Dad's Getting Old

Well our great plan to get out and do something fun backfired today. We went snowboarding and on the "one more run before we go," Dad tweaked his ankle. He missed seeing Grace today since he was on the couch with a bag of ice on his grapefruit sized ankle all evening.
Mom reports that Gracie had another great day. Hanging out this weekend getting used to less oxygen and apparently doing just fine. I can't wait to see her tomorrow.

Nasal Cannula

Our little superstar is doing a fantastic job on nasal cannula. She is tolerating the decrease in ventilatory support extremely well. She gets a sleep study next week, so let us hope that all goes well. We will let her cruise over the weekend and study up for her big test.
Deb and I had a great night out tonight with our friends the Parkers. I think I have mentioned that their little daughter Hope has a heart condition, so we had lots to talk about with a couple in similar circumstances. I think it was good therapy for all of us.
We were all in general agreement though: Life is messy, but love comes from the most unexpected and wonderful places. Yup, that's what we have learned. Why does it take so long to learn that?

Cute as a Button

Big Day Tomorrow

Tomorrow we are taking Grace off vapotherm and she will go on nasal cannula at 1 liter. This is a huge step toward going home. We are going to let her get used to that over the weekend, and next week she will get a second chance at the sleep study. We really want her to do well with the sleep study, because if she does she has a better chance of coming home without a trach.
Gracie gets cuter everyday. When I arrived today she was sitting on Deb's lap facing out and making faces at me. Deb pulls her up gently by her arms and works on her neck strength while she is sitting there. Grace probably wishes we would just let her alone sometimes!

ROP

Grace's eye exam showed some mild retinopathy of prematurity yesterday (ROP). So far no treatment required, but if it gets worse some laser-therapy may be required. We will have a new exam next week.
It was a late visit tonight for me since I had to go home after work and clear the driveway of snow. I don't know what the official count was, but it has to be at least a foot deep. Unfortunately the snow blower didn't start so I wasted an hour taking it apart and cleaning it before I was able to tackle the driveway. Once that chore was done, it was time to see Gracie. Deb and I are both thankful for four-wheel drive!

Correction

Oops. I got her weight wrong in Sunday's post. Actually Grace is only 9 lbs. Still, that is pretty good considering we started at the bantam weight of just over 2lbs.
As the snow comes down in Indianapolis, I am pleased to report that Grace had a nice day. She tolerates the decreased oxygen flow and her new feeds pretty well. She was kind enough to wait until Deb and left the room before she spit up all over her clean outfit. That's the second night in a row that she has decided to upchuck her chow while I am there. Apparently she tolerated all her other feeds today just fine. Hmmm. I make my daughter sick already. I thought that wasn't supposed to happen until the teen years.

Happy Dad

Here's a recent picture of me and the little one. She is sleeping hard in this one.

Moving in the Right Direction

We turned down the flow on Grace's oxygen today. She is now down to 2 liters (from 3). If we can get her to 1L than she can go back to standard nasal cannula and is one step closer to home. She seems to be tolerating it okay. We can't help but feel that we went too fast from vapotherm to nasal cannula last time which set her up for failure on the sleep study. We hope to repeat it in about a week, and hopefully she will do better.
Food seems not to be a big issue. She has gone up to 70cc of milk every 3 hours and is now back to what is know as "dump" feeds. This just means she is off the pump and gravity just dumps it down her NG into her growing belly. She is 1 ounce shy of 10 pounds today.
In other big news, Deb worked a half day today. I think it was good for her to have a change of pace. She still managed to spend a big chunk of the day with Gracie though.

Sunday Morning

It's early Sunday and Deb and I were trying to get out the door and drive to the local ski hill for a couple of runs on the snowboards. Unfortunately we can't seem to get ourselves in order and since it is rather a long drive we have decided to postpone until next weekend. We think it will be good for us to have a small change of pace and do something fun. If anyone wants to meet us next weekend at Perfect North outside of Cincinnati, please let us know.
So instead, it looks like we will try and catch up on some of the Oscar candidates and traipse round Babies-R-Us registering for stuff Grace might need. Baby showers for Deb are being planned! I have a feeling this is going to be eye-opening for me.
Grace had a great day yesterday. She was awake for visitors for most of the day and is gradually becoming more interactive. Grace, like us, is having a nice quiet weekend. Yesterday was Deb's birthday. Thank you all for the calls, cards, flowers, gifts and well wishes. Even Grace gave mommy a gift. A plaster cast of her hands. The kid's artistic already.

