Short Update, for the Record

There were a few reasons that Aly and I decided to do a blog about the time that Charlie and Henry were in the hospital. One was so that we had a record or "journal". It is with that in mind that I write tonight. 

Charlie did move to CPAP on Thursday and it is so far so good, in terms of his ability to breathe. Charlie, however, hates CPAP. We are hoping that he gets used to it... stat, as they say at the hospital. CPAP works better if he keeps his mouth closed. The pacifier, therefore, is a great tool. Calms him and stops air escaping. Sorry for the dark photo but I thought you might enjoy seeing his turtle help out keeping it in today. 

Henry update would look the same as most of the week. Breathing and growing. However, today, as we rather expected, he went back on CPAP now that his nose is ok again. 

(D)

Charlie has a Tough Day

Today, Charlie had his eye exam, he had multiple blood draws to help treat the circulation issue, they decided to give him a blood transfusion, he got a new PICC line and he had his photo taken. The general consensus is that his pulse is coming back well. All going well, he is getting extubated on Thursday morning.


Henry concentrated on growing and breathing... And got his photo taken.

(D)

Circulation

After his procedure, the main focus on Charlie is making sure that his circulation is good. That concern hasn't gone away yet. We were told this might happen. It is being watched and it is not serious at the moment. 

Henry, in the meantime, is doing ok without his CPAP and his focus is growth / nutrition. His ostomy output has always been higher than the docs wanted. There has been another adjustment this week to his nutrition so we are watching that. 

Tomorrow is volunteer photographs day so, even if it is a no news day, I will make sure we have some new photos for you. 

Finally, the nurse that I mentioned yesterday has had her surgery. We hear it went fine and she is recovering in hospital. I occasionally wonder how good a patient a nurse is. I assume terrible. 

(D)

Fitzpatricks Both Score a Century

100 days old today. 

This was another of those Mondays where a lot was packed into the day. Charlie was scheduled for his procedure to close his PDA in the afternoon, so he was off the milk from about 4am. He ordered a head ultrasound in the morning to help take his mind off things. 

Henry made a different selection from the bedside procedure menu. He went for the eye exam. He also spent some time pointing out that it has been two weeks since he went back on CPAP and he would appreciate a break. We talk about doctors on here and we hope that we have been clear on our feelings about the nurses. I don't think we have written about NNPs. Neonatal Nurse Practitioners, to save you a search. The boys have a NNP assigned to them day and night and they are the first person the nurse calls if there is anything unusual going on. One particular NNP spends a lot of time chatting to the boys, so she was who Henry called about his nose. Henry made a good case and those of you that like the photographs will be pleased to know that he got his way and the CPAP is off for now. Dr Newtotown made it clear that it is "for now". The scientists among you will know that it's not easy to get the pressure into his lungs if the tube is small, so that is why the CPAP "prongs" are so big and uncomfortable looking. If she thinks he is struggling, CPAP will return, no matter how much Henry charms his girlfriends. 

Charlie's procedure went ahead in the afternoon and went well. The doctor we met on Friday was pleased to get the duct plugged and said Charlie did well. Next up, he gets his pulse monitored in the leg where he went in to make sure that there is no interruption to the flow. As I understand it, sometimes the vein (or artery, I forget which is which) gets inflamed after it has had the catheter pushed through it and that has a knock on effect on his circulation. He is being closely watched by his nighttime friends. 

I have noticed that I am speaking on behalf of the children a lot in this post. This is a habit I am going to try and break. It is almost equivalent to me talking to Henry and saying "is your Mom going to go and get me a diet coke from the machine?". 

Even with my newly imposed rules, I can, with certainty, call the subject of this next paragraph one of Charlie and Henry's favourite people.

One of Charlie and Henry's favourite people (whom I know would enjoy my spelling) is having to take some time off from looking after them in order to have surgery. The hope is that the operation makes her pain go away. It has been a long time since I talked about the praying people but, if those readers are happy to do so, we would ask for our little family's friend to have a successful surgery and a speedy recovery. I'm no doctor, but my prescription for her is all 12 episodes of Fawlty Towers. 

To celebrate 100 days, here are the boys on day 1 and day 100.

