Day 42 - Nicholas is HOME!!

After 6 long weeks in the hospital, Nicholas was finally able to come home! I meant to update this much, much sooner, but things have been super busy since we've been home. Nicholas still has to be on 3 heart meds for now, but hopefully it's not long term. He also has to be on the special formula, Portagen, for 6 weeks and then we can go back to breast milk.

We have a follow-up appointment on Wednesday (9/22) with his cardiologist. We will also get an x-ray done before that appointment to make sure there is no fluid build-up in his chest cavity. I am pretty nervous, but I think everything is going well. Nicholas is very smiley and happy and content. I love my baby boy and am beyond thrilled to have him back home with us.

Day 36 - 1

I've been awful at updating this thing.

Yes, we are still here at the hospital. Not a whole lot is new. Nicholas STILL has the right chest tube in. They repositioned it yesterday morning because the fluid was mostly leaking out into the dressing (and onto the bed!) instead of going in the tube like it is supposed to. So now we just wait some more until they determine the output is low enough to get it out altogether.

He is completely weaned off of one of his heart medicines, Milrinone, as of today. The rest of his meds they have converted to where he can take them by mouth or in his feeding tube. Now the only thing they need the central line for is to draw blood for labs.

We are trying to get him to take his formula out of a bottle now so that he doesn't have to come home on the feeding tube. I went to Whole Foods over the weekend to try to find more options to add to the formula to make it taste better. While I was gone, Josh was able to feed Nicholas a few bites of sweet potato baby food. Then a short while later, the doctor decided she wanted to try giving him a bottle of diluted apple juice to see whether it was the bottle he didn't like or the formula. He did drink 2 ounces of the apple juice, so it's definitely the formula he hates. When I got back from the store, Nicholas had a few red splotches on his face, which quickly turned into hives all over his body. Poor baby. Now we are not sure if it was the sweet potatoes or the apple juice that he was allergic to.

At Whole Foods I bought some cinnamon sugar and he actually seems to not completely hate the formula with that in it. He drank some yesterday for Josh, but then promptly threw up. I think he may have just drank it too quickly though. This is a learning experience for all of us.

Day 32 - 1

Nicholas had a great day today.

Last night be did have a bit of output out of his chest tube (about 35 mL). But today he's only had about 5 mL out. The doctors said his chest x-ray this morning looked great though. The side without the chest tube is actually clear now! He's been pretty happy and smiley all day. He really seems to be feeling a lot better. His heart rate has been down a lot from what it's been, probably because he is feeling better. It's just so good to see him happy.

We tried to give him a bottle today. We put some grape concentrate in the formula and I think it helped. He didn't drink much, but he did drink some (about a 1/2 ounce) and he wasn't gagging or spitting it up or anything. He actually seems to be tolerating the formula much better now. I just hope he really starts eating out of the bottle so we don't have to take him home on the feeding tube.

Day 31 - 1

Last night and all day today his output has been minimal! I don't want to get my hopes up too much, but who am I kidding, they are way up. Hopefully the next day or two is the same and he can get the chest tube out. Then I could hold him and cuddle him. That would be amazing!

His fever seems to be gone. His heart rate also seems to be lower now, which is good. He does still seem pretty gassy and cries in pain from that. I'm not sure if that is because of the formula or what. He was gassy while on the breast milk too though.

Day 30 - 1

I forgot to mention that yesterday Nicholas got his second tooth! So cute!

This morning, they had to change his central line because they could not draw blood out of it. They had adjusted it the other day because it hadn't been working and it was a bit better, but I guess it wasn't working again. They are putting him on a low dose of blood thinner now to hopefully keep the line open. Poor guy has been through so much.

When I got here this morning, I looked at his output. Josh told me on the phone that it was 99 mL at 7 AM. When I got here around 8:30 AM, it was at 145 mL! That is a huge jump in such a short time. I am still so upset that the breast milk has set him back this much. I know that we can't go back and change it, so no sense in dwelling on it, but I can't help it.

Day 29 - 1

Sorry for the lack of updates.

Yesterday was pretty upsetting. After I got to the hospital from dropping Luke off at school, the nurse told me that they were putting him back on the formula. They said his drainage increased quite a bit overnight while on the breast milk. I was so upset. I had expected to come in and them to say they would be taking his chest tube out. I expected we would be able to go home soon. I expected I would get to nurse him again any day now. But no. We've went backward once again.

