Night

If we manage to achieve anything from writing these blogs, I really hope it is giving people an understanding about how important the nurses are. Our children have literally been nursed from near death. We saw one of our Pavilion nurses today and it brought back some memories. We have a lot of nurses to thank and for a lot of things. 

One of the lighter things to be grateful for continues to be the night nurse team's photography. Night nurses have saved our boys many times and night nurses help Aly and I sleep at night. By talking about photographs, I don't want anyone to think that I don't know how good a job of nursing they are doing. However, these make me so happy, I just have to share;

(D)

On Track

Just a short post to let everyone know that we are fine. Things have continued to go well. Charlie is now getting all of his nutrition from feeds. We think he might get to come home on April 7. 

Henry is doing well too. He started feeds and we are watching how that goes. 

In excited anticipation of taking them home, Aly and I bought them a new car. It's red, to celebrate Aberdeen's cup success. 

(D)

Stripes

The poop has landed! Henry had a rough night Tue - Wed. He was restless and crying. However, he did have a poo and it is being assumed that the two things are related. 

That was the main news so, since it is Wednesday, we will let the pictures do the talking. 

(D)

Bananas

For full term pregnancies there are books, websites, friends that give advice on what you should do when and lots of info on how the baby is coming along. The last update I remember from Aly was when the boys were the size of a banana. We had made a plan for November. We were going to get the room ready, buy a pushchair (stroller) and a new car and choose the best car seat. Instead, Aly went on hospital bed rest and then gave birth. 

Things are going really well at the moment and, all of a sudden, we are realising that we are not very well prepared for what is coming next. The boys are coming home. "Next" is no longer another worrying surgery or procedure. It really does feel like a dream coming true (with all the associated superstition about jinxing it). Thankfully, the online retail industry is happy to save the day. Aly is managing to simultaneously cuddle a boy at the hospital while buying his mattress. We will be fine. It is a little scary but mostly totally fantastic. We are practically buying a new car from Amazon. 

Henry came off the ventilator today and went to unassisted room air breathing. He is borderline but, at the time of writing, he is coping. If he looks like he is struggling for oxygen, they will give him help. Being on a ventilator as long as he was has given him lung disease. We know this, it is a matter of finding out how bad it is. 

Henry also needs to poop. As of today, we are on poop watch on Henry. I had set Monday as my day when I was going to start to worry about that. 

Charlie, again, had a day of doing as we hoped. The plan with him is a slow transition to full feeds and it is going well. Today he also "latched on" and did some breast feeding. 

It was a busy day for Charlie because he also passed his hearing test. However, he slept through his audition for shepherd 3 in the nativity play.

(D)

Get Well Soon

We had a lovely day with the boys today. It was mostly a Charlie day because Henry got a dose of pain killer at 6am and spent most of the day semi-conscious. We have high hopes for Henry this week - we are really hoping that the surgery helped him. To get it recorded for them, I really need to remember to write about how that went.

Charlie entertained us all day. When we arrived he was fussy and his nurse was trying a cuddle to see if it would help. Aly then I tried the same tactic. He wasn't properly settled until he had a bottle. You see? Real baby problems! He, basically, got lots of attention all day while Henry rested. It has been 12 days since his surgery and I can't believe how well it has gone.



(D)

Caring

Henry is post-op, so we worry. However, today (Saturday), we "looked at the baby" and he looks good. Aly is better than I am at the "look at the baby" technique. This is where you take your eyes off of the worrying heart rate or blood test result and make a judgment on how sick (or not) you think the baby really is by looking at him. 

Charlie is skipping his way down the yellow brick road to going home. He is breathing well and feeding and pooping as hoped so far. 

Aly and I share the opinion that it is better if the nurse knows the boys and Aly works hard to make sure that happens. Saturday, we had a nurse that didn't know them. However, she knew of them and, by the time we arrived, she had caught up on their history. She was really friendly and regularly asked for Aly's help and input. It was a good reminder that, even though we are really happy when our "primary" nurses are taking care of the boys, there are lots of great nurses in the hospital. 