Charlie;

Henry;

(D)

There's a Fungus Among Us

Today we got to the hospital around 10 and stayed until about 3. The day was supposed to be a grocery shop, laundry and clean the house day after we went to the hospital. This plan got interrupted thanks to thrush.  I developed mastitis earlier this week and got on antibiotics for it. I felt terrible yesterday but today I was feeling better but still very, very sore. I pump every three hours. Every. Single. Day. So, I was really irritated and confused that I got mastitis.  Pumping has become much more painful than usual and I was tweeting to some friends about it. My friend Casey mentioned that my symptoms sounded like thrush and I should try to get something specifically for the thrush. I immediately consulted Dr. Google (not a real doctor) and found symptoms to look for in both me and Henry since he is the only one who's been able to breastfeed. He wasn't in any pain but I decided to look in his mouth just to see if it looked thrush like.  There it was. The bastard that is thrush.  I asked our nurse to come look and tell me if she thought it looked like thrush.  She got her flashlight out and looked. Yep. Thrush.  She called the NNP who came, looked and confirmed...thrush. Ok fine, how do we handle thrush for Henry? Nystatin is the answer. The same Nystatin that was put on his skin a few times and possibly caused a reaction. Super.  Our NNP consulted multiple pharmacy personnel to ask if they had ever heard of an allergic reaction to Nystatin. Nobody had heard of an allergic reaction to Nystatin. It's the best and almost only medicine to clear this thrush up and we don't want it getting into his blood stream (OMFG) so we went ahead and said go with the Nystatin and just watch his mouth very closely to make sure he doesn't react.  He'll get it painted into his mouth 4 times a day for a while. I just called to check and he's not had a reaction or shown any signs anything is wrong. Whew! I'm now on 3 different drugs to clear up the storm brewing in my right breast. Mastitis and thrush bring their A game when they come to visit and the pain is no joke.  I never even thought to think of thrush when I started hurting because Henry and I have been banned from our non-nutritive feeds for almost 3 weeks now. I am so so thankful for my friend Casey for sharing her thoughts. Had she not done that I would not have looked at Henry's mouth and asked our team to check him out.  I know thrush is common in newborns, but my babies aren't normal newborns and an infection in his blood like thrush could have killed him. Hopefully we are both on the road to recovery now.

Charlie had a pretty chill day. He really enjoys sleeping in the buff and prefers someone stand vigil at his bedside AT ALL TIMES. He's a bit of a diva really. As his night nurse (and girlfriend in his eyes) says, "he's a very social baby." That he is. He likes to hold court anytime he's awake. If he's getting attention, all is calm in Charlie land but if he isn't..well buckle up because you've just wronged him and he plans to let you know.  We would love to show a picture of this but we can never catch it because taking a picture = attention, which = a happy Charlie.

Tomorrow we will be spending the bulk of the day at the hospital and Charlie and Henry's Mim (my mom) is going to visit. We have one of  our night angels back tonight as their primary nurse and two of our wonderful primaries are back tomorrow so the day is automatically off to a good start.

Here's Charlie sleeping a'la natural and Henry doing his Hannibal Lecter impression. 

(A)

Friday Freedom

As I have mentioned in previous posts, I get Friday afternoons off. This means I get to spend the afternoon together with my family. I love Friday afternoons. Today, I spent some of my afternoon putting together a Graco gliding swing. On the plus side, I did this at the hospital, so I was there with Henry and Charlie. On the negative side, nobody wants to put flat packs together with an audience. The photos of Henry sitting in his new swing are on the camera so I will put them on a future post. Sorry. Henry's night nurse told us tonight that when she took off his CPAP to clean it, he was as good as gold and was satting 100. She thinks his message is "I'm ready to get this thing off". 

We met the doctor that is going to do Charlie's PDA procedure today. He was fantastic and took a lot of time to explain the plan and to answer our questions. I wish the boys weren't in the hospital, of course, but, since they are, I am so relieved that they are at TCH. 

(D)

Condition of the Heart

It was quite a while ago that I first mentioned the issue of PDA. Henry's eventually went away but Charlie still has one. In that post in November I suggested I shouldn't try and explain what it is. Tonight, I am going with a short attempt. A duct in his heart that should have closed hasn't. As a result, oxygenated blood from the lungs is flowing back to the lungs rather than off to the other organs. The knock on effect is the lungs are having to work a little harder to keep the blood oxygenated. There's a high risk that I haven't got that right, I am afraid. Let's try again. A duct hasn't closed that should have. The decision has been made that it would be best for Charlie to close it. 

