Those Pesky Lungs

We've known from the start that the boys' lungs would be at the forefront of their issues, but other than remaining either intubated or on CPAP we haven't really focussed too much on their breathing because it has been overshadowed by Asher's bleed and both of their PDAs. Well in an attempt for each to upstage the other, the boys have given us a stressful few days. Things seem to have settled now, but I have been a bit nervous to say that in case things change again (which they no doubt will).

Let's start with Nolan. As I reported, they decided to try him on CPAP and that lasted less than a day before they re-intubated him late in the night. When we got to the hospital the next morning, we found out that it had all been a very dramatic event, including a very long spell of low heart rate and no breathing. Additionally they found blood in his tube and mouth so over the next couple days they did endless tests including blood work, an echo to ensure his PDA had not opened up larger to cause this, and a chest x-ray, and none of these found any abnormal results or gave an answer to why the bleed occurred. What's more is that he continued to fill his diaper appropriately and therefore proved that neither his gut nor his kidneys were adversely affected which would be expected in this case. In short, everyone was stumped and there was a lot of head shaking by the neonatologists. So here we are, 4 days later, and the bleeding continues. It is not getting any worse, but it hasn't stopped. It is not presenting like a "normal" pulmonary hemorrhage, first because of all the excellent test results, and secondly because there is far less blood than expected. So now we just wait and try not to worry and hope the bleeding stops. He is very stable, seems happy and unbothered until he needs suctioning, and then he's fine again.

So now comes Asher. Apparently he didn't like how much attention his brother was getting so he decided to try to outdo him. He was cruising along on the ventilator until two days ago when he decided he was going to self extubate (i.e. yank his own tube out). Panic ensued but they decided that since the tube was out they may as well try him on CPAP. Well so far so good, he is handling it fine. We are crossing fingers that he knew what was best for himself and maybe, just MAYBE he'll be on CPAP for good now. I am trying not to get my hopes up too high but it seems to be a step in the right direction.

Other than that both are feeding well. Nolan had his feeds stopped temporarily with the whole lung trauma but is back to full feeds and tolerating well. Asher is finally up to full feeds and off the TPN so now neither of them have a permanent IV line in them. Poor Nolan however needed various IV meds and TPN while they were figuring out what was happening with him, so when they ran out of hand and foot sites they had to shave him and put one in his head :( He now looks like he has a receding hairline! Asher seems to be taking after his sister and is a bit of a beast in the feeding department. He gets incredibly agitated when it is approaching feed time and actually gets so angry (HUNGRY!) he needs his oxygen turned up significantly. He then eats, settles, and the whole process starts up again 2 hours later when he's up for his next feed. He's a bit of a champ though because while he is throwing his tantrum he also decides he wants to suck - either his fingers or a soother - and generally continues sucking while he's eating. This is a very good sign that he is already associating eating with sucking. Both boys are gaining weight and weigh more than 2.5 pounds each.

Tomorrow they are 4 weeks old. Maybe we're almost a third of the way through their stay??

Answers

Yesterday I asked the neonatologist whether she knew if my placenta had gone for testing because I was wondering if they could confirm that the boys shared a placenta as expected. Turns out that yes they did (as opposed to two fused together) so they are in fact identical. But we also got another answer that I never expected to get - why they came early.

Turns out Asher's side of the placenta and his umbilical cord were infected and that's what caused the early labour. It was just a matter of time before the infection crossed over to Nolan too. The doctor said "good thing they came when they did or Asher wouldn't have made it". Those were pretty intense words to digest, but for the first time made me thankful for the 26 week birth.

My first thought was that the cerclage caused the infection and she said while it is a possibility because bacteria love a foreign body, it definitely could have been unrelated because moms with no cerclage get infections all the time. The more I think of it, that probably wasn't the cause because they had me on unbelievably high doses on antibiotics that likely would have killed anything that could have been brewing at that time. So what caused the infection then? That we'll never know.

So poor Asher, taking the hit for the team. Knowing the state of my placenta and cord, they now know that Asher's problems at birth with pH and BP were caused by the infection. These in turn likely caused the bleed. It breaks my heart to know that one brother paid the price for the health of the other. Just another reason to pray for a miracle that Asher comes out of all of this without issue because more than ever he is my little hero.

