The Life of a Little Hippie

Okay, I couldn’t come up with a good name for this posting, so you get a question mark….which if we were to probably over analyze it would take on a deeper meaning – but we won’t do that.

Liam has had an up and down 36 hours or so….he continues to have difficulty breathing, and at times it’s a lot worse than others. Yesterday, for example, he needed suctioning in excess of 10 times throughout the course of the day; but today he has been able to mostly manage on his own – as long as we are putting him in a position that he likes. Late last night then again early this morning, indications point to the fact that he might have had a couple of seizures – the first ones that we have been able to outwardly see. It’s likely that his seizures never really stopped, but we aren’t certain on that since the EEG was removed. One of the pluses for us over the past bunch of hours has been that as the swelling as gone down, he is tending to open his eyes more. The doctors tell us that they are still not seeing any indications of brain activity other than things that generate in the brain stem…but even as such, it’s good to see his eyes every now and then.

As the back-and-forth of attempting to be parents to kids in two different locations goes, we spent the morning at home with Ezra. It’s interesting how the things that are often considered mundane take on a new life of needed normalcy in times like this. For example, the other night we took down our Christmas tree and decorations, and today we cleaned up our bedroom…and while these wouldn’t be worth getting excited about normally, it has felt really good for us to be able to do them. As he has been throughout these past two weeks, Ezra continues to be the most amazing therapy we could ask for. We really enjoyed the opportunity to play with him this morning and there are moments as we wrestle on the floor or hide from dinosaurs that all of the pain goes away.

When we returned to the hospital, we were greeted by an amazing site of Liam snuggled with the teddy bear that Ezra gifted to him. Liam’s nurse today (one of our favorites) has always done a great job of taking care of Liam, and it is because of people like her that we have felt comfortable spending time at home.

For some reason I feel obligated to come up with some sort of closing/summary sentence to wrap up this post; but same as the subject I am at a loss. So here is the substitute: So long Brett Favre, don’t let the door hit you on the way out.

Ezra decided that he had enough of trying to entertain four Grandparents, and he needed a couple hour break (ie: nap)…so it was Liam’s turn to keep them occupied for a while. Not surprisingly, he was able to accomplish this task without much worry.

Since Liam has been largely disconnected, it has been a lot easier to be able to pick him up on our own. He is still struggling pretty hard with being able to control his own fluids, and there are times when he is better at it than others. We are still learning each day which position he prefers (as it seems to change often), and we were lucky yesterday to have him like laying on us…

This morning was a welcome escape from the emotion – using a different side of the emotional scale by meeting up with Ezra and going to a place called Monkey Bizness. We have written about the place before, but for those that might be new to the blog, its a play place for children that has several locations in the area. We went to a different place than we have been before, with this one being geared towards slightly older kids (lots of inflatable bounce objects, slides, obstacle course, etc). We laughed and played and sweated and laughed more for a while.

In the afternoon we were able to give Liam his first bath. I suppose that he had something immediately after birth, but I don’t consider that a bath…it’s more of a let’s-make-him-less-slippery sort of thing. Due to all of the lines that he still has (even though they are half of what they were two days ago), he isn’t able to get into a tub of any sort, so it’s a hand-towel bath for now. Because he hasn’t been able to have a bath yet, he was starting to get some dry skin all over, and this wash seemed to double as an exfoliating event. He seemed so much more soft after it was done and it was really great for Ahna and I to be able to do that with him.

Liam continues to maintain a status-quo right now, so long as he is able to be placed in a comfortable position. Yesterday, he was really liking being on his stomach, but over the night and this morning it appears that he is most comfortable on his side….so who knows. He continues to have labored breaths and his breathing rate is pretty high, but he is also maintaining good oxygen levels and pretty good vital signs all around. Over the night, he was successfully weened completely off the dopamine, which is good as any less medication is better than more medicine. It also allowed the nurses to take off some of the tubing so it will be a little easier for us to hold him and move around some.

As we have said before, the entire nursing staff here at the NICU are a special kind of person. To be able to deal with what they are tasked in dealing with on a day-to-day basis is a remarkable feat in love. We have had the fortune of having the same nurse for each of the past 6 nights, and as she goes on some much deserved time off, we realize how wonderful it’s been to have her be apart of Liam’s life. These are amazing people, and she is an amazing person. She also gifted Liam a hand-made blanket yesterday, made by her Mom. It’s been a great addition to his crib and he seems to really be comfortable using it.

Last night’s calm was relatively short lived, but needed. We woke this morning – earlier than normal – to Liam having some real difficulty breathing. He has no gag reflex and no ability to cough, so he has a hard time dealing with all of the normal secretions and the fluid in his lungs. It took the better part of the morning to figure out the best position for him to be comfortable….but we might have found that he does best on his belly. He has been breathing fairly well (given everything) for most of the afternoon, and his vital signs look okay. The nurses have also been able to work throughout the day on lowering his blood pressure medicine, inching closer to being off of it all together.