A few days ago, we left a camera up at the hospital and asked the night nurses to take some pictures. We got to know the night nurses through phone calls more than face to face but early starts or late finishes at the hospital have meant that Aly, at least, has met most of them now. It turns out that the night team are not just great care-givers but they are also great photographers. 

(D)

The Call in the Middle of the NIght

Quick update for you guys.  At 12:22 am the ringtone I have set on my phone for when the NICU calls went off.  I answered and we found out that Henry had extubated. The NNP was vague about how it had happened, saying that she thinks Henry just "coughed it up."  She assured us that he was now re-intubated and doing just fine. Naturally we were upset but we know these things happen sometimes. We decided to call our nurse early in the morning to get her perspective on what happened.  I want to say we could not be more grateful and thankful for our primary nurse who was taking care of the boys last night.  I am crying as I write this because the magnitude of what happened is just starting to hit me and I want to give her a big hug for saving my baby last night.  Apparently the NNP didn't tell us the whole story about what happened. Our nurse was alone in the pod, her pod mate was on a break. She noticed Henry starting to desat and immediately went over to inspect. She noticed water coming out of the tube area so she went in to suction, Henry was still desating. She starts giving him manual breaths. Henry keeps desating and now he's bradying. She hits the code button. Right at that time her pod mate walks in and they start bagging Henry but just can't get any breaths in. His heart rate drops more and they have to start chest compressions. CHEST COMPRESSIONS. Jesus. That's the part the NNP left out. They did compressions for about 2 minutes and our nurse assured me Henry's heart never stopped, but his heart rate was in the low 40's.  When you hit the code button everyone in the unit pretty much comes running and that's what happened. Everyone came running and they managed to suction a significant amount of secretions from his chest which looks to be the cause of all this. They re-intubated him but it sounds like it was a bit of a traumatic intubation as he has a cut on his lip. Dr. Good Question will not be happy this happened and I'm really happy he's on today so we can talk this through. We will update later on how things are.  In the meantime, thank you to our sweet and caring night primary who knows and loves our babies. I know this was hard on her and we are so grateful she told us the whole truth and that she was there for Henry. I know Henry knows her voice and her touch and if I couldn't be there to help him I'm glad she was. 

(A)

Wow, Wednesday

I promise that I will come back and write about Henry's surgery. For my British friends, I warn you now that there will be baseball analogies. Henry is recovering and seems to be ok. Too early to be sure, but the medical team are pleased at the moment. 

Charlie stole the show today, though. 123 days after being born too soon and thanks to all the efforts, help, patience and love of more people than we will ever be able to thank, Charlie is - on doctor's orders - breathing on his own.

(D)

Henry has Surgery

A very long day for us. Henry was taken to the OR at 11 and came back around 6:30. 

I will write more tomorrow but he is reconnected and has started the anxious post-op period 

More Progress

We have written before that less happens at the hospital over the weekend. However, since Charlie's body doesn't care what day it is, he continued his post-surgery progress. His incision is looking great and he was looking comfortable enough, so he was taken off of his pain medication. He also pooped and was started on feeds. The progression to feeding as we all know it will be a slow one (slowly up on milk while slowly down on TPN) and we will learn how well Charlie can take milk from a bottle. He is still on CPAP so that rather complicates things too. However, that sounds like I am rushing things. We are patient.

However, it is hard not to get excited. Both of our boys have a long, long road ahead of them. We know that long term effects of their start in life are almost certain. For now, though, we are really enjoying seeing how well Charlie is doing and how close he is to that big step - coming home. It's several weeks away still but he is leaping over those hurdles and we are loving it.

Henry has his surgery on Tuesday and the liver problems that he has had are likely to make his post surgery time a little more complicated. Poor Henry. However, he really needs to be put back together and he enjoys milk so much we just hope that he has a successful surgery so that he can get on with feeding and growing.