Apparently his chest x-ray yesterday also showed that some fluid was building up on the side without the tube. Not quite enough yet to have to put the tube back in, but they will have to monitor it to make sure.

This mornings x-ray showed that the fluid was about the same as yesterday on the side without the chest tube, so they were still okay with not putting it back in. Hopefully we won't have to at all. But we'll see what the morning brings. His output during the day today was quite a bit higher than it had been before we started that breast milk.

I just hope that it stops once again on it's own. I do not want to end up having to do the pleurodesis. I thought that scare was behind us, but now we may be facing that again.

Day 27 - 1

First the good news. Nicholas has not had increased chest tube output since starting back on breast milk. I am so relieved! The x-ray shows that his left side is clear (the side without the chest tube). The right side still has a small amount of output, but I think it's getting low enough now where they will be able to take the chest tube out in the next day or so! That means when he comes home, I can nurse him again :)

Now the not so good news. He has a fever and is really not feeling well. Last night it spiked up to 103. This morning he threw up dark green, which the nurse said looks like bile. I feel so badly that he can't seem to catch a break. They have been giving him Motrin, which seems to make him feel better. I just hope whatever this is goes away soon. The doctor did say that a gastrointestinal bug is going around, so she thinks that is probably what Nicholas has. They took his blood late last night to see if he has an infection, so we should know the preliminary results of that tomorrow morning.

Day 25 - 2

Quick update because I must get some sleep.

Nicholas could not tolerate the formula again. He was throwing it all up. So this morning they decided to try giving him breast milk. Full fat breast milk. Then we had to wait and see if his output increased or turned more milky. I'm not really sure where we stand. The output may have increased slightly or stayed about the same, and I can't tell if it's more milky or not. So they are just going to keep him on the breast milk overnight and see how the output is by morning. They will take a chest x-ray in the morning and see if any fluid is building up.

They had to take his left chest tube out today because the stitch was pulled out and it was not in there right anymore. I have a hunch how that happened (nurse), but won't get into that right now. So if he does have any fluid on the left side from the breast milk they will have to put a new tube back in.

Day 25 - 1

Nicholas is fine, but I just wanted to give a warning that the story below talks about a child's death, so you don't have to read it if you don't want to.

Last night was an incredibly difficult night. Nicholas had finally fallen asleep just before 11 PM. I laid down on the couch to try to relax and go to sleep. A few minutes later I hear an announcement over the intercom "All available nursing staff to Room 112". Then I see people running down the hall toward that room (it's right near our room). At the same time I hear a mama sobbing and screaming Oh God, Oh God. My heart is beating out of my chest. I hope with everything I have that her baby is okay. The sobbing continues for a long time. Still more frantic rushing around by the hospital staff. I can see the looks on some of their faces and I know it's not good. Then I hear No God, No. And gut-wreching, heart-breaking sobs. I wasn't sure if she had lost her child until I saw them hours later, heading down the hall, distraught tear-streaked faces, carrying a box with a teddy bear in it. My heart is breaking for that family. No one should have to go through that.

I did not sleep all night. I felt fear, panic, anxiety, sadness. I felt I needed to make sure Nicholas was okay at all times. I don't think I will ever be able to forget the sound of a mother watching her precious baby die.

Day 24 - 1

I am happy that things finally seem to be looking up, but I won't breathe easy until he is home, and even then I will probably be nervous for a while.

His output on the left side has only increased 10 mL in 48 hours! Perfect. Our bodies do make a small amount of fluid in the chest cavity regularly, so 10 mL is normal.

His output on the right side is still a bit too high (100 mL in 48 hours), but it's much better than it was. So I'm just hoping that it continues decreasing.

The nurse just told me that when he wakes up from his nap, I can try feeding him! The nasty formula, but still. I am a bit nervous though because this will also test whether his output increases with feedings. Please let him take the formula and not have any increased output. Please. Please!

Day 23 - 1

His output decreased even more overnight!

One side had 0 mL output all night! The other side only had 25 mL. Previously he was having output of around 300 mL total per 24 hour period.

If this continues for another day or two, he can get his chest tubes removed! Then he will be well on his way to coming home.

He is getting a blood transfusion right now though because his iron is really low from them having to take blood every day for labs.

Day 22 - 1

Nick's chest tube drainage has significantly decreased!!! I didn't want to post earlier because I wanted to give it some time before declaring that, but it's been over 24 hours now. I mean we are not in the clear yet, but the drainage is less than 1/4 of what it has been. So I am keeping everything crossed that this trend continues and he will not have to have the pleurodesis after all.