I guess it feels strangely good to know why this all happened. Thankfully my body was smart enough to say "better out than in" and I can also be sure that nothing that anyone did in pregnancy or labour caused this and there was nothing more or better that the doctors could have done. Everyone did all they could, myself included, and the rest was out of our hands.

So in other news, Nolan and I got a great kangaroo care session two days ago and he behaved like a champ, more settled than I had ever seen him. They decided to push him yesterday morning and take him off the vent and on to CPAP but that ended with an 11pm phonecall to us (talk about panic seeing that on call display) saying he was just working too hard and needed to be reintubated. Poor little guy but those lungs and respiratory drive just aren't up to par yet. The bigger and stronger they both grow, the more ready they will be to take over the breathing on their own. At this point, making them work too hard on breathing is wasting calories they could be using to gain weight. Asher is still ticking along unchanged. Much happier and calmer to be back on the ventilator but they will try him on CPAP again this week and see how he does.

Until next time, here's me and Nolan having our first extended cuddle.

Happy 3 Weeks

Before Rio was born, the best advice we got was to cherish every moment because before we knew it she would be grown and all those little moments would be gone. After having her and realizing how true this was, that was the first piece of advice I would pass on to new parents. Yet, for the past three weeks, I have not been able to follow my own advice. Instead of enjoying the good moments, although few and far between, most of our energy has been focussed on getting through the bad moments. Well today has been a good day, so time to start cherishing the good times and here are some reasons to be thankful:

1. Both boys are 1kg! (more or less). Asher now weighs 1028 gms and Nolan sooooo close at 998 gms. Asher is tolerating breast milk again, so "should" be up to full feeds within the week.

2. We have all survived 3 weeks. For 21 days all five of us have woken up in the morning and made it through another day, stronger.

3. I got an unexpected kangaroo care session with Asher today. I have come to realize that even more so than the stability of the boys, it is dependent on the nurse and whether or not she wants to make the effort/take the risk. Asher's nurse suggested it today, and he handled amazingly. He did not set off a single alarm for the hour I held him. Tomorrow we will attempt a session with Nolan.

4. Nolan is setting off the alarms less. Still a bit of an attention hog, but quieting down considerably. The less ABDs for both of them, the quicker they get back on CPAP.

5. Lastly, but most importantly, we have two new beautiful boys. The situation of their birth may not have been ideal, and they are by no means out of the woods, but we are now the parents of not one, but THREE amazing kids. All that has sort of been lost in the rollercoaster that has been the past three weeks, but it is now what I am making a conscious effort to focus on. Those boys are loved and we are all going to fight to get them through this.

So here are some new pictures from their "three week birthday". Here's hoping that every day going forward can give us some glimmer of happiness like today did.

Nolan resting peacefully

Asher alert

Nolan getting some attention 

Update, Day 19

Again more of the same...

Asher had yet another head ultrasound with the result unchanged. This now gives me a little bit of hope the bleeds aren't worsening, so the next step is that they drain/reabsorb as expected. The course of action is to continue to measure his head circumference twice weekly to ensure his head is not growing at an inordinate rate - if it is it means the blood is pooling and not draining. Normal head growth is a good thing, and so far so good.

Both boys have had echos to check on their PDAs. Nolan's is gone again, however he still has a murmur caused by some sort of turbulent bloodflow, cause unknown. At this point, no reason to be alarmed. Asher's still remains, small to moderate, but he is now too old for further medicinal treatment. For him we just wait and hope it closes on its own or surgery will need to be considered when he is stronger. The doctor does not feel that he is currently at all symptomatic, so again we just hope it fixes itself.

Nolan is still on the ventilator but has had the PICC line removed and is on full feeds of breast milk! One less line in him and getting all his nutrition solely from me via feeding tube. What a good boy! Now they wait on him to gain some weight and get stronger and try to push him with his ventilator settings in the hopes of getting him on CPAP.

Asher is off CPAP and back on the ventilator. It was hard not to see that as a big step backwards, but they assured us that Asher had been doing very well on CPAP and he just needed a rest. Once he starts doing better with his feeds (he has been having a bit of trouble since his treatment for his PDA - the drug causes gut issues) they will wait for him to get bigger and stronger and then try him on CPAP again.

