Finally Home

On Monday we were told that Harper was doing so well that we should be able to come home on Saturday.  Karen and I were so excited to hear the news and began making a long list of things we needed to do in preparation for her homecoming.  We did not let anyone know initially because we still were not certain and did not want to get any hopes up.  Tuesday morning, Karen went to see Harper in the morning and I went to school to teach the first band of the day.  After that, I went to the hospital to check in and the nurse said, "well, plans have changed a little... Harper is going to get all her tests done today so that she can go home tomorrow!"  I truly could not believe it and it did not sink in that she was going to finally come home!

Karen and I took our list of things we wanted to get done and consolidated it into what we could get done before the next day!  Obviously, the list shortened and we still had a lot to do.  I got my coverage and lessons done for the rest of the week, went shopping for final pieces that we needed for her care at home, we made doctor's appts for the upcoming days and also check-ups for a couple months from now, etc.  It was a busy 24 hours from when we got the news 'til the next day when we finally walked out of the hospital with her, but it was worth all the hustling and it was worth all of the stress of the past 8 1/2 weeks...

Thank you to our distant friends and family from out of town who have been so supportive with phone calls, emails and letters.  Your thoughts and prayers have certainly made their way to Cleveland and have touched all three of us.  Thank you to our friends and family who are in town; your support, overall kindness, help with the dogs and other house chores, dinner distractions and frequent visits were not merely 'helpful', but completely necessary to our survival over these months.  Thank you all from the bottom of our hearts... we cannot thank you all enough nor can we find enough ways to repay you.

Please look back to the blog from time to time and I will continue to post pictures and updates about Harper!  Just looking back at her pictures from a couple of months ago are strange to see - she has already grown up so much and is a completely new baby now that she is all healed up!

Thank you again.  We love you all.  xoxo =W=, =K= & =H=

Home Today!!

Details later... :-)

Back "Home"

Sorry for the lack of updates...
All is going well and we are back at Hillcrest now, which is like being back at Harper's first home.  We are very grateful for the care we got down at Main Campus and appreciate all of the hard work by the nurses, doctors and staff...  they all did a great job during the 5 weeks we were there.  But, despite their great work, the Main Campus of The Clinic is just a hard place to enjoy.  The parking situation was a pain, the drive down there (in the opposite direction of work) was a drag, the 4 babies to a 'small' room was uncomfortable and the fact we had to leave the room any time the doctors/nurses had to talk about another baby in the room was very inconvenient.  All of those are out of the control of the nurses, doctors and staff members, so we don't hold our unpleasant against them but rather against the situation that the facility created.
So... having said that, we are very happy to be back at Hillcrest!

Harper is doing great!  She needs to get up to full feeds and we should be able to bring her home.  Harper takes a full bottle every here and there with a half bottle in between.  But, last night they said that she took a fully bottle each feed!  So, we will see how today goes and tomorrow and hopefully get a better idea of when we can get her home!

We are very happy with all of the big steps forward she is taking and can't wait to be back in the comfort of our home, which I feel we haven't gotten to be in for more than an hour during the daylight in the past 8 weeks.

Wish us luck with the feedings... this is our last hurdle and hopefully can take it in stride as we push toward the finish line!  =W=

Back to the Palace...

I talked with the doctors this morning about taking Harper back to Hillcrest.  The one doctor called Hillcrest Hospital a "palace" compared to main campus, which is fairly accurate.  Private rooms, more space, up-to-date... we are looking forward to the possibly move.  Also, close to work and free parking!
The doctors want Harper to stay for at least one more day and have a clear x-ray before they let her go from the care of the cardiothoracic specialist.  So - hopefully, everything will look good tomorrow and we can move her back.
As for coming home, we need to get Harper taking a full feed of milk by mouth and then we will be good to go!  Once again, we hope that she will be on milk by this weekend and be strong enough to take a full feed by next week or after that.  We understand that it will probably be longer than that, as we have seen most of this experience has taken longer than we have expected, but we are staying optimistic.  We see a small light at the end of the tunnel, but are still unsure of how far away that light is... but at least we know it's there!  :)

Big Steps

Sorry I have not posted anything since Thursday... Life has been a little hectic lately!  I was at school all day on Friday trying to catch up/get ahead, then coached Friday night (Go Hawks... 2-0 on the season, so far), worked the garlic stand bright and early on Saturday and tried to catch up on some Harper time the rest of the day (with a small break for the Buckeyes).