Today was the day the surgeons wanted to do the pleurodesis. Before we even knew that his drainage decreased, we planned on telling them this morning that we would like to hold off for a bit longer. But I didn't even have to say anything this morning because his surgeon came in and said 'well if I knew all it took to decrease the drainage was to put him on the schedule for surgery, I would've put him on the schedule a long time ago'. So they just want to wait and see what happens now. At this moment I feel such a sense of relief. We need another good day tomorrow.

Day 21 - 1

I can't believe Nicholas has been in the hospital for 3 weeks now. When we first found out he had to have surgery and would be here 3 days, I thought that was such a long time and would be so hard. Never could I have imagined it would've turned into this. I miss Nicholas being home so much. It's sad when I go home because there is his swing not being used; his empty play mat; I get out of the shower and usually see a smiling face greeting me from the baby papasan, but not now. I so wish he could come home already.

His chest tube output still has not decreased at all. Tomorrow is the day they want to do the pleurodesis. We are at least going to put it off a bit. We are just not ready to take that step yet and the surgeon said putting it off a few days wouldn't be a big deal.

I did get a chance to talk to his surgeon, Dr. B (who I really like), this afternoon and got a lot of my questions answered. I do feel a bit better about things. When I talked to Dr. J (another doctor) last week about the pleurodesis, she is the one who told me if the pleurodesis doesn't work that there is nothing else they can do. So this whole time since then, I've basically been having a huge anxiety attack. Well Dr. B tells me this afternoon that if the pleurodesis doesn't work, then they would try a thoracic duct ligation. Or they could possibly do another pleurodesis. So the pleurodesis isn't our last ditch effort as Dr. J made it seem.

Day 20 - 1

I have spent the whole day doing research. Research on chylothorax treatments, on pleurodesis, on anything I could find that is relevant to Nicholas's situation. I've come up with a long list of questions to ask his doctors. I feel better in that I have more knowledge now and know things to find out. I'll talk to them about everything tomorrow.


I did also email the cardiothoracic surgeons at Children's Hospital in Boston about getting a second opinion. I have no idea how that works since they can't actually see him in person. But we'll see what they say.

Day 19 - 2

I think we are leaning towards telling the doctors that we want to wait on the pleurodesis. I have asked his surgeon about the long term effects of having this done (as it permanently sticks your lungs to your chest wall, which can't seem like a good thing) and she said he could still be an olympic athlete. She said the only thing that it would interfere with is if he ended up having lung cancer it would be harder to treat. But she said if he ever got pneumonia, it would actually be a benefit because pus couldn't accumulate around the lungs.

If they say chylothorax almost always clears up in 4-6 weeks (which is why you have to be on the low-fat diet for that amount of time), then we should just be a couple of weeks away from that, since he's already had this for almost 2 weeks.

When both surgeons and his cardiologist are here on Monday, I plan to have them list for me the benefits/risks of doing the pleurodesis vs waiting it out. I just don't feel like I am convinced yet to go ahead with the pleurodesis.

I am really hoping that this output just suddenly stops before Monday and that we don't have to worry about this at all. I even promised Nicholas $1,000 to his savings account if he would just stop this output asap. I'm not sure if they take bribes yet at 6 months old.

Funny story, last weekend Luke spent the night at Josh's parents house. Luke was telling me how they stayed up until after dark so they could look for shooting stars and make wishes. Then he said something about wishing that Nicholas was all better and could come home. I thought, wow, what a sweet, thoughtful boy I have raised. And I said to him (while beaming with pride inside) 'oh that was your wish?' and he said "NO, that was grandpa's wish, my wish was that I could get all the star gates opened in Mario'.  :)

I am totally missing my boys tonight. Luke is spending the night at grandma and grandpa's tonight (as he usually does on Saturdays) and I am just staying home tonight. Josh is up at the hospital with Nicholas. It's hard to have both of us up there overnight because someone (Josh LOL) has to sleep in a chair if we are both there.

Day 19 - 1

I spoke to his surgeon this morning. She said the echocardiogram did show an increase in pressure in the right ventricle. The 2 heart medications they put him on yesterday are supposed to help with that. She feels that the increase in pressure could also be the reason he is having so much chest tube output. So we are hoping that the Octreotide along with these 2 new meds will help to decrease or stop the output.

