We celebrated Liam’s 1 week birthday yesterday with a little cookie eating and football watching. Luckily the Broncos didn’t let us down as they pulled out the win – but naturally Liam and I only watched the part of the game when Houston went up 17-0.

It’s been a long week, but we have been blessed to be able to spend it with Liam.

note: this was written on Sunday morning, the baptism occurred on Saturday evening

It’s interesting how closely the emotions of happiness and sadness can exist. Just after dinner last night, all four of Liam’s grandparents and his older brother came back up to the room to be witness to his baptism. Dave lead the ceremony that was simultaneously video recorded and video chatted to the rest of the immediate family.

There has been a baptismal dress that has been in the family for nearly 100 years – since Bestemor (Liam and Ezra’s Great-Grandmother) was baptized in it 98 years ago. Each of the kids since then, including Ezra and all of their cousins, have worn it during their baptisms; so when we were thinking about getting it done last night there was no question on our wishes to have it here. Only one hiccup. It resides at Bestemor’s house in northern Iowa, and that’s not exactly on anyone’s route to anywhere. But our wishes to have the dress were granted when Aunt Ruth volunteered without hesitation to drive a couple of hours to bring the dress to Dave on his way to the airport. They met up yesterday late-morning and Dave was able to bring it with him yesterday afternoon.

For the ceremony itself, Dave led a very good and appropriate service. Each of us ran the gamut of emotion, from joy to sadness to joy to sadness to satisfaction that Liam was able to be baptized. Ezra also stood (literally on a chair next to Liam) witness and did an amazing job of being patient and attentive during the service. Since Liam has all of the tubes, lines, cables, etc affixed to him we were limited to laying the dress over him for the duration of the service. Amazingly, Liam didn’t set off any alarms and no medications ran out during the 15 minutes of the service (which is actually a long time for neither of those things to happen). Outside of the obvious differences that doing a baptism in a hospital presents, the only other big change is that we were not able to light a candle – because of all of the oxygen in this place.

We are so thankful that Liam was able to be baptized as a child of God and it to be witnessed and experienced by our families….made even more special by the fact that it was done on Christmas day. It is our intention to introduce Liam to the other half of his religious life via a Jewish naming ceremony when the opportunity presents itself.

If regular hospitals are something of a wonder, than specialized hospitals are something of a phenomenon. Having now experienced both – and at the same time – I have been amazed at what each is able to accomplish. The hospital in any community in the country is set up the same (outside of a rare specialty): be able to deal well with anything that walks through the front doors. From birth to death, from sick to injured; nothing can come through that they cannot at least start to treat for any age.

The clear thing that separates a hospital from a specialty hospital is of course the specialty, and in our case it’s a children’s specialty. It’s a unique place that has a unique attitude all to it’s own; carried out through every employee and through all the walls. I suppose that when a building is engineered and a staff hired with a priority and attitude in mind, special things can happen.

The other piece to the experience here as been the volunteers, both in the hospital and out in the city. The folks here are amazing and very giving of their time and energy. We have met countless folks that come on weekends, evenings, weekdays, or whenever to give a little of their lives. The outside folks consist of anyone in the community that gives to the hospital via monetary or other donations: Santa came to visit Liam’s room the other day with a gift in hand (a firefighter build-a-bear, go figure). We had the opportunity to go ‘shopping’ for Christmas gifts at a make-shift toy mall here in the hospital – and at no cost to us. We had a wonderful Christmas day lunch provided by a community interfaith ministry. We had some coffee/tea provided by the Denver-area Harley dealers. The list goes on and on, and we’ve only experienced the tip of the generosity. I can definitively tell you that when you make a donation to a specialty hospital, it gets there and goes to the patients and their families. It’s worth doing because it means so much to the folks that are in the hospital.

A gift from the make-shift toy mall

note: this was written last night and posted today

This is written with tremendous heartbreak as we have some sad news to share. We are afraid to say that despite everyone’s prayers, thoughts, and best hopes, the worst-case scenario has played out.

This afternoon we received the results of the MRI and EEG from a team of Doctors and Neurologists, and Liam has suffered severe damage to large parts of his brain. The irreversible damage is seen throughout his brain, in nearly all areas and deep into the gray matter. It does not extend to his brain stem as far as anyone can tell. He has officially been diagnosed with Cerebral Palsy and will likely face a severe level of mental and physical retardation. We don’t know exactly what that means when it comes to quality of life questions, but we do know that things will fall on the severe side of the answers.
The initial thought about what happened was a placenta abruption, but the Doctor’s now believe that what occurred was something called an acute cord compression, where the umbilical cord becomes squeezed during the delivery process. It’s sudden and unpreventable.

Liam is still fighting off lots of seizures, and he has subsequently been loaded with aggressive doses of medicine to help in the battle. This also means that he has been largely sedated for the better part of the past two days. His other serious medical struggle is with maintaining a good blood pressure, but there are lots of factors going into that right now that makes it difficult to know if it is a struggle that Liam is having, or if it is due to a number of the meds, or if it is a combination of both.

Tomorrow, we will attempt to remove his breathing tube and see how that goes. Since he has been over-breathing the ventilator for several days, there isn’t too much suspicion that he will have too much difficulty breathing on his own. The next step will be ensuring that his seizures are under control, then addressing the blood pressure question, then going down the path of seeing if he will feed. The question about feeding seems to be the big unknown right now, and it’s possible that he might not even be able to do it on his own.

This afternoon we were able to each hold Liam for the first time, which was a wonderful, wonderful thing to be able to do. We are looking forward to being able to do that as much as we can.