So... here is an update on Harper...
* Thursday she had her 'permanent' line put in for the supplemental nutrition she needs from lack of feeding.  The procedure went well and the doctor only needed to put in a small incision in her chest, not in her neck like we thought.
* Friday was a great day because she got extubated!  Harper's levels were all great and they were confident she was ready to be on her own.  Since the ventilator went away on Friday, she has been doing excellent with no set-backs.
* Friday night, feeds were started up again.  The volume she has been receiving has been increasing  and she is now over 50% full feeds.  When she reached 50% they were going to clamp her chest tube and then monitor for another day before taking it out...
* BUT... they took an x-ray of her this morning and it showed that the chest tube had already slipped out of her and was hidden behind the dressing!  So, they took it off, put a new dressing over the hole and didn't bother putting a new one in.  She is doing great and is showing no signs of fluid build-up in her chest cavity!


* Since the chest tube is out she can now wear clothes!  Also, they took her out of her plastic box and she is now in a 'crib' that we can take her out of any time and hold her!  It is nice having less restrictions on when and how we can hold Harper!

We are so excited to see everything going in the right direction.  We are hoping that Harper will keep tolerating her feeds and increasing in volume so that she can get off of the 'supplemental' fluids all together and then begin working on adding in some of Karen's milk for her.  The milk will be the true test because it contains all of the fats and contribute to the production of the fluid.  But, as of right now, the doctors think that as long as she tolerates the formula well at full, then the milk should not be a problem for her.

We are keeping our fingers crossed and looking forward to what this upcoming week will bring for Harper.  Tuesday will be a big decision day to see when they think that Harper can start on some of the milk and truly test her duct, but as of right now we are happy to see her happy and improving each day!

Here we go again...

Harper has been knocked out on sedatives most of the week... Trying to keep her asleep so she can heal and not move much to protect her sutures. Also it helped with pain management.
Yesterday, they weened her off and then started feedings.  Unfortunately, overnight she did not respond well to the feed... since she has not been eating for the past 6+weeks, her stomach is going to take some time to become acclimated to Karen's milk.  So, they needed to do another procedure on her today in the OR to put in a more permanent 'IV' which would allow the doctors to feed Harper with nutrients to supplement the little food that she will be eating.  This has been done over the past 6 weeks with another line, but it had been in too long and had to be removed.  Also, the one they did today was more 'permanent' and would last longer with less chance for infection.
We are still hopeful that she will be extubated at some point today, but with this procedure she may still be knocked out and not able to come off today.  Also, we hope they will try to start feeding her again tonight or tomorrow, at least a little, so that we can keep making baby steps forward!
=W=

Post-Op

Harper is out and doing well! I'll give more updates soon! =W=

On to Plan C...

After 6 weeks of waiting for Harper to heal and resolve this issue on her own, we made the decision this morning to move on to the next step.  On Saturday night, we were told that the doctors were planning on a possible surgery this week sometime.  On Sunday night, we were told that the surgeon would consult with us at 8am Monday and if we decided to move forward, then they would go ahead with the surgery as early as 930am.

I have been researching the possible procedures, surgeries and medications that could be used in the next step, so we were fully prepared for our meeting with the surgeon to make sure that we were all on the same page.  We came in this morning and talked with the surgeon - he explained everything fully and answered all of the questions we had, so we decided to take this step to get Harper healed up sooner so that she can get out of her plastic bed and home with us.  The duct that is leaking is going to be tied off and they are also going to permanently close the space that has been filling with fluid.  We are, as the doctors are, very confident that this will do the trick and we can move on.

About 10am we walked with Harper up to the surgery center, gave her a kiss on the cheek and left her in their hands.  So, we are now just waiting in the Ronald McDonald room for the next few hours.  I will post a couple updates through the day for those of you who are reading frequently.  

Thanks for all of your support, love and prayers!

Every little thing gonna be alright...

=W=

Back to School!