The technique they are going to use is to run a catheter up an artery to where the duct is and insert a coil. The coil closes the duct. (I think by creating a blood clot but, again, I might be wrong). In my defense, I haven't spoken directly to a doctor about the solution and when I was originally told about the problem, it was at a time when there were much bigger issues, more scary mountains to climb. 

So, Charlie's extubation is waiting until they fix his PDA. We are hoping that maximizes his chances of having this extubation be a successful one. Outside of his breathing plan, Charlie is doing well. He continues to grow and tolerate his feeds. That said, he is a bit fussy / cranky since the last change to his feeding regimen, just not to a point that it is a worry. Aly's solution is to give him some extra time and a kiss, or try him in a new position. 

He kept his eyes open for the camera lady today.

Henry has very much got back on track with the growing thing. He continues to be ok (for that read not throwing fits constantly) on his CPAP. When I talked to the surgeon about his ostomy, it was agreed that, although he was clearly having a higher than preferred output from it (indicating little if any digestion happening), his next surgery was not imminent and, for now, it was very important to get an accurate read on his output so that they could see if there was change and to warn if they needed to replenish via the TPN. Letting his essential minerals drop could cause serious problems and might happen if they didn't notice an increase in his output. Again, we are relying on the nurses. 

Henry decided it was best if he slept through today's photo shoot. Purple Hippo smiled for the camera, though. 

February is coming to a close soon and Dr Newtotown, who we now adore, is going to be replaced, as is the way of the hospital. We are waiting to hear who takes over. Maybe it'll be Dr Everything'll be Alright. 

(D)

Busy Mondays

Mondays are busy. Today, Charlie and Henry got their eye exams. Neither now has ROP, which is great. Henry has hemorrhages in one of his retinas, though, so we need to watch that. 

Henry's growth is good and his conjugated bilirubin is now on the decrease, so Omegaven has worked its magic again. 

Charlie's desatting didn't stop so they are continuing to think about what the best plan is for him. CPAP is on hold for now. Maybe Thursday. He was struggling with his breathing today and, when I had some meetings canceled on me, I decided to go and take a look. By the time I got there, he was better but while I was there I got to meet several of the doctors, including the surgeon. So, it was worth the trip, especially as I got to do some work at the hospital too. A productive few hours. Well, except for the fact that I didn't take any photographs. Shame on me. 

(D)

Who's Driving?

I talk about the boys and think about the boys a lot so it is hard for me to remember what parts made it to a blog post. Sorry if some info is repeated. An example is weekends at the hospitals. I find it interesting that, despite it being a 24/7 operation, things are different at the weekend. I may have mentioned this observation before. 

This weekend, Charlie and Henry's attending for February had the weekend off. Her name is Dr Newtotown. We really like her and we particularly like her fondness of a plan. So, a different doctor does rounds on the boys. It is accepted that you can't predict what is going to happen in an intensive care unit but you can reasonably expect that issues are going to come up and it is going to be tempting to address them as they do. Join me please, for a moment, in a metaphor. You are the main driver of a bus on a very long journey. You have thought through the route and considered all of the likely issues along the way. You take a break and let someone else drive for a while. When you come back, you are an a different route. The other driver hit traffic and decided to try some way round it. Other driver may be right but as you take the wheel again how do you feel?

This morning when we got to the hospital, there had been an adjustment to one of the settings on Charlie's ventilator. Aly was edgy. We had a plan. This wasn't the plan. We want to be respectful to the great doctor that is on call this weekend, but who approved this detour? We both thought this but we were silent. We learned later that Dr Newtotown had been checking things from home and had asked for the change. It's funny how much better that made Aly and me feel. We felt a little guilty that Dr Newtotown was spending any of her time off checking on Charlie - she has a lot of other things to be taking care of - but it felt good too. There are some decisions that need to be made this week and Aly and I are really happy about the doctor that is making them. She can choose the route for the bus and Aly and I are on board.

Henry is growing. He got his CPAP setup cleaned, so he breathes air with no support for a short while as that happens;

Then he spent some time with his mom;

(D)

Breathing

There's The Godfather (Parts I and II), of course, but, apart from that, I have not really been consistent in my position on the greatest movies ever made. In my adult life, number 3 on my list has been Field of Dreams, Pulp Fiction, Casablanca, Goodfellas and the current number 3, that has held its position for more than 5 years now, Cast Away. I think that it is a very under rated movie, which is possibly let down by some overly sentimental, maybe even trite scenes. However, I love it, so I forgive it. The "ice in my glass" scene, where Tom Hanks's character says "I know what I have to do now; got to keep breathing because tomorrow the sun will rise and who knows what the tide will bring" is one that I quote a lot and has a significance in my life beyond even how honest and open I have chosen to be in this blog. 