If not, they are still wanting to do the pleurodesis on Tuesday. I feel a bit conflicted about that. I just don't know what is best. If we wait longer, the drainage might stop on it's own. Or it might not and then we'd have to do the pleurodesis anyway and we've just increased his hospital stay and chances of getting infections and malnourished.

I just wish someone could give me some sort of guarantee.

Day 18 - 1

I just didn't feel up to writing in the blog yesterday.

I was so hopeful that things were going well. But this chylothorax has really become quite an issue. The Octreotide has not seemed to slow the output at all, if anything it's increased. They decided they wanted do an echocardiogram because they thought that perhaps a heart issue was contributing to the large amount of fluid output. They went ahead and put him back on the Milrinone (one of his heart meds). They also started him on Viagra. They are hoping if there is an issue with his heart these medications will help fix that and therefore slow down the fluid output.

They said if the output has not decreased significantly by Tuesday that they want to do the pleurodesis. They now say that they would do the pleurodesis on both sides at the same time. It is a very painful procedure and would cause him to not breath on his own because of the pain, so he would have to be put back on the ventilator. It causes the lungs to stick to the chest walls (permanently!). That is supposed to stop the fluid from accumulating. But it can also not work and the fluid could begin to accumulate around the heart or in the stomach instead. That is a very scary prospect because if that happens there is no other surgery they can do to stop the fluid.

Day 17 - 1

Nicholas seems in good spirits today. Although since he's not able to eat anything, he does get a bit fussy now and then hoping someone will feed him.

I'm not sure the Octreotide is working. One of his chest tubes had more output over the past 2 days. The other one however had almost none. I guess it is good if even one side clears up because the surgeons told me that they can only do the pleurodesis one side at a time. But I'm still keeping my hopes up that it doesn't come to that at all and that the drainage completely stops soon. I am so ready to have my baby home.

They put him on another heart medicine, Digoxin, to lower his heart rate. I asked about this since his cardiologist didn't seem to be concerned about his heart rate. But the doctor that put him on it said it is only temporary because he thinks if his heart rate is lower, it may help to clear up the chest tube drainage.

Day 16 - 2

This morning the doctors came in with a new plan. They are starting him on a medication called Octreotide that is supposed to help stop the chest tube drainage. While he is on the Octreotide he can't have any food in his stomach, so he'll be back on the TPN. I suppose that's fine since he couldn't seem to tolerate the formula anyway. They said once he's off the Octreotide (in 5 -7 days) if the drainage is stopped, they will put him back on breastmilk. I am surprised at that because I thought it was important not to give them any fat for 4-6 weeks to make sure it was completely healed. So while I would love for him to go back on breastmilk because I think it would help him, I am also concerned. I did ask the one doctor about this and she said it's because he couldn't tolerate the formula and that it should be fine once the drainage is stopped. I still plan to revisit this with the other doctors.


I just hope the Octreotide works. If it doesn't, he will have to have pleurodesis, which is a procedure that causes the membranes around the lung to stick together to prevent the buildup of fluid in the space between the membranes. It would require him to have to go under general anesthesia.


And in good news, his first tooth just popped through this morning!!

Day 16 - 1

Well he threw up 4 more times last night. This formula just does not agree with him at all. He was just miserable. And he (and I) have hardly gotten any sleep between the throwing up and them coming in to give him breathing treatments, do x-rays, the machines beeping because medicine ran out, etc. How is he going to get better if he can't eat and can't sleep? I feel like I'm completely letting him down. He looks at me as if to say help me mommy and there I stand rubbing his head, not making anything better.

Day 15 - 1

So the strawberry Nesquik trick didn't last long. He has refused to eat anything since last night. They are just feeding him through his feeding tube now. I really don't know how to get him to eat this formula. I wish he could understand that he has no choice but to eat it if he wants to come home.

He's thrown up 2 or 3 times today. He's just not feeling well. I think the formula does not agree with him. He's gassy and I think he has acid reflux. They've started giving him gas drops and Zantec. He'll be sound asleep and then just waking up screaming in pain. It's so hard to see my baby like this and not be able to help him. I can't even hold him. The nurse tonight went and asked the doctor if I could hold him for a bit, but the doctor said that with the chest tubes, it's just not a good idea. I haven't held him in almost 2 weeks now :(

Day 14 - 2

So he still absolutely refused to eat any formula today, even with the Splenda. They had to put his feeding tube back in :( We still needed to find a way to get him to eat it. They suggested we try putting some strawberry Nesquik in it to see if he would eat it that way. I think it's working. He's already guzzled down 2 bottles with the Nesquik. I already feel bad enough feeding my baby this low fat formula, but add the Nesquik on top of that. But he needs to eat and we have no other option but to feed him this formula. At least it's temporary. I just hope we don't have issues going back to nursing after all of this.