Yay?  I am usually more excited for the start of the school year than I was this year.  It was nice to have a small distraction from the hospital, but it was hard to not see Harper for the full day until after practice.  I am sure every parent experiences that feeling when they go back to work, but I feel that I may be a little more unsettled given the circumstance that we are in.  Oh well - it is what it is and "every little thing gonna be alright."  I will just cherish the small moments in the morning and evening with Harper that much more, now.

She started feeding this week (on Tuesday) and her output increased so we are stopping her feeds again tonight. The doctor told me that we are going to look more closely at the next plan tomorrow and over the weekend, and possibly prepare for a procedure next week.
I will give more information about the procedure once we consult the doctors about it. It sounds like a positive next step and relatively benign.

Let's hope!

Waiting...

Harper is doing very well - so well, in fact, that she decided to take her chest tube out last night!

Karen and I were saying goodbye to her around 9/930pm last night... I leaned down to give her a kiss and I heard a hissing sound coming from her bedside.  I put my ear down next to her chest tube and heard it more prominently.  There was an air leak!  We notified the nurses - they notified the doctor - X-ray confirmed that the tube had moved so far out of her chest that one of the small drainage holes was outside of her body!  So, they removed the tube and thought they were going to replace it immediately, but decided to wait until she really needed it, since the x-ray also showed that there was no fluid in her to be pulled at the time.

Without any chest tubes, Karen got to hold her for over an hour, which was much more pleasant not having to worry about it tugging or slipping.

I came back in early this morning and she still had it out, which means the doctors did not see enough fluid build up to constitute putting it back in.  We are pretty sure that she will need a new one before tomorrow morning, but the time off is a nice rest for her and for us, as well. I got to hold her this morning for a couple of hours and she was very comfortable and content.

The plan:
Keep waiting.  The meds do not seem to be doing too much in terms of reducing the fluid (once again, the meds are meant to reduce fluid in hopes that the leak will heal with less fluid rushing out of the site), but they may be reducing a little so she is going to stay on them for a little longer.  We are planning to wait at least two more weeks until anything else is done.  Most (80+%) of these cases resolve themselves without any further intervention, and usually around 6-8 weeks.  Since we are only at week 5, we are still very hopeful that we will not need to do anything else.

If we do need to do something else in a couple of weeks, there are very good options on the table other than surgery... so we are still very optimistic that she will not need to have a surgery.

She keeps smiling... so we do, too!  :)  =W=

Weekend Update

After the initial drainage of 55 mLs the day of the chest tube switch, Harper had an additional 50+mLs removed the following day. The chest X-ray now looks very clear and she is much happier, with exception of her hunger.
Now the plan is to make sure there is little to no drainage for a couple of days along with no build up of fluid that the chest tube is not reaching.
If that is the case come Monday, then we may try to feed again and see how things go from there.
This plan may change today based on the X-ray today, so let's keep our fingers crossed.

Comfy

This morning doctors decided to change out the chest tube for a new one.  It was clear by the chest x-ray and also Harper's breathing patterns that she was backing-up with a little more fluid, so the tube was no longer doing its job.  When the changed the tube out for a new one, Harper drained a good amount right away (about 55mL's in the first hour) and was clearly breathing in a more relaxed state.  She is much more comfortable now and will hopefully show little drainage after this initial 'back-up' volume is removed.

We will need to keep waiting, probably through the weekend, to get a better handle on her output and what the next step might be. 

Jumped the Gun

Over the weekend, Harper had very low output (less than 10mL's) and actually got down to only 1mL out on Sunday.  Based on this, the doctors decided to start feeding on Monday.  So, Harper got 5mL's of formula every 3 hours from Monday afternoon through the night.  On Tuesday morning, the output from her chest tube was over 10mL's and the doctors saw a small amount of fluid build-up on her chest x-ray... so we are back to no feeding.  The medicine was also increased, again, and the plan is to keep her without feeds until the output is near zero for multiple days in a row.  Then we will try feeding Harper again and go from there.

