Friday Jan 31:- Quick Update

I will write a longer update tomorrow but since it was a big day, I thought I should let people know;

Charlie had his breathing tube removed and is on CPAP;


Henry's one man campaign against the violation of his personal space that he considered CPAP to be was eventually listened to and he got promoted to a nasal cannula. Henry was reported to say that he considers this an acceptable compromise for the time being;



Mother and father are reported to be very pleased with the day's developments.

(D)

A Very Long Post About Fat

Some time ago, I wrote a post about the nutrition the boys get (yes, I’m talking about nutrition again; you can’t say that I didn’t warn you). In the post I suggested that you Google Omegaven if you wanted a bit more information. I did that because I didn’t feel I had the knowledge to write about it but the time has come to give you my understanding of it so that I can go on to explain the issue we are facing. I got this understanding from Dr Gut Guru (and from the internet after talking to him and feeling that I needed more of an understanding at my own pace).

Part of the nutrition that the boys need is an intravenous fat emulsion (i.e. lipids) as a concentrated source of calories. In the US, lipids are made from soybean oil. It is believed that the fatty acids in the soybean oil contribute to TPN associated cholestasis (or liver disease associated with getting nutrition intra-venously). Both boys have had this liver issue. Omegaven is fish oil. The fatty acids in the fish oil are shown to undo the damage that the soyabean oil did. There's lots of evidence of this and Charlie represents more data. His bilirubin levels indicated cholestasis back in December and now he is totally fine.

I hope you are still with me. I don't want these posts to be totally dull. That said, one of the purposes of the posts is a journal and this stuff is a really important part of their story.

So, why is it that, if the fish oil lipids don't cause liver problems and, in fact, cure liver problems, do we use soyabean oils? The answer is the Federal Drug Administration (FDA). The FDA have not approved Omegaven. Omegaven can only be prescribed in the US via FDA compassionate approval if the patient meets the criteria AND if the hospital is approved. Fortunately for Charlie and Henry, TCH has the approval. I hesitate to say "fortunately" regarding meeting the criteria because that is, basically, saying, "fortunately they are sick enough".

OK. Thanks to those of you that have stuck with me. Summary - Charlie and Henry are on Omegaven, which is good for them, even though it is not FDA approved.

Charlie isn't growing at the rate we would like. To help, we would like to give him more calories. We want to give him these calories in as concentrated a form as we can because if we give him too much fluid, he can't process it and he retains it and this isn't good and may even affect his lungs. So, how do we give Charlie more calories in a concentrated form? More lipids. More lipids = more Omegaven, right? Wrong. Charlie is already at the maximum allowed under the conditions of the FDA approval. That is the issue we are facing.

The solution is to bring back the soyabean oil. Yes, Charlie is going to be given the soyabean oil that gave him liver disease. Fortunately, he will get it AND the fish oil that cures it. Simultaneously. Got it? Make sense?

Good.

Now here's the final kicker on this. The insurance companies will approve Intralipids or Omegaven. They will not approve both. The best analogy I can come up with is someone getting aspirin and ibuprofen for a headache - they want you to pick one. As upsetting as this is, we are being assured that the hospital will work round it - probably by eating the cost of one of them. We'll know for sure tomorrow (Friday). In case you are wondering, we can't, apparently, even pay for it ourselves because the hospital isn't allowed to charge for two, regardless of willingness to pay.

In other Thursday news, I saw Henry today. I saw him with his hands on his CPAP tubes and crying. It’s actually quite cute – you’re not left puzzling over what the baby is crying about. It’s like if you gave him a pen and paper he would write “get this thing off of me”. A little later I was looking at him again and there he was with the CPAP pulled out of his nose. Nobody had noticed because there was no drop in his O2 saturation, so no alarm. Yep, Henry can breathe on his own. He is still on the CPAP for now but I saw it with my own eyes. Henry can breathe on his own.

