Pierce - Age: 29 days

Happy New Year to all! Yesterday Nicole and I had a family meeting with Pierce's medical team. Among the topics of conversation were how Pierce has been doing, next steps and general Q&A for us. The doctors are not all on the same page. Some think that we should wait a couple of weeks to see how he grows and see if there can be any more progress made in a couple of weeks. The other side of the team thinks that we should have a tracheostomy.  After discussing the pros and cons with the Occupational Therapist, NICU Attending, Neurologist, Plastic Surgeon and the ENT surgeon, we decided that we will put him on the list for trach surgery for two weeks. That way we get the best of both worlds...two weeks to grow and make progress and if not, then we can go ahead with the surgery. Everyone seemed to be in agreement that this was a reasonable course of action.

There has been a decent amount of progress and a trach is a very life changing (for us - it is reversible for him) event. It requires a lot of care, time and effort and even though it can come out, it would be in a minimum of a year. That is a scary proposition and we could not just call a babysitter, go to any daycare, etc., so we like waiting, but we know that we cannot be here forever.

Anyway, here is a video that I took a few days back. You will see Superman socks on his hands cause he kept reaching for the stitches and the nose cannulla. Grandma K is there showing him his parrot (which he loves) and he tries to reach out for him.

All in all, not a bad couple of days. Ben

Pierce - Age: 27 days

And he is back at it again.... supporting the niners, sleeping and waiting to go home.

Nicole and I have a family meeting with all his doctors on Monday to discuss next steps since it seems like h he is not getting any better in the breathing and swallowing department so we will have to make some hard decisions once we figure out what the doctors think.

With that being said I will have more info for everyone tomorrow, but as it stands now he is dreaming of football, Bentley and Murphy.

Pierce wants everyone to know that he thanks them for all the prayers and well wishes, thinks that birdie has a good voice, wants to know who that handsome fellow is in his mirror that he keeps running into and that he looks forward to meeting everyone soon.

December 25, 2013

Merry Christmas!

Pierce - Age: 22 days

Alrighty, it is Christmas Eve and all the 'rents are in town. I picked them up last night from the airport. It is great to have everyone here. Andrew has been a huge help this last week and everything is set to have company. Yay! 

Another great thing is that Pierce's surgeries have healed wonderfully per the surgeons. That means that they are weaning him off the vapotherm. That have been dropping his liters per minute of air that is going in through his nose. This is positive cause he has to be at 3 before they try and turn him over. He is down from 7 to 4 overnight. Hopefully we will be down to three soon so that we can turn him over.

He is so uncomfortable and needs to be in a different position. Plus, I think it is harder to swallow and breathe on my stomach so I can't imagine it is easy for him. This is getting crazy and I think it is time for us to push things a bit farther. Nicole and I are sick of hearing him cry and looking all pissed off, so it's time. Everything is going well except for a few minor setbacks each day which I think are created by the docs, a bit. All in all, a rough couple of days, but I think that we are real close to being at the finish line.

Update as of 1030 am...genetics came by and they have the results of the micro array and they said that no chromosomes are missing or added, so that is great news! They said that a gene that might be mutated or misplaced (as we all have one or two that are out of place or strange) and without more specifics, which they don't have cause every test has come back fine, they won't be able to tell us which one cause they can't test for them all. Not to mention that of the 40,000 genes that we have, geneticists only know of about 10,000 and can only test for about 5,000...so we may not know for a while, if ever...

Pierce - Age: 18 days

So, I have not been posting anything as there really has not been much change. He has been on a breathing machine, on morphine, strapped down to the bed with weights on his head. This had been to keep everything where it is supposed to be and not cause undo trauma. All we could really do is watch him lay there asleep.

But today is a different story. This afternoon they extubated him which means he doesn't have the tube in, no drugs and is breathing on his own. He still had to keep his weights on his head, but he looks much better, is breathing, sleeping and swallowing. Yes, swallowing. It looks like he is working it all out.

That is the update for today. Great news!

Pierce - Age: 15 days

It's 700 in the morning and we are waiting for the surgery spot. We were told that they might have brought him earlier if a spot opened up, but nothing did, so he went down to the OR at 1130.

He was not a happy camper when we went down. I think he just wanted his diaper changed. Oh well. So the first couple of pics are of Pierce on his way down to surgery.

