2 Week Birthday!

It's been two weeks... whoa!

Karen and I were realizing today that it was 3 weeks ago that we came in to the hospital for the first time when we knew something was 'wrong'... it seems like it was so long ago because so much has happened since then.  It's been a very exciting, tiring, stressful, sad and happy two weeks!

Harper had a good day today... again.  She is very comfortable in her box and with exception of this leaky duct is a healthy happy baby.  Her chest tube is still draining despite the consistent upping of her med's dosage.  We still have some time, but let's hope that the duct starts to seal sooner than later.

A little piece of positive news... As I had mentioned earlier in my posts, there was an initially possibility that the hydrops was caused by chromosomal abnormalities.  Once she was born, the doctors ruled this out based on her appearance, so it was not a true concern of ours.  But, the test results finally came back today and did rule out any chromosomal cause.  This was relieving to Karen and I because that would play a role in future baby plans... but, no need to fret over that!

I'll give more updates as we get them.  =W=

Are you ready for some football?

First day of the 2012 season today!  I woke up at 6am to hang out with Harper for a little before I went up to school for practice.  I gave her a pep-talk and let her know that I was going be pretty busy for the next 3 months, but not too busy to spend some quality time with her. She was very understanding and didn't seem to mind when I left for Day 1 of two-a-days!
I went up to practice for the first hour this morning, but came back to talk with the doctors.  Her fluid output had increased since they adjusted her chest tube, which shows that she was still producing chyle and it was accumulating in her chest.  So, the volume of her formula got reduced significantly and the dosage of meds got bumped up this evening.  Once again, this is going to be a long game of trial and error until they find the right ratios that will help her heal.  The doctor also mentioned that he is going to talk with a cardiothoracic (ct) surgeon to see what the next step in treatment may be and also what options there may be down the road for surgery.  It sounds like that surgery is still an option that is weeks away, but is getting closer if she does not start to respond a little better soon.  Hopefully, the increased dosage of meds will get things moving back in the right direction.
I made it back to practice in time for our team meeting and on field afternoon practice.  It was nice getting out of the hospital and running around a little with the players - It was nice to lose myself in football and not think too much about everything that is going on back here.
This evening, we got to open up Harper's isolette (her box)!  It was nice to be able to lean down and kiss her on the forehead.  This was only our second chance to do that in the past two weeks.  We won't be able to hold her for a while longer, but this is the next best thing, right now.  Even Uncle Larry came by and got to spend some time with Harp!
So, we will see over the next couple days how she begins to respond to the new treatments.  Wish her luck!
Thanks to everyone for all of the love and support - Karen and I greatly appreciate it and we know that Harper does, too.  She is resting up now so that she can come cheer on the Hawks this Fall on Friday nights...
Are you ready for some football?  I know Harper is!  =W=

Sunday Funday... in the NICU

For those of you who have been following, I am sorry that I haven't posted in a few days.  The days have been going by so fast that the sun is down just a few moments after it came up.

Harper has been doing well this weekend and the doctor today is remaining positive about it all even though I haven't been as much as I was previously.  On Thursday and Friday, Harper's chest X-Ray showed accumulating fluid and very little was draining from her tube.  Friday night, they adjusted her chest tube a little and 81mLs  of fluid drained out followed by another 50 on Saturday.  This was good and bad...

Good:  Harper was much more comfortable when the fluid drained again.  Her breathing slowed and pulse/oxygen increased.  They reduced the flow on the nasal cannula and have kept it at 21% oxygen over the past day; which means she it is outputting room air and she is one step closer to getting most tape removed from her face!  As for the fluid itself, the other good things is that the volume that has been removed over the past 48hrs, even though high, is much less when calculated as a volume drained over 5+ days, which is essentially is.  This means that the feeding does not seem to be increasing the amount of chyle that is being produced, so she is closer to getting her IV's out, which decreases risk of infections. Yay!

Bad:  The chest tube needs to be readjusted today.  They are going to back it out a bit and then put it back in to try to get it in a better position.  With any movement of this chest tube, there is an increased risk of infection, but it needs to be done.  Also, they are going to have to take 2 or more X-rays in the process to make sure that it is in the correct place... those can't really be good to continually get each day.

Another bad, there is still fluid.  Even though the volume is less... it is still there.  So, it is just going to take time.  Much more time.  The doctor today seemed confident that the possibility of surgery was still a little ways off and was happy with the results thus far, but the possibility is still there and always in the back of our minds.

Overall... She is doing well.  She is comfortable and smiling more each day!  We haven't captured a picture of her smiling, yet, but it will be posted as soon as we get it!