Finally, Charlie had the follow up eye exam today and it was stable. This surprised the eye doctor. He is testing him again on Monday.

Here he is, wondering what all the fuss is about;

(D)

Learning to Breathe

Henry continues to impress everyone since his move away from the ventilator and onto the device that he now has to help him get the oxygen he needs. I am amazed and thrilled. He was down to 21% oxygen before we even went to sleep on Tuesday night. 

Charlie is doing well too. We are totally in agreement with the team's plan to focus on growing Charlie before adding the complication to his life of breathing. His ventilator is set to 21% oxygen so the tiny lungs he has are doing everything that is asked of them. He'd probably do fine on CPAP too but there's no rush and no need to complicate things. 

Aly's been a busy mother this last few days because, if we're honest, Henry isn't a huge fan of having air blown down his nose constantly. It is good for him, though. Good news is that some consoling words and hands on mothering helps comfort him. 

Charlie is definitely not being neglected but let's just say that he is feeling fine being allowed to be all cosy. 

Our beloved volunteers were in today, capturing how the boys are getting on;

(D)

Out, damned tube! Out, I say!

I told Henry that I would write another post when he went to CPAP.  Henry took my challenge and was extubated to CPAP successfully today! This is such a huge milestone for Henry. For the past 72 days Henry has had a tube stuck down his throat helping him to breathe and today he was freed from his nemesis. It was obvious to just about everyone that Henry despised that tube and if left to his own devices he would have pulled it out and thrown it away himself. The exutbation and CPAP placement took a couple days of planning to make sure everything and everyone was in place to launch Henry into this new phase. Dr. Good Question was methodical in the days leading up to today.  He monitored vent settings, tube taping and O2 requirements like a hawk to make sure Henry was totally ready to go. I talked with all our primary nurses and these women all got together and coordinated schedules to make sure that Henry had one of his primaries for 48 hours after he went on CPAP.  A huge thanks to them for caring so much about our boy and making sure he was covered by someone that knows him. Dr. Good Question was adamant about this, which just shows again how crucial good nurses are.  The whole process took less that 10 minutes and Henry did amazingly well. The RT's were wonderful as always. We had several of them helping out and I'm so grateful for their calm presence and attention to detail.

I was able to video the process for David who was at work and for Henry to watch when he gets a bit older.  The CPAP machine doesn't look very fancy or high tech like the other ventilator he was on.  In fact, the little cap he wears to keep it on is attached to the tubes by safety pins and rubber bands. The whole thing kind of looks like MacGyver put it together with leftover parts he found in a basement. Whatever, it works and that's what counts. Henry is currently on 24% oxygen. For those who are saying, "24% oxygen? Well he was on room air on the ventilator, this can't be good" fear not, the O2 is expected to be higher on CPAP, at first.  He actually started the day on 36% and has done so well we have been able to wean him down slowly. They will keep doing this until he gets back to 21%, also known as room air, for those playing at home. Dr. Marvelous stopped by to check on Henry and the look of pride on his face warmed my heart.

That's the Henry report, now for young Charles.

So, as mentioned, Charlie's had a bit of a hard time growing due to a lot of factors: intestinal perforation, multiple surgeries, having to go off lipids, limited space in his TPN etc.  We are incredibly lucky to have the nutritional team that we do. Dr. Gut Guru is out of the country right now but he's been watching Charlie's lack of growth and he spoke with the fantastic nutritionist on our team and we have a plan. Part of the plan involved analyzing my breast milk to see if it was high enough in calories and fat. If the test came back showing it was lacking in either calories or fat content, they would be able to supplement it with fat from spun off breast milk. As I am in the middle of writing this post I got a call from our NNP with the results. The good news is that my milk has great calorie and fat content so no supplementation of my milk will be necessary. However, we still need to fatten up the lad and Dr. Gut Guru has a plan for that. We will be discussing the plan in the next few days and will let you all know what we decide. We are confident that Dr. Gut Guru and his team will grow our baby, there just isn't a better team around to get a baby to grow. Charlie is really enjoying his open crib and was happy as a clam today all swaddled up.

