Happy New Year!

Deb and I reflected on 2008 tonight. We can't say it has been the easiest year ever, but we are thrilled that at the end of the year we have a darling daughter in our lives. As usual we can never truly predict or direct where life will end up, and that has been so true this year.
We sincerely hope that 2009 will bring great things to you all and to Grace. Happy New Year!

No Change

The good news today is that there is no increase in the size of Grace's ventricles. That makes us happy since we want to avoid a shunt if we can. Her eye test yesterday was also normal. Lots of good news.
Grace wore a cute little outfit from her Aunt Sheila today. I was busy at work, but got to the hospital in time for her 8 p.m. feed and to change a disgustingly poopy diaper. Is it okay to say "poopy" if you are a grown man?

Chunky Munky!

Our little Grace is packing on the ounces. She now weighs close to five and 3/4 pounds. Wow! That surprised me. She is starting to look much more like a baby and even has some baby fat and some chubby little legs. She is almost within a month of her due date now, so she is doing what she is supposed too. No other big changes today. The all important Tuesday head ultrasound is tomorrow. Always makes me nervous.

Beckwith-Wiedemann Syndrome

We think it is possible that Grace has a condition known as Beckwith-Wiedemann Syndrome (BWS). It is a genetic condition that primarily involves overgrowth of several organs in infants. Not all children have all of the possible signs of BWS, but some of the most important ones include: omphalocele, macroglossia (large tongue), hypoglycemia (low blood sugar), high birth weight, Nevus flaemmus (stork bite), and ear pits/creases.
Grace does have quite a few of these, specifically the large tongue, omphalocele, high birth weight, "stork bites" and possibly ear pits and creases (although Deb and I disagree on the last two). Obviously kids can have these finding separately without having BWS. For example, millions of kids have the stork bites on the eyelids and forehead without having BWS. But taken all together, having 3 or more of these signs means a likely diagnosis of BWS.
For the most part, diagnosing Grace with BWS does not really change very much. Her care will be exactly the same, and we still have the same issues to help her with. Probably the potential for CP may be more of a hurdle than BWS, particularly since most children with BWS grow up to be perfectly normal adults. (Sorry about all the acronyms - get tired of typing it all out!)
There is one area, however, that is concerning regarding BWS. Children with BWS have a 1 in 5 risk of developing some childhood cancers. Usually a tumor of the kidney known as a Wilm's tumor is the culprit. Caught early, this tumor has a 94% cure rate, but curing it involves surgery and chemotherapy. For this reason, BWS kids are screened every 3 months with an ultrasound and blood work for tumor markers. Most of these tumors occur before age four. Screening is recommended up to age eight to catch the rare late occurrence.
If you are curious about BWS, there are some good websites that provide much better information than I can. Try here or here, or just "Google it."

From our standpoint, this doesn't make much difference to Grace's outcome or any difference to her place in our hearts. She will receive excellent care, she is loved beyond belief, and we have a wonderful support system in you all.

Loot!

It looks as if Grace robbed a bank or something. I can't believe the swag she has hauled in for Christmas this year. What a generous and thoughtful bunch you all are! We are truly blessed.
We are pleased to say that she also had another great day today. She just seems to be more stable and drops her oxygen saturation a lot less. The pressure on the CPAP that they are using is slowly being reduced, so hopefully we can start some trials without it next week. That is at least our plan. The docs may have other ideas.
We also may have a possible diagnosis for Grace, other than prematurity. I will talk more about that tomorrow. Have a great night, and if you are in the Indianapolis area, try and stay dry. What a weird weather pattern we are having with temps in the sixties in December.

Just a quick note tonight I am in Ohio visiting my family and Deb is caring for Gracie. She had a lovely day and was in Deb's arms for the entire day. When I stopped by this morning she was bright eyed and bushy tailed and ready for a chat. Grace has had comments and calls today from places as different as Dublin and Houston. Big catch up post tomorrow when I get back in town. It's hard to do this from my phone. Love technology!

Merry Christmas

Grace hanging out with Mom on Christmas Day 2008.

Grace had a great day with lots of gifts from generous family and friends. Thank you all. She is without a doubt the best dressed baby in the NICU. Today she models her elf outfit and is beyond adorable.
Deb and I wish you all love and best wishes for Christmas and health, wealth and joy for the New Year.

Grace with the CPAP off for a second for a Christmas picture and looking a little squished, slobbery and slightly annoyed, but still adorable.

Santa's Coming!

Grace is so excited she can hardly stand it. I am sure she will not sleep a wink tonight as she waits for Mr. Claus to shimmy down the chimney at Riley Children's Hospital. Her very first Christmas and she has more gifts than any little girl deserves. Of course she has been good all year. Admittedly she has only had to behave herself for 7 weeks, but we think she still belongs on the"nice" list. She can't wait to open all the lovely gifts she has been sent. Thank you all for your generosity.
On the home front, Mac our Newfie is taking a more possessive attitude to Christmas. He has decided the Christmas Tree is part of his territory and has marked it accordingly. That's a new one on us. We have got to get that boy neutered!
Deb and I are looking forward to spending Christmas morning with Gracie and then spending the next few days with our families. One of us will always be in town to take care of our little Christmas smidgen.
This weekend I hope to have time enough to do a detailed updated on Grace's progress. Suffice it to say, that for today her head ultrasound showed no increase in ventricle size. A blessing enough for Christmas.
Wishing you all safe travels to wherever you may be going for the holidays. And whatever your religious persuasion, Deb, Grace, Mac and I wish you a joyful holiday season, and of course, "peace on earth and goodwill towards men."