On Friday, we got Harper's furniture all set up in her room at home, and with the help of family, got the yard straightened up a little and Harper's things organized.  Friday night was my first night not sleeping in the hospital since July 13th - I slept on the couch at home with Crew and Buckeye.  Karen stayed in Harper's room on the couch.  Last night, Saturday, was our first night home together and I think it was restful for the both of us.  It did feel weird coming home without Harper... Karen and I were home, but the house seemed empty despite the fact that Harper hasn't even been there, yet.  We missed her - we thought about her the whole time we were there - we can't wait to bring her home... but it was good for us to get home and finally get a little sleep.

=W=

Day 9 of Life

Harper did well with the food that was given to her yesterday.  Again, it was a special formula tailored to minimize the amount of chyle that she would produce by eating it and she only ate small amounts (5mL every 3 hrs).  Since she did so well yesterday with it, the doctors upped the volume to 10mL through today and plan on making it 15mL every 3 hrs starting at midnight!  This shows us that the drug is working to reduce the amount of chyle that she is producing and will hopefully give her body a little more of a chance to heal the leak.  I believe that this is going to be the plan for the next few days... gradually increase the amount of food and then eventually begin decreasing the amount of drug that she is getting.  The whole time just keeping an on eye on her output from her chest tube.
It's just a waiting game now, but everything seems to be going as planned.  Harper had a few other small effects from the loss of fluid, but those can be treated over time and she will be right on track.  I'll give more updates on those if the doctors see them as issues and begin to treat them.
Karen and I are about to go for a walk... maybe get some Menchies... then come back and settle in on the couch in Harp's room for the night!  It's going to be a lot of tossing and turning, but we'll get through it... :)
=W=

Yum Yum... Eat'em Up!!

Harper got formula today!  It is a special formula that is very low in long fat chains, but high in medium chains - the long chains produce more chyle when processed in the liver.  So... everything looks good so far and she has been a happy camper all day long!  I am sure that Harper is happy to finally have something in her little belly - being a Wilson, I know she was grumpy with her stomach being empty for so long!
We are looking forward to tomorrow morning's talk with the doctors to see how Day 1 of feeding went...
:)  =W=

1 Week! (yesterday)

Yesterday was a big milestone for us and a big birthday for Harper!  1 Week!! Can you believe it... next thing we know she will be going to her first day of school, then getting her driving license followed by college... whew how time flies!

As you can see, she was partying it up the whole day through!

More steps forward for Harper yesterday and upcoming today...

• She got the CPAP off yesterday, and is breathing well on her own.  She has small dips here and there, but overall she is much stronger than she was last Saturday when they took her off.  Doctors may put her back on just to keep her as comfortable as possible, but we will see.  The improvements that we see in her breathing since the weekend is very positive so we aren't too concerned if they have to put it back on.
• Harper is responding well to the medication that she has been receiving over the past 48 hours.  Her fluid output from her chest has decreased and her glucose levels have remained consistent.  So... I believe that they are going to try to feed her a little bit today!  This will be her first feeding so they are going to take it slow and see how she responds.  They need to make sure her stomach is ready for it and that the amount of fluid she produces does not increase.

We are very happy with everything we have seen over the past week.  We need to keep reminding ourselves that we need to evaluate Harper's progress week by week and not day by day... Since her birth day last Tuesday, Harper has come along very well and the mere fact that she is still here fighting each day is a true testament to her fortitude.  I am so proud of my 'Little Bird' and I know she will continue and her path to health.

=W=

Everything Happens for a Reason

1. The weekend that Karen's water broke (days before Harper's birth), we had made plans to go to a blues festival in Windsor with my parents for a final weekend away before baby came.  The Friday that we were supposed to leave, Karen was feeling a lot of pain/pressure and told me that she did not really feel up for the trip.  So, my parents went up on Friday without us and took their friends instead... Karen's water broke that night and we were admitted to the hospital later that Saturday.
2. During the pregnancy, Karen was measuring larger than normal her last couple of visits.  Her doctor ordered an ultrasound to take a look at the babe and get a more accurate measurement of the size.  The ultrasound was scheduled for Tuesday the 17th, but due to our early admittance we got one on Monday the 16th.  Having the doctors find the complication one day earlier and inducing could have made the difference in our situation now.
1. The natologist who was on call actually teaches recertification classes to other doctors about neonatal resuscitation...
2. The neonatal cardiologist had happened to be in the office for some random reason instead of being at her downtown location...
3. Karen's OB/GYN was on vacation for the previous week and made it back just in time...
3. Harper was 6 weeks early and measured in at 6.5lbs with a height of almost 20in.  If she had 6 more weeks to brew... Karen would not have been a happy camper.  :)

I truly believe that everything does happen for a reason...

