Poor, Poor Henry

Another short update.

Today, Wednesday, Henry is needing a bit more oxygen again, sadly. As routine a virus as this is, it seems Henry is struggling to get rid of it. It's so frustrating. When the boys were first born and put on ventilators, one of the early goals is to get the oxygen support down to 21%, or "room air". We were very proud and relieved at how quickly both boys got there but it was Henry first. I have felt for a long time that Henry was ahead in the breathing game. He was first to 21%, first to come off the ventilator, first to come off CPAP. So, it seems so strange to me that it's breathing that is keeping him in hospital. We have always been told that their lungs were weak, so I shouldn't feel this way... but I do.

Charlie, on the other hand, is a delight. We have to feed him at 1am and 5am but he sleeps when we leave him to.

(D)

Breathe in the Air

Henry is off the vent again. For now, he is on a nasal cannula to continue to give his lungs some support. However, that they took this step is another great sign that he is getting better.

Meanwhile, Charlie is doing well at home. Feeding well and being a delight.

(D)

Grandad Rob

Aly's dad, Rob, was already a grandfather to twins when Charlie and Henry came along. Laurel and June are the boys' little cousins and they live in Florida with C&H's other cousin on that side, James. Despite this learned expertise, Rob, like the rest of the world, felt unable to help poor Charlie and Henry while they were stuck in hospital and, instead, supported from the sidelines patiently waiting for them to get strong enough to get home, when all the family could really start making tangible contributions and relationships. 

Sadly, Rob's time is running out and, as if this whole story wasn't tragic enough, Rob is going to die before the boys get to know what a fantastic Grandfather they have. 

We wrote earlier about how quickly Henry's illness took over him and there is a parallel in Rob's story. Rob has had heart problems for over 20 years but in the last few months things have moved to a whole new level and now have plummeted to this point, where Rob's medical care is now palliative. Rather than "just" having a device to help his heart, Rob's condition has, this year, started leading to failure of other organs, including his brain. Due to the vascular dementia, Rob now has very few lucid moments. This rapid decline has taken the whole family by surprise and the new reality everyone is living with is that we only have three weeks left with Rob.  Charlie and Henry will never know their granddad. It's heartbreaking to write that but it's true. What they will know is how happy their Granddad was when he found out they were coming and how excited he was to be a Granddad to two babies he watched his daughter and son in law work so hard for.  Charlie and Henry will always know how proud their Granddad was of them. 

Aly's family asked us to post about Rob to let people know his situation.  We had alluded to it but felt the time was right to let people know the gravity of the situation.  We went up to see Aly's family today (Sunday) and Charlie was able to come along. Henry is still in the hospital but is improving and we hope to have him off the vent tomorrow.  

(D&A)

Henry in the Hospital

It's Saturday. I am at the hospital to see Henry. My mum has Charlie and Aly is at her parents' to see her dad.

I wrote about Charlie yesterday so today is a Henry update. The doctor who examined  him is confident that he is getting better and that is a great relief to hear. He is still very sick but this is the first time in days that we have not been told that he is getting worse.

Henry went from nearly leaving the hospital to being on a ventilator in less than a week.
The support needed for his lungs has gone from nothing, to some oxygen through a nasal cannula to the high flow nasal cannula and, eventually, to the nuclear option, the ventilator. 

They stopped his feeds (so he is back on TPN with Omegaven), they moved him to an isolation room (a long way from the door, to extend that metaphor) and he had a terrible time getting the tube down his throat because his airway was swollen from the illness.

But they think he's getting better.

Part of the reason that the doctor feels he is getting better is that the settings on the ventilator that he needed yesterday are looking like they are too much support today. There are also some good signs in the test results.



(D)

Charlie at Home

With all the stress of Henry's health having such a rapid decline, some of you may be worrying that we are not getting to enjoy our darling Charlie being home again. 

I have been trying to work from home because Charlie had some appointments and Aly and I didn't want Henry left alone. Mum is a great help to have but she can't drive in the US and we aren't set up for her to agree / sign on our behalf. So, Aly has been at the hospital, waiting, watching and worrying while I get the significantly less stressful task of helping Mum with Charlie. Thursday was a pediatrician visit (mandatory after leaving hospital) and having an occupational therapist (OT) visit the house. Starting life on ventilators and in a hospital bed most of the time is not ideal for their development. We tried our best but, at home, we are taking all the help we can get to help them develop. So, Thursday was OT and Friday was Physical Therapy (PT). 