Big Girl Bed

Hopefully everyone stayed dry and warm tonight and out of the ice storm we had in Indiana. We of course braved the weather and went down to see Grace. Tonight we got to bathe and hold her and then help transfer her out of the isolette and into a crib. Yup, Grace is in a big girl bed for Christmas. We are excited that she no longer needs the isolette since can now keep herself warm and regulate her own body temperature. She was curled up on my chest this evening and I could really feel her cranking out the heat, so that doesn't seem to be a problem.
She had a head ultrasound today. We await the results tomorrow.

CPAP is a Drag

All I can say is that CPAP looks uncomfortable. For those of you who haven't seen it, it is a small mask that is strapped to your nose with head gear. It then forces air under pressure down your nose. As if that is not enough, in order to give the delicate skin around her nose a rest, they sometimes switch to a double prong that fills each nostril and forces air up the nose that way. I suppose it is better than the alternative, but I hope she needs it for only a few days.
In case you missed it, today is Grace's seven week birthday. That puts her at about 33 weeks gestation. Every day puts us closer to home. We are just trying to get her bigger and stronger. She now weighs 2280 grams (about 4 1/2 pounds) and has doubled in weight. She is in danger of outgrowing one of the Christmas outfits we bought her. Will have to get new ones next year!

Small Step Back

It is never a good sign when the phone rings at 11:30 p.m. Grace was being a bad girl and not maintaining her oxygen saturation last night so they put her on CPAP. This is a rather uncomfortable looking little mask that goes over her nose and forces air under pressure to her lungs. It is helping her saturation a lot and will rest her and allow her to catch up a little. Breathing was tiring for her lately. Hopefully she will need this only a few days.
Sunday again turned out to be visitor day with a visit from my brother, Grace's Uncle, all the way from Budapest Hungary. She truly has fans far and wide!

Bath Day!

Deb and I gave Gracie a bath today. Deb has done this before so she was a pro and walked this rookie through it. Judging by the grimaces on Gracie's little face I need some practice. We soaped her down and toweled her off and slicked back her hair. Yup, it's long enough - just. Changed her into one of her many outfits (blue this time, not pink), and put her down for a nap.
Today was a nice down day for all of us and we finally had a chance to get ourselves in the Christmas spirit after a crazy week. We are looking forward to reconnecting with family and friends this week and enjoying the holiday season with you all.

Freaky Friday!

Wow! What a crazy day. None of you stayed home as I asked and my clinic was full of fractures this morning. Yet another late day, but I did get out in time to see Grace. Unfortunately our care meeting did not come off as planned so we will have to find another time for that. Grace was sleeping when I arrivedand took none too kindly to being woken, but she did look charming and adorable in her little pink outfit. Every outfit seems to be pink for some reason. Grace has had gifts galore. People are even leaving gift bags on our front door knob. Super crazy and super appreciated. Grace is spoiled already and she is only 6 weeks old. She takes the attention in stride, and I don't think it is going to her head at all - she's very humble.
Grandma Ellen and Aunt Elizabeth stopped up today for a visit. Hopefully Gracie woke enough to let herself be held. I am looking forward to spending some quality time with Grace this weekend myself.
Christmas has snuck up on the Williams family this year and it looks as if the Christmas cards won't make it out the door on time. We would like to thank all of you that have remembered us this Christmas season, and want to you know that we think of you all often, and appreciate all your best wishes. Please don't scratch us off your Christmas lists for next year. We will have our act in better shape next holiday season and will get our cards out on time. Thanks so much for understanding, and Merry Christmas and Happy Holidays to all.

Missed My Little One Today

For only the second day since she had been born, I missed seeing my little Grace today. I am on call tonight, and we have been having terrible weather so the slip and fall injuries have been piling up. I didn't get home until 9:30 and was just too whipped to go in. Deb on the other had has yet to miss a day and spent some nice quality time with her daugher, so Grace is far from neglected. Grace met with neurosurgery today who are not worried about hydrocephalus - yet. They will follow her with serial ultrasounds as planned.
Tomorrow we are trying to schedule a "care conference" to get a fix on what Grace's long-term needs will be. It is nice to be thinking of after NICU needs. Pleasantly optimistic. Hopefully we will not have to cancel due to my work schedule. So if you live in the South Indianapolis area, do me a favor and stay home tonight and save yourself a broken hip or wrist. Grace and I thank you. Good Night, and be safe.

Status Quo

Once again we have settled into a routine with Grace. She is on autopilot for now and is not making huge steps in either direction. Her lung status is unchanged. She is still sensitive to movement and discomfort and can desaturate surprisingly quickly. Fortunately she is gaining weight and checks in at a whopping 2 kilos (about 4.4 lbs) today. Periods of alertness are becoming more common and she is even harder to leave when she pops open her eyes to look around and waves her little arms in the air.
We have just hired a contractor to come in and cut our bedroom in half to make a nursery and guest room for visiting grandmothers. They will start in January and it should take about a week - yeah right. As long as it is ready for Grace to come home, we will be happy.

Economy is Down; Grace is Up

The Fed lowered the interest rate yet again today in an attempt to jump start the economy. I have been doing a little reading on economic theory (yes, I am a geek), and apparently I have advised you incorrectly in a previous post. Instead of saving money this Christmas, we should apparently spend like sailors on shore leave. Spending stimulates the economy and creates growth. When we all stop spending, the economy tanks. It is really a self-fulfilling prophecy. The more afraid we are about a bad economy, the less we spend. The less we spend, the worse the economy gets. Simple really.