We had a great weekend with them. Lots of holding - including Aly doing a double-hold while I watched Aberdeen win the first of many trophies in their lifetime.

They are both on CPAP and both hating it. We hope that their lungs are maybe ready to fly solo soon (Henry needs a spell on the ventilator for his surgery first). 

(D)

Next Step for Charlie

Charlie was put back on the ventilator for his surgery (same will go for Henry on Tuesday) and today he had that tube pulled out and put back on CPAP. 

This means that Charlie has his intestines all reconnected and he is not on a ventilator. 

Breathe, eat, poop (I said shit before but I am trying to clean up my language) are the tasks that need to be mastered so another good step for Charlie. 

(D)

Henry Developments

Today, Thursday, started off with a scare. For a short time, we thought Henry's bilirubin number was up to 8 but it turned out that 8 was the total rather than the conjugated number. In reality, his 3.8 had become 4.3. Not good news but not a crisis. Nevertheless, a plan is in place and Henry is having surgery on Tuesday. The successful dye test and the uncertainty about his liver seems to have changed people's minds and we are going a little earlier than we were told before. I like this change. 

Charlie is doing well. He is on a lot of pain medication but all of his vital signs are good. 

Henry's tolerance of CPAP has ran out. He has worked out several techniques to get it off. Here is the lean back push up method. 

(D)

Success

It is very late. Charlie's surgery was a great success. Everything is reconnected and no intestine was lost. The area where he perforated looked great - healed on its own. This is the best possible outcome. 

In other news, Henry had a dye study that we are waiting to hear the final read on. Preliminary reports are positive. 

Their intestines have been such a source of problems but, today at least, they look good. 

(D)

Oh, liver!

My communication has been patchy at best over the last week or so but if you have been keeping up, well done. If not, or for new readers, I have been concerned about Henry's liver. Charlie and Henry both have had TPN-associated cholestasis, or liver disease caused by getting their nutrition intra-venously. Omegaven is part of what they get and it works as a treatment for the liver as well as providing calories. However, because it is not FDA approved, the boys had to have signs of liver failure before they were allowed to get it. One of the ways of measuring liver function is to measure conjugated bilirubin and it was elevated levels in the conjugated bilirubin that were the marker to be allowed the Omegaven treatment. Charlie's level got above the threshold first and the Omegaven did as promised and he has been scoring 0 for weeks now (i.e. no liver disease). As I mentioned, Henry's number went up unexpectedly last Monday after 8 weeks of being on Omegaven and it upset me. What I struggled to get around to explaining last week was that the other way of treating babies with TPN-associated liver problems (apart from the non-approved Omegaven) is to move, as soon as possible, from parenteral nutrition to enteral nutrition (nutrition through the more traditional method of mouth-stomach-intestines-poop!). So, for Henry, this means surgery. 

However, the surgeon wants to wait so that the intestines have more time to grow and heal. 

This was last week's issue. If the liver isn't getting better on Omegaven or, worse, is getting worse, is it better to wait and risk the liver than go early and risk the intestines? Last night I talked about worrying that waiting was doing more harm than good. 

This morning, we are up again (from 1.8 to 3.8 in case anyone knows the numbers. 2 was the Omegaven threshold). Cue Fitzpatrick family tailspin. 

However, I can report tonight that we are calm. Conjugated bilirubin isn't the only liver test in town so Henry got a PT and a PTT. You will all be relieved to hear that he has an INR of 1.3. My interpretation of this is that, although his liver isn't cured, it is still doing its job sufficiently at the moment. We will take sufficient at the moment. The surgeon wants to wait until March 24. Maybe next week his Billy will go down...

At this point I feel I should write a separate post called Regarding Charlie. This is a huge week for young Charles George Fitzpatrick. He has surgery tomorrow (Tuesday) morning. This surgery will reconnect his stomach and his butt. Reunited!  I'm being light hearted but it is very worrying. It is a big surgery for a little boy. However, it is a really big step in the direction that we really want him to be stepping. Frankly, the boys need to eat, shit and breathe before they leave the hospital. Reuniting is important. 