I mention it today because, even though nutrition and growing is the number one priority, breathing was what got the attention. Charlie is "desatting" (having insufficient levels of oxygen in his blood) and he has been for a few days. He's in the NICU so, of course, there's an alarm for that and he self corrects or gets a little help from his friends. There are a few theories about what is going on but nobody is suggesting that he does not go to CPAP early next week as planned. It will probably help. What I reminded him about today was that, without the ventilator, he has "got to keep breathing". 

Henry was breathing well all day. He got a little hot so he got to hang out in just his underwear for a while. I am calling it now, I think that is going to be his preferred outfit for the next few years. 

Aly held Charlie for 2 hours. Sorry that the photography is dark, neither boy likes the flash or even bright lighting. 

I hung out with Henry but I let him lie and held his hand. I have a pseudo-scientific notion that Henry needs to use every calorie on growing. Excitement can wait. Here was Henry before he decided to go streaking;

(D)

Growing Pains

Charlie is ready to be extubated again. He has done such a great job of growing that I think he is a bit big for his breathing tube. He is scheduled to go to CPAP on Tuesday. 

Henry seems to be accepting CPAP a lot better this time. I am not saying he likes it but he is definitely not as outraged as he was the first time. 

I am having to fight my instinct to make a spreadsheet of their weights. I love a graph. Charlie was piling on the weight so quickly that fluid retention became a concern so he is being closely watched so that he is outputting appropriately. Henry had a few days where growth flattened but he has followed it up with a few growth days. This would be much clearer in graph form...

I was at the hospital this afternoon with Aly and the nurses. I was really happy to get a summary from the boys' doctor, although Aly is so all over the care plan that I really didn't get anything that I hadn't been told by Aly. We need to give this doc a name soon. 

(D)

A Cheerier Post

Aly had a busy day at the hospital today but the status of the boys hasn't changed much. Charlie is still gaining weight well and Henry could do with growing a bit quicker.
I share Aly's position on the nurses that look after the boys but I feel that they let me down today. They had a chance to protect the children from the future embarrassment of having photos taken dressed like this;


(D)

Henry Takes a Step Back

I used a similar title before. We shouldn't be surprised. We were told many times that NICU life has its ups and downs. I was surprised, though. Henry is back on CPAP. It's Tuesday night as I write this and it happened on Monday afternoon. His lungs need a little more help. I was blue about it yesterday but I am back on track today. Before it happened he also had a hearing test and they detected a problem in one of his ears. I was / am blue about that too but he needs more tests first and they have to be done when he isn't on CPAP. Oh, and remember the ROP thing? We still haven't had any good news about Henry there either. Monday was not a good day for our darling Henry. We feel past worrying that he is going to die but we still have to live with real worries that he will have issues seeing, hearing, breathing and eating. Or maybe have no issues with any of them. In other news, he got his vaccinations today. 

Charlie did get good news about his ROP. He is also growing at a good rate without us having to try the Intralipids plan that I have been mentioning for over a week and his head ultrasound read was really positive. 

He says hi.

(D)

Every Carolie Counts

The last time we wrote any length of update, was Aly's midweek update but the change since then isn't really significant. 

Let's start with Henry. To the untrained eye (mine, for example), Henry is having no problem since he came off of the CPAP. However, the trained eyes say that he is tachypneic. My untrained vocabulary didn't know what that meant, but it means breathing quickly. This is not good for Henry because, if you have read the title, you know what's coming, every calorie counts. The focus is on growth so it's understandable that the doctor doesn't want him using calories on anything that can be avoided. We are in a bit of a situation with Henry's growing. He is on Omegaven so there is a cap on the fat he can get. We need to be patient and let the Omegaven do its magic because Henry's liver needs the help. So, in summary, Henry needs to turn all the nutrition he is getting into growth and, in the meantime, we wait. One other change that neither Henry or Aly are happy about it is that the non-nutritive feeds have been put on hold until his ostomy output decreases. It's unfortunate but necessary because there is no way to monitor how much he gets in a "non-nutritive feed".