Grace is a big fan of economics. She thinks that we have to be careful or we will rebound into an inflationary period after this recession if we are not careful. That could be bad. What is good with Grace today is that her eyes have been checked and have passed with flying colors. On today's exam, there were no signs of ROP (retinopathy of prematurity). She will get checked again in two weeks. This week's head ultrasound showed some slight increase in size of one ventricle. Neurosurgery is planning on just watching it for now, but we are hoping she will not develop hydrocephalus and need a shunt. No real improvement on the lungs today. She is on 4L of oxygen and they tried to wean down to 3. Grace was not having it and insisted on stay at 4. We will try again in a few days and see if we can convince her that less is more. Hmmm, sounds like the economy.

Making Faces

I hung out with Grace after work tonight. Changed my first poopy diaper -- thank goodness she is only little. She slept in my arms for a while, and then woke up and made faces at me. That or she had gas.
Ultrasound tomorrow.

Working Hard

Grace is still breathing on her own today, but is pretty tired. She is sleeping more and the docs think she might need a little assistance. They may consider putting her on CPAP which is a mask that forces air into her lungs without having to intubate her. Not very fun, it would be like having a vacuum cleaner strapped to your head. We will see how she does overnight.
No pictures of the Christmas outfit today. Grace wasn't in the mood. We will try again tomorrow. Wishing you all a great week. Get your Christmas shopping done. Though in this economy, perhaps it is best if we focus on spending time with loved ones rather than spending money. Gifts are quickly forgotten, but memories can last a lifetime. I'm sure somebody said that before, but I don't know who. Probably saw it in a Hallmark card!

One Day and Counting

Grace has made it a full 24
hours off the ventilator. It is so much easier to pick her up and hold her, and that is exactly what Deb and I did today. She snuggles up to her scruffy Dad and her pretty Mom without too much complaint, although she tires easily from breathing hard. She gets breathing treatments every few hours and is still on a lot of oxygen via nasal cannula.





It is amazing how greedy we get. Now that she is off the vent, I want her off the cannula. Patience, patience, never my strong point. Check out the Santa hat in the picture of Grace and Deb and stay tuned for Grace's Christmas outfit tomorrow. Yup, I actually went shopping for preemie Chrismas clothes today. I know, don't ya just wanna puke!?

Mondays and Fridays

Mondays and Fridays seem to be big days for Grace, and today was no exception. Today they took Grace off the ventilator. Deb and I were both there to watch and amazingly she did well! This is such a huge step for her and we just hope her lungs are strong enough that she can stay off. As of the writing of this blog she had been off about 7 hours and is doing well.
Finally she looks like a baby. I have a short video attached. She looks a little shell-shocked by the whole experience, but this is as awake and interactive as we have ever seen her. Grace is opening her eyes and peering around and taking an interest in her surroundings. She is easier to hold and change and now she no longer needs a heater since she can maintain her own body temperature. She is also sucking a pacifier when she is hungry. No crying yet, but she has sneezed at us. We will let you know how she does tonight. Hopefully at the next posting she will still be off the vent.

Gift from Santa

Grace had a visit from Santa today. I'm not sure she was buying the whole beard thing. She told me she is suspicious that he might not be the real Santa. Nothing gets by Grace. Anyway, she got a gift that she was happy to accept despite her reservations as to his authenticity. She also came out of the isolette to be held by Dad AND Mom tonight. So we are home very late and very tired and I will have to post the pictures and video of that event tomorrow. Incidentally they might try her off the vent tomorrow, so stay tuned. Nervous!

Grace's New Clothes

Grace wore her first outfit today. No more nakedness! This lovely number is in pink cotton with green frogs. Grace looks stylish with matching hat and mittens and is ready for every NICU occasion.

Other than looking stylish, Grace is making great progress. The unofficial read on the head ultrasound is "no change." That's good. Her ventilator settings improve daily and she is back to full feeds after her surgery. There is also some talk of extubating her by the end of the week! We're not holding our breath (so to speak) on that one, but it would be great to see her face without tape and hear her cry. I will live to regret that sentence.

Deb has been shopping now that Grace is allowed to wear jammies. Stay tuned for a whole new set of glamour shots by the end of the week. Deb also got to hold Grace for a couple of hours today. For some reason she was not made to take off her shirt and do a "kangaroo" cuddle like I did last week. I was a little suspicious about that whole situation to begin with. Now I am certain it was some kind of conspiracy. I will be calling Oliver Stone to make a movie on it.

Big Changes

They told us that everyday would be a surprise and they weren't kidding. Today the NICU decided to take Grace off the jet ventilator and see if she would tolerate a standard ventilator. As of this evening she was doing very well. She seems a little less touchy on the regular ventilator, so perhaps she was just tired of the jet and ready to move on.
She had a very busy day today. She had an eye test to check for retinal damage (common in preemies). Fortunately that was okay, but they will check her again next week. She also had a head ultrasound today. We won't have that report until tomorrow, but we are still concerned about how her bleed has progressed.
In the meantime it does seem a little quieter in her isolette. The whap whap whap of the jet is gone and Grace seems one step closer to home.

5 Weeks!

Okay, so the Monday title is getting predictable. But that's a good thing. Little Miss Grace slumbers peacefully on today on her 5 week anniversary. Getting back to "normal" on her tube feeds and continuing to grow. She gets another head ultrasound tomorrow. Cross your fingers that her ventricles stay small and petite. There is some talk about trying her on a regular ventilator instead of the jet this week. She is 31 weeks gestationally, so her lungs should be far more developed and perhaps able to tolerate a regular ventilator. The docs feel she may have gotten all the benefit she can from the jet and it is time to move on.

Sunday is for Visiting

A nice quiet Sunday today. Grace had some visitors. Deb's Mom and sister came up for their weekly visit. Grace just hung out quietly. Not much improvement today, but no backtracking either. Maybe a little better on the vent settings, but not much. Deb hung out with Grace today and I took Mac (our poor neglected Newfie) for a walk in the snow and put up a few Christmas decorations. Nothing like a cheap plastic Santa over the front door to welcome in the season. Put up some lighted garland as well. Plugged it in and ... nothing. It's going to take me forever to find that darn bulb.