Day 14 - 1

The doctors said that Nicholas is anemic now. His iron has been going down each day as he can't make enough blood to replace all that they take. They are putting him on a supplement and hoping that helps. Otherwise he may end up needing a transfusion. I'm hoping we can avoid that.

Day 13 - Happy 6 Month Birthday!

Nicholas turned 6 months old today! I never thought we would still be in the hospital on his 6 month birthday. But I am so thankful he is doing better.

This morning I got to talk to his cardiologist. She said that she thinks that the only reason his heart rate was so high is because of withdrawal symptoms from the Fentanyl. She said she does not think there is any issue with his heart at all. I asked if he would still need to continue on the heart medication for a while as the other doctor indicated; she said no and that he would be completely off of it by tomorrow!

They did say that he still has drainage from his chest tubes. Not nearly as much as in the beginning, but still significant. It has not decreased in the past 3 days. We will have to be here until this clears up.

He hates his new low-fat formula. Refuses to drink it. The nurse ended up putting some Splenda in it to help with the flavor. That worked for a while, but now he refuses to drink it even with the Splenda. It's been all day and he hasn't eaten a thing. I really wish he would take it because otherwise they will need to put his feeding tube back in. And obviously he would have to be eating to come home.

Day 12 - 1

Nicholas looks so good today! He was able to get his oxygen nasal cannula removed. He also had his arterial line removed, only because it was bleeding all over, but still, they are okay with leaving it out. So he has both hands free now and can chew on them all he wants. He is a much happier boy!

They are weaning him off of his pain medicine, Fentanyl. They think that perhaps his increase in heart rate also had to do with withdrawal symptoms. So now they are giving him methadone to help with that.

Day 11 - 2

The doctor finally came in 3 hours later to talk to us about the high heart rate. I really can't explain it very well in words because she just showed me a drawing to explain, but basically he has a small indentation in part of his heart and that causes his heart to have to beat faster. She gave him more of the heart medication that he's already been on. She said that he will still need to be on this medication a while after we go home. As his heart grows, the indentation should become less and less of a factor, so he should not have to be on the medication forever.

Good news is that his x-ray came back clear. I was a bit worried that fluid might be building back up in his chest cavity since he's hardly had any chest tube drainage today. But looks like the drainage may be almost stopped. I can't wait until he gets these drainage tubes out. Then I'll get to hold him again!

Day 11 - 1

I meant to update earlier, but this morning everything was looking good. His drainage from his chest tubes has been pretty much non-existent all day. I even got to give him his first ever bottle today. It was nice to feed him and he even paused and looked up at me and gave me a big smile, as he always did when he was nursing. It was so sweet.

Later this afternoon his heart rate started going back up. By this evening, it was back into the 180's. Early on after his surgery it was in the 180's, so they gave him a med to lower it (and also to get his heart rhythm back to normal). He is still on that med, yet his heart rate is just as high again. I told his nurse about it and she ordered an EKG and chest x-ray stat. They have already done those, but I am still waiting for the doctors to come talk to me. I am just shaking waiting here. I'm really scared. Just when I was able to relax a bit.

Day 10 - 1

We had yet another surprise this morning. The nurse came in to give Nicholas a new medication. I asked her what it was and she said it was an antibiotic because his blood culture came back positive. I really wish the doctors would come and tell us things like this. So I don't know if this means he has an actual infection in his blood or if they just found bacteria in it and it's not yet an infection. He has no other symptoms of having an infection. But still, this makes me a bit nervous.

Also she started him on Reglan. She said it was to prime his gut so that he would be able to have food again by mouth. For the past 3 days he's just been getting his nutrition through an IV. I don't know how long he needs to be on the Reglan before he can eat again. They still have not given him anything to eat.

Tonight I'm staying with Luke and Josh is staying at the hospital. Josh and I are going to start taking turns staying with Luke overnight. I don't like to be away from Nicholas but my big boy needs me too. Also I could really use to get a decent nights sleep.

Day 9 - 1

He just got his breathing tube out and seems to be doing well without it. Hurray Nicholas! I can now see his beautiful face again. His face looks better too on the lower dose of Lasix. His eyes don't look sunken in anymore and his cheeks have a little bit of chub on them. :) He's making progress!