There is a mind game that is in full play right now (I intend on writing another post about in more depth another time) that makes it seem like things are progressing in a positive direction. He got the EEG removed, he got the ventilator removed, he got the arterial line removed, he is getting removed from some medicines, and he is breathing on his own. It all sounds good, until you understand that the reality of the situation is that these things are being removed largely due to circumstance – not because he graduated beyond them. True enough, he was breathing over the ventilator for a while and he is responding well to lower doses of medicine, but these are not expected to be long term gains as evidenced by his struggles breathing. It’s hard even for us to remember as we live this each day that he isn’t getting better (under the traditional sense of the word) and that the things we perceive as gains aren’t always gains.

We had the opportunity this morning to have some professional pictures taken with Liam. There is a group that does this service for families in situations similar to ours called Now I Lay Me Down To Sleep. It’s a bunch of professional photographers who donate their time and abilities to be able to give families good photos. We called them yesterday and they came this morning to take photos of Liam with his Grandparents and Liam with us and Liam with Ezra (sort of…Ezra was a lot hesitant but we might have been able to get one or two photos of them in the same frame). We are expecting to see the results of the session in about 4 weeks, give or take a little. Since this service is so unique and special (and we really appreciated our photographer), I thought I would give her a shout out on the blog here….her name is Amber and her business is called Echo Images. She is based in the Denver area, so if you are in need of a photographer for anything…please consider hiring her as a return for what she did for us. You can find her at echobyamber.com or echoimages.blogspot.com

Ezra continues to amaze us with his resiliency, and while he does have his ups and downs (what child this age doesn’t), he has mostly been a great kid for his Grandparents. They have had lots of adventures so far together, and today were able to go to the Wildlife Experience in Parker after the photoshoot here. Tomorrow it looks like they are going to go to Centennial Airport for some lunch, and we might sneak down there to spend some time with him.

Here are some pictures that the hobby photographer (me) took this morning.

light from the pulse oximeter

on his belly

Whew. That was exhausting.

Today was non-stop emotional and physical drain from early morning till later tonight. We started the day off with a few meetings with Doctors updating us on Liam and what they were seeing. In discussions yesterday with the Doctors, we decided that we would extubate Liam this afternoon, so we continued those discussions this morning. Saba, Savta, Nana, and Papa all came to visit Liam this morning, which took us to near lunchtime. Oh, and a good friend that works with Ahna stopped by to do a casting of Liam’s hand and foot. She also came to do the same thing with Ezra when he was 9 days old, so it was very nice of her to make it to the hospital this morning to do one for Liam. On that note, if you are looking for someone to do it for you, let us know and we can put you in touch with her.

Ahna and I each took turns holding Liam in the early afternoon prior to taking the tube out. Yet another meeting with the Doctors was the immediate precursor to the actual extubation, which took place a few hours later than we originally intended, but still in the afternoon. I can’t begin to tell you the amount of thought and discussion that took place prior to taking the tube out, both between us and the Doctors and between Ahna and I. There is a lot of weight on every single decision at this point, and the emotional toll is enormous.

Just before 4pm, the staff came in and removed the tube. Liam has had the tube in place since just after he was born and still at Parker hospital, so we knew that there would be a learning curve for him in order to be able to breath on his own. Oh, I totally forgot a really big part of the day….the EEG. We met this morning with the Neurologist and had some discussions on Liam’s seizures and the treatment. They said that they are essentially at a stopping point with the treatment for the seizures. Not stopping the medications, but not able to give much more or a different type. That in conjunction with the sort of seizures that Liam is having, lead us to decide that he didn’t need to be on the EEG anymore. Liam continues to have seizures, but they are non-clinical (meaning that you can’t see them) and they are enough under control to merit removing the monitoring system. Once the EEG was removed, the cleaning began. If someone out there is smart enough to invent an industrial strength cleaning product that is both environmentally and baby friendly, you could make a fortune with hospital contracts. Cleaning off the conductive gel and the marker from the lead placements was a task and challenge in it’s own right. However, the silver lining to the cleaning was that we actually got to clean Liam. It was our first time able to do that for him at all, and it felt really good to do.

Okay, back to the extubation. The Respiratory Therapist removed the tube, and in a matter of seconds he was all of a sudden without tube or hat for the first time since he was born. They did place him on a little bit of oxygen via a nasal cannula, but that’s the only breathing support that he is getting. He did in fact have to work really hard to figure out how to breathe, and it was really interesting to watch him learn how to work all of the parts to get air without a tube. It was exhausting for us to watch and a little worrisome at times, so we can only imagine how exhausting it was for little Liam. We were fortunate enough to be able to hold him while he worked his way through this process, and you could witness a minute-by-minute improvement in his ability to breathe. His oxygen levels and respiratory rate looked good from the moment that the tube was removed, and he continues into the evening his strong performance.

It should be noted that this is what was expected to happen when the tube was removed. All medical indications pointed to his ability to be able to successfully navigate breathing without the tube in, but the worry, stress, anxiety, and emotion were really high all day long. We know that this is somewhere between a small step and a big step, but tonight it feels good. There are many, many tough decisions and days ahead, but tonight we celebrate that Liam is sans tube and hat, and that we get to see him and hold him without those things for the first time.

PS – Through this process, Ahna is having to learn the camera and becoming quite the photographer. Some of her best work yet is below.