Here is Charlie in his workout clothes, waiting to get started. I think he's not so sure about this...

Later, Charlie and I did some "Tummy Time" exercises. It was great but, eventually, Charlie let me know he was done for now;

(D)

Parainfluenza Type 3

They worked out what Henry has. Parainfluenza virus. We have no idea how. Honestly, if I wasn't also Charlie's dad, I would be suspecting the baby that left then came back. Thankfully, Charlie is showing no symptoms. 

There is no treatment for Henry so we have to wait and hope he can fight it off. To make sure that he is getting the best lung support he can get, they have put poor Henry back on a ventilator. 

(D)

Henry is Very Sick, Charlie is Home

Today started with a call from the NICU telling us that Henry needed more oxygen. He has been on an increasing amount of support for over a week now. The diagnosis of pneumonia caused by him aspirating was not sitting well with us this morning and I decided to go in to the hospital and listen to rounds. 

The team were thinking the same. The antibiotics probably should be working by now so maybe it is a virus. Labs were taken and a full viral panel is being done. We are waiting to see what comes back. Tonight, the antibiotics were changed with the assumption that if it is bacteria, it is resistant to what he was on. 

In the meantime, he is critically ill and all we can do is try and support him. It is terrifying. 

Charlie is home. Everything went fine with his tests and he was released. As you can imagine, there was no party or ceremony. I drove him home, dropped him with my mum and headed back to the hospital. 

(D)

April, You Are Not Our Friend

Well April started out as a month we thought would bring us the joy of bringing our healthy babies home and never returning to the NICU as patients.  Oh how wrong we were.  Henry began coughing yesterday and today the coughing got much worse. We did an X-ray because we suspected he aspirated sometime late last week.  The X-ray showed we were right.  Henry now has pneumonia from the aspiration and is now on another antibiotic for at least seven days.  He's not allowed to feed by mouth until further notice.  

Charlie had another eye exam today and the doctor didn't see any new ROP growth so he gets an eye exam reprieve until Thursday. Charlie was about to be released when I noticed that he was desatting into the upper 80's...a lot. I watched it for a good 15 minutes and then asked the nurse to call our NNP and let her know. Both the NNP and our Neonatologist came over and looked at Charlie. They saw the desatts and there was enough concern to keep him from being discharged. I called about an hour after we left the hospital to check and he had had a spitting up episode where he bradied and desatted and had to be suctioned. Charlie will be getting an OCRG test tomorrow to try to see what is going on.  He's also having an MRI tomorrow.  Normally he would have gotten the MRI before he was discharged back on April, 7th but he had to wait until 8 weeks after his PDA coil surgery to have it done. 

All in all I really hate April. April has been nothing but a month of teasing us with hope and then ripping it away. It's frustrating and painful right now. Having Charlie home showed us just how babies thrive when they are at home and in a normal environment. It makes us worry even more about our boys continuing to be in the unnatural NICU environment. But with all their issues, the NICU is exactly where they need to be.  We are heartsick, tired, worried and perplexed by what keeps getting thrown at us.  At this point all I can say is April, you are not our friend. 

(A)

Moving Closer to the Door

In an example of real life imitating metaphor, Charlie and Henry are moving closer to the door. When Charlie left, we did a bed shuffle where Henry moved to Charlie's old spot. This freed up Henry's location for the son of the nice family that I mentioned in the post the other day. Their boy is going to be there for a while so Aly wanted them to have the "prime NICU real estate" that is Henry's old spot. Henry's new bed is, you will have guessed, closer to the door. Not as close as Charlie's new spot, though, which is literally the bed nearest the door. 

Charlie's eye doctor seems quite pleased with how Charlie's eyes are doing and if the exam on Sunday looks good, he is going to be comfortable with Charlie being seen as an out patient. 