Snug as a Bug...

Deb and I just got home from visiting with Grace. She was curled up on her belly as snug as a bug in a rug. She looked very comfortable and we are hoping for a good night. She is making some progress on the ventilator but it is slow.
This evening we stopped by the Community East Hospital Surgery Department Christmas party. It was nice to finally meet some of the people that Deb works with. I know it is a repeating theme for this blog, but we are still overwhelmed by the love and support from everyone. It definitely showed tonight.
We didn't stay long, we made sure to get back to visit Grace before it got too late. I guess we have been a little one dimensional lately. As soon as Grace is more stable I hope we will be able to relax a little and have some fun with family and friends again. Until then our focus remains on Grace.

Status Post

Grace has had quite a day today. Status post is the term used to indicate that someone has now had an operation. Grace is now status post ligation of a ductus arteriosus. Before I fill you in on the details, Deb and I want to thank all the well-wishers who called, e-mailed, commented and texted today. It was so appreciated and helped calm our nerves today to know we had tons of support.

The day started with a bang. Deb arrived to see a gaggle of staff gathered around Grace's bed all wide-eyed like deer in the headlights. Never a good sign. Our little angel had managed to pull her ET (ventilator) tube. It was back in by the time Deb arrived, but it gave her a good scare. Grace seemed none the worse for wear, and was in fact doing a little better. There was a benefit though. The old tube was too small for her since it had been placed a month ago when she was much smaller. This was a great opportunity to place a larger one.

The actual surgery started much later than planned. Anyone who has worked in an OR will find that no surprise. Because Grace is still on the'jet' ventilator, she can't travel to the OR so they brought it to her. A whole team including anesthesiologist, scrub techs and RN's showed up to perform the surgery. They closed the module down and made everyone leave. Everything took a just a couple of hours, although it seemed much longer. According to the surgeon, everything went very well. Specifically, they made a small incision between the ribs towards her back. He then looked in and found the vessel and looped a suture around it and ligated it. She seemed to tolerate it well. They will start to wean her down on the ventilator tonight and maintain her blood pressure. She is likely to have some physiologic adjustments to her new circulatory system. We are optimistic that she will achieve a new equilibrium within the next day or two. It is nice to have one problem checked off the list. Feels as if we are making real progress. More tomorrow.

Doing Fine

Grace came through the procedure with flying colors. So far she is tolerating everything well. The next 48 hours will be telling. Will update later tonight.

It's Started

It's started. All we can do is wait at this point. They need a new line and possibly an a-line. Hopefully it will go well.

Twas the Night Before...

Grace seems to know that something is up and she has been on her best behavior today. She has improved on her vent today and been a little more stable. Last night she was all over the place. We are psyched and ready to go for tomorrow afternoon. Thank you all for all your love, thoughts and prayers. We are deeply touched. We will update after the procedure tomorrow evening. BTW, is that not the cutest little foot you have ever seen! (Question mark omitted intentionally).

Surgery Date

We have a date and time for Grace's surgery. She will be getting her PDA closed on Friday afternoon. Apparently the procedure doesn't take very long and will be performed in the NICU. We pray that she will shine. She has had a good day today, but is still fighting to maintain her oxygen saturation. I guess that tells us that it is about time to get this done. According to our neonatologist, babies have a "honeymoon" period for about 8-12 hours after PDA closure in which they do really well. After that they may have some issues with ventilation and making the adjustment before they recover. We are hoping to make Deb's Christmas Party on Saturday with Community East Surgery. (A special "shout out to ya'll" since apparently this blog posts on the jumbotron out there almost daily." Hopefully she will be doing well enough that we can attend worry-free.

We did have some sad news today. Apparently Makenna, the baby we told you about last week, passed yesterday in St. Louis. Our condolences and prayers go out to her family. It hits so very close to home for us, and we share in their pain and sorrow.

PDA

No that doesn't stand for "public display of affection". Although it used to in my day.
It looks like the next hurdle will definitely be the PDA. This is of course Grace's first surgery and we are nervous. Crazy nervous. Not sure when it will happen. We got the impression it would be in the next day or two, but our nurse tonight thought it would be next week. I am starting to understand some of the frustration my patients feel when they deal with the medical professions. You can never talk to a doctor, you usually get some sugar-coated pablum instead of the truth, and in reality nobody knows the answer anyway. I always find it difficult when my patients ask me percentages, but we are dying to know what her chances are at this point. Maybe they should just make something up. That would at least shut me up.
Grace herself is a wild child. While we were sitting with her this evening she whipped her head around and disconnected the vent. She kicks, grabs, twists and does everything but a back flip. That's my girl!

Four Weeks!

It's official, Grace is now 4 weeks old. She now weighs 3 lbs, 13 oz and looks much healthier. The head ultrasound shows no significant change in ventricle size. Her cardiac echo still shows the PDA. She is a little "touchy" on the vent, meaning that she tends to decrease her oxygen saturation easily if moved or irritated. This may be due to the PDA, and we suspect that they may want to clip it this week. They are trying fluid restriction to hope that it will close on its own, but it looks as if it may not happen. We should know more tomorrow, but neither Deb nor I are excited about Grace undergoing her first operation.
Sorry for the editorial yesterday. I am off my soapbox now and back to talking about the subject of this blog, Grace.

Sunday

Grace is tucked in for the night and a quiet weekend draws to a close. Tomorrow she will be one month old. We will see what the week brings since she has a barrage of new tests tomorrow. More updates to follow.