Fortunately, it doesn't take a load of calories to look cute;

Charlie needs to grow too, but he is in a much better position to take more by mouth because his ostomy operation was a much more effective one. Also, since he has been on Omegaven longer, his liver is totally fine. This opens the option to give him the other fat, Intralipids. Charlie will be bigger than Henry, for the first time ever, by the time we next post something. He is getting to stay on his current setup for breathing for a little longer. The doctor sees no rush to change and is very determined that Charlie's next attempt at CPAP will be a successful one. We think she's right and we are really happy with the plan and how patient she is in explaining her plan to us. Charlie got his 3 month injections today. He hasn't yet formed an opinion on vaccinations but he didn't seem to really like getting them. 

Oh, and here is another baby from over 40 years ago. I saw a picture I took of Charlie and it reminded me of this one (of me);

(D)

The Kids Are Alright

This is a short no news post. Aly has not been feeling 100% but the boys are doing ok. 

Nutrition, nutrition, nutrition. 

We will take some photos and post them on Sunday.

(D)

Mid-Week Update

This has been a fairly good week so far for the boys. Henry is now on a nasal canula that attaches to the wall and gives him a very low flow of oxygen. I can now walk over to Henry any time I please and pick him up and cuddle him. Not having to ask to hold your own baby is such a luxury in the NICU. Because Henry is now on nasal canula he was also able to begin what are called, "non-nutritive feeds." Basically I pump and then Henry gets to "practice" breast feeding. The first time we did it the Lactation Consultant came over to help us get settled and make sure we knew what we were doing.  Well, you would have thought Henry and I had been doing this forever.  He latched right on on the first try and never let go. These feedings are supposed to be non-nutritive because his tummy can't handle a lot of milk right now and he's getting the exact amount he can handle through his feeding tube. Henry does not care that he's only supposed to get a certain amount. That kiddo loves his milk fresh off the tap. I was warned by Dr. Gut-Guru to be very careful during these sessions that Henry doesn't get but a taste of milk. I have to limit the sessions to just 5 minutes because of this. But those are 5 of the most glorious minutes of my day. I'm so impressed with how well Henry has done at this. The nurses and LC were both shocked at how well he did and commented that it usually doesn't happen like that the first time. 

In other Henry news, one of our primary nurses noticed that his fontanelle felt "full" earlier in the week. A full fontanelle can be a sign of a brain bleed or hydrocephalus so we were very concerned. Unfortunately, our primary team has switched again so we have a new doctor and a new NNP, neither of which know my boys or me. I had to push to get Henry a head ultra sound which came back with a radiologist's reading of "slightly larger lateral ventricles." Our new primary doctor wasn't really convinced they looked larger than the last ultrasound from December and said we could just watch it. Like I said, she's new to me and my boys. There was no way in hell I was going to "watch it" over the next couple weeks to see if something got worse. Not after what we have been through with Charlie. I got David on a conference call and the doctor filled him on what she thought and what she saw.  David and I both agreed we wanted neurosurgery to look at the ultrasound and weigh in. Our new doctor noted that this wasn't the normal way to proceed but if it would make us feel better (it will) she would order a neuro consult.  While waiting for the consult, guess who should walk in to check out Charlie's head? If you guessed Dr. Perfect Beard give yourself a pat on the back.  Dr. Perfect Beard or one of his colleagues come by each day to check Charlie's fontanelle. Dr. Perfect Beard said things looked good on Charlie and asked how things were. I may have casually mentioned I had requested that neuro take a look at Henry's ultrasound and head. Dr. Perfect Beard asked who from neurology was looking at it and I said I wasn't sure. He said, "why don't I just pull up the ultrasound and look at it now?". Yes, Dr. Perfect Beard, that sounds like a great plan. He pulled up the ultrasound and checked out Henry's head and said it was all normal growth and the ventricles weren't really any bigger. Oh Dr. Perfect Beard, how I love thee. So, three cheers for no head issues with Henry! 

Charlie continues to do well on his vent and we are just really trying to grow him. He needs to grow in length and weight before we can try to put him to CPAP again. He is slowly getting there. In good Charlie news, the eye doctor said that the injections look to already be working in. My wonderful mom bought Charlie some special NICU clothes that I plan on putting on him today. Stay tuned for pictures. 