Today is Harper's 1 week Birthday!  Pictures and updates will be posted later!!

=W=

Cat and Mouse

It looks like it is going be a long game of cat and mouse over the next few weeks as the doctors continue to diagnose the exact problems that are causing the fluid build up. The doctors want to be as 'conservative' as possible in their approach toward fixing this leaking chyle. Over the past week, they have sat back and simply monitored the amount of fluid that has been drained from Harper's chest and had hoped to see the amount significantly reduce. Unfortunately, this was not the case. Even though they did see some decrease, it was not enough for them to be confident that she would be able to heal herself without any other intervention. So, today they administered a drug that would restrict the amount of chyle that her body will produce. This will, hopefully, give the 'leak' a little alleviation and will give it a rest to heal. With consistent fluid draining, they do not feel like it will be able to heal and wanted to take this next step toward helping Harper along. Hopefully, there will be some response within 48 hours and we can start feeding her small amounts of formula and see how she responds to that. But, that is only going to happen based on how Harper responds to the small doses of meds they are giving her now. So, it is really a game of cat and mouse... Seeing how Harper responds and then making the next move from there to catch up with her body to help aid it in healing properly. They know the issue, but don't want to be too aggressive when it isn't necessary. For example, there are surgeries that could heal it, but the less invasive the better. They could give higher doses of the meds but that could come with larger risks involving her blood sugar and possible diabetes. So... Playing this slow game of cat and mouse is where we are now and will be over the next week or two... And we are just fine with that. We are so happy to still see her small improvements daily and to see Harper grow right before our eyes. She already looks stronger with more color in her skin and arm and leg movements. The nurses and doctors laugh because compared to the other preemies in the NICU, Harper is the size of a full term baby! Her legs hang out of her little snuggle bed and she is very aware as she opens her eyes and looks around her little incubator. We are very proud of her strength and have no doubt that she will continue to fight just as much as we have and as the doctors have. ... Every little thing gonna be all right. =W=

Day 5

Well... she (we) made it to day 5!  There have been so many positive steps over these past 5 days and we are more than happy about the progress that she had made.  But, there have also been a few minor setbacks and still many hurdles to overcome.
Updates:

• Saturday morning Harper was taken off of her C PAP, but was obviously uncomfortable with the new nose piece they gave her and she labored to breath for most of the day.  They put her back on the C PAP last night and she is much more comfortable now.
• Harper was very fussy last night - I suspect that she is very hungry after not eating for 5 days and is ready for some of Grandpa's Red Beans & Rice or Dad's Homemade Chicken Sausages...  :-)
• She is now off of the bili-light, which helped reduced the amount of bilirubin.  This is good for a few reasons.
• Harp is now able to be swaddled a little bit more.  She couldn't be covered up when she needed her phototherapy.  So now that she is swaddled, she is much happier.
• Also, she doesn't look like a fighter pilot anymore! (see picture to right)
• Karen got to hold Harper yesterday for nearly an hour!  This was truly a special moment because it was the first time she has had the chance to hold Harp and for Harp to be in the loving arms of her mom.  I know that they both needed that time and they got a lot out of the experience.  Hopefully, the doctors will feel confident that she can do it again soon or that dad might get a chance to hold her.
• Harp's chest tube on the left side is out... accidentally, but out none the less.  She got a chest X-ray this morning and the doctor said that it looks fine to be out and she is doing well.
• Harper will be given some special formula (very minimal in long fatty chains) tomorrow for the first time.  They will gradually introduce her to this and then slowly change over from the formula to Karen's milk.  Hopefully, the amount of fluid build up will not increase with her feeding (the fluid, chyle, comes from the break down of fats that are processed through the liver... so her eating could increase the amount of fluid).  We will keep our fingers and toes crossed tomorrow - hopefully she will be able to eat, be more comfortable and keep getting stronger with the new nutrition!

So... That's where we are now.  It seems like we are on the right track here... Karen and I know that she is in the best possible hands at the Clinic and are not concerned one bit about the care that she is given or the decisions that are being made.  We see that this is going to be a long process and patience is going to be the key.  Just knowing that we still have a fighting chance and that our current odds are vastly greater than they were 5 days ago is very reassuring.