Charlie un-swaddled his arm to say hi. 

I think I may be asked to pray again tomorrow. In case it isn't very obvious, that's not my thing. However, I really don't want the surgeon worrying about my immortal soul, so I am all set for another chat with his Heavenly Father. I really have no issue with asking everyone, heavenly or not, to give strength to Charlie and his surgeon. 

(D)

40 Weeks

I mentioned earlier this week that March 7th was their due date. I try hard to avoid letting a calendar date or some symbol affect my mood but I can't deny that this one had me feeling reflective and not in a very positive way. I know that Aly was affected too. 

To catch you all up, Thursday we had a meeting with doctors and the surgeon. It was agreed that Charlie would have his surgery on Tuesday and before that they would do a dye study to see if the intestines below the part he has been using are ok. Henry's situation was a longer discussion. I was / am / was / am - you choose - concerned that waiting for Henry was doing more harm than good. By waiting, I mean waiting to have the next surgery. You see, Henry has not been getting much nutrition from anything other than his TPN. I'll be honest, I have let it get late again and, although I want to write this down for Henry, I am not doing it tonight. 

So, a summary instead;

Thursday; meeting

Friday; dye test for Charlie; result is excellent. A clear passage frome down below up to the stoma

Saturday; nice family day of holding and relaxing in swings

Sunday; cranky, high maintenance babies - are you wet? Are you hungry? Are you hot? Almost - almost - like real life. 

(D)

Weekend

Thursday and Friday were, actually, days that need recorded. However, it is late. I will write the catch up over the weekend. 

Henry spent a large proportion of Friday in his swing... Looking a bit like a homeless person. 

(D)

March

40 weeks would have been March 7. 

It is all a bit difficult at the moment. We hoped to have a clearer path by now. 

Taking some old advice, here is some joy;

(D)

Ladies and Gentlemen, We Have a Double Hold!

Today was just about as good as a day can get in the NICU. For the first time ever, I got to hold both of my boys at the same time. I wasn't sure how long they would last in a double hold situation, this was new territory for all three of us. Three and half hours later I put them back only because I needed to pump, hadn't eaten lunch and it was time to go home for the day. The boys loved every minute of it. They even held hands for a bit which melted my heart. I have waited 109 days to hold both of my babies at the same time. There were days early on when we weren't sure if that would ever happen. Today was such a victory in so many ways. Special thanks to our nurses for being so patient getting the three of us set up, for taking a million pictures and for bringing me water to sip boxer style since I couldn't move enough to grab my water bottle. We were even able to FaceTime David for a little bit so Daddy could be part of our milestone. These pictures tell the story of our day much better than I can.
(A)

Billy

There have been days (or nights) when writing a blog post has been a good way to get things off my chest. There have been times when I have enjoyed just thinking and writing about the boys. There have been occasions where I just wanted to record the day for the sake of historical records. Tonight is another of the historical records nights. Henry's conjugated bilirubin went up when it was (and was supposed to be) trending down. This is what the magic potion Omegaven was supposed to be taking care of. I am recording that the news upset me but it doesn't feel better to write about it. Instead, it feels like I shouldn't. Like I should just let it pass and see what the level is next week. If it's down, today was a silly, over analysis / over worry. So, readers, please take this info and join me in patient under-reaction.

Other than the blood test results, both boys had another eye exam and the results were good. So good, in fact, that they are now on bi-weekly rather than weekly exams.

Also, both boys have been breathing well on their CPAP.

(D)

Where did the weekend go?

March means a change in the attending doctor for the boys. Dr Newtotown was great so we were a little anxious to hear who we were getting next. It is a big hospital so there are a lot of doctors in the mix. We were really happy with the news that Charlie and Henry were going to be looked after by Dr Goodquestion again. 

Lots of baby holding today but nothing to report on health. The boys are doing ok.

(D)