Day 8 - 2

Here is the latest update.


He will most likely be on the low-fat formula, Portagen, for 4 to 6 weeks. I wonder if they supplement with anything else because a simple google search says it's not nutritionally complete. They said that the duct could be healed before that amount of time, but you don't want to test it by giving it fat because then it sets you back. By the 4 to 6 weeks, it should definitely be healed and then he can go back to breastmilk. I suppose I'll have plenty stocked up to give him.


I was trying to get an idea of how much longer he might be here in the hospital. I asked his nurse and she said he will be here at least another 2 weeks. Luke is going to hate me. Okay, I know I'm being dramatic, but still. I miss him and I'm sure he misses me, even if he expresses that as not wanting to see me. I was really looking forward to spending this time with him the last week before he starts school full time :(

Day 8 - 1

Well, it looks like it may be tomorrow now that he gets his breathing tube out. I guess they want an air space around the breathing tube in the esophagus, so they know that when they take the breathing tube out that the esophagus isn't going to constrict and block his airway. Nicholas's doesn't have that air space. He said it could be due to inflammation, so they are giving him steroids today for that. It could also just be that the breathing tube is filling up all the space because his esophagus is not that big.

And the whole chyle thing, ugh. I guess now his output from his chest tubes is looking a bit milky. They are thinking that since they increased his feeds overnight, that his body was able to handle the small amount yesterday but not the larger amount. So I think they are going to put him back on the low-fat formula. They said in order for it to heal that it can't be producing the chyle.

Day 7 - 3

Finally some good news! He does not have chylothorax! That means that he can have my breastmilk again. Now he will get the nourishment he needs. I am so happy about this. The fluid around his lungs is serous and should go away on it's own, as far as I know. They will have to keep his drainage tubes in until that clears up though.

I think he is still on track to get his breathing tube out tomorrow too. Now we just have to make sure the e. coli goes away and then we will be back on track. Maybe good news is the new trend. Let's hope!

Day 7 - 2

They found e. coli in his lungs. He's on an antibiotic for that now. Please let it clear up quickly and easily. We need something to go our way.

They are still weaning him off the breathing tube. I think he should be off of it tomorrow!

Day 7 - 1

The doctors spoke with me this morning. They were hoping that once they got the fluid around his lungs drained, that that would be it. But the fluid continues to accumulate. They are puzzled. They said that it's possible that it may not be chyle. That would be great because that would mean they could feed him my breastmilk again and he could get some nourishment in his little body. But on the other hand, if it's not chyle, does that mean it's something even worse/harder to treat? So I don't really know what to hope for. But I guess it is what it is.

It's so hard to see him like this. He's completely lost his chubby cheeks. His eyes are sunken because of the loss of fat.

ETA: The doctor said that the sunken eyes are not due to fat loss, but due to less fluid in his body. They have him on Lasix to dry to drain the excess fluid around his lungs, which also dries up fluid elsewhere in the body.

Here he is this morning.

Day 6 - 3

The doctors decided that it would be best to go ahead and put a tube in the other side to drain the area around his left lung. They said that both lungs really need to be clear for him to get off the ventilator. Also having all that fluid just sitting there puts him at greater risk of infection.

Luke is here visiting Nicholas now. I am getting ready to take Luke to a birthday party. I miss spending time with him. But it's hard to be away from Nicholas.

Day 6 - 2

Today we have an awesome nurse. I think she is the best yet. I'm so, so glad I talked to the head nurse yesterday so we have someone good today.

So that was the good news. The not so good news is that his x-ray this morning was not good. He already has a lot of fluid on his lungs again. They are now thinking he has some sort of infection. They took some mucus from his lungs to test, and also blood to test for a blood infection. His mucus looked a bit yellow, so that's not a good sign. We won't have the results of the cultures until at least tomorrow.

I was so hoping today would finally be a good day. Every day has just been one setback after another. Saying I am scared would be quite an understatement.

Here he is today, my sweet baby boy. He has to have his hands tied up so that he doesn't pull his tubes out.

Day 6 - 1

I think I made it sound like the chylothorax was not that huge a deal, but I think it is huge. Babies that have this can become malnourished because their little bodies need all that fat; breastmilk is around 40% fat. Obviously a malnourished baby would have a hard time healing. He'll have to be in ICU and have his drainage tube in until this can resolve, which from googling (I know, I know) could take weeks or months even.