30 minutes after he went in and we were banished to the waiting area (where you can't eat or drink) we were summoned by the front desk to talk to one of the many doctors.... This time it was the ENT Doc that wanted to tell us about the scope work that he had just completed.

He said that all looked really good pay the jaw and that when he was looking at the tongue in relationship to the throat, that he has a mild problem. He said it wasn't that bad but was obviously positional so they were moving forward worth the other surgeries. Phew.... That is good news.

Update: 330pm... Pierce is out of surgery. All went well. No complications. All was routine. Dr. Oh said that the tongue lip adhesion really brought his tongue forward anf opened up his airway. The g tube went in fine and the nissen was routine. All in all the little fella is good. He is currently sedated and on a breathing machine and will be either until tomorrow or next week. Just depends on him. 

So, yay for surgery and we will see how this works for him. 

Pierce - Age: 13 days

Go niners!

Pierce - Age: 12 days

All seems to be going well, as well as can be expected. He is tolerating being on his side with his head turned sideways. He hates the oxygen tube that is in his nose. He has figured out how to grab it with his hand and pull it out and put it in his mouth. When I came in this morning, the nurse had taken to taping it to his face nose so that it wouldn't come out. He is not happy about that at all.

I hung out during rounds and they went over everything that happened during the last 24 hours and there were a couple of things that were of note. First, they upped the amount of air that he is getting through the nose cannules (sp?) because his CO2 level was a bit high last night. They are going to start checking that daily now to make sure that everything is okay. The second thing is that they were not sure that the Plastic Surgeon would do the tongue lip adhesion surgery because of the couple of concerns that the neurologist had about his brain and the 'low tone' or 'weakness'. I asked why and they said that they would check with all the doctors, but they thought that it wouldn't make a difference if his brain is not sending signals to his muscles.

After rounds, Dr. Oh came in to talk to us. He is the Plastic Surgeon. He sat and discussed the options with us for Tuesday's surgery. Overall, I think that we will go for the tongue lip adhesion surgery and then if that doesn't work, we can do the distraction of the mandible. Last resort would be a trachiostomy (sp?) which we think should be the last resort unless there is a serious concern about his trachia. Before they do all this, they need to take a CT scan of his head and they are going to do a camera of his nasal cavity and back of throat through the nose.

As of 15 minutes ago, the came to take him for the CT. As they said at night with the MRI, he has to be on his back (ultimately, the MRI was done with him on his stomach) even though they know that he doesn't do well on his back. Transport was there and got him all set up with a device that holds the tongue forward to allow breathing. We let it happen even though we don't believe it was completely necessary. He is down there now and should be back shortly.

Hopefully soon this will all be a distant memory.
Ben

Pierce - Age: 11 days

Last night they did a sleep study. Uncertain on the results yet. It will likely take a few days, but we did get the results of his eye test and EEG. Both were normal. Thank goodness!

Got to hold him again last night for an hour. He slept mainly. Seems to be much more comfortable on our chests.

Will update when I know more.

Pierce - Age: 9 days

And this is how Pierce likes to sleep...Just like his father. :)

Pierce - Age: 8 days

Got here and they have the MRI scheduled for 1030 am. They can do it in the prone position. Got his CPK tests back and it was normal.

Pierce - Age: 7 days

Today Nicole stayed at the hospital while I went to work and met with a ton of doctors and specialists. It was a lot of people...His doctors (all three, attending, fellow and resident) neurologist, geneticist, cranial facial specialist, plastics team, social worker, case manager and occupational therapist. They all told us multiple things. Here is the skinny...

MRI scheduled to see his brain and what might be going on. CPK test scheduled to see about muscle disease. Sleep study to be scheduled after MRI. Work with therapist on feeding over the next few days. After sleep study, discuss any surgery or fix for breathing issues related to PRS (Pierre Robin Sequence). Do broad genetic testing to see if anything else can be found.

They tried to take him down for the MRI Monday evening, but the thing that they did, was unsuccessful and they had to bring him back quickly and reschedule for the next day.

They then took blood and that went fine. Then off to sleep we all went.

