehensive plan in place for her care. I'm ready for her to start her therapies also. I had initially thought we should hold off on them when she was so weak physically but since she seems to be stabilized I want to start working as hard as possible on having her reach her full potential in whatever capacity that might be so hopefully once we go to Duke we will have some plans in place.

Several people have asked about my friend's baby. I am happy to report he was born last week and came through his heart surgery with flying colors. He had a great day yesterday and there is every hope that he will come out of this journey a healthy and happy little boy!

Prayers for a Friend

2009-05-27T09:54:00.000-04:00

Seren's condition remains generally unchanged. Her seizures had slowed down but yesterday they started to come with more frequency again. We still aren't sure what to expect from her. She's six weeks old now and so it becomes more obvious each day that she isn't making the progress of a child without neurological problems. We are going to be able to have her seen by a doctor at Duke that specializes in children like Seren who are born with multiple congenital defects. This doctor is going to be able to help us ensure that Seren lives the most comfortable life possible. We have been told that Seren's life expectancy may be very short. However for the most part she also appears generally healthy so we also have to plan to make sure she gets every therapy possible. We want to give her the best chance at being able to interact with her environment on some level for the time she is with us. She is growing very well and is already out of newborn diapers. She's definitely able to absorb nutrition! G loves going to visit her and asks "see Baby Seren," quite a bit. Going to see her has become one of our regular outings and I'm glad everyone is kind enough to allow me to bring him to visit her.

I'd like to ask your prayers for one of my dear friends who is in labor today with her little boy. We met online through a group of concerned mothers who had pregnancies with potential complications. She has been an encouragement to me throughout my pregnancy and after Seren's birth. Her little boy has a heart defect that was detected prenatally and which may require surgery. Please keep this family in your prayers for a safe delivery and a healthy son!

Pictures

2009-05-23T08:28:00.000-04:00

Here are some pics of G kissing his baby sister and Seren having a nice little nap!

G is Two!

2009-05-19T20:26:00.000-04:00

Two years ago tonight Grayson was born! My sweet baby boy came into this world six weeks early and amid much drama but he was a tough little guy and he did great. After Gray was born every morning became a childhood Christmas-when life couldn't get any better and yet it still did. I knew then he was a miracle but I don't think I fully appreciated it until recently. He's a delight-a special little kid and I love him to pieces. Since G's birth it has been a long two years for our family but I hope and pray every day that we are creating the best life for him, raising him to be the best he can be and hoping that he will grow up knowing and sharing God's love. Thank you to everyone who made him smile and feel special today. Happy Birthday Baby G! I love you.

Decorating and Little Things

2009-05-18T19:10:00.001-04:00

It seems like I'm starting to understand the rhythm of our new life. I still am woefully behind on medical paperwork, bills, and of course, thank you notes, but hopefully I'm getting closer to living as a somewhat functional human being. Last week our big exciting news was that on Friday I was able to go with a dear friend and get Seren's pretty pretty room is all set up at her new home. She's all set up with everything that is pink, green and girly. Maybe I'm biased but I think she likes it. :) Seren continues to do much better than we had anticipated although it does seem that her apnea episodes/seizures seem to be increasing again.

All of her grandparents were in town for big brother Gray's second birthday so she had oodles of visits and love. She was even doing well enough that we let Grayson hold her and got some really adorable pictures. Dad's camera is chock-full of photos I will post BUT I have to wait until his computer gets out of the "shop" in order to get them (anyone notice a theme here?).

Photos!

2009-05-13T08:54:00.000-04:00

I've finally gotten some photos uploaded. Grayson has been helping me pick out what which ones should go up. In these she's (1) fussing, (2) chilling, (3) hanging outside with mom and (4) posing in her pretty dress. These are all from weekend before last. I'll have some more recent ones from mother's day eventually (there's still that whole CD stuck in the computer problem we're working out! )

Four Whole Weeks?