A couple days ago I found out that one of the nurses in the unit does not believe in vaccinating and does not have her flu shot. Please read that sentence again and let that sink in.  A NICU nurse who does not have her flu shot. Apparently they can't force her to get a shot so she's supposed to wear a mask when working. She doesn't. I know this because I sit there all day every day and I've never seen her wearing a mask. I am so infuriated on so many levels by this. Why does the administration allow this? Why didn't the charge nurses notice this? Why were my babies put at risk? The doctors and nurses will tell you not to let any family or friends that don't have their flu shot around your babies, so why is a nurse allowed to be? I reported this to the charge nurse and I hope to see a major change in this. Exposing babies to the flu is inexcusable. 

Now for a small update on our new team. Nobody likes change. I especially don't like change when my babies lives are in the hands of said change. The new doctor is very good and I really like her. She just doesn't know our babies yet, so we are still in the learning curve portion of this month's rotation. The new NNP is...more challenging. I don't think she gets that I will be there during rounds every.single.day. I will have questions and I will correct you if you have wrong information about my boys. She only addresses the doctor during rounds so I have to physically stand in front of her to hear what she is saying. It's annoying but I'll break her in sooner or later. Thankfully we still have one of our NNP's from last month. She's back today so I'll be breathing easier that the boy's history isn't soley on me to give during rounds. I think that's about it for updates for now. 

(A)

Wednesday Photo Shoot

Things are fine. The boys had their follow up eye exams and there was nothing negative to report, which is all we would get at this stage. 

I really want Aly to write something about this week - I've been at work. However, since for blog updates it is not necessarily true that no news is good news, I just wanted you to rest assured that we are all ok. 

(D)

Twins

Dr. Marvelous has twins. The surgeon that we really like that did Henry's surgery has twins. If Aly was writing this, she would tell you the other people at the hospital with twins (she remembers these things much better than I do). We have two nieces that are twins. Charlie and Henry are not the only twins in the world. I make this statement of the bloody obvious because today I reflected on a similar statement of the obvious that was given to me at a time when I really needed it. I was reminded that, although the boys are twins, we need to remember that they are individuals. Obvious, right? Yes. However, if one boy has an issue where the only explanation the doctors have is "prematurity", you will understand why my instinct veers away from thinking of them as individuals and more as two boys in the same boat. 

Charlie was suspected of having the eye problem ROP last week and had the diagnosis confirmed today. I had resigned myself to this and, although I was sad, I accepted that it was treatable. Quietly, I was worrying that Henry would have it too. Why wouldn't he? Today, we were told he did. They both got the treatment and now we wait. 

If, readers, you take only one thing from reading these blogs I would like it to be this; NICU nurses save lives. Yes, they save the lives of the tiny children, of course, but they also save the lives of heartbroken grown ups too. On Saturday night, we were given another little example of this when Henry's nurse delivered a little wrapped up packet of joy to Aly during her evening call. The nurse told Aly that she thought it was time for Henry to wear clothes. Aly has had so much of the joy of being a mom (I did it) taken away from her that it, literally, makes me weep. I watched as Aly squealed with delight at the news from the night nurse and as she squealed a few times more when she picked out little boy clothes on Sunday. I wasn't there when Henry tried on his new outfit, but I bet there was another little squeal. And I bet there was a nurse there to share it with her.

(D)

Super Bowl Sunday

Yesterday's post didn't really follow any traditional arc. Was there a beginning a middle or an end? If I thought anyone would believe it, I would try to claim that the random nature was an intentional attempt to challenge the traditional. 

Today's post can be shorter because, to be honest, there is a lot less to report. Charlie is doing really well on the ventilator. He will be extubated again really soon. Maybe even on Monday. Henry is breathing really well too. However, they both need to grow. (Nutrition, nutrition, nutrition).

It's Super Bowl Sunday. That's a really big deal in America. Charlie and Henry wanted the Denver Broncos to win, according to Aly. Aly isn't a big fan of American Football but one of the nurses that takes care of the boys said she was supporting the Broncos, so that was enough. They will both be allowed to choose their own favourite American teams as they get older. However, they will support Aberdeen FC. That will not be negotiable.

Here's Charlie today. Probably the biggest short term worry with him is how much he likes having the ventilator do the breathing for him. 

Henry spent some time cuddling his mother. At some stage soon, I am going to have to use the term "mom". 