I'm throwing the blog baton back to David so expect the next update to come from him.

(A)

Plans for Growth

I used to watch the show Weeds. If Charlie was a plant like they grew on that show rather than a person, we would have probably kept him in the isolette. It had temperature control, humidity control and light control, as demonstrated well in the picture in this post. Growing Charlie proved to be the talking point of Monday. He's a little behind where they want him to be and, so, they are shuffling things around on the nutrition. The team seem confident that they have a plan that will get him back on track. It's a very serious topic, so, apologies for being shallow but when I was hearing that they wanted him to gain weight, I did want to suggest Weight Gain 4000. BEEFCAKE! If we haven't mentioned it already, the lady who watches over the boys' nutrition is fantastic. She communicates very well with us and her job is a bit like a living biology / chemistry / anatomy / pharmacy puzzle.

The main outcome from this decision that Charlie's size is a concern is that the team have decided to let him get a bit bigger before they extubate him. Not so for Henry. Tuesday at 9am, his breathing tube is coming out.

The other news from Monday is that Charlie is showing signs of having retinopathy of prematurity (ROP). Although it is bad news, we are feeling assured that it is treatable. He has another test on Thursday, so we will post about the plan after that.

(D)

Brady

According to Urban Dictionary, to Brady is "to leave a social situation without saying goodbye or letting others know you are leaving. A sneaky exit". For those not up on their popular culture, handsome quarterback Tom Brady left his pregnant girlfriend and ran off with Brazillian supermodel Gisele Bunchen (and, allegedly, didn't do so very nicely). In The NICU, to Brady is to have your heart rate drop significantly (feel free to Google the definitions of significantly!). It sets off an alarm, of course, and, although it was initially scary, we have rather got used to it because they are almost always self correcting with our boys. Back in December, Charlie had a bad run of bradycardia events that didn't self correct and it was a bit of a worry. Later in the day on Saturday, Charlie "had a Brady" and we let the worry monster come round for a cup of tea and a chat. 

You see, to Brady can be nothing or something and the boys have a big week ahead. If we need to change or postpone the plan, that's fine, but it will only be because it's something. And if it's something, that's something we don't want. 

In other new, for reasons I can't understand, Charlie and Henry both seem to quite like the terrifying creature that now hovers above them;

(D)

Best Snow Day Ever

My work has Safety as its number 1 value. It can sometimes be a hard sell. A lot of people believe that the number 1 value of the company is making money. Ask management at Exxon, Chevron, BP, Shell, Total what their top priority is and the will say safety. Ask the man in the street and I doubt you will get the same answer. As I said, it can be a hard sell. So, on a day when the news outlets and the local governments are saying that the roads are going to be almost unprecedentedly treacherous around Houston, is it appropriate for a safety first company to ask their employees to drive to work? Well, yes, because it was unlikely to be as dangerous as was being reported. Or, no, take the opportunity to demonstrate the company values and close the office. They did the latter and I was pleased. 

Aly and I took a very careful drive to the hospital and spent the day with Charlie and Henry. 

And what a day it was. 

Read all the posts and you'll see we deliver news where the good news has been in the "it's good news because It could have been way worse" category. Not today. Today was good news, plain and simple. Our boys have proven to be sufficiently developed to not have to live in an incubator. We had been working towards it and I wrote about it earlier in the week. However, it was such a thrill to see it happen. 

When we arrived, they were already "tops off". Basically, the incubator was switched off and the lid was up. Henry was awake and looking around. You can see a video of it here, if you like. 

It wasn't too much of a process, really. Pick up the boy, wheel out the old bed and wheel in the new. Next up, Aly and her mother are going to be getting some crib bling for them.

It is really great that they are far enough along now that they can be in these beds. From a little more selfish point of view, it is also much easier to stare at them, which is great too!