Off topic, I have been reflecting about the senseless loss of life in Mumbai, India over the last week. One thing Grace's struggle has taught us is how precious and tenuous life is. Every victim of the Mumbai attacks (as well a their killers), were once tiny infants like Grace and surely were loved by their parents and families. Their lives were infinitely valuable. I find it so hard to believe that any religious person (whether Christian, Muslim, or Hindu) can truly believe that taking the life of another will further their cause, advance their religion in the eyes of the world, or somehow lead them to salvation. It is a sad comment on the state of tolerance in the world today and how little value we place on life.

On Track

The results of Grace's head ultrasound were revealed to us today. No significant changes. We consider that a positive result. We would be concerned by increasing fluid build up in the ventricles in the brain, but although they are larger than they should be, the have not increased since the last one. We have another ultrasound Monday to check again.
Not much progress on the ventilator. She does well, but we are not moving very quickly on changes. Part of that is due to the holiday weekend, part of that is planned. She will get a cardiac echo on Monday to see how the PDA is doing since it might be affecting her ability to wean from the ventilator. At some point it will need to be closed.
Finally, they stopped giving her nutrition by her IV today and she is now completely reliant on breast milk via tube feeds for her calories. She is tolerating them beautifully and seems to be plumping out a little. I will try and get more pictures tomorrow.

Chowing Down!

Grace had another quiet day today. We really like quiet days. Yet another increase in her tube feeds today. We are now chowing down on 16 cc every 3 hours. She's a long way from porking out yet, but we are happy to see her put on a little weight. She had a head ultrasound today and we expect the results tomorrow. Fingers crossed.

Grace had a neighbor named Makenna for the first couple of weeks in the NICU. Makenna has been transferred to St. Louis for additional care and we have heard that that she is having a difficult time. We got to know Makenna and her family and they are kind caring people deserving of your thoughts and prayers. Please join us in extending our sincerest wishes and heartfelt prayers to Makenna and her family for a speedy recovery.

Happy Thanksgiving

Hope everyone ate well today. Grace did. Her feeds are up to 12 oz every 3 hours. She had a nice quiet day. Mom spent the day with her while I ran home to visit my family, and then we tagged and I spent the evening with her while Deb ran home to her family. Funny the things you have to do.

First Family Photo!

Here it is, the first photo of the Williams family to date. When we arrived for our evening visit, the nurse that was on asked us if we wanted to hold her. Deb was sweet enough to let me hold her for almost two hours. I was thrilled and nervous, but Grace seemed to settle down against her Dad's chest without too much complaint.
They made me snuggle her next to my skin which meant I had to change into a gown with a room full of nurses present. A tad embarrassing since they all seemed to be young and pretty for some reason tonight. My minor discomfort was more than made up for by the opportunity to keep Grace warm close to my chest and to feel her wriggle and kick. And no, I am NOT breastfeeding, although I forgive you for being confused.
See how this rollercoasters goes? Such highs and lows in the space of less than 24 hours.
Wishing you all a happy Thanksgiving. Remember to be thankful for those loved ones around you as we are thankful for you and all your love, generosity, friendship and unwavering support.

Tube Feeds

I'm looking for a more positive note today. Grace has been tolerating her feeds so they are going to increase the amount. It will now be 3cc every few hours in a bolus dose. This should help her grow and gain strength for whatever comes next. We have spoken with the cardiologist, the neonatologist and neurosurgery today, and seen her ultrasound ourselves.

Basically if the ventricles in her brain fill too much with fluid (hydrocephalus) then they will need to be drained. How they are drained will depend on how she is doing. An indwelling reservoir would be preferred, but if she is not strong enough to go to the OR for that, then serial taps of the fluid are an option. Let's hope it is not necessary. Regardless, the chances of her developing CP are extremely high, but to what degree is unknown. You can read on your own on CP. I am too drained to go into too much detail. Suffice it to say that there is no way to predict the severity at this time. We just will have to wait - until she is one or two.

We have neglected her heart lately. Unfortunately the ductus arteriosus is still open. This is the embryological vessel between the aorta and the pulmonary vein that is supposed to close at birth. See prior posts for a better description. She tolerates it well, but at some point it will have to be closed surgically. At the moment she is not strong enough to go to the OR so they have decided to hold off until either she is stronger or the PDA shows signs of becoming a problem.

Everyday Grace gets bigger, stronger and prettier. We become more exhausted, stressed and drained than we ever thought possible, but gain our fortitude to continue from Grace and the love of friends and family.

Three Weeks!

Grace is 3 weeks old today. Hard to believe how much she has changed and grown. Unfortunately, this little celebration lands on the day that she gets her head ultrasound and we always seem to get bad news. It is no different today.
While her ventricles are a little bigger and might be a problem, the most concerning new finding is damage to the white matter in the brain. This is known as PVL (peri-ventricular leukomalacia) and is very strongly associated with cerebral palsy (CP). It does not bode well for Grace's long-term outcome. To put it mildly, we are heartbroken for her. She can't seem to catch a break. Every complication that can happen has happened and her prognosis for a functional outcome dwindles with each new piece of bad news. I try to find a positive note in these posts, but today it is just beyond me.

Sunday

Grace had more visitors on Sunday. My cousin and her husband drove down from Chicago to meet her. It was great to be able to spend some time with them.
Deb has a little scare when she arrived on Sunday. Apparently Grace had turned her head and partially dislodged her breathing tube. Fortunately it only came out partially and it was repositioned promptly with no harm done.

Larger Than Life

Here is a larger than life photo I took of Grace's hand last night. Remember that her fingers just barely wrap around my pinky. She continues to get taller and I think she is now putting on some weight.
She has done okay today. Back and forth on the vent settings, but that is not too uncommon. She is still happiest when she is on her tummy with Deb's hand on her back.
She had a little blood in her urine today. Not sure what that is all about. Possibly a urinary tract infection. The docs are looking in to it. Check back for updates.