2009-05-11T18:51:00.000-04:00

I can't believe that its been four weeks since Seren was born-since life as we know it stopped and yet somehow flew by simultaneously. Since Seren can't be here in our home my daily life is generally the same. I get up with Grayson and go through our day. Physically, I feel just like I did last year this time. Its a routine that is entirely wrong. I should be tired from getting up every two hours with a baby. I should be trying to work out caring for both Grayson and Seren at the same time. I should be exhausted in that way that only a truly grateful mother can be-realizing that despite the fact its difficult, exhaustion for caring for your babies is the greatest blessing on earth. Instead, the only place that there's a huge difference is in my heart. I mourn for what Seren has been denied and what she will never experience. I mourn any pain she experiences from living. I wish I didn't know how far people can go to help a friend. I wish that I didn't know there were people that dedicated their lives to finding a way to reach incredibly disabled children in even the smallest of ways. I wish people hadn't touched my own life in such a way that I will never underestimate human goodness again.

I carry emails reminding me that I will see Seren whole one day. That she, just like every loved child whose parents did not get the gift of time, will enter the kingdom of heaven where I can see her-whole and happy. Some days that promise is enough. For now I get to hold her and see her and love her and that is something for me. For her-I hope she knows or feels something. I hope she realizes that she is loved by her parents and her brother and her extended family and friends.

Since Seren has left the hospital she has greatly improved physically. Her heart failure seems to be leveling out. Her coloring is no longer pale but pink and rosy. She has not had nearly as many seizures. She has defied medicine in many ways and I can't be convinced her change is not due to her loving environment. All I can give her now is the best on this earth for her. That gift is really all any parent can give to any child I guess. Seren may be here only a short time or for a very long while. On any given day the only thing I know about Seren is that I love her so much that my heart is broken into a million different pieces. I'm glad she was given to me. I'm glad she's near me. I'm glad I can hold her and smell her and feel her. I'm glad I am her mother. I'm glad I had Mother's Day.

Happy Mother's Day!

2009-05-10T09:14:00.000-04:00

Finally a picture! Here's one my dad got last weekend. I'll upload some more later but for right now we are off to let me play with my babies. Happy Mother's Day to all the wonderful mothers out there (especially my own). I love you mom!

Jennifer

Moving Day

2009-05-06T12:40:00.000-04:00

Seren had a VERY big day yesterday. She "graduated" from the NICU and is no longer far far away in Chapel Hill. She's right here in Raleigh! We have been incredibly fortunate to find a facility that is close to our home that specializes in care for medically fragile children just like Seren. She has around the clock nursing care by a highly trained staff. We get to provide for her just as if she was in our home-clothes, diapers-all the fun and blessed things a family gets to provide for their new child. We can visit as much as we like, have private time with her and get to her very easily. It is truly an answer to prayer to know that our baby girl is so close to us and so safe and cared for. While we are not with her, (and I know I have said this before) I really do believe that she is being watched over by angels that just happen to walk on this earth.

Although Seren is still in congestive heart failure and her diagnosis is uncertain we are confident she is not suffering. Right now we take things day by day and take comfort in knowing that she is loved and receiving excellent medical care. We are blessed that we have been given this opportunity to know that we are doing everything possible for Seren. We are also looking foward into being able to establish a routine and create the new definition of normal for our family that allows everyone to receive the love and care they need to thrive.

P.S. Speaking of normal....if we can just remove the CDs that Grayson wedged into our computer last night I will be able to post some more pictures of Seren from this weekend. The outcome of that attempt is entirely dependent on Lance's mechanical abilities (I'd feel more confident about the success of that venture if our computer ran on two wheels).

A Very Busy Weekend

2009-05-03T15:28:00.000-04:00

Seren's heart is continuing to deteriorate. On Friday night she gave the night staff quite a scare that resulted in Lance and I rushing to UNC. However, baby girl once again proved everyone wrong and showed some improvement. We were able to spend both Friday and Saturday night with her in a family sleeping room at the hospital. During the days. Seren met some more of her "girlfriends", and her primary nurse and I were able to put a bow in her hair and dress her up in some of her cute outfits and blankets. It was fun to enjoy some girly time. Over the weekend we have been able to get in lots and lots of family time with her. Grayson went over to see her again and we were able to get some formal portraits taken.

One of the biggest and best moments of the weekend was that we got to take Seren outside. Since the moment I was told Seren could not see or hear I wracked my brain of a sensory experience I could give to her. The main thing I could think of was for her to feel the sun on her face. I wanted her to experience outside. Yesterday we were able to put her in a snazzy NICU stroller and take her outside to the hospital garden for a while. The weather was perfect and I think she could tell she was somewhere new. I hope she liked it. It was a dream for her we were able to make come true.