Jordan and I went to a NICU parent support group last night and it was nice to talk to other parents in a similar situation and know that the range of emotions we feel from grief to happiness are all normal and expected. The support we have received all around has remained outstanding, but it was extra special to hear it from others who have been there. Thanks again to all of you who keep checking in on us, dropping off goodies and sending emails. As strong and positive as we are trying to be, hearing your positivity really helps. And lastly, a big special thank you to Jordan's crew at Wilkinson. Your generosity and support of Jordan, and in turn all five of us, is amazing and I thank you from the bottom of my heart.

More updates over the weekend if anything changes but at this point status quo is a good thing. And sorry for no new pictures - I'll do better next time.

Update, Day 15

More of the same for the boys these past few days. Both boys have been successfully treated for their murmurs. Nolan had originally been treated but he got a mild case of pneumonia (also seems to be gone with large doses of antibiotics) so it returned. Asher's was originally tiny and got worse so they treated him as well. As of yesterday, no murmur could be heard in either of them. This is good news because in a week or so medicinal treatment will no longer be effective if the murmurs return, and surgery will have to be considered.

Now that their treatment is stopped, they're both back to oral feeds. Nolan is nearly at full feeds of breast milk and Asher is quickly catching up. They are now both above birth weight, with Nolan at 965 gms and Asher at 940 gms. Soon they will be a whopping kilo, what little fatties!

Nolan had a repeat head ultrasound today with the unofficial result being normal and unchanged. Asher has another repeat on Thursday and we hope that again it is unchanged (Asher's bleeds can't get better at this point, only worse, so "unchanged" is best case scenario).

Both boys are having increased episodes of ABDs - apneas, bradycardias and desaturations. An apnea is when they stop breathing, a brady is when their heart rate drops and a desat is when their blood is not oxygenated enough. The three go hand in hand. Nolan, because he is on the ventilator, recovers from these episodes quicker than Asher. Asher, because he is controlling his own breathing, has a slightly more difficult time with self recovery but so far has only needed to be resuscitated once and otherwise starts breathing again with a change in position. It is frustrating because Asher's breathing had been going so well up until now, but the neonatologist assured us this is normal and his lungs are going to get worse before they get better - at this point he is likely just tired. The other day we had another kangaroo care session planned for me and Asher, but that had to be cancelled because of his instability so that was really disappointing. Nolan on the other hand is still cruising along on his ventilator, showing no signs of wanting to do more work himself so will likely stay intubated for the next while. I did get a 10 minute hold of Nolan today (my first) while they changed his isolette, and am hoping for the same with Asher tomorrow.

So I think that's the overview. For those of you that are concerned when the blog is not updated, please don't worry. If I reported on every single up and down I would be writing all day - their stability changes by the hour, much less the day so it's a bit easier to manage if we just update every few days.

Keep the positive vibes coming - and check out these alert little faces.

Asher

Nolan

Update, Day 11

Well the boys are holding their own, but unfortunately not without further issues.

Nolan was doing great. He was successfully treated with ibuprofen for a heart murmur (caused by a malfunctioning valve - referred to as PDA - patent ductus arteriosus); however, two days ago they found infection in his aspirate and started treating him for pneumonia with heavy doses of antibiotics. While the doctor didn't seem overly concerned with the infection, his heart murmur has unfortunately returned. Likely caused by the pneumonia, but regardless of the reason, it's back. He had another echocardiogram today and the neonatologist will review the findings with the pediatric cardiologist to decide what the next step in treatment is. I gave him a little talking to today, because he is the one we have been able to not worry about as much, so he needs to stay strong for his brother. Hopefully it will all be easily resolved. On a positive, Nolan continues to eat well, 7mls of breast milk per feed, and has surpassed his birth weight now weighing in at a hefty 930 grams (2 lbs, 1 oz).