Baby's First Poo

Yup, you read that correctly. Grace filled her diaper today for the first time. We are very excited because that means she is tolerating the tube feeds and her bowels are functioning. I am also excited because I wasn't there and didn't have to clean it up. Yessss!

Deb's Big Day!

I have to admit, I am extremely jealous. While I was working today Deb got to hold little Grace for about and hour and a half. Deb just glowed to describe it and we have a picture or two below to prove it. (Can you see her glowing?) Deb couldn't believe how small and fragile she felt. Grace enjoyed the visit with Mom too, of that I am certain.
Apparently the isolette (box she sleeps in) was having trouble maintaining its heat settings, so while they exchanged it for a new one, Deb got to hold our little munchkin. I am told it will be my turn next time. Everything else goes as usual, nothing to do but watch and wait. She is tolerating the feeding well and they will increase it after 5 days. She is putting on a little weight, and getting longer. Small daily changes to the respirator seem to be tolerated well.

Yummy

It looks as if Grace is tolerating her tube feeds okay. She is getting them at a very low rate at this point, but we are glad to see her getting some real food into her stomach instead of nutrition by vein. I guess at this point it is in addition to the nutrition by IV, but you get the gist.
An abdominal ultrasound showed an increase in her kidney size, probably duet to vesico-ureteral reflux. This is a condition where urine flows from the bladder back up to the kidney due to a faulty valve at the junction of the bladder and the ureter. This can resolve on its own, but for now (as with everything), we are watching it.
Grace seems to be growing. She is quite tall (long?) and lean and looks so different from two weeks ago. Deb and I think she looks even cuter than ever and I will try and get some new pictures tomorrow.

Food, Wonderful Food

Grace started taking tube feeds today. This is a huge step for her and will help her gain weight and strength. Hopefully she will tolerate them. Deb and I will keep you posted.

Two Weeks Old!!!

Grace is two weeks old today. Yaaay. She had a quiet birthday, her only activity was a head ultrasound to check on the bleed. The docs think that some of her "feistiness" might have been some seizures, so she was started on phenobarbital. Hopefully that will help. The preliminary on the ultrasound shows some slight increase in the size of the ventricles (we have also seen a slight increase in head circumference), but no increase in the size of the clot. Regardless, there is little to do but watch and wait.

Family

Grace, Deb and I were blessed today with visits from family. Deb's Mom and Sister came this evening, and my Mum, Grandmother, Sister and her two sons came this afternoon. Grace's great-grandmother got to see her 7th great grandchild today and must have sat next to her for an hour. Deb and I loved having you there today, and I know Grace did too. Below is a picture of Margie, my grandmother sitting next to little Grace.

Shhh...

Just got back from visiting the little squirt. She was sleeping quietly tonight, all curled up on her belly. Normally she thrashes around like a wrestler. No significant changes. The docs are not going to make many vent changes at this point. We will give her rest for a few days. Monday will be the big day for the head ultrasound. Hopefully she will have more brains than her Dad -- holy smokes, that's me!

Feisty

If you know Deb or me well, you will find it no surprise that the nurses are describing Grace as "feisty." Basically she will not do as she is told and pulls at her tubes, turns her head and kicks like a mule. Personally we love to see her active and rambunctious and are encouraging her bad behavior. She has apparently fallen close to the tree.
We are way behind on returning e-mails and thank you cards, so please forgive us. Deb is at Grace's bedside for most of the day and by the time she gets home is just exhausted. We are still thrilled everyday with all the love and support Grace receives from the most unexpected places. Thank you.
Here are a couple of recent pics. The top is from Monday and the bottom is from this evening. She is a blonde like her Daddy!

A Quiet Day

I can't tell you how glad I am to report that I have nothing to report! All in all Grace had a good day today. She has been a little terror for the nurses so they have taken her off her back and flipped her onto her stomach. Doing this maneuver required creating an elaborate contraption of foam with a hole cut out for her omphalocele. Take that Martha Stewart. She seems comfortable in it, but was still kicking her feet and still had a good grip on my finger when I visited today. The plan is to just keep her comfortable on the vent for now and, as long as she is stable, we may be able to feed her. Repeat head ultrasound will be performed on Monday. For now nothing changes.

Deb and I are doing our best to find the silver lining inthe current situation. The obvious blessing that has struck us most is the tidal wave of love, good wishes, and prayers that have been sent Grace's way from our families, friends, neighbors and coworkers. Heck, even my patients have chimed in. Please know that although we haven't been able to respond to all the gracious e-mails, card, flowers and gift baskets, this little family feels the strength of your love and support coming in to us and it lifts us high above the depths of despair. A most sincere "thank you" to you all. We couldn't do it without you.

It Keeps Getting Harder ...

Around every corner lurks a new problem. Today we found out that Grace had an intracranial bleed. A pretty good sized one from the sounds of it, although we haven't spoken to the neurosurgeons yet. Like so many things that Grace has to deal with, there really isn't much to be done other than watch her and treat her symptomatically. It is strange that it seems like we can do so much in medicine but in reality we can do hardly anything at all. We won't know what the bleed means for Grace in the long term either. We can only hope that she doesn't have significant developmental or physical delays because of this, although with the size of this bleed they are the rule not the exception. Regardless, there is nothing we can do to change anything, just pray that the bleed doesn't get worse. We have so many things to overcome before we can even deal with things like the future. It just seems as if it will never stop.

Her pulmonary status is unchanged. Still very sensitive and tenuous, but nothing out of the ordinary for someone with all her issues. On the bright side, we may be able to feed her in a few days, though we are learning not to count on anything at this point. In fact, all we seem to be able to count on is bad news.