Henry, meanwhile, is on an antibiotic that everyone is confident will take care of the infection. He is getting some extra oxygen through a nasal cannula and we have been told to expect him to need that for a while. So we will get training on using oxygen at home. Henry has bronchopulmonary dysplasia (BPD), sometimes called chronic lung disease. So does Charlie. It is very common in very premature babies. Unfortunately for Henry, he has had a late regression of his disease that was probably brought on by the infection. The good news is that we are assured that as he grows it will go away and, in a few years, his lungs will be normal. 

So, we didn't quite make the target of both boys home by Easter. Let's see how we do with both home by Mothers' Day (US version). 

(D)

Penny Lane

One of the many books I have read about The Beatles makes the point that "there are few more LSD-redolent phrases in The Beatles' output than the line in which the nurse 'feels as if she's in a play'... and 'is anyway'". This week has felt a little like a hallucination. Having Charlie home with us was filled with moments of disbelief. I hate being a cliche but we really didn't let ourselves believe it could happen and then it did. 

When I took the day off to take him to his out-patient appointments, it was full-on proud daddy, normal baby stuff. When the day ended up with me checking him back into the NICU it truly felt like a trip. I felt like I was watching the scene play out - but I was in it. 

The hospital was fantastic about it. Charlie is next to Henry and has the same doctor and it is as convenient for us as a family as it could possibly be. 

I mentioned before that Henry had an infection. It has set him back a long way and it is truly shocking proof to us how badly infections will affect our boys. His infection was in his scar where he had abdominal surgery but the symptoms were all in his lungs. He is back on a nasal cannula to get him extra oxygen. Looking at it from a a bad luck point of view, he had an infection that turned out to be resistant to the most used antibiotic for that infection. From a good luck point of view, this time in the hospital has shown how fragile Henry is and made sure that, when he comes out, we know how to care for him. 

(D)

A No Good Terrible Very Bad Day

So Wednesday has just bitch slapped us and man it hurts.  Charlie had his ROP exam this morning and the doctor found that his ROP has started to return and it needs immediate attention. He will be admitted back into the NICU and will receive a second shot of Avastin. He will then be watched very closely and if there is any sign of more irregular blood vessel growth he will go to surgery.  He came straight from his appointment and is now in the bed space next to Henry.  

Now for the Henry report. Things aren't good. He is desatting and bradying to the point where he now needs oxygen. They are doing a sepsis workup and an echo to try to figure out what is going on. They are looking at everything from infection to cardiac issues. We are in a bit of a haze right now as we try to handle all this coming at us. We will keep you updated.

(A)

Parole Denied

Quick update to let everyone know that Henry won't be coming home tomorrow.  He's not acting himself, he's been swinging all day today and it sounds like he has fluid in his lungs. He will get a dose of Lasix to see if that helps move the fluid and if it does we may be able to go home this weekend. If the Lasix does not solve the swinging issues they will do an echo to see if his PDA has opened back up. We will keep everyone posted.

(A)

BREAKING NEWS!!!

We just got word that Henry will be paroled on Wednesday afternoon after his last round of antibiotics! We thought he would be staying longer given the infection that popped up late last week but thankfully that isn't the case. Henry is in the middle of his car seat test at the moment and so far he's doing great. We haven't told Charlie that his reign of being the only child at home is about to come to an abrupt end.  He won't be thrilled about having to share but I'm sure he will be happy with the help as he continues to "train" us. 



(A)

Hello, Goodbye

This week, Aly has been at the hospital with Henry, mostly. He has an infection and we need to let that play out. Charlie and I have been hanging out at home with Granny Momo. 

The plan has always been to have someone with Henry for a good period of time. As a result, Aly and I have rather seen each other in passing. 

I have not been posting well because we are on feeds every 3 hours for Charlie, so there aren't many gaps in the day. 

(D)

It's Temporary

We made it through our first night with a baby in the house. Tuesday was frantic as we did our best to have someone at the NICU for Henry while someone was looking after Charlie. Both Aly and I found the time alone with Charlie to be hard work! What, no nurse?

(D)

A Day in the Life

Firstly, for those that get all of their Charlie and Henry news from this blog, Charlie did, as planned, come home today. He is asleep in the room with us as I write. 

Today has been a very emotional day. The nurses that have been taking care of Charlie and Henry arranged a going away party for Charlie in one of the meeting rooms. It was really nice of them. Dayshift and Nightshift were there on their time off, there was cake and presents and Henry even got to go on a wagon ride so he could be there too. We saw people from The Pavilion including Dr Marvelous. We talked about how helpful everyone has been and we were flattered to hear how much people had got out of looking after our boys. 

