Tuesday's Update

Daniel is now up to full feeds at 9cc's per 2 hours, and they are fortifying mom's milk with extra calories and nutrients that babies would otherwise get in utero. Sofia is more than halfway there at 5cc's and working her way up. The doctor's goal this week is to get them both up to full feeds so that they can really start to grow. And growing should help their lungs to improve.

Sofia's rate was lowered on the ventilator and she is now the same as her brother (18 on the rate and 19 on the pressure). The diuretics helped her to reduce her oxygen a bit. Daniel on the other hand was having more desats today (where the O2 saturation drops and he requires more). He did not receive the diuretics yet because his sodium was low and they want it to increase first. The fluid in their lungs is part of the cycle for a preemie and doctors expect them to be on a regular regimen of diuretics at some point to help the process.

Here are some pics from today's visit. Daddy took Sofia's temperature. Sofia's scar is visible in the pic where she is laying on her tummy. She likes to do that. You can also see our latest photos by visiting our photobucket site.

Continued Progress

Daniel continues to be recovering from his ex-re-intubation. His O2 (~30), rate (18) and pressure (17) continue to go down and he is up to 7ccs of milk/2 hours which should prevent him from needing further IVs. He also appears to be stable on his weight (800gm) and hopefully will be back to gaining soon.

Sofia has gained lots of weight (actually is more than her brother at 820gm)! but continues to be a bit high on O2 postop (~40%) and to me still not completely herself. Her pressure still hasn't changed for a while at 19 (and her rate is back down to 22) so she needs to grow and do better with her lungs. She's up to 4ccs / 2 hours on the milk and that really needs to ramp up but for now she's getting most of her nutrition from her pic line.

Mommy and Daddy were able to cuddle Daniel some yesterday (we didn't think he could deal with a full kangaroo) and will hopefully do more w/ the kids today.

Out and In

They extebated Daniel last night and for a while he was doing well but he never fully was able to breathe on it without very high oxygen and rates so they re-intebated him (again).

He seems to still be doing great, a little higher settings than last night but it looks like he's recovering well and they'll try again in a few days. He's had some problems with his lipids so they cut them for now and are hoping he'll get on higher feeds.

Sofia is still recovering. She's on her pain med but it causes her to be sleepy and need high oxygen so I'm hoping she'll be back to herself tomorrow and can start to improve again.

A Good Day

Sofia was weaned from her pain medication and by later this afternoon
seemed more comfortable. She is also getting a bit of Mom's milk
again. Like her brother, the doctors started her on albuterol to help
open up her lungs and improve her breathing.

Daniel continued to improve his breathing and the doctors reduced his
settings several times today. He is close to the point where the
doctors could try to extubate him and put him on NIPV. Mommy
kangarooed him for the first time today. He was not too happy by the
end of it and needed more oxygen, but recovered after some attention
to the nurses. Daniel is now about 1 lb 13 oz.

3 Weeks Old

Daniel is still improving and the doctors think that he had an
infection, not in his belly, but one that did affect his tummy. He
will continue getting antibiotics. They have started him back on
2cc's of mom's milk every 2 hours and hope they can avoid putting in
the pic line. They also are continuing to wean his ventilator
settings. One concern is his high glucose levels and the doctors are
reducing the amount of sugar he is getting in his IV.

Daniel got to sport clothes for the first time today. His nurse
dressed him in a little shirt that was still too big for him. And
Mommy changed his diaper for the first time too.

The doctors are happy with Sofia's progress after the surgery. She
was sleepy today and on her pain medication but did open her eyes and
respond more in the afternoon. We didn't bother her too much and just
let her hang out and recover.

Successful surgery

Sofia's surgery went smoothly and she is sedated and recovering. She will be getting pain medication over the next day and the doctors have warned us that she will be sick the next couple days but then should improve. Mommy held her for a while before the surgery. This is a movie of her hanging out right before the operation.