Quote:

 

Chylothorax is not uncommon following congenital heart surgery. It often results in prolonged chest tube drainage and hospital stays. Due to the feeding difficulties, it often results in malnutrition and the need for central hyperalimentation. In addition, it results in a depressed immune system with the possibility of subsequent infection. Chylothorax can be a significant contributor to post-operative morbidity and mortality.

I was so hopeful that once he was off the vent and I could hold him and nurse him, that my touch and my milk would speed his healing. I feel like babies need that human touch and all I can do is hold his little hand. He is used to me sleeping in bed next to him every single night. And I am used to that too. This is just breaking my heart and I cry as I sit here typing this.

I wondered about skimming breastmilk so he could tolerate it. I found a LLL article about a woman who went through this same thing with her baby after open heart surgery. Basically just skimming the milk would not get enough of the fat out. They actually bought a centrifuge to spin her milk for her baby, which ended up saving his life. If anyone wants to see the article it's here.


Also I have been super happy with all of the doctors and nurses until our day nurse yesterday. She seemed only to give him his meds AFTER he was super upset. She should have anticipated and gave it to him before that point like all the other nurses have done. She seemed flustered all day and like she never knew what to do first.

During her care, his drainage tube actually came apart!! After he was extremely upset (not actually crying since he can't cry with his breathing tube in, you can just see the distressed looks on his little face  ) I kept hearing this odd noise, but figured that must be what his new drainage tube sounds like. So she comes in and gives him his meds after that. Then he calms back down and goes to sleep. Hours later he is up again and extremely upset again since she is not managing his meds correctly IMO. I still hear that noise this time. When she comes in she uncovers him to check his diaper and notices that the drainage tube is apart! There is chyle (the drainage from his tube) all over the bed  The noise I heard was the tube sucking air. I was sick, just sick.

She becomes super flustered. He is still so, so upset. She freaks out and is trying to fix the tube. Once that was fixed she was going to change his diaper which apparently was super wet. But then realized oh yeah, his meds. Ugh. Because of this tube coming apart, he ended up having to have 3 additional x-rays because they had to set the tube again. They had to undo his sutures and now there is blood in his chyle (they save the chyle so they can measure the output and now it is red).

I talked to the head nurse and she won't give us this nurse again. Still makes me realize I need to be more active in his care and tell them what I think it is he needs, not just assume that they will know.


I know this is kinda gross, but this is the chyle that they drained from his right side chest cavity. It is enough to fill up a 16 ounce water bottle! I can't believe all that was inside him. No wonder he was having a hard time breathing and was so uncomfortable.

Day 5 - 1

The medication they gave him for his abnormal heart rhythm worked. He now has a normal rhythm, which is a big relief!

They took an x-ray this morning to see if the fluid on his lungs/chest cavity drained with the new medication. It turns out his left side was clear! But his right side had as much or more fluid than it did yesterday. So they decided they needed to put a tube in there to drain it. Putting the tube in went fine. But they found that he had chyle, which is basically a fatty substance, accumulating in his chest cavity. Apparently this can happen from a vessel getting damaged during open heart surgery. This means that he cannot tolerate food with fat in it. Since breastmilk is so fatty, he cannot have any of my breastmilk that I've been pumping for him (and I can't nurse him)  It was the one thing I felt that I could do to help him get better. He is currently on low-fat formula. We are hoping he heals up quickly and is able to tolerate fat again, but I guess this could also be a permanent condition.

He'll still be on the breathing tube and in the ICU for a while longer it seems.

Day 4 - 1

Earlier this morning his heartbeat became irregular. More like
^.^_^.^_^.^_^.^_^.^_ instead of
^_^_^_^_^_^_^_^_^_

I don't know for sure what this means. They said since his other signs (blood pressure, respiration) were normal that they were not hugely worried. The nurse said lots of people live with abnormal rhythms like this. I'm not going to google it.

And there is still fluid on his lungs and it's not really improving. They are going to try a different medication and hope that helps. The doctor said it didn't really add up that his echo showed no obstruction, yet the fluid is not clearing out of his lungs and his heart rate is high (upper 180's). I don't like when the doctor seems baffled.

I am so so worried and scared. Trying my best to keep it together though.

Day 3 - 2

They finished the echo and found no obstruction!!! What a huge relief! They are giving him a medication that should help to drain the extra fluid. Hopefully that works or they will have to put a tube in thar to drain it.

Day 3 - 1

This morning brings about more anxiety. The surgeons came in and checked him this morning. They said he still had fluid in his chest cavity, which they thought his body would've eliminated yesterday through pee.

