It's been a year since I posted that Harper was coming home... I am not sure if anyone is still connected to this blog or not, but I just looked back over it and thought I would post a 1 year update.

Harper is doing great... no regression or signs that anything was ever wrong.  She is a beautiful and strong little girl who continues to grow up each day.  Here are some pictures of Harps... she is off the charts in all of her size categories for her age and I am sure that she will continue to amaze us each day.  Thanks again for all of your love and support last year and over the past year...

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=