We have another even bigger step forward coming up in the next few days. The plan is to take them off of the ventilator and try them with a technique that doesn't involve a tube down the throat. It's called CPAP. Watch this space.

Just so you know, if Aly doesn't write a post soon, I am going to go on strike. 

(D)

Sleeping Arrangements

Footnote to yesterday's post; Aly's Dad is out of hospital and sleeping in his own bed tonight. 

On Saturday, the topic of the need for incubators came up. The isolette / incubator that both Charlie and Henry have been in has served multiple purposes. The closed lid limits exposure to airborne infection, lighting changes and noise but its primary role has been temperature control. Here is an old shot of their room in The Pavilion. Their beds have stayed the same (the forced UV lighting is long gone) so note the closed lid and the custom cover.

Well, the talk is that they may soon be ready to move to a more traditional style cot (UK) / crib. To coincide with this, Aly has been meeting Occupational Therapy (OT). For a while, the plan was to not stimulate the boys. In the womb, temperature is reasonably controlled, light certainly is and stimulation is minimal. It makes sense to simulate that for a while. However, it also makes sense that, after a while, you have to acknowledge that, as much as we all wish they were, they are not in the womb and we need to deal with that fact. That is where OT come in. 

So, Aly is working on a few stimulation things. In the meantime, they are being tested on their ability to hold temperature without the aid of the isolette. If they show they can, we take another step forward. 

Aly has to be given credit for asking the right questions that brought about about these developments. Keeping everyone on their toes. 

Now, class, what is the question you all want to ask?  

Well done. Nutrition update is that both have gone up on his feeds a little and still showing good signs of tolerating.

For those of you that didn't ask about the nutrition, I assume you asked "what day is it?". So here are some photos from the volunteers. 

If anyone is looking for tips on how to cheat at the who is who game, Henry has a hippo and, for now, isn't as big a fan of opening his eyes. 

(D)

Yes, We've Got Milk - Thanks for Asking

These blogs are about the boys. We write occasionally about how it is having an effect on us but it is, and should be, about the boys. That said, we all love Aly and it seems inappropriate to write about today without mentioning that Aly's dad, Charlie and Henry's granddad had heart surgery today. He wouldn't appreciate his health being discussed in a blog, though, so let's leave it at that and agree that Aly has a lot on her plate. 

Over the weekend I alluded to a story involving milk. It's a difficult story for me to tell without sounding rather gushing with love and admiration for my wife but here goes. When they were born, Aly knew that if she wanted to feed them breast milk, she would need to pump for a while. I make no claim to understand the process but it wasn't an option to just postpone and try and start up breast feeding them later in, say, March. So, back in November, Aly started pumping milk and dropping it off at the hospital's milk bank. The lovely people that work at the milk bank were very encouraging and crongulatory about her progress. Then, a few days ago, we were approached to talk about how much space we were using. Regular readers will know that the boys are not using a lot of milk. Bowel surgeries have had us reliant on TPN. So, Aly's months of production were beginning to overload the hospital freezers. Politely, we were asked to take some home. Not all of it, just half of what they had;

As Aly said, a lot of this is hard to understand. Aly has been pumping milk several times a day for months and the boys can't fully take it yet. It is just another layer of the strange torture that being a mother to premature babies presents. We are feeling confident that this process is turning around, though. Both boys are tolerating their feeds. All together now; nutrition, nutrition, nutrition. We don't know for sure how Henry and Charlie are going to get the nutrition they need as we move forward, but we do know that if they can tolerate breast milk, their mother has made sure that they will get as much as they want. 

(D)

More No News News

A short post to let you know that our time at the hospital today only brought positive news. Both boys are doing exactly what is being asked of them right now.

So, we made some hay while the sun is shining. We did what we had to do with the milk bank and headed out in the early afternoon for a nice lunch then some tasks around the house. 