No Reflux

Deb's friend Monica visited today. She has been a regular visitor and very supportive of Deb and Grace. She must have brought good luck today because the unofficial results of Grace's cystogram showed that her bladder reflux had resolved. Now we can stop the prophylactic antibiotics. Nice to have her off another medicine. Love moving in the right direction.
We had a nice afternoon with Grace today. She talked Dad into giving her a bath - usually Mom does that so I am sure Grace is less clean than usual. She really was pretty tolerant of the whole thing. While our little smidgen was on her belly she pushed up and lifted the whole front of her body off the bed. That's the first time we have seen her do that. She is definitely getting stronger and bigger everyday. She weighed 8lbs 11 oz today.
No big changes this weekend. Just cruising until we can repeat her sleep study.

Cystoureterogram

I am always nervous when Grace has more tests. We are always worried that we will get more bad news. Tomorrow she get a study of her bladder and ureters. You may recall from an earlier post that she has some ureteral reflux where the valves at the junction of the ureters and bladders are not preventing the urine from flowing the wrong way. Because of this she is on antibiotics to decrease the risk of a kidney infection. Urine is only supposed to flow one way ya know. Tomorrow they will evaluate this a little further.
We also had the definitive word (for now) about Grace's omphalocele. The surgeons are not planning on fixing it until she is about one year of age. That is not a problem for us. Clothes will be hard to fit for a while, but I imagine the repair will be easier both for her and the surgeons when she is bigger.
Deb and I are starting to get checked off on skills that we will need to take Grace home. I placed her nasogastric tube tonight. We both have to do it twice. Deb has done it already, so we both have one down. Grace is not big on the idea, however, and was p****d off about the whole thing. It is nice to hear her give a big strong cry sometimes. Very life affirming.

Physical Therapy

Grace started physical therapy today. Not sure exactly how they get her to cooperate, but I am sure it will help stimulate her and work on getting strong. She had a good day today, with lots of visitors. Grace was also a little gassy today, although I an not supposed to broadcast that. She is now over 8lbs. Today was supposed to be the day of her delivery by c-section and she is now 38 weeks of gestation. Her actual due date is February 4th. Our hope by then is that she will be getting close to being ready to fly.
Here are recent pictures of Grace (by special request) with Deb and Grace with her Grandma Ellen.

About Grace

Deb was kind enough to point out that the last post didn't have much to say about Grace. I pointed out that Grace told me she was mostly interested in wishing the Obama's success over the next four years. However, Deb is right, this blog is to update everyone on Grace's progress, not to provide me with an unwilling audience for my thoughts on the state of the world.
Grace is starting to act more and more like a real baby. Deb says that she actually made an attempt at sucking her thumb yesterday. While I was giving her her evening meal yesterday she also took a pacifier and contentedly sucked away. This is a big step, because if she doesn't develop the sucking reflex she won't be able to feed without her tube. Go Grace.

Dear Mr. Obama

Dear Mr. Obama,
On the eve of your inauguration, Deb, Grace and I wish you the best of luck with your upcoming tenure as president. You have the historical honor of being the first african-american man to become president and the opportunity to be one of the most influential presidents in recent history. It is a position that very few of us would trade with you.
The burden you have to carry is huge. We see so very little positive about the world you have inherited. This country is in dire economic straits and while not in an economic depression is certainly in a psychological one. Your job over the next four year is to lift our wallets, restore our world reputation and rescusitate our collective spirit.
You have the opportunity to do many things. This might be the time to solve the healthcare crisis. While few of us feel that a single-payer system is the answer, it does seem strange in a country this great that adequate health care is not available to all. Obviously all of this would come with a cost. Although I maintain that those of us fortunate to have healthcare available are already paying indirectly for those that don't through higher premiums, deductibles and co-pays. Let's face it, the insurance companies are doing fine.
Repair our name in the world. If we wish to spread democracy, we can best do so by setting an example of what a great democracy can do for its citizens and the citizens of the world. Countries can not have democracy forced upon them, it must come from a sincere desire from within. People need a reason to change. Seeing how well we live and the freedoms we have will be reason enough. Let's show the world how great we can be.
Restoring our economy. That's a tough one. You can't win on this one. At some point a market has to realign itself to its proper level. Fiscal stimulus will help, but the economy has told us it is trying to correct. Businesses that made bad decisions need to fail or we just delay the inevitable. Doing so though is political suicide. However, an overly aggressive stimulus package will lead to increase in the national debt and ultimately rampant inflation. You will be blamed for that too.
Mr. Obama, we do not envy you your task, but we do wish you luck. You have already achieved so much and we hope that you will achieve much more. Our sincere best to you and your family.
Regards,
Tim, Deborah & Grace Williams