On another note - I completely forgot to tell the story of our adventures back at home!!
Friday night, Karen and I got home from the hospital around 1030pm.  We got settled in, poured a glass of wine and sat on the couch to relax for a little before we went to bed.  As soon as I sat down, I smelled a strong smell coming in through the front window... skunk!  Karen went to the back door and called the dogs to come in... Buckeye came in right away, but Crew would not come  in.  I went out on the deck... immediately smelled the skunk (much stronger than the front of the house), looked and called for Crew for a minute and finally spotted him off of the side of the deck.  He had is face down in a pile of black and white fur... he had killed a skunk in our back yard!
I rushed back inside, closed the door and told Karen what I had seen.  We rushed around the house getting supplies to go out and wash Crew (baking soda, vinegar, dish soap, listerine and shampoo)...
So, there we were... our nice relaxing night turned in to cleaning our skunk sprayed dog in the middle of the night.  We got most of the putrid sulfur smell off of him, but still made him sleep in the kitchen behind a gate all weekend.

Crazy...

=W=

Fuzzy

After Harper got a bath...

Our daughter is starting to grow a mullet.

Got Blood?

Harper's output was, again, very minimal and her chest x-ray was clear. So it appears that the medication it working and she is not producing as much fluid. Hopefully, this will be a window for the leak in her duct to heal up and we can move forward!
But, her breathing was a little heavier than normal so they did some labs and found that her red blood count was low. Apparently, babies don't/can't make red blood cells the same as adults can because all of their marrow isn't fully functioning. Since they have done so many labs on her and had to remove so much of her blood, they were not surprised that her count was low. In order to get her rbc's back up she had to have a blood transfusion.
Not too big of a deal, really. They just hooked up Harper's IV to a syringe of blood and slowly pumped it in to her. The IV actually came out during the transfusion because it had been in the same hand for so long that it 'went' bad. But, they put a new IV in to her arm and continued pumping away!
Thank you to whoever donated their blood that our baby girl needed. I will certainly continue to give blood every chance I get... You should to! It truly does save lives.

Tomorrow the doctors will come together and talk about a possible plan for the future. I know they will want to see another few days of no output before making and severe changes, but maybe some food is in her future! Get pumped!

I'll update tomorrow with what the docs say and what they come up with as a plan for Harper this week as long as everything continues to go 'as planned'!

=W=

Slow Weekend

Still very little output and not much else to report! The MRI did not show anything new, but it did rule out some of the other possible causes as well as a few complications that may have arisen. So, Harper is healthy and strong other than this leak coming somewhere from her thoracic duct for some unknown reason.
But, the volume of fluid is down which is good unless it is simply not draining and accumulating in that pleural space again.
Time (and a couple more chest x-rays) will tell.
For the now, Harper is relaxing comfortably in her plastic box with us sitting, uncomfortably, by her side!

Pump Fake?

Harper only had 5 milliliters out in last 24 hrs (typical day has been 40-80mls, depending). The last time this happened the chest tube needed to be repositioned and there was a small clot in the line. So, is this another "pump fake" or is the fluid output truly reducing? It may take a couple of days to find out... We will let you know when we know!
Also - wanted to give a quick update to let you know that Karen's poison ivy is clearing up just fine! No more itching and slowly going away visibly. Unfortunately, we can't hold Harper and more for a little while, despite the poison ivy being gone. :-(

OK Main Campus... Show us what ya got!

When I showed up this morning, Harper was wide awake and excited to see Daddy!

Today was the first day to get settled in and let all the docs get a good look at our little girl. Things went well, considering, and everyone here still remains optimistic that surgery is a distant thought.
     Step 1: Increase her dosage of the meds. We will find out tonight what dosage that will be, but it sounds like they are prepared here to be aggressive with the medication to help Harper along.
     Step 2: Get an MRI. Harper is scheduled to go in tomorrow, but that could get shuffled depending on the schedule of the radiologists and anesthesiologists. For those of you who have not had an MRI before, the trick to it working is that you have to stay completely still. Any movement will make the picture blurry. So, as you can imagine, it is impossible to lay a baby on a noisy table with all kinds of sounds and different lights and expect them to lay completely still. Thusly, she will need to be sedated during the MRI, which means that she may possibly need to be intubated.

     We will see what tomorrow brings us and hopefully we will have a few more answers that will lead us to the ultimate goal of bringing our little girl home. We know that she is going to keep fighting, so of course we will do the same.