Ahna and I struggle with this news, as I am sure that you will too. There are a lot of difficult questions that are being asked and we ask for all of your support, love, thoughts, and prayers as we go through the next few days of tough decisions. At this time we are not taking visitors, but keep checking back with us over the next few days. We have loved receiving all of the texts, phone messages, e-mails, Facebook postings, blog comments…and most importantly all of the thoughts and prayers that you have been sending this way.

We are planning on splitting our Christmas Eve and Day time between both hospital and home, and hope to have a wonderful celebration with Ezra as he is really into the holiday season this year. We are so thankful to have Ezra in our lives as he brings so much joy to us.

Subsequent updates will be posted as they are appropriate. We appreciate all of your understanding.

Love to each of you.
Oren, Ahna, Ezra, and Liam

Today’s been a day realizing that our daily activities have taken on a new normalcy….and frankly, we are missing our old one right now. Don’t read into that – it just means that we are missing our house, our food, our bed, our shower, our cars, our Ezra etc. Ezra was able to come up and visit with us for a while in the NICU waiting lounge (ps – turns out that kids aren’t allowed to even be above the 1st floor of the hospital without special permission right now. We got told.) where we had a lot of fun just being together. We played cars, chased each other, rolled around on the floor, looked at the fish…and we both realized how much he seems to have changed in the past couple of days. It seems like his imagination is skyrocketing. Or, he’s actually been able to transcend reality and have discussions with his toy cars.

We had to say goodbye to Kjerstin this afternoon as her visit ended and she made her way back to South Dakota. We have been so thankful to have her here the past couple of days to help with just about everything. Oh, and talk about hitting it off…after a quiet start, Ezra found a new play buddy and didn’t even miss a beat when he was with her.

Liam’s day has been primarily about getting rid of some stuff. First was the cooling cap this morning, then came the brain wave monitor (to be replaced with the EEG stuff soon), out came the foley, and off went the fentanyl. He has opened his eyes a few times, and we even saw him take a big yawn this afternoon; but he is still pretty sedated due to the seizure medication that he is on. He did go down for his MRI late this afternoon, and he did really well by laying perfectly still for them during the imaging. We are hoping to be able to review some results of the MRI this evening, but we aren’t sure yet as to when that might happen. We are hopeful that the possibility of Liam having his breathing tube removed soon still exists, which would then allow us to be able to pick him up, which we haven’t been able to do just yet.

A few Christmas season decorations have found their way into the room, and a few more are soon to follow. We are allowed to decorate the room as we see fit, so long as it doesn’t bring anything potentially dangerous into the NICU…ie: flowers are deemed not allowed here due to the pollen.

510 this morning (it seems like a train number, doesn’t it?) marked the end of the 72 hours of cooling. The three hats were taken off, and the rewarm has begun. It should take in the neighborhood of 4-6 hours, but sometimes babies tend to do it a little faster on their own. Only time will tell. The doctor also said that he is still pretty sedated due to the anti-seizure meds and the pain meds, so he might be a little slower than we first anticipated in waking up. They are going to keep Liam on the sedated side till after the MRI is completed since he will have to be completely still for that test. One big time mark and treatment done. Many more to come.

Ahna and Liam are back together (and I’m here too). It’s been a long day, but the end result is that Liam is still holding fast, and we were able to get Ahna discharged from Parker and up to Children’s so we can all be together. It’s gotta be said that the reason that Ahna is even here right now is because of Ahna. She was able to do exactly what she was supposed to do and rest and recover for two days. I am really proud that she was able to figure a way to rest yet be away from Liam. We all know it was super tough, but the good news is that it’s behind us.

Once Ahna arrived here, we were able to have a few good meetings with the nurses, the doctors, the lactation specialist, etc. It was really good to be able to both be brought up to speed on events at the same time, so we both were able to hear what was being said direct from the source. Liam’s vital signs have been relatively stable throughout the day, even though his temp has fluctuated a little bit. It’s a big balancing act between cooling the head and warming the body, and sometimes it bounces back and forth. The meeting with the doctor resulted in the reinforcement that the two primary concerns right now are his seizure activity (which we think is mostly under control) and any damage that happened to his brain (which we won’t know about for a while).

Tomorrow morning at 520am marks the end of the 72 hours of the head-cooling treatment. The nurses will then start to warm him up steadily over the course of several hours until he his back to a normal temperature. He will then get his caps off and we will be able to see his head all the time (!). After he is warmed back up, he will head down to a MRI (sometime tomorrow), then sometime later get a full-blown EEG. It’s only after all of that that we will begin to get an idea of what is going on and what road lies ahead. Till then, it’s chill. Literally.

Oh, there is that other kid that this blog has been primarily about for the past 3 years, yet has been somewhat ignored over the past 3 days…yea that’s right, Ezra! Talk about an amazing kid. He woke up on Sunday morning to his Saba and Savta instead of his parents and has been off and running ever since. He is amazingly resilient, and we are fortunate to have such a remarkable young boy. He has spent the last three days with either Saba, Savta, or Kjerstin and has played very well with each of them. He is going to come visit us tomorrow morning, so we are excited to be able to spend some time with him. Turns out that he isn’t allowed in the NICU these days (flu season), but we’ll be able to get him back here at least once during out stay.

I’m sure that I am forgetting something to share with you all, but I’m going to use this opportunity to say: tough. It’s going to happen and I’m going to stop apologizing for it.

Here’s some pictures. More in the morning sometime.

diaper change