Sunday Visits

Grace was thrilled to see her Grandma Ellen and aunt Elizabeth last night. She spent Sunday evening cozied up in Grandma's arms. I think it is a toss up as to who enjoyed it more. To my eyes, Grace's breathing seems a little better each day. I hope I am not imagining things.

Checking the Mirror

We bought Gracie a mirror last week. It is attached to the side of her crib and she can fix her hair in it, check her make-up or just make funny faces. She seems to do mostly the funny faces thing. It also has a little speaker in it and you can hook up an mp3 player and play music for her. We have been playing a little classical. Supposed to build up her brain. Not sure that rap or heavy metal is a good idea so we will save that for when she is a little older.
My aunt Sheila and cousin Susan came to Indy to visit Grace yesterday. She was thrilled to see them and even woke up for a while to visit. Grace has been known to sleep through most things. Deb's mom and sister will probably come up from Cincinnati tomorrow. They are in for a shock when they see how much Grace has grown. She has put on almost 3 pounds since their last visit.

The NICU

I keep meaning to write about the NICU. It is kind of a strange place if you are not familiar with intensive care units. (Not many people are). At some level there is always drama and death, but for those who work there it can become very routine. That I think is the strange part. I sense though that most of the people who care for the infants are deeply affected by the loss of a child. They are also pleased when a child goes home, but often miss the child once he or she has left. In short, it is a place of deep caring under very difficult circumstances.
Grace has been there longer than any of the babies in our module so we, and in particular Deb, have become fixtures in module 5. We know many of the nurses and respiratory therapists well by now, and they know us well. We have become friends with many of them and all of them have been so kind to us and so generous of their time and care. We always feel that Grace is well taken care of and we cannot say "thank you" often enough. We feel lucky that Grace landed where she did.

Miss Grace Was Badly Behaved Today

Well -- not really. In actuality she was the darling little angel that she always is. However, she did have a sleep study today. This is where she is hooked up to an EEG monitor and multiple other monitors and we see how many episodes of apnea she has in 3 hours. She did not do very well and had multiple instances of obstructive apnea. This means that she can't hold her airway open very well and tends to desaturate a lot. It certainly means she won't be ready to go home for a while. She was put back on the vapotherm to rest her a little and help keep her airway open with higher pressure air flow. She gets to try again in a few weeks.
She was also evaluated by ENT. They agreed with the plan to watch her, but if it does not resolve at some point, then they would recommend a tracheostomy. Deb and I are not thrilled about this idea, but hopefully it won't be necessary.
She also had an eye exam to day which showed some early signs of retinopathy of prematurity. Nothing that need treated at this point, but she needs to go back to weekly checks now.
Finally, she had a spinal ultrasound to evaluate her for spina-bifida since she has a dimple on her butt (sorry). No spina bifida, but she might have a tethered spinal cord which can be a problem later. They want to get an MRI of the spine when they MRI her head to confirm this. A tethered cord often needs to be released later in life to avoid neurological deficits. Yup, another surgery. Rough day.

Big Steps Today

Grace was switched to nasal cannula today. This is a much lower level of support than she previously had. Until today she was on vapor therm which is heated air at a high rate of at least 4 liters per minute. Now she is on standard air of 1L/min. She could potentially go home on a rate this low. Very exciting. She will need a sleep study first that will determine what level of support she needs and whether she has apneic episodes.
So far today she did well. She had one big episode where she quit breathing (scary) but rebounded from it with only a little assistance and was stable the rest of the day.

Seven Pounds!