Asher also has a heart murmur (caused by a PDA), but fingers crossed, after 2 doses of a 3 day treatment, it cannot be detected at the moment. We were more worried about Asher's PDA because the treatments and potential surgery (for both of them if not resolved by the time they are 3 weeks old) are much riskier for him because of his bleeds. Last dose of the treatment will be tonight or tomorrow, so here's hoping the murmur stays at bay. Because of the PDA treatment, Asher has had to stop oral feeds so he will be a bit behind Nolan on the feeding schedule. He isn't too far behind on weight at this point though, at 880 grams, so he's inching closer to his birth weight as well. Additionally, Asher had a repeat head ultrasound today to make sure the bleeds have not gotten worse. We were hoping to get the results today but a radiologist hadn't read them yet so we won't know anything further until we speak to the neonatologist tomorrow.

On a happy note for Asher (and me) I got an hour long skin to skin cuddle session with him yesterday that was just amazing. Poor Nolan needs to be off the ventilator before that can happen for him but hopefully it can start happening more regularly for Asher and me. Asher was very stable throughout it so it made me feel really good. I even got to kiss him before the nurse put him back!

Other than that, things aren't getting better but they're not exactly getting worse, so we just need to hope and pray that all these obstacles start resolving so we can all have some days where we feel like we see real progress. As for me, I am finally seeing physical improvements, so I am off the narcotics at the very least (still depending on Tylenol and Ibuprofen but the lack of the serious drugs makes me feel better). I did however have a run in with a serrated knife and the end of my finger, so 2 hours in the ER on my first morning alone with Rio didn't really help any of this. I'd like to blame it on being a post partum mom, but really I think I'm probably just that dumb.

In the mean time, the boys are looking cuter every day - here are some new pictures...

Asher - "kangaroo care"

Nolan

A Good Day

Today was a good day as we returned to the hospital after a much needed two days "off" (phonecalls and worrying remained). We had a nice, relaxing weekend with Rio, and didn't accomplish much other than Jordan and I going on a date. I think the quietness was really good for me physically though, as I am finally starting to feel a bit of progress in the healing department. Still on a regimented med schedule but feeling less exhausted and in pain than in days previous.

When we went to visit them this morning, the nurses asked us if we wanted to come back later when they changed out their isolettes ("houses"). They need their house changed every 7 days and didn't get to it last night so it needed to be done today. They weren't making any firm promises, but were hoping that if the boys were still stable and no other admissions came in at the same time, we could not only hold the boys while they made the switch, but they would also use the opportunity to move Asher next to Nolan instead of at the opposite end of the 6 bed room.

We returned this afternoon and everything was a go. We started with Nolan who had to move the lesser of the two distances, but his move was slightly more complicated because of the ventilator. Each of us could only hold one baby so I decided Jordan should hold Nolan as likely a lot of alarms would go off during the move and I would panic. The move went well, Nolan was not remotely bothered (he normally doesn't like handling) and Jordan got in a quick snuggle while they made the transfer and hooked up the monitors. When he was back in his house after the move he was very alert with eyes more open than we have seen before so we felt really good that he not only tolerated, but seemed to enjoy, the interaction with his Dad.

Next up was Asher and it was my turn to do the holding. They got everything set up for him and then quickly brought him to me, sitting next to his new bedside. Because he is so stable on CPAP they were actually able to remove the mask for a few minutes while they did the move. I got a much longer cuddle than Jordan as they were far less concerned with getting him back on the monitors. I probably sat with him for 15 minutes, but it felt like only a heartbeat. The best part of it all was that we got to hear him cry. A tiny little quiet cry, but a cry nonetheless. The best sound I have heard in a very long time. Sitting with him so close was very emotional and brought up a lot of worries about what his future holds, but it was definitely worth the tears and I can't wait till I can do it again.

When both boys were safely settled I got to do some oral care and take their temperatures. We also got sent home with their dirty laundry, which sadly, was just thrilling! The simple ways they try to involve the parents are really helpful. Who knew that mouth care, crying and laundry would be so exciting, but these are the things you take for granted when you have a healthy baby. Additionally, one of the nurses made us some clay casts and paper molds of each of their handprints so that is a really special keepsake.

The only other development of the day is that Asher needs a blood transfusion. His hemoglobin is very low, likely because of the bleed. He will get 14 ml (less than 1 tbsp) tonight over three hours through IV and that will help supplement him as at this age they are not replenishing their own red blood cells. We were assured this is not abnormal for preemies, and Nolan will likely also need one at some point.