Thanks again for all that our family and friends have done for us... we appreciate all of the love and support!  xo =W=

Three Little Birds

On Monday when Karen and I got the news about our future baby's situation, we went back to our room in complete shock. We didn't say much to one another while I wheeled her back and when we got to the room we just sat there for a few moments. Karen got up to go to the bathroom and I plugged my phone into the docking station and started Pandora radio on "Jack Johnson Radio". The first song that came on was Bob Marley's "Three Little Birds." "Don't worry bout a thing... Cause every little thing gonna be all right!" I immediately came to tears and got a smile on my face. When Karen came out of the bathroom I pointed out the song that was playing and told her that it was a sign. It cheered both of us up a little hearing that song in particular. During the next 16 hours of moving rooms, laboring and delivery we consistently had the same Pandora station on to help soothe Karen and lighten the mood. As the doctors finished with the initial resuscitation in the delivery room and stabilized her enough for us tohold her hand, "Three Little Birds" came on the radio again. "Don't worry bout a thing... Cause every little thing gonna be all right!" Karen and I were in shock that that song was played at those two times. At the moment, I jokingly said to Karen, "Let's namer her Bob!" The next day, Wednesday, I took my Dad in to the room to see Harper. He came in and noticed her information tag on the front of the incubator. He asked, "Was she born at 8:25?". I told him that she was and he then told me, "Those were your Grandpa's numbers. He used to play them every time he played the lottery... 8 - 2 - 5. You should name her Bob." My grandpa's name was Bob Wilson. I then told my Dad the story of the Bob Marley song from the previous day and that I had made the same joke about naming her Bob. I know my Grandpa was looking out for the three of us on Tuesday. Later in the day on Wednesday I started to tell my Mom and sister that story from the beginning... Starting with hearing "Three Little Birds" on Monday. As soon as I mentioned the song, my Mom started tearing up. She said, "That was the song that we played at your Uncle Kenny's funeral. It was his favorite song." This made the three of us just start crying. My family was certainly looking out for us. Uncle Kenny and Grandpa were looking down on us, and I am sure that Grandma was doing the same. So... That is why I now call Harper "Little Bird" and plan on getting a Bob Marley picture up in her nursery, which is 'music' themed! It all worked out and we're not gonna worry, cause every little thing gonna be all right. =W=

Getting you all caught up to speed...

July 20th, 2012 at 22:30

Thank you for those who have already read the information about Harper and how our newly renovated family started the week off.  Here are a couple updates of Harper's progress from the past couples of days...

Each day has gone really well and each morning and evening shows how much Harper is improving and battling the odds.  She is getting the point where the odds are on her side and we can all breath a little easier along with her.

Tuesday (her birth day) was miraculous within itself and we were all ecstatic that Harper fought her way through the traumatic delivery, resuscitation and small procedures to put her drainage tubes in. She was stable by that evening and we could all relax a little more.

Wednesday was a great day because throughout the day Harper's pulse/ox continued to strengthen, her skin color became more 'normal' (showed that she was well oxygenated), and they began to reduce the amount of work that the ventilator was doing.  The doctors reduced the pressure and pace of the ventilator and also the percentage of oxygen that it was outputting.  This was important because she needed to get closer to "air" in terms of oxygen before they could take it off of her.  By Wednesday evening Harper was breathing 21% oxygen (air) from the ventilator and was ready to get rid of it!

Also, the amount of fluid that Harper was expunging from her chest cavity was decreasing.  This was a good sign and showed that she might be healing internally already!

Harper had another great night on Wednesday and was breathing so well that the doctors took out her ventilator on Thursday morning!  She was weened to a C-pap, but we did get the chance to see her without anything on her face for the first time!  Karen and I could not have been happier to see her little face and have the chance to finally squish her cheeks!  During the day on Thursday and Friday, the doctors even reduced the pressure that the C-pap was exerting, which is just one more step toward her just breathing on her own completely.

As for the fluid, there is still a decrease with each interval that is checked.  This is looking good and the doctors said that it could be around a 80-90% chance that she does in fact heal herself.  Only time will tell and we are all staying confident that this Little Wilson will keep fighting and heal herself right up!

Friday was a fairly quiet day - but Karen and I got the chance to be a little more hands on with her.  We cleaned her face a little and her hair/head.  Karen got the change the first of many diapers that we will be changing.  And we continue to get to see her more often without anything on obstructing her cute little pumpkin face.

Karen and I get to stay in the NICU's family hospitality room until Monday.  Hopefully, a little longer than that, but we will be either in there or on the couch in Harper's room!

Thanks again to all of our family and friends for visiting, calling, texting, emailing and sending nothing but positive vibes our way.  I know that Harper is in great hands here, but the love that surrounds her is definitely having an impact and we appreciate all that you have done for us.

