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.