Tomorrow Jordan goes back to work so I am alone with Rio for the first time since pre-bedrest. I am not sure that physically I am quite ready, but thankfully I have a friend taking her for a few hours in the morning so I can go to the hospital by myself. There is a new neonatologist on this week so I will meet with her and go over everything that has happened so far, and discuss plans for the coming days. It will be good to hear everything from another doctor's perspective.

Until next time...

Rio

Again a much needed distraction. Check out the brilliant husband and 
child and the video they made a few weeks ago. Make sure you have 
sound on for the full effect (Jordan did the music too).

At the insistence of our social worker, we are taking the weekend off

from the hospital and spending some much needed quality time with

Rio, and just the two of us. She is handling this all brilliantly and we

couldn't be getting through any of this without her.

We will call the hospital regularly for updates but will not go back till

Monday. You'll hear from us then.

Pics - first 4 days

Asher close up - ventilator

Asher - CPAP mask

Nolan holding Mommy's hand

Nolan under the bili lights. Both boys required photo therapy for increased bilirubin levels. This is very normal for premies and often required for jaundiced full term babies (Jordan required it when he was born).

The first few days

Well I'm home and I wish it was all good news to report but it's not so I will just start from the beginning and fill you in on all the progress.

Prior to the birth of the babies, we were told the first 72 hours were the most critical. Within that time was the highest likelihood of a brain bleed, or even death. We are now at almost 96 hours and they are still with us and little fighting machines.

Nolan had a fairly uneventful first few days. He is being fed through a line in his belly button and on day 2 started receiving 1ml of breast milk every 6 hours through a feeding tube down his throat and in to his tummy. Today he is increased to 2ml every 4 hours. The intent of the breast milk is not for nutritional value but to prime their guts for when they do start eating. Either way it's a great sign he can tolerate it, and makes me feel good that I am contributing to his care.

From the moment he was born, Nolan was put on a ventilator and alternating back and forth between breathing straight room air and needing assistance with added oxygen. Everything else about him remained stable, and still does. Today he was extubated (taken off the ventilator) and put on CPAP (continuous positive air pressure) - a mask forcing oxygen into his lungs and helping him to breathe. Although the CPAP mask looks scarier than the ventilator it is actually much better for them as it doesn't require any tubes down their throats. However, first minor setback today put Nolan back on the ventilator a few hours after he was extubated, as his blood gasses showed he was not tolerating. Not really that surprising and we were told to expect it.

Asher on the other hand, had a harder few days than Nolan. He had issues with both his blood pressure and his pH and was put on medication for both. He has successfully been taken off both of those meds and his BP and pH are both now within the normal range. Because Asher was not stable, he only started breast milk yesterday, receiving 1ml every 6 hours. He is tolerating it well too.

Asher did really well with the ventilator right from the beginning and was only breathing room air, never needing assistance with oxygen. Yesterday they actually changed the ventilator settings to allow Asher to do most of the breathing himself and just lead the ventilator when he needed help. He was also extubated today and put on CPAP, and so far is tolerating it well and has not needed to be put back on the vent so far.

Head ultrasounds are routine for premies because brain bleeds can be quite common. Asher had one the first morning as they suspected that a bleed may have been contributing to his other problems, but it came back normal. Nolan had one on day three (the standard timeframe they were planning on) and it also came back normal. At that point we breathed a big sigh of relief because we thought we had weathered the first 72 hours without any major issues, at least none that couldn't be solved with medication.

The bad news came this morning when Asher had another head ultrasound, now that the 72 hours were complete. It found he had two bleeds, one in either side of his brain. The one in his left side was minor and we didn't even talk about the implications of it. The one in his right side is quite severe however, to the point that the doctor is confident that it will cause long term problems. No one at this point can predict the severity of the impairment which makes the news more difficult to absorb. It won't become obvious until Asher is older (approaching 1 year) and using his limbs more. It may be as severe as total loss of use of the left side of his body, and may be as minimal as a limp. They also have no way of telling at this point if it will cause cognitive impairment. There is nothing they can do to treat it at this point, only wait for the blood to be absorbed.