Preface

Thursday July 20th 16:48

I am going to start the blog off with an email that I had sent out to some family and friends the night Harper was born.  It will give some brief background information about Harper's situation, which will be helpful in understanding the posts that will follow from here.  Please read the information below and look forward to many updates from Karen and me in the upcoming days, weeks, months and even years about Harper's progress and miraculous story.  Thank you!

-----------

The following was written at 23:00hrs on Tuesday July 17th, which was the night of Harper's birth day!

Hey folks - 

Some of you have heard the news and others are in the dark.  This email is the easiest way for me to relay allof the information to everyone at once...

Let's start with the basics - 

IT'S A GIRL!  6 and half pounds with a 19 inch length.  She was born this morning (July 17th) and her name isHarper Cacique Wilson and she has a head full of hair, long fingers and toes and will be picking up a discus in no time.

Mom is doing great - Karen was a real trooper and did a great job!

Now... many of you remember that our due date was at the end of August, so Harper was born 6 weeks early.  She is technically a preemie and is currently in the NICU of the Cleveland Clinic.  Let me give you a full run down of how we go to this point.

Saturday, Karen's water broke and we were admitted to the hospital right away because it was so early.  We spent the weekend in the hospital trying delay labor with antibiotics, prep baby's premature lungs with steroids and make Karen as comfortable as possible.  We had an ultrasound scheduled for Monday to help give us a better idea of the size of the baby, which would give a better idea of when the doctors would induce.

Monday morning we went in for ultrasound and that is when they told us the news...

baby's body was filled with fluid around the lungs and possibly other areas.  There were many concerns with this situation.  1) Once delivered, the baby was going to only have a couple crucial minutes to drain the fluid and re-inflate the suppressed lungs.  2) If the lungs had been compromised for too long or earlier in their development, then the lungs would not have been strong enough to support baby even if they could have been re-inflated a little.  The condition is called 'Hydrops" and is generic for excess fluid in body cavities.  Hydrops very often results in death of the newborn because of complications that I mentioned above.  The doctors gave our baby a less than 50% chance to make it out of the delivery room (longer than 10 minutes after delivery).  They also informed us that possible causes for hydrops were Down's and Turner's syndrome along with some other chromosomal issues that we may have to deal with long term.

Obviously this news was very hard for not only Karen and me, but also our families that day.

Karen go induced Monday afternoon and labored all through the night.  She and I slept minimally through the night and as morning came we had prepared ourselves for the worst of what was to come.

At 8:25, she was born and was immediately passed of to a team of neonatologists who got to work on her.  Those critical minutes were upon us and we tried our best stay distracted while they worked only a few feet from us.  The minutes passed by before the head doctor said "Dad, come look at your daughter."  She looked pink, which was a great sign, and they kept working.  A minute or two later, I was allowed to hold her hand.  And a few minutes later they gave us the update that she survived those critical milestones... the fluid was mostly out and they inflated the lungs successfully.

They took her away to the NICU to continue working, but assured us that everything went 100x better than expected and baby was pulling through stronger than expected, as well.  They let us know that the possibility of those chromosomal issues were not the cause of the hydrops and baby was otherwise healthy!

SO... here we are now.  Harper is in the NICU - she has two chest tubes to keep the fluid from building up.  They found that chylothorax (fluid in the chest cavity) is being caused by a small duct that is leaking.  This can either seal itself up within a week or two, or they may have to perform a small surgery on Harper to seal it up.

After the night of horrific thoughts that we had last night, having our baby in the NICU with the cause of the problem discovered is THE BEST scenario that could have arose from the situation.  We are overly joyed that baby is doing so well and that the doctors are so optimistic about her recovery ahead.  We will be in the hospital with her during her stay; currently we are at Hillcrest, but may be moved to Main Campus if Harper's body does not seal the duct on it's own.  Only time will tell what the next step is to make her all better, but the fact that we are at the point where we can just wait to see her get better is just fine with us compared the alternative.

That's the rundown - sorry for the lengthy email, but like I said, there is a lot of information about the whole situation and I wanted to make it as clear as possible.  Below are the "Cliff's Notes" of the situation.  Thanks for reading.  Thanks for all of your support to Karen and me so far!!  We will keep you updated as we find out more and don't hesitate to call either one of us to check in.  Once again, sorry for the mass email, but it's a long story to tell so many times.  And after the long weekend and start to the week, this was easiest for me to keep you all informed and save me from retelling a tough story.

Thanks!  Hope everyone else is doing well.  We are all smiles here and are so positive about the uphill battle ahead of us here.

xo =W= and Karen and Harper  :-)