(D)

Charlie Takes a Step Back

It's Saturday evening. Firstly, I would like to tidy up a loose end about Charlie's nutrition. As I mentioned, the team have been trying to work out a way to give Charlie more calories while he stays on Omegaven. It looks like the way round the issue I described is going to be 1 day of Omegaven followed by 1 day of Intralipids. This will probably work so I am keeping my frustration about the issue in check... but I will vent a little here. We really like the nutrition team so to see them have to waste their time and energy dealing with politics and admin is upsetting. Watch this space, though, because Dr. Gut Guru has his eye on another plan for if we still need some help a few weeks down the road.

I gave you the headlines of Friday with a promise of more detail. I went to the hospital in the morning and then worked rather than my usual work then go to the hospital. I did this because we had been told that Charlie was going onto CPAP at 9am and I wanted to watch. It went well.

However, we were told that Charlie was likely to be a bit more of a struggle than we had seen with Henry.

With Charlie doing fine on the CPAP, in the afternoon, Aly asked the team to take another look at Henry. He really wasn't liking the CPAP. His nurse tried out a Hannibal Lecter style straitjacket to keep his hands from pulling it out.

There was a broad agreement among the nurses that he would be fine if they moved him to the less uncomfortable nasal cannula. The team agreed. On Friday night, neither boy was on a ventilator for the first time ever.

We called early on Saturday morning and we were really pleased with who our nurses were. We wandered in around 10 and made a plan for some holding. I am a coward when it comes to the holding thing. I love to hold the boys but I am acutely aware of the risks. I quickly "baggsied" ("called" for our American readers) Henry, the low risk option.

While Henry and I were enjoying our chat (there's a video here), Aly and Charlie were not having such a great time. Charlie was struggling to keep his "sats" up, meaning there wasn't enough oxygen making its way to his bloodstream. The nurse tried turning up the oxygen but it wasn't working. Charlie was put back in bed, a Breathing Angel was called and everything was checked and re-checked. There was no panic because Charlie wasn't dangerously low on oxygen. It was just obvious that something wasn't right. The Neonatal Nurse Practitioner (NNP) was also called and an X-ray was called for "stat" (they really do say that in the hospital, not just on ER).

The X-ray showed that Charlie's lungs were not getting the air they need and that means a collapse. It sounds bad but we were ok about it because we had been well warned. You see, the ventilator provides pressure in the lungs and it does a really good job of it. The CPAP tries to do the same but there are risks that there might be setbacks given how long they had been intubated. The decision was made to re-intubate to get Charlie's lungs inflated again.

I have been at the hospital while things have not been going well before. My "M.O." is to pace, get on the team's nerves, cross my arms, frown and constantly, constantly stare at the numbers that show the vital signs. In Daley Thompson's Decathlon (sorry for another UK reference), you used to tap the keys really fast to get the "power" up before you launched the javelin (at the perfect angle). I would watch the vitals on the boys and try and make the numbers go up by metaphorically battering the buttons on a metaphoric ZX-Spectrum. Today, I was sitting with Henry in my arms and I couldn't see the monitor. I considered demanding that the nurse take Henry from me so that I could do some pacing but I threw the idea out quickly. So, I sat there and watched. Aly was amazing, the nurses were amazing, the team was working as a team and Charlie was soon back to above 90% oxygen.

I continued to sit with Henry and we had a visit from one of my favourite people in the hospital, Dr. Needahug. The first time we ever met Dr. Needahug was at The Pavilion when a man that we didn't know very accurately said to Aly that she looked like she needed a hug. Aly nodded and, to my surprise, hugs were exchanged. That man was... oh, wait, you have worked that out already, haven't you?

Dr. Needahug really knows lungs. He also is one of the many wonderful people at the hospital that knows our boys. He had wandered over for one of his chats but quickly established that we, forgive me, needed a hug. This hug was a reassurance hug rather than a literal hug. We were assured that this was a small setback and some thoughts were shared on the best way forward.

The next unexpected visitor was Dr. Good Question. I gave Dr Good Question his name in these blogs because I love the way he handled my obsessive inquisitiveness. If I could name him again, I would focus less on how he dealt with me and more on how he dealt with the boys. He has done a fantastic job. As a quick reminder, here's Henry when he took him on;

If you need reminding about how much better Henry is now, you can click the link again!

Even though our boys were not his responsibility from yesterday, Dr. Good Question checked on them before we came in and then had a little check again this afternoon. He was not happy that the vent was back on!

Charlie is already back to 21% oxygen on the ventilator. Today was a setback for him but it wasn't a disaster.

(D)