When we are not at the hospital, our fantastic nurses are happy (or, at least, seem happy) to give us updates by phone. It helps keep us sane. 

Things to look out for in the next few days; milk updates and sleeping arrangement updates.  For now, though, goodnight. 

(D)

Stay on Target

We got a call this morning from Charlie's nurse because she really gets the level of communication that we want. The message was that Charlie had increased his urine output so there may be a change in his medication plan to adjust for this. We were getting a new freezer delivered this morning (Aly doesn't exactly take requests but she needs to write a post about our milk supplies) so we were going to be a little late in. Since we were unlikely to be there at rounds, we asked the nurse to remind the weekend doctor that our main guy, Dr Goodquestion, was quite keen to avoid adjusting his plan. One very wet diaper didn't strike Aly as enough reason to change course. It turns out that we needn't have worried. On his day off, our doc came in to see how the boys were and got to make the point himself. We love this guy.

After the freezer delivery, we headed in. While holding, we had a visit from some of the nurses from The Pavilion. It was really great to see them and I find it really touching that they want to spend any of their break time coming to see our family. As Aly said, the nurses have really been fantastic for us. We loved our Pavilion nurses and, just as they promised us we would, we have found nurses in The Tower to love too.

Today wasn't 100% good news, though. Henry seems a bit under the weather and we are not sure exactly what the issue is. He didn't tolerate his holding session very well and he looks pissed off when people mess with him. The good news is that his nurse tonight is totally happy with how he is doing when he is left alone and she plans to leave him be as much as possible. There are a few things that could be going on so we are letting it play out for now. It might be nothing. His vitals are great most of the time.

Charlie is doing really well, looking great and seems to be feeling fine. I held him and  we mostly chatted about his granny momo in the UK and also about his dog, Theo.


(D)

Fridays

I get Friday afternoons off. This means that I can go into the hospital and get updates from the week day doctors. We have mentioned before that, although the hospital operates 24/7 (of course!), there is a Mon-Fri team that makes the plan and the nightshift and weekend shift do their best to stick to it. It was described to me today as acute care and chronic care. As unintuative as it sounds, we want our boys to be in chronic care mode. Acute conditions need attention today. Right now, sometimes. Chronic is a bit more long term. We have spent too long in acute mode. 

This weekend I feel confident that everyone is going to stick to the plan and that is a good feeling. 

I was telling Henry all about this earlier. I may also have mentioned Scotland. 

(D)

Progress

Aly and I have both written about how we feel we might be moving forward. So, rather than an update on feeding, surgery or anything else hospital, how about some photos. Charlie then Henry;

(D)

A Long Overdue Post on Our Nurses

The boys had a really good day today. They were on room air for most of the day and are both tolerating their feeds. Charlie's echo came back negative for infection and showed his PDA has gotten smaller. It was just a day filled with good news and a feeling we are finally, at long last moving forward instead of falling behind.  

When victories like this happen they are shared first with a group of women I am growing closer to by the day; the nurses at TCH. This group of women (and one man) are some of the hardest working, caring and dedicated people I have met.  The nurses are the reason I can leave at night with full confidence that my children are in the best hands possible. The nurses we have met have held my hand literally and figuratively through what has been, without a doubt, the hardest experience of my life. I am amazed daily at how calm and cool under pressure they are when faced with emergent situations. They have to navigate the tricky world of dealing with doctors that sometimes don't listen, parents who are overwhelmed and emotional and patients who can't tell them what hurts or what is wrong. Nobody knows my babies better than our nurses. Their insight into how Charlie and Henry are has proven invaluable. We have picked primary nurses over in the tower now and like the primaries we picked over in The Pavilion, these women have become my babies' front line protection. They watch my babies all day and notice that Charlie's breathing is a bit too labored for their comfort or Henry's heart rate has been really low for too long. They notice it and they take action. Action that saves my babies from being in pain or getting sicker.  I am so grateful that we have such an amazing nursing staff to guide us through this horrible maze we are caught in. Nurses just don't get enough credit for everything they do. Our nurses multi-task with a grace that is powerful to watch and I'm in awe of them every day. They have so much work to do between charting, patient care, charting some more, talking to drs, the pharmacy, the milk bank, parents and countless other tasks on their checklist each day. I have seen some of my favorite nurses be talked down to and dismissed by doctors (guess which speciality) and it infuriates me.  Yet they carry on with what they are doing, ignoring the rudeness. In other professions this wouldn't be allowed, yet nurses somehow just have to take it. I've seen nurses catch mistakes that would have otherwise go unnoticed and I've noticed this quite a few times. Our nurses are smart as whip and think outside the box and go above and beyond. So thank you to all our nurses who miss time with their families on the weekends and holidays, who stay late to chart, who come over to the tower to see us, who, even if they don't have our boys that day come over to check on us anyway.  Thank you for doing what you do. You will never know how much it has meant to our family.