We don't know what the future holds, but I feel we have made the most of these last few days. Above all else we have been assured that Seren is comfortable. It is something that gives us peace and allows us to rest. It is one thing for which we can be very grateful.

This Way and That

2009-04-30T16:06:00.000-04:00

For some reason this week I have been thinking a lot about a roller coaster Lance and I rode somewhere (I can't remember where exactly) that was indoors so you couldn't see where the ride was going. When the ride started, it jerked you from side to side instead of the up and down motion I had expected. It was an odd sensation. This last week has been a lot like that ride. We can't see exactly where we are headed and we keep getting pulled in all sorts of directions.

Seren's condition generally remains unchanged. She has had a few cardiac episodes that are most likely seizures. We know that this development is not encouraging for a long term prognosis but we have no definite information on exactly in what way she will be affected. Since we don't have a clear picture of what is going to happen physically, it has been incredibly difficult to put a plan in place for her long term care. However, should she be afforded the chance to leave the hospital, we have had a truly miraculous door open for us. Without going into details right now, I'll just say that I am now convinced that angels walk this earth. As we wait to see what the future holds, I cherish my quiet mommy time with Seren and the moments we spend with her.

G is doing well. We have been able to keep him on his schedule. I'm grateful for both his Mother's Morning Out program and his wonderful babysitter. Both of these outlets have allowed him to maintain a sense of normalcy and allow Lance and I time to focus on Seren.

We are growing fat on all the delicious food that regularly appears at our door and which helps even more than I can say (especially when we sprint into the house back from the hospital right at dinnertime). I won't mention any one person specifically in this blog since its a public forum and since I am afraid that I would forget a thank you and cause offense to someone inadvertently. As it stands, I will be writing thank you notes for the next ten years.
I always knew we were surrounded by wonderful and amazing people but the miles and miles (literally and figuratively) that our friends have gone for us and our beautiful baby girl are astonishing. Thank you. Thank you. Thank you. We love you dearly.

To everyone who has called or emailed-thank you. We try to keep up and respond to every communication but right now we are just not able. People have told me they are worried they won't find the right words or are worried they will upset us. Please know that just hearing from people is encouragement. I promise that every communication that we have received has touched, helped, aided and assisted us in this journey. We feel the prayers for Seren and I believe she can too. Thank you for your care and concern and for taking time to read about our precious baby.

Peace and love,
The Windleys

Scheduled Delivery

2009-04-27T12:34:00.000-04:00

Today was the day Seren was scheduled to be delivered. I thought I would spend the last two weeks getting her nursery ready, preparing G to be a big brother and trying to rest. Clearly life had other plans! Seren continues to surprise, amaze and confound us. She had a busy weekend-she got to meet some girlfriends AND her big brother (who, for the moment he saw her, really seemed taken with her). She got some more grandparent time and lots of excellent medical care. Her physical prognosis remains uncertain. We have been told to plan for her future in slightly larger blocks of time than what we were told initially. Beyond that information we still are unsure of what to expect.

Although (for today) I won't begin to attempt to properly express how grateful we are for the love and care we have received in the last two weeks I do want to say how comforting it is to know for certain that our entire family is loved and prayed for. Thank you.

2009-04-24T19:48:00.000-04:00

Yesterday when we went to the NICU to visit Seren we could tell her condition had deteriorated. We were told that she had a few respiratory episodes and a chest x-ray showed that her heart is enlarged. Her Doctor's are concerned that this will likely have a significant impact on her life expectancy.

In light of Seren's worsening condition, we decided to have her baptized as soon as possible. We emailed Bill from our church last night and he was kind enough to come to the hospital this afternoon to baptize our little girl. Both sets of grandparents were able to attend and make the event a special family occasion. I can't describe how much it meant to us.

I was feeling sad all morning, but as we started to celebrate her baptism I realized that this is Seren's life and that we shouldn't have her live it surrounded by fear and sadness. As parents we don't know how long any of our children might be with us and a mother's job is to give her child the best life possible in the time given. That is what I will do for Seren. Today, in celebrating an important part of her childhood, I was happy. I felt joy for her. I hope she felt love and joy too (and I know I felt the love of six continuous hours of cuddling before and after!)

Seren has not yet been alive for two whole weeks and yet she has brought out the good in more people than I could have ever imagined. I know that people have taken the time to pray for her. We have been told that she is on prayer lists from Chicago to Scotland and beyond. She has received so much love and so many prayers that I know she is special.