Daniel is better today and the doctors are not sure it's an infection, but they will be watching because of some irregular gas patterns in his intestines on the x-rays. No cultures grew over the standard 48 hour period. The latest x-rays looked better this morning. They were also able to reduce his ventilation rate a bit. Here is Daniel today holding onto his breathing tube.

Surgery and Infections

Sofia will require surgery to close the PDA and it has been scheduled for tomorrow. The problem is fairly routine but it is still scary to think of surgery on our tiny girl. It's necessary to help her heart and lungs to improve. Mommy got to kangaroo with her today, and also changed her diaper for the first time. Such tiny diapers in the NICU, and yet they are still a little big on our kids.

Daniel actually seems better today and is on less oxygen. However, the doctors are concerned about his belly and are following up with repeated x-rays over the next day or so to determine if the infection is there and if it is possibly NEC (Necrotizing Enterocolitis). The x-rays have not shown any gas in the tissues, and things seems to be moving through Daniel's system slowly, but the doctors will be consulting radiologists as well about some irregularities. Since Daniel is no longer on Mom's milk, they will be putting in a pic line like Sofia has this week. He has also been started on another antibiotic to cover any possible NEC. For now, we have to wait and see. So far, no cultures have grown to reveal the infection.

More downs

The Drs are somewhat worried about Daniel's current desats so they've started to look to see if he has an infection. Having been through this before we're understandably nervous, but right now no one is sure if this is an infection or a major one.

The facts are:
His C related protein (as related to inflammation not infection per se) is up from 5 to 45
White cell count is up to 37k
Frequent desats requiring more effort to recover (rather than natural recovering) but still relatively mild vent settings
Water in the lungs
Otherwise everything else seems normal

So based on that they are putting him on erythromicin, gentamicin, and cefotaxime, feeding him through peripheral iv (for now) and monitoring closely.

Also for Sofia no progress on her PDA so today's final course will indicate if we need to take other action.

Sunday's Update

Sofia still has her PDA and will get a dose of ibuprofen today and tomorrow. She also received a transfusion so we were unable to kangaroo with her while she was getting blood. Mommy did hold her tiny outstretched hand.

Daddy did kangaroo with Daniel. Daniel got 2 doses of albuterol to help open up his lungs. He had been having a lot of desats and it seemed to help. They are reluctant to give him diuretics to help with the fluid in his lungs because his sodium is a bit low. He is getting sodium orally every 6 hours.

Mommy is also trying to hold off what looks like early mastitis through hot compresses and frequent pumping. Daniel is still doing well with Mom's milk but Sofia's feedings are on hold until her PDA is resolved.

Sofia still has pda

They checked again today and she had a murmur which an echo reconfirmed that her duct was open again. They are repeating her ibuprofen course. Also Daniel has a little more fluid so he may need to go on a diuretic again. His sodium is low and they still aren't sure why so they are giving him a little more.

Daddy's Turn

Daddy got a turn to kangaroo Daniel yesterday. He did a lot better in Daddy's care, breathing better and seeming happier.

Both kids are doing great. Sofia's PDA appears to be resolved and she is back to ramping up on feeds on Mom's milk. Hopefully in a few days she'll be up to a full feed and can have her remaining lines removed like Daniel. Both kids are above birthweight, fluctuating a bit but growing. But still very very tiny!

Daniel had been a bit worrysome recently as he was desating a lot but it seems better. Daniel is down on the vent to 22/6 and is peeing better. Both are lower on oxygen.

And both kids' head ultrasounds came back clean and they don't plan on doing any further ultrasounds until a few more weeks when they can first check for white matter damage.

So all in all a pretty good day Fri.

Kangaroo

Sofia's UV lines are out (and her pic line in) so Mom was able to finally cuddle up with her for a while today. She had a good day today otherwise.

All of Daniel's lines are out as well and he's on full feeds so no pic line, but he didn't have a good ventilator day (although the fluid in his lungs has gone down) so she couldn't do the same with him. They are going to put him on an oral diuretic and he still needs a bit of extra sodium.