(A)

Feed Me

Henry is getting feeds. This is very pleasing and, although I have written about a lot of things on these posts, I am choosing to leave this one to Aly or leave it altogether. The main point is that 15 days after his surgery, we are trying trophic feeds with Henry. Henry is also now on Omegaven. There is a blog that is almost 3 years old about this treatment on the TCH page. I like the Texas Children's blog. Especially this one. 

Charlie appears to be tolerating his feeds at the moment. As predicted, nutrition for the boys is going to be the main topic for a while. 

We are in a new routine where Aly is at the hospital and I go to work. I hate not being at the hospital with the boys as much as I was but I am so proud of how Aly is taking care of things there and helping me as well as helping our sons. Someone I know from work commented on how my perspective on "important", "difficult", "challenging" etc. is going to be very different now and she was right (she usually is). It's not easy to be back at work but it's not easy for Aly to be dealing with NICU life alone and, of course, it's not easy to be Charlie or Henry. 

I hate television advertising in the US but, for the second time, I am going to reference it in a post. There is a commercial over here where a camel walks thought the office on a Wednesday asking what day it is, trying to get his colleagues to say it is hump day. If the camel asked me tomorrow, I would have to answer "it's the day the lovely volunteers take photos of the boys and make nice cards for us". It doesn't really roll off the tongue, I know.

(D)

Steady Sunday

It's looking like a quiet Sunday here today. Even though we have the unusual situation of our weekend doctor being our usual weekday doctor (I don't think Aly has named him yet.. I'll go with Dr Goodquestion), we have not made any changes over the weekend. There have been times when no change has frustrated me. Today, I feel quite good about it. 

Charlie is on his "trophic" feeds and Aly and I are really keen not to rush things. He looks great and his breathing is near perfect. I know we have to challenge him, he isn't going to be on IVs and ventilators forever, but I am fine with another day of him being stable and comfortable. This prolapsed stoma seems to be one of those issues that is worse for the parents than it is for the doctors. In other words, it looks worse than it actually is. 

Henry has been doing well and we fully expect a feeding plan for him to start early next week. In the meantime, he has been doing a great job of losing the fluid he put on prior to his operation and, warning - proud daddy talk ahead, he looks fabulous. Saturday was Aly's mom's birthday and, as a surprise, we arranged it for her to hold Henry. The nurse and RT were very helpful getting it done and it was really lovely. I am resisting writing too much analysis about it. Actually, after reading, how excellently Kelley Benham wrote for the Tampa Bay Times on the subject of her premature daughter, I feel I should stick to reporting the news and leave the creative writing to the professionals. Don't worry, I am sure I'll get over it. 

Talking of leaving it to the professionals, my photography isn't great but, in my defence, I try not to use a flash too often and that makes for a bit of blur. Here is Henry melting his grandmother's heart for her birthday. 

(D)

Holding

Charlie's issue with his stoma isn't going to stop him getting out for some cuddle time

(D)

Staying Positive

Unusually for the author, a short update.