It is still amazing to me how a little wrinkled pink kicking baby can reach into your chest with the tiniest perfect hand I have ever seen and give your heart such a squeeze after only a few days of life. Everytime we get further bad news I feel that little hand will pull my heart right out of my chest. I keep wondering how much she, we can take. Grace seems to be stronger than I am because it's enough to reduce this grown man to tears.

One Week Old. Yaaay!

Today is little Grace's one week anniversary of her birth. She has improved a little from last night now that she is on the "jet". The other good news is that her white count is coming down, a sign that the infection may be clearing. We are assuming it is in the lungs. That is all the news for today. Up top is a picture of Grace at one week blowing a kiss to her admirers. And below being a drama queen -- let's hope that doesn't last.

Half a Step Back

Looks like our jubilation about getting Grace onto the regular ventilator may have been premature. She was working too hard at maintaining her oxygen levels and not breathing out enough carbon dioxide so they have switched her to a ventilator called the "jet". This ominously named device is supposed to provide a little more pressure so that her lungs will ventilate better, but should be gentle enough to not damage her developing lungs.
I guess this is just part of the roller coaster ride and we remain encouraged at her overall improvement so far. It is hard not to get swallowed up in the whirlpool of little problems. Each little change in her numbers seems potentially catastrophic to us. Plus, we know just enough to be really dangerous. In reality, if we take a step back and see where we have come in less than a week, then she really has made substantial progress. We just have to get used to the idea that it may be months before she comes home and she has many mountains to climb. A slip or two is to be expected.

Holding Hands

Grace squeezing Dad's thumb. Yup, she actually has a decent grip for 5 days old. The shades are not her trying to be cool. They protect her eyes from the UV lamp. Not much news so far today. Her white cell count, which is an indicator of infection, is going up. Cultures have been sent and the antibiotics have been changed. Hopefully that will help since she does not have a developed immune system at this time. By the way, you can click on any picture to view or download a full-sized version.

A Good Day

We had a good day today. Grace made significant progress as they weaned down the ventilator. There is even some talk of switching her to a standard ventilator instead of the high speed oscillator she is now on. She is now off one of the two "pressors" that keep her blood pressure up and is weaning down the second. The new cardiac echo showed a decrease in size of the PDA and they are going to give her medication to hopefully close it completely. As an extra bonus, her genetic testing came back normal. It is nice to have some movement in the right direction. We are very aware that she is likely to experience setbacks, but we take delight in each improvement that leads toward a healthy outcome and brings Grace one day close to coming home.

Two Steps Forward...

My Dad sent me a new quote today. He feels that "Born unto trouble" is too dark for the new light in our life and that perhaps we are tempting her to live up to it. Turning to poetry he found a line from a poet named James Fenton: "I was born to a kiss and a smile."
I agree. That is a much nicer quote for our Grace. I don't think I will rename the blog, but will try and work it in somewhere to reflect the more upbeat mood. Thanks Dad.
Grace herself is doing well today. She has decreased her oxygen requirement to as low as 30% at times. That is basically equivalent to room air. Mess with her though and she angrily drops her oxygen sats and so she more commonly sits at 40% or so. Much improved from two days ago and we are pleased to consider it two steps forward.
Our one step back comes in the form of a cardiac echo done yesterday that shows a patent ductus arteriosus (PDA). The ductus arteriosus is not a line from a Harry Potter movie, it is a vessel that links the pulmonary artery to the aorta while the baby is in the womb. It shunts most of the blood away from the lungs during development since Mom supplies all the oxygen to the fetus in the womb. It is supposed to seal itself off after birth, but commonly in preemies it fails to close. It is a fixable problem and may seal itself either with or without medication. Worst case scenario is that Grace would have to have it sealed for her through surgery. We get a repeat echo tomorrow to see if there are any changes.
Deb is doing well. Thrilled to be home and out of the hospital. As we all know, they don't let you get much rest in the hospital. She spent a good part of the day though at Grace's bedside watching her kick and seeing her flutter her eyelids. Thanks again for the continued love and support.

Hard to Watch...

I can't begin to describe the swirl of emotions that Deb and I feel when we look at little Grace as she struggles to begin her life. Sometimes we are so sure she will make it that all doubts are swept from our minds. At times it seems impossible that this tiny speck that looks like a cross between a chicken wing and a space alien (sorry, she does) could possibly survive the trauma of being dragged into this cold unfriendly world. She only had time for one pathetic little "mew" as the cold air hit her wrinkled red little body before she was swept into a warming bed and plastic inserted into every opening she has. How much longer will it be before we can clutch that tiny body with those perfect little fingers and toes into our arms?
Deb had a brief moment to hold her today as the nurse changed the blankets around her. For just a few moments Mom was so close to being able to gather Grace up and snuggle her. While she suffers the ignominy of the tubes, the rapid-fire violation of the vent, receives blood and nutrition by vein, we wipe her poor little dry mouth with saline and feel like parents.

First 24 Hours

Little Grace continues to hang in there after a difficult first day. She is still on a special ventilator and still needs medication to keep her blood pressure up. We remain optimistic and your love and support has been welcome and appreciated. Hopefully they will let Deb come home today. She has been at Gracie's side for hours and I know she is ready to come home.
The picture above is Grace holding her mom's hand. It is so difficult to see her with all the tubes and iv's attached. Going to have to get used to that.

Elizabeth Grace Williams is Here!!!