Grace tops the scales today at over seven pounds and it is still 3 weeks until her official due date. Deb broke out into a cold sweat when she heard those numbers. Grace almost certainly would have been about 8 or 9 pounds had she gone to term! She is looking perfectly pudgy to us and more adorable each day. I will try and post some new pictures.
I had a long talk with an anesthesiologist friend of mind today. He and his wife have a little girl with heart problems and have been dealing with much of the same struggles that we have. They have been doing it for a lot longer though and have some excellent insights into how to cope. Deb and I plan to take their advice and try to maintain balance in our lives.

Care Conference

We had our care conference today. Basically a meeting with the developmental pediatrician, social work, and the neonatologist. I can't say there was much new information. Basically no one knows what her ultimate outcome will be. We can expect development of whatever CP signs that she might have at about the 6 month to 1 year age range. The good news is that there is plenty of care available for her and she will have physical therapy and so forth with the First Start program. She will probably go home in mid-February. We also may try some attempts at oral feeds next week. That's all the new info for now. She is still filling out nicely and looking more like a baby is supposed to every day. She actually weighs 6 lbs, 13oz. Pretty good for a preemie.

Hangin' With Mom

The results of Grace's head ultrasound was unchanged today, so she has not developed any hydrocephalus. That will probably be the last head ultrasound for a while, although she should get an MRI in a week or two to assess things further.
A kidney ultrasound was done today. We will have the results tomorrow. Also tomorrow we will have a "care conference" to talk about Grace's future needs etc. Kind of exciting to think about her coming home in a few weeks. A little scary too.

Getting Bigger

Growth is the order for the day as Grace continues to go up on the amount of feeding. She now has chubby little cheeks and looks more and more like a real baby. She will have her last head ultrasound today and hopefully won't need any more. Next week she may get a head MRI to assess the extent of the PVL. Other good news is that she may be weaned off her seizure medication over the next few weeks. All in all, a good day.

Sunday Visits

Sunday proved once again to be the day for visitors. This time my Mom and Step-Dad (thanks for the picture Dave!) drove over from Ohio for a nice visit with us and with Grace. Grace was on super behavior today. She woke up for the visit and was alert and down right chatty for a while before settling in to a nap in Grandma's arms. We have lots of video and pictures from today's visit so I will process that in the next few days. Now that she is off CPAP we can actually take pictures that show her face!
We do have some bad news though. My mother says that Grace looks a lot like I did when I was a baby. This of course is tragic news, since no one should have to look like I do. We are hoping they find a cure soon.

I Lied

Okay, I lied. It will not be two days until the next post. See what happens when we say we are going on cruise control. Grace throws us a curve. With it being the new year, we have a new attending in the NICU, and he has decided that Grace is ready for a trial without CPAP. Now, we are realistic and know that she might fail, but she has been off all afternoon and was doing well at last report. The little girl just has to learn to breathe on her own. We will keep you posted.

In the meantime, Israel continues to bomb Gaza and the Palestinians continue to lob poorly aimed rockets (ineffectually) into Israel. The Israelis can never be said to be soft about protecting their interests, but when are they going to learn that such all out aggression is bound create further extremism in the Arab/Palestinian world. On the flip side, when are the Palestinians going to learn that you can't tweak Israel and expect them to roll over and play dead.
Slightly north of all that, Russia and the Ukraine quibble over payments for natural gas and the supply to Europe is threatened. Russia is undoubtedly feeling the pinch of the drop in oil and gas prices and the worsening global economy. Putin has stayed in power thanks to a new Russian affluence that threatens to disappear as quickly as communism. Now he will have to do something to keep attention off the bad news. Hmmm, wonder what he will do? A war might do the trick.
2009 is off to an ominous start.

All is Quiet on New Years Day...

Grace had a lovely day today. She seems stronger each day, and we have definitely moved into cruising mode. It is all about weight gain (no problem there) and improvement in lung function (slow but sure). So we play the waiting game for now. Since there has been so little to report lately, I will probably go to every other day on updates. Of course if there is big news I will update earlier, but if you wanted to be notified of new updates, then subscribe to the feed on the right. That or I have to start writing about politics, economics, or something equally boring. Hmmm, what about healthcare reform? I guess we will stick to updates on Grace.