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.