During his surgery, since he didn't have much tissue between his valves to sew the patch to, they were concerned that the patch may cause some obstruction. Immediately after his surgery, before even talking to us, they did an echocardiogram and it showed there was no obstruction. That seemed to be their biggest worry about this, so that was a huge sigh of relief.

Well this morning, the surgeon said that perhaps that is why he was having so much difficulty yesterday when he was awake and off the breathing tube. She said perhaps there was enough blood flow when he was still under (when they tested him immediately after surgery), but there is some obstruction when he is awake and breathing on his own.

So they are going to do another echocardiogram this morning while he is awake. I did not even ask the big question, what if there is an obstruction. I guess I want to bury my head in the sand for now and hope that there is no obstruction. I'm so out of my mind with worry.

Day 2 - 3

They are putting his breathing tube back in. He is having trouble breathing. He was getting super upset and his blood pressure got really high. They made me come down to the waiting room while they are doing that. I'm so scared. My poor little baby. I hope he can rest well tonight and feels a bit better in the morning.

Day 2 - 2

The doctor did come in earlier to answer my questions. She thought he was jumpy because he was still in pain, so she changed his pain meds. He does seem to be doing a bit better. He's snoozing away right now.

I also found out he got to keep his thymus gland, which I'm happy about. It is standard procedure to remove the thymus when doing pediatric heart surgery. Before the surgery, I expressed my concern to the surgeon about removing it at such a young age. He said that while it is standard practice, he understands my concern and also shares it, so he would try to save part of it if he could. It turns out that they were able to save the whole thing. I have been pretty impressed with his surgeons.

Day 2 - 1

I was able to hold Nicholas a bit ago!! They said I could nurse him, but he wouldn't nurse  But it was so nice to just hold him for a little while. My parents also brought Luke up for a little while to visit Nicholas.

This is so hard watching my baby like this. I thought once we were through the surgery that a lot of the stress would be gone, but this part is almost more stressful. I hate to see him cry and there is nothing I can do to help. Crying is pretty difficult for him to even do because his throat is hoarse from the breathing tube and he doesn't have much energy. His breathing seems very shallow now and he seems to jump a lot. It has me pretty concerned, but the nurse assures me that the shallow breathing is just because it hurts to breath deeper. She did say she doesn't know what is causing the jumping, but said all his signs look good. The doctors will come look at him again this evening; they are in surgery right now. I am just so worried about him.


Here he is today:

Day 1 - Surgery Day

What was supposed to be a relatively simple surgery (as simple as heart surgery can be anyway) turned out to be anything but. After they opened him up, they realized that things were not what they thought. His hole was quite large. They were expecting it to be small to moderate. He's been monitored since birth with echocardiograms and x-rays, but somehow the cardiologists still thought the hole was fairly small. I'm not sure if I'm explaining this all correctly, but he also has two valves right next to each other. Usually there is one valve on each ventricle, but his are both on one ventricle. Again, this was somehow never detected beforehand. His hole is right in between these two valves. There is supposed to be muscle/tissue in between the valves. But since there was no tissue between them, they really had nothing to attach the patch to.

The heart-lung machine doctor, George, said that they had to go ahead and lower Nicholas's body temperature to 74 so they could have more time. They had to come up with a new game plan on the fly while Nicholas waited. George said it's a good thing we have the surgeons that we do. They have 50 years of combined experience so were able to quickly come up with a solution. He said many less experienced surgeons may have had to close Nicholas back up without doing the surgery at that time.

So they were able to put the patch in place. They had to sew it in very close to the surface. They were afraid of causing an obstruction with one of the valves, but they've tested that and it looks good so far. I am a bit worried that somehow the patch will come loose since they had to just barely sew it in there (or so they made it sound), but maybe that is not possible. Let's hope not.

Because the surgery was a lot more major than they (and we!) expected, they've now said he will probably be in the hospital for 7 or 8 days. I'm glad they are being so careful though, so even though I'd love to have him home with me, I'm not going to complain. This will be somewhat difficult on Luke though. I went home for about 30 minutes today to see him and he seemed pretty upset at me, so I know he is having a hard time. They said he can come up for a short time to visit Nicholas in the ICU, so we plan to bring him by tomorrow afternoon. I'm just thankful we have family and friends that are willing to help us out during this time because we need it.

Here is Nicholas right before he went back for his surgery. I love the little gown on him!

Here he is right after the surgery.