Henry isn't home tonight but he will be soon. I called the day emotional and one of the reasons is that we had to leave Henry in the hospital again, but he is healthy and will be home in a few days. 

Aly is much more sociable than I am. She chats to people and gets to know about them in a way that I can only participate in but never start. The nurses are an example of that. At the party, one of the nurses asked Aly if one of the nurse managers was pregnant. Aly knew the answer and plenty of details. (Twins, 13 weeks, one boy one TBD). Another example is a family that came over to the tower with very premature twin boys a few weeks ago. Aly said hello by the milk bank and got to know them, so I did too. They are lovely people and the mother is very articulate about the difficulty of communicating with the outside world in our situation. We know that people care and want to help but it is so difficult because nobody knows the fear and nobody knows what to say or do. It's impossible. She also said she was happy to know us, a family that was going through the same thing. 

Today, as we were getting everything ready for our party, that family were getting terrible, terrible news about one of their boys. Today, Charlie left the NICU and represents a happy story about a boy that nearly died but today rode in his mom's new car and met his dog. 30 feet away from this happy story is heartbreaking sadness. I don't know what to say or do. It's impossible. 

So, today we are happy and sad. The NICU is an emotional place and today we saw all sides of it. I don't know how the the people that work there do it but I am, and always will be, grateful that they do. 

(D)

Last Night

It is late. Tomorrow night, Charlie will be home. I can't really explain how that feels. 

Henry won't be far behind. Here is another nightshift gem. 

(D)

Not Just Anybody

As we mentioned, we had other plans for November. One of the things that didn't get done in November was to decorate the boys' room. We had hoped to make it a fun family time, using Aly's mom, Suellen as the artistic input. 

Instead of being a fun thing, it was in danger of becoming a chore that we needed to slog through one night. Enter Suellen! Suellen and our sister-in-law Anne came to the rescue and said they would help. And what a great help it was. It was such a thrill to come back to the room looking so cute and baby ready with fantastic ideas written on little post-it notes around the room. The room is full of positivity and love as we hoped it would be and we get to tell the boys that it is all thanks to their family. 

We will post more photos of the room when we have added the last few touches, but here is a little peek. 

(D)

Opened up the Doors

I have been neglecting my duties. I haven't updated this since Sunday. Shame on me.

Monday saw another improvement in Henry's conjugated bilirubin, meaning that we seem to, finally, be on track for Henry to be free of liver problems. Also with Henry, each day has seen an increase in his feed and a corresponding decrease in his TPN volume. This was the plotted course and we are really pleased with how it is going.

Charlie is going through the various tests that he needs to pass before he is declared ready to leave. His release date remains set for April 7th.

Aly's days have always been full at the hospital but these last few weeks have been non-stop. With the boys being fed (by mouth) every 3 hours and with the continuing throughput of doctors, occupational therapists, physical therapists, respiratory therapists and lactation consultants (to name just a few) there are a lot of distractions. When they were in their isolettes, there was a strong case for keeping them in a warm dark place to simulate a womb as best as we could. There was also a case for not treating them that way because they weren't in the womb so they needed interaction. I bring it up because that argument is long behind us now. There is absolutely no argument that now when the boys are awake, we need to let them know we are there for them and we love them. That is what Aly is doing so well and what I am so grateful to her for. It also presents our biggest challenge next week. How do we take care of Charlie at home without leaving Henry neglected at the hospital? Neglected sounds harsh. Anyone that has read this blog knows that we don't think for one second that our nurses would neglect our boys. However, you know what I am trying to say. We want to be there for them both.

Enter Granny Mo from Scotland*! My mum is flying over to help out. We have been offered help ever since the boys were born but, with it all being as emotional as it was, we needed to keep our circle very small. As we move ahead now, we are ready to widen that circle and, as we said we would, accept the help that people have been so generously offering. Aly has it all planned out and our boys are going to get all the love, care and attention that they need.

* My mum now lives in England but she will always be "from Scotland".

Here are some of the great photographs that the volunteers took on Wednesday.

(D)