Pierce - Age: 6 days

Due to the impending snow storm we got a call as we were about to walk out of the house that they wanted to transfer Pierce to children's right away. With that being said, we rushed out of the house so that we could go with him.

We of course asked how he did over night and they said he did great.

So, off we went and got there just as they were showing up. They put a small oxygen tube in his nose for transport, but no major machine.

He got to ride in a pod in the children's limo.

We were happy when we got to children's. He has his own room that Nicole and I can stay in and he has great care.

Doctors came by to see him and introduce themselves and told us that many doctors would be coming in on Monday. He had a good first day, got comfortable and waited for Monday.

Pierce - Age: 5 days

Today we talked to the director of The George Washington University Hospital,  Dr. Aly. He was great. He sat us down and told us that he wanted to take Pierce off the machines and see what he could do. This was great! We had been waiting for this day. Then he said the next day they would transfer him to Children's National Hospital.

So, we went out to dinner, came back and he was off and doing well!

What a great day.

Pierce - day two through four

So, yes, I am skipping a few days here as not much changed. Pierce is still in the NICU.  It has been determined that he has Pierre Robin (ro-BAN) Sequence which means he has a small chin, large tongue and cleft soft palate. This causes his tongue to fall back in his mouth obstructing his airway. So, for now they have him on a breathing machine (I think it is called a bi - pap or nacpp?) To clear out his lungs from the meconium and keep him breathing.

He is really uncomfortable and does not like having his chin strapped shut. It is hard to see him this way, but it is best for him.

On day four they took him off the breathing machine and put him on a CPAP machine which doesn't breathe for him, but just provides pressurized flow. He does well with this machine and breathes best on his side or prone.

As it sits now, he is going to stay on this machine till Saturday and then they plan on taking him off and seeing if he can breathe himself. At that point they would then plan on transferring him.

Pierce Kovite Zeitler

December l, 2013... evening, football is on, Nicole is cooking & in labor. Yeah, she's cooking. Sevenish rolls around & I am noticing that her contractions are close enough together that we have to go to the hospital. So, off we go. I'm going to make this easy on everyone & just say that labor lasted until 4:20AM when Pierce Kovite Zeitler was born.

Immediately he was whisked away to the NICU because he was having breathing issues. There, they had to put him on a breathing machine.

At this point it was midmorning of December 2, 2013. Nicole & I decided to stay at his bedside all day with only a couple of naps here & there. As the day drug on, we realized that he was going to be there for a while. While this was not easy, we were able to sleep a little bit that evening.

Attached is a picture.

Cassis - Day Six

I woke up at David's house:

Yeah, it's that awesome. He lives about 100 meters from the beach.

Yeah, that beach. Unbelievable. As you can see we are dressed to expend some energy. We drove to the Calanque's near Cassis to hike out to the point and have a picnic. We had made lunch before we left the house, packed it, took off and hiked way out to the tip of the Calanque de Port Pin.

Here is the view at the beginning of the hike.

And as we make the trek...

The city in the background to the right of that Calanque is Cassis.

All of us were not sure what this was:

I said that it was a port to collect things from ships back in the day. David didn't agree as he thought that from the porthole to the water was too far to work for ships. When we got back to his house, we found out that I was basically correct:
              You can still see ancient stone structures that were once used to load the tartins, sailing ships that transported the stone.

Here is where we stopped for our picnic:

Awesome, right?

And then on our way back, we stopped at an inlet and took a nap.

Then we headed back...

Yep, I'm a dork. Once we got back, we drove to the highest cliffs in France, overlooking Cassis and where we ate lunch. Hopefully this can give you some perspective.

We started the hike on the other side of the water, directly behind us in the picture above. Then we walked all the way out the the point on the far left of the picture. It was about 5 miles round trip. This is what we saw up on top of these cliffs:

 That is Cassis

From the cliffs, we took the back road down the cliff, to David's house and then David and Rachel made dinner. This is Escargo.

We also had a rotisserie chicken, hung out, had some wine, ate some food and then crashed as we had to get up early in the AM to catch the train to Marseilles and then a plane from there to Barcelona.

I have to say, this part of the trip with Rachel was wonderful. This day was actually my favorite of the trip as without Rachel and David, we would not have gone to the Calanques, or seen what we saw. It was super awesome and I am very thankful and grateful for their hospitality.