We have a wonderful daughter. So today, I would like to ask a favor and request that you please join us in celebrating Seren. She is a child of God.

Update

2009-04-22T08:07:00.000-04:00

There are only a few days in our lives when we wake up and know your life is going to be changed forever. When we woke up yesterday Lance and I both knew that the information we were going to receive would more than likely be very grim and change our lives as we knew it. We were correct.

We went over to the hospital at two to meet with the Neurology Team and the NICU team. I knew it wasn't a good sign the other specialities weren't there because it meant the Neurology findings were going to overshadow anything else that might affect Seren's life. We were told that Seren had a random gene mutation that affected the development of several major organs. Parts of her brain are formed improperly. This means Seren will be severely mentally and cognitively impaired. We know she cannot see and we are trying to determine if she can hear. We have not been given hope that she will make much progress.

Her heart, kidneys and tethered spine may all require surgical intervention in the future but there is nothing that needs to be done immediately.

There is nothing keeping her in the NICU but her inability to eat. Her temperature is improving. In the next few days a feeding tube will likely be inserted and we will be trained on how to use it. Seren will need 24/7 nursing care and we are trying to find the best way to obtain that for her. Thank you for your prayers as we try to navigate these difficult waters and try to maintain stability for Grayson as we give Seren the attention she needs.

The Waiting Game

2009-04-20T20:02:00.000-04:00

Today I called over to the NICU at one o'clock and Neuro was still examining Seren. They decided to do a 24 hour EEG on her starting today at four. Since Neuro wasn't finished until almost 6 (they left and came back a few times) we are scheduled to meet with the entire medical team, including several of the specialists, tomorrow. I'm glad they are taking their time. I'd rather have the big picture all at once than to run off with tiny pieces. Its rough waiting but I understand the reason so that makes it a bit better. So-tomorrow. We should definitely have some answers tomorrow.

The good news. I figured out how to flip some of our pictures we took at Rex so here's a good look at Seren! And yes, that is a full head of dark and STRAIGHT hair!

Neurologists take Sundays off too

2009-04-19T18:46:00.000-04:00

Today Lance and I went over to UNC expecting to receive an update on Seren's MRI from the head neonatologist. However, we were told that the MRI results were not a simple finding and we need to come back tommorow to meet with the Neurologist who can explain everything they found in more detail.

We were able to get updates on some of the other tests that have been performed since she arrived at UNC. The ultrasound of her sacral dimple did show a tethered cord which will need to be watched and may require surgery. I'm a little confused on the status of her kidneys but I think that the general message is that they are working pretty well. A VCUG test will be done in the next week to make sure they are formed properly. There is also some confusion over her hearing screening so that will be repeated in the next day or so as well.

Seren is still acting very sleepy during feedings and taking less and less via bottle so I am guessing we will be told a plan of action on her feedings going foward. Seren's temperature had been holding so for a short while she was in clothes and not under the heat lamp. She took a step back though so today it was back to the warmer. Maybe tommorow will show some improvement on that front. It was a pretty discouraging day as far as diagnosis/prognosis goes so I'm hoping that we will be prepared for the discussion with the Neurologist tommorow.

Again, thanks to everyone for their encouraging words and prayers, phone calls, emails, food and generally looking after us. I lack adequate words to tell you how much it means to us. You are gifts from God. Thank you.

Sunny Saturday

2009-04-18T16:59:00.000-04:00

Since its such a beautiful day today, we decided that Lance should take the day to spend some father/son time with Grayson and make sure he's getting all the attention he needs. It was supposed to be a slow weekend day at the hospital and we thought Seren would just hang out until Monday so I just went to the hospital for a little mother/daughter bonding. When I got to the hospital the nurse told me that they had done Seren's MRI this morning. This procedure meant two things, one, Seren was groggy from the sedative and two, the biggest news yet on Seren's prognosis is available. I didn't want to get the news without Lance so I asked them not to tell me. We want to be told in person so we are heading to the hospital tommorow to talk with the head neonatologist. We are praying that the results will be positive and the Lance and I will be able to handle the news well.

Seren is still not eating very much. They try to feed her a teaspoon of formula at each feeding and she is only taking about half that much. A team of feeding specialists (who knew that even existed?) will be in next week to determine goals for her eating and whether or not she needs to be tube fed long term or not.