Henry's progress post-op is fine - losing the fluid is important, on-going and a slow process. He is getting better and we are hoping he will move onto feeds soon.

Charlie had a setback and we are both trying to keep it in perspective. His stoma prolapsed, which means that it pushed out. It pushed out a lot and it looks... terrible. It looks horrifying but the doctors are, for now, saying it is manageable. It is Friday night and we are going to talk about it again in the morning.

(D)

Baby on Board

Even before I saw The Simpsons episode with the same title as this post, I asked the guy I shared an office with around 2001 why he had a sign saying "Baby on Board" up in his car. His explanation was that he wanted everyone to know why he was driving so slowly and cautiously. This made perfect sense to me but had never crossed my mind until he said it. I thought about this during my return to work this week because, as private as I usually am, I have spoken quite a lot to people about our difficult times (and you might have noticed that I write about them too). I think it is because I want people to know why I am behaving so differently. As Nina Simone sang, Oh Lord, please don't let me be misunderstood. 

Aly held Henry today and I held Charlie. These are good signs. If they are well enough to be allowed out, this is good. Charlie is having a good run of "negative cultures", meaning that the infection is looking like it is out of his blood. Henry is losing the fluid he was retaining and seems to be on a path that the medical team are ok with. Aly is making new nurse friends and one of them told me off today for making a pessimistic comment (about Charlie's chances of coping with being fed milk). She was right and I was glad she felt comfortable enough to make her point. Also, it seems that they do photo shoots in The Towerr too! So, for the Vols fans, reset your excitement calendar to Wednesdays. 

In summary, consider this an "all's well" message, but read "well" as a relative term, of course. 

Here is Henry, still carrying some fluid but getting better;

Here is Charlie - yes, he has a collection of hats and, yes, he is sucking a pacifier for US readers / dummy for UK. It is considered good practice for feeding by mouth in later life. 

As a quick aside, that Simpsons episode is a must for all Beatles fans.

(D)

Charlie Wore a Hat

Since we spend a lot of blog words telling you about their illnesses, how about a quick picture of Charlie in a hat?

Now, back to normal programming;

As mentioned, Charlie has an infection so he got stuck a lot (hence the bruise) and his feeds are on pause again at the moment. I would describe Charlie's curve as downward last week until Friday, then up on Fri, Sat, Sun and level / down on Mon and Tue. Nutrition, nutrition, nutrition at the moment. Infection is, of course, a worry but we feel confident that the antibiotics will get it. The problem is that the infection cost him his PICC line, which affects his (you guessed it) nutrition and, maybe, the antibiotics and the stress of the infection are having an effect on his ability to process his feeding.

Henry looks a lot better. He is over a week post-op now so they are starting to talk about getting him onto a feeding routine too. First off, shed a bit more of the fluid he took on and convince everyone he is well enough. 

Nutrition, nutrition, nutrition.

(D)

David Goes Back to Work...

So this is the first day that David has gone back to work since the boys were born (we had a few failed attempts but this time he's really back). It's a tough day for both of us but we are muddling through. Here are some quick updates on the boys;

Charlie: He has an infection in his PICC line and the line will have to be removed. This is really upsetting because it's very hard to get a good line in Charlie and he will have to be without a PICC for 48 hours while they clear the infection. This means they will have to use other peripheral lines to give him his nutrition and other medicines. Charlie is going to get stuck a lot over the next day. He just had his Monday head ultrasound and he has an eye exam within the next hour. The eye exam is to check for ROP and babies hate this exam, from what I've been told. Charlie is also going to start back on a very very minimal amount of feeds today. PLEASE let him tolerate these feeds!

Tomorrow Charlie will be getting an echo of his heart to make sure there is no infection in the valves or vessels of the heart.