As you can well imagine, this is devastating news. It is difficult enough to manage each minute of the day right now without adding the looming thoughts of Asher's future and what it may hold. I know we need to concentrate on the present and the myriad of other issues they could encounter in the here and now and try not to think about a year from now. However ask a parent not to worry about their baby's future (especially an over-thinker like me) and it is pretty much impossible.

I know Jordan promised more details of the birth but I'm not up for sharing those details. I will only tell you that at 6pm I was in bed, fine, at 6:05 Jordan got an urgent phone call, and at 6:27 Asher was born. I will leave you to imagine the panic that ensued in those 22 minutes and you can imagine why I don't want to talk about it. All I can say is that I am incredibly thankful for the calm expertise of all the doctors involved. Unfortunately Jordan was not allowed in the room, but seconds before I was put under I was told he had made it to the hospital and was outside the door. As soon as I was brought to recovery Jordan was with me, where he has remained throughout the hospital stay as much as was feasible with Rio.

Physically, I am ok. Apparently a c-section under general anaesthetic is much more painful because you don't have any of the freezing of a spinal to take you through the first few hours of pain management. Additionally because of the emergency of it all I am more bruised than I would have been, my incision is slightly larger, and my uterus tore beyond the incision. All that being said, I have a lot of drugs and just need to focus on not doing too much because I really feel the exhaustion if I push myself. I have also been reasonably successful in pumping breast milk and will continue that until I am able to feed them myself. It is a lot of work but I am happy to do anything I can to help make them stronger.

Mentally, this is all a lot to handle and we are just trying to figure out how to process it all. Tomorrow we meet with the NICU social worker to try to talk through all of this and find the balance between staying strong for the boys and Rio, and letting ourselves be vulnerable and accept what a difficult situation we are in.

So now to all of you again...I just can't say thanks enough. To everyone in town for the food, babysitting and good wishes, to everyone out of town who is sending their good thoughts and even offering to fly in to help. The five of us are truly blessed with an amazing support system. Unfortunately, especially for those of you that aren't here, there isn't a lot you can do to help us, except to pray. Pray for Asher and Nolan right now, pray for Asher's future, pray for our entire family and how we are going to deal with all the bumps we are no doubt going to encounter in the coming months.

I know the pictures showing how tiny they are with all their tubes might be scary but they really are beautiful. They look just like normal babies, just a tiny version. Right now we can only put a hand on them when they are stable but as they get bigger we will be able to get more involved in their care, and at some point even hold them. It has all been very surreal as a mom to have plexiglass between me and my babies and to never have even heard them cry, much less held them and fed them. Rio has met her brothers and absolutely loves them. While she doesn't seem at all bothered by all the tubes and monitors, we anticipate that there will be some frustration as more time passes and she still isn't able to touch them or take them home. But this will be a learning experience for all three of us and we will be there for the babies as much as we are able.

With any new developments, we will keep you posted. We are still really not up for visits but we do appreciate the emails and calls even if we don't reply individually. Like I said, positive thoughts and prayers, and I know we will get through whatever we are given. I will post more pictures soon.

xo

j/t/r/a/n

Sooner than later

Asher Timothy Cohen Trousdell

Born November 1st, 6:27 pm, 32.5 cm, 936 gms (2 lbs 1 oz.)

Nolan Giovanni Luke Trousdell

Born November 1st, 6:28 pm, 34 cm, 874 gms (1 lbs 15 oz.)

Well it happened. Early. I will be giving y'all an abbreviated version. Details to follow.

Tracey began having contractions at home in the wee hours of Nov 1st. We rushed her to the hospital where the experts were able to essentially stop the labour. An ultrasound later that day showed the stitch was holding tight and her cervix appeared healthy as ever. Positive thoughts ensued.

Later that afternoon I received a call from Tracey at the hospital saying the babies are coming NOW. Due to the emergent circumstances, she was forced to deliver by c-section and the babies were rushed to the Neonatal ICU.

Cut to 27 hours later... Tracey is doing reasonably well (in ample pain, but doing well) and the twins are stable in the NICU.

Please forgive us if we don't return phone calls and emails right away as it will take us some time to process this all, so for now we will keep you updated through the blog.

Halloween

A much needed distraction...