Thats about it for today. Thank you to our church, The Church of the Good Shepherd, for putting Seren on their prayer list and also to everyone who has put us on your church's prayer lists. It means the world to us. The help and support of our wonderful family and friends is helping us get through each day.

First Day at UNC

2009-04-17T18:44:00.000-04:00

Today Lance and I went to UNC to see Seren's new digs and to meet with some of the medical team there. We were pleased with the environment and her nurses who had put her in a cute little cap. She was even unplugged from most of the monitors before we left so she got to have on her first clothes-a perfectly acceptable set of pale pink jammies!

We met with the ophthalmologist, the neonatologist and several fellows and residents in the NICU as well as the geneticist. Today Seren had an eye exam and an ultrasound on her sacral dimple and kidneys. We haven't received the full results of these exams but they seem to confirm the findings here in Raleigh. The geneticist didn't have great news for us but I did make him walk through which of her physical traits caused him concern from a genetic syndrome standpoint. They were actually a lot fewer than I thought he would say so that made me feel a bit better. The largest concern is her eyes which are also connected to the brain. Next week we will get an MRI of Seren's brain in order to determine if there are any malformations. We could use every prayer in the world that her brain is intact. This would remove a large hurdle for her and greatly improve her prognosis.

Transfer to UNC

2009-04-17T10:54:00.001-04:00

Yesterday was a very exciting day for us because the Neonatologist at Rex was going to try to let us spend some time with Seren in my room! I looked forward to it all day since it was going to let us be a normal family without nurses and wires connected to the baby when we looked at her. However, at four o'clock he came in with some bad news. Seren had a seizure lasting about one minute which added to the concerns about her health. Although we had previously thought her neurological function was normal, the seizure made him decide to do an ultrasound on her head. The preliminary results of the ultrasound showed some fluid around her cerebellum and an enlarged artery in her brain. We were worried about the seizures so since eight beds had to clear before we could get into Duke we decided to check and see if UNC had room for her. They were able to take her immediately.

Lance and I were able to go to the NICU and hold Seren for about an hour and a half before the transfer even though the nursery was technically closed. We really appreciated the nurses letting us have that time. The transfer team arrived and it was a little disconcerting to watch them do their evaluation before they left but we did feel she was in great hands, They loaded her in an isoloete attached to a stretcher (called Tar Heel One!) and took her to Chapel Hill. I left the hospital last night and we are going over there this afternoon to check in on her. My understanding is that the nurses can tell us each morning what tests are scheduled for the day and the Doctors will call us with results. Today she is scheduled for an MRI and then a 24 hour EEG to monitor her brain activity related to the seizures. The EEG is a 24 hour test so once she starts that test that will be all she does for 24 hours.

She is generally comfortable and sleeps well. They keep her warm and cozy in the NICU so I know she is looked after. I wish she was here with us, her family, but I know she is in the best hands possible right now.

Seren's Story

2009-04-17T10:38:00.000-04:00

On Monday, April 13, 2009, I went in for my 37 week checkup at my OB's office. She noticed that the heartrate was a little low and ordered a non-stress test. Although the baby's reactivity was ok the base heartrate was low so she sent me to the hospital triage to have the heartrate monitored for several hours. While I was in triage the heartrate remained low but steady, and, because I had slightly low fluid at a previous visit the Doctors ordered an ultrasound. The Ultrasound showed the fluid level was at a three and I was scheduled to have Seren by c-section three hours later.

Before Seren was born we knew her heart and kidneys had some abnormalities but nothing that was considered major. However, after she was born we found out that her corneas were opaque and at least one eye had an optic nerve that was dead. As of right now she has a u-shaped field of vision in one eye where the doctors believe she can see some shapes and light. We initially thought this would be Seren's biggest hurdle.

Seren has not been able to eat because she can't figure out how to suck. This isn't altogether uncommon in newborns but they need to figure it out eventually or this is a sign that their neurological function is impaired. She is currently being fed through her nose and receiving nutrition that way.

An eye exam by a pediatric opthomologist showed that Seren has a condition in her eyes called Peter's Anomoly. Seren's heart and kidneys are functioning well, however, they each have anomolies, that, combined with her eye condition lead Doctors to believe she has an overlying syndrome that would explain the presence of all of these medical conditions in one child. On April 16th Seren suffered a seizure that has raised a new set of concerns. We had her transferred to UNC where several tests are being run to determine a definitive diagnosis and plan of treatment.