So much for holding out for 32 weeks. Elizabeth Grace Williams made her self known today at 4:48 a.m. via emergent c-section after Deb started having signs of infection. Deb is doing well and up and about only hours after having surgery with absolutely no whining. She's a tough one. "Grace" as we are calling her is now intubated in the neonatal intensive care unit and holding her own. She was 2 lbs, 13 oz at birth. Her poor little lungs are undeveloped and will need the assistance of a ventilator for several weeks to come. "Born unto trouble" she is. Fortunately Grace is in the caring hands of the nurses and neonatologists at Riley Children's Hospital and looks to be there for some time to come. Mom should be coming home on Wednesday, but is recouping for now at IU Medical Center. Your love support, phone calls, prayers and best wishes are always appreciated as Grace starts her little life the hard way. Some early pictures are below.

Week 26!

We are thrilled to report that we have made 26 weeks. Twenty-six and a half to be precise. Deb and the little one are resting comfortably and really appreciate all your calls, e-mails, and flowers. She has been at Indiana University Med Center for over 10 days now. Deb is still on bed rest, but has some occasional wheelchair privileges. We took advantage of the new freedom to arrange a visit with our dog Mac in the parking garage of the hospital. Deb was covered with hair and slobber when we were done but was thrilled to see her pup.
The plan is continued bed rest until 32 weeks if the little one can make it that long. Keep your fingers crossed. I will update again next week.

Sunday, October 26th

I am pleased to report that baby girl williams is still nestled comfortably where she belongs. No delivery yet and we are trying to keep it that way. Deb has made it 48 hours which has allowed her to get two crucial doses of steriods to help with lung development should the little one be born early. The baby has been happy on the monitor and Deb is not having any contractions so the docs are comfortable taking her off 24 hour monitoring for now and just monitoring her intermittently. Hopefully we are settling into a long period of waiting and her worst enemy will be boredom. Should things change I will let you all know.

25 Weeks -- More Trouble

Just a quick update. We ran into a problem this morning, Deb's water broke. I apologize if I haven't called anyone, we have just had a crazy day running from the doc's to the hospital. Deb has been admitted, and mother and baby-to-be are fine for the moment. Unfortunately she is to be on bedrest for the duration of the pregnancy. Our sincerest hope is that she is on bed rest for a long time! This baby needs a few more weeks in the oven to get a nice set of functioning lungs. So far we are stable and baby and mom are in no immediate danger. I will update tomorrow as we get more news. Thanks again for all your love and support.

24 Weeks

We are now at 24 weeks and just had our second set of ultrasounds and the news is good. We had a repeat cardiac echo which showed no visible cardiac defects. This is excellent news since it decreases the chances that a genetic defect is present. We also has another set of diagnostic ultrasounds that measured overall growth. I am glad to report that all gestational goals are on target. She measured 24 weeks at 24 weeks and weighs in at 1lb, 6oz. Yet another positive sign.
Also, we now have a delivery date. We are scheduled for delivery by c-section at 9:30 a.m. on the 21st of January.
I have attached 3 ultrasound videos below. She is hiding a little so you can't see her face very well. The last one is a nice shot of a foot (squint a little and all will become clear). I will post some pictures later this weekend, so check back. Thanks again for all your love and support.
Tim & Deb

20 Weeks

We are now at 20 weeks. Deb is feeling well, although I think she is understandably nervous. Today we visited with a pediatric cardiologist for a fetal echocardiogram, the high-risk OB, and a pediatric general surgeon. So far everything is good news. The heart looks normal so far. Growth appears to be on target with no obvious abnormalities. All in all, very promising that the only abnormality is the omphalocele.
For your viewing pleasure, we have a short 3D ultrasound of the little one's face. She is hiding behind her arms a lot, but you can catch a glimpse every now and then. We have some regular ultrasound footage too, and pictures that I will post later. Thanks for checking in!

August 23 Pics

As promise, here are a few shots from the most recent ultrasound in August. The omphalocele is visible in the top profile to the right of the picture. The second is a head profile and the bottom is a hand (I think).

Second Ultrasound (August 23, 2008)

It was a tense couple of weeks waiting for the second set of ultrasounds and the consultation with the maternal-fetal medicine doc. Essentially she confirmed what we had learned from our OB friends and other sources. Omphaloceles are associated with genetic defects about 40% of the time. That means 60% of the time they are not if you are one of those glass half full folks.

The second ultrasound was revealing. All growth rates were on track for 16weeks - a good sign. No obvious signs of genetic defects, although this is by no means conclusive. The omphalocele contains part of the liver, also a good sign in favor of this being an isolated defect and not genetic.

The next step is consultation with a pediatric cardiologist, a cardiac echo, and a repeat ultrasound. We will also need a pediatric surgeon for the c-section and for the later repair of the omphalocele sometime in the first year of life.
Next ultrasound is 8/19. Keep your fingers crossed.

I will upload images from the ultrasound soon!

First Ultrasound (August 08, 2008)

This was our first diagnostic ultrasound and the discovery of the omphalocele. A very bittersweet moment since to see a moving baby yet know that everything was not what we had hoped. In true geek fashion, our iphones were whipped out and we searched to find out exactly what we were dealing with. In short - too early to tell.
The top two views show the baby in a full-body profile. The bottom one is a cross section through the chest showing the arms outstretched.
The omphalocele is not visible.

Welcome

This humble little blog is for family and friends to track the progress of our little bundle of joy. I have called this blog "Born Unto Trouble" after a quote from Job 5:7 that my father continually reminds me of during challenging times.

"Man is born unto trouble as the sparks fly upwards."

-Job 5:7

Appropriate I thought, since our little one is struggling to grow into a little human and thanks to the unsuspected diagnosis of an omphalocele is likely to start out life with a little trouble of her own.
Yes, we think its a girl!
Stay tuned for updates. We should know more information and publish every few weeks. Subscribe to the RSS for easier updating.