=W=

New Digs: Part II

After a quiet weekend, today was more eventful than we were expecting!  Last week, the doctor had made it clear that if there was not much progress toward improvement that we may be transferred to Main Campus of the Cleveland Clinic.  The weekend flew by and was overall uneventful.  So, this morning we met with the doctor mid-morning and he said he would make a call to Main Campus to see what their status was and we would probably be transferred at some point in the week.  After we all talked, I went off to practice and Karen stayed at the hospital.  I got a call from Karen just was we were wrapping up practice... "Umm... we are getting moved downtown within the hour."  I hopped in my truck and got back to the hospital right away!  We packed up the room and loaded everything into my truck.  By the time we finished that, they were ready to pack up Harper and get her moving.  What we were expecting to take a few days to organize was mobilized and completed within a couple hours.

Karen and I went home, dropped off my truck, unloaded our things, packed a small bag and headed down to the Clinic.  We knew that Harper's new home was going to be 'different' but it was still hard to swallow the differences.  We no longer know any of the nurses, doctors or staff, which is much different since we had gotten to know everyone at Hillcrest over the past 3 weeks.  We now have to pay for parking... boo hiss!  It's going to be a lot different now, with the biggest difference being that we no longer have our own private room; there are 4 babies to a 'pod' in the NICU at Main Campus.  It is much less comfortable spending time with Harper and is more awkward with other babies crying constantly around you.

But, despite all of these differences, we know that we were moved to the Main Campus for a reason; Harper's care is priority.  It may be less convenient and less comfortable for Karen, our guests/visitors and me, but we know that it is best for Harper.  She now can be monitored by the specialists needed (GI, CT, etc) but can also get the testing done (blood gas labs, output composition, MRI, etc) all with the specialists right there reading them in real time.  So, we hope that the doctors will put their heads together tomorrow and come up with a new game plan to put in to action to get our little girl better.

We made some big moves today... hopefully, we will see some big improvements as a result.  We trust that we will, otherwise we wouldn't have made the move in the first place.

We'll keep you updated!  xo =W=

New Digs

It's almost Noon and we are still waiting for the doctor to do his rounds... so no new health updates for Harper.  But, we do have a couple of other updates to share...

• Harper got a new room!  Last night there was an opening across the hall, so we are now in a room with windows.  It's nice to have sunlight in her room and I am sure the Vitamin D will do us all some good.  I know that Harper will like her new room.
• Also, Karen came down with a wicked case of poison ivy... crazy timing, right?  She suspects the dogs had been in the woods and then passed along the oils to her... who knows?  So, now she has to wear gloves and get in a gown when she holds/touches Harper.  We got another chance to get her out of her 'box' today - it's nice to see her out of there and in our arms.  We can't wait until we can do it at home with no chest tubes or IV lines to worry about.

I'll write back with more once we get an update... hopefully soon.  =W=

No news is good news...

Not much to report today, but I did want to share the small fact that Harper has no more tubes, tape or lines on her head now!  They took the cannula off because she has been breathing so well and they removed her feeding tube since it isn't needed for a while.

I snapped this pic of her while she was waking up from a nap...

Keepin' Our Chins Up

There has not been much change in the amount of fluid output from Harper's chest tube over the last couple of days, so a couple of changes have been made to her treatments...

• No more feeding :-(  Harper is going to have to have an empty stomach until we get this resolved.
• The doctor briefly increased her dosage of meds, but then backed down a little after talking with a GI specialist.
• They are putting a new "IV" in her arm that will reduce the number or pricks/pokes that they are going to have to give Harper.

So... I did a little more reading on research and publications about the drugs being used and, to me, it looks like there is still room to possibly increase the dose and also more time to allow the meds to do some more work.  The research from one physician showed that he put the dosage up to 10 micrograms/kg without side-effects and Harper is still only getting 3micrograms/kg.  Also, the average days on the drug was around 21 days and Harper has only been on for 7 now.  Based on this, I still see reason for us to stay positive and assured that she will pull through soon and not need to go in to surgery.

Let's keep hoping...  Keepin' our chins up...  =W=

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  :-)