Henry: I walked in today and met the Dr. in the hallway. He was kind of speechless and then informed me that he just had to reintubate Henry. This would be Henry's 4th unplanned extubation. Ugh! Other than that, Henry is looking pretty good post op. He gets his eye exam today too and it's his last day of antibiotics. I will finally be able to hold both of them again today as long as they aren't too worked up from their eye exams. Henry is still puffy but slowly but surely the fluids are coming out. I'll try to update after tests results come in.

UPDATE: Just as soon as I posted this the Infectious Disease team came in and listened to his heart and requested an echo stat. They are concerned about how bad his murmur sounds and want to check for vegetation around the valves asap.

(A)

I Don't Understand

I don't understand.  I am having a lot of trouble understanding why the things that are happening lately are happening.  Why were my babies robbed their time in my womb? Why was I not graced with a full term pregnancy? A pregnancy that I prayed and hoped and wished for. Why do my babies continue to struggle and struggle every single day?  I don't understand. Why, just when we finally get comfortable with nurses and doctors we trust and love, why do they get taken from us?  Why do the hits keep coming? I just don't understand. I am frustrated and sad and worn out and worst of all, my babies are hurting and I can't fix it. I just don't understand. 

(A)

Reason

Henry and Charlie are both sick. We're worried and it's complicated. We feel like, for both of them, nobody is really sure exactly what the issue is and we have to be patient as they try to give them medicine and see if it works. 

In House, where it was always some crazy unheard of disease (and never lupus), I remember that infection was often considered to be the problem, at first, but the trap they always fell into was they gave the patient antibiotics and he got better. Ergo, infection. I mention this because I feel, at the moment, we are using the medicine to try and help with the diagnosis. I am sure that is pretty common, but it's hard for us to wait and see if we are on the right path.

However, today, Wednesday, was actually a little less about the boys and a bit more about how the hospital is taking care of Aly and me. We have been struggling a little since the move with communicating with the health care team. Is it me? Is it you? Is it us? Is it them? Today, a nurse, who was supposed to have the day off, was asked to work to cover for someone. She said yes and she was assigned both of our boys. I wrote once before that we hear some people believe things happen for a reason. At the end of a very difficult day today, I said to this nurse (with a tear in my eye) that I think that she was sent to save us. She seemed to take it well but I intend to try and explain it to her a little better one day because I know we will see her again. As well as being a nurse with great skills and knowledge, she communicated with us in a way that we hadn't felt since we moved to the tower. Today could have been terrible. It might still be, because the boys are really sick. However, the universe aligned so that someone took today off and our nurse became our nurse and that nurse was exactly the nurse we needed today and for that, (and I rarely speak for Aly) we are very grateful.

Of all the posts I have written, this is the one that I know you all know the author. A lot happened today and you all need an Aly post with more details. Instead you got...

(D)

Post-op

Charlie had the same surgery as Henry but Charlie's was two weeks ago. I wrote then that I was surprised how quickly things change after surgery. Well, we do learn and both Aly and I were prepared for Henry to get a bit worse. His blood pressure started to fall and they gave him some support medicine. Fortunately for us, Dr K., who was the fellow on our team before was working in The Tower on call. She kept us informed about how he was doing and what the plan was and that was a great help. The combination of us being prepared and us having confidence that we would get called if they were worried about anything meant we managed to make it through the night. 

Once we arrived at the hospital, meeting the doctors at rounds was a bit tricky. There are new people for us to meet and get to know. We are getting the impression that they think we are high maintenance. I should tell them that I need all the information that I ask about so that my blog is accurate!

Henry spent the morning getting worse, then sat at an acceptable level for a while but on quite a lot of support. He was peeing and, because we had been so prepared, I would say that Aly and I coped reasonably well. He looked terrible all day but both of us knew that he was going to get worse before he got better. 

Charlie started to play up a bit on Tuesday too.  He has a big belly, there isn't stool coming out of his ostomy and his urine output is dropping. We've been told by surgery to wait (X-rays are not showing blockages). Surgery telling us to wait and see - one of Aly's favourite things.

(D)