In Memory of Raymond

We picked up Raymond's ashes today. Our little guy was taken from us too early but his memory will live on. We will not be having a funeral but may have a small memorial service for him once his brother and sister are safely home in a few months. Thanks to everyone who sent flowers and the like.

Several people have asked us about contributing to a cause. We've done some research and think that the March of Dimes would be an appropriate place to donate to help provide the best possible care for premature babies. If you would like to make a donation on Raymond's behalf to the March of Dimes (CT chapter) please call 860-812-0080. You can also donate online but we'd prefer the money to go directly to help in CT.

http://www.marchofdimes.com/howtohelp/b.asp?band_id=45116

Sofia has PDA

PDA is very common in premature babies especially as premature as ours. So they are trying her on ibuprofen to try to close it and hopefully that will do the trick. They are also putting her on a pic line for feeding as she cannot be fed on milk for 3 days and her UV line has been in too long. Actually they just failed to put it in but will try again tomorrow. So in the meantime she's having a little more trouble breathing but otherwise is fine.

Daniel doesn't have PDA which is actually odd because he still is having fluid in his lungs. He's peeing more but that doesn't seem to have completely fixed things.

Both kids are up and down on the vent going from desat to fully oxygenated (100%). So things are a bit exciting today.

Sofia opens her eyes

Here is a pic of it. Daniel has had his eyes open for a little while now. Both kids are still advancing on feeds with Daniel now in the lead at 5ml/2hrs. Daniel is a little higher on his vent settings due to some fluid in his lungs and some white spots on his ultrasound which the Drs think may be SDR related. They've put him on a diuretic to try to draw some fluid out but need to increase it to 2mg. His sodium is also a bit low but otherwise both kids are doing great, Daniel's lungs just need a little help.

Good day

Both kids are doing well. Sofia needed a transfusion but also went up on her feed to 3.5. Both are similar on vent but Daniel has some fluid buildup in his lungs he needs to pee out. He is just about at birthweight, Sofia is 20gms shy. Both are happy and peeking out at us!

Sofia is fidgety today

The kids are doing great again. They are roughly the same on their vent settings and Sofia is going up on milk feeds. Daniel isn't digesting as well but hopefully will catch up soon!

And both their recent head ultrasounds came back clean!

Thank you

Thanks to everyone for your kind words in these difficult times. Christie's family is as much as possible coming in to give her support and I know that all of you are pulling for Sofia and Daniel.

Here they are today. Both are doing great and are on 2 hour feeds of Mom's milk:

Raymond has passed...

I am sorry to say that Raymond passed at 6:28pm today. Complications due to his infection resulted in a massive level 4 brain bleed that essentially left him with no chance of life without significant impairment. He was also suffering as his fluids continued to build so we made the difficult decision to let him go...

We will love you always, Ray.

Update

Sofia has been reintibated. Not because of breathing issues but because her nose was getting damaged by her NIPV/CPAP. Supposedly this is normal for preemies but of course we don't want her on the breathing tube for long, even though they are absolute minimum settings. She is also soon moving off of fluid feedings and will move to feedings of milk only. Which is great news.

Daniel is doing great today, they are increasing his milk feeding and went down on his ventilator.

Raymond continues to struggle. He hasn't significantly improved and they did had to raise his oxygen overnight. Blood pressure has been increased and he is lower on dopamine but things aren't looking good.

Other kids doing great

Sofia is coming off of her umbilical and Daniel has finally stopped peeing too much. Both are on Mom's milk and doing fine.

Raymond decision - pushing on

It looks like things are improving for Raymond. He is no longer acedotic and his white count is way up. His ventilator settings are stable. However he is peeing very little as they think he is still bleeding internally into his tissues and so perversely is dehydrated even though he is starting to puff up from all the extra fluids they are giving him to keep him alive. That said it seems like he may have turned the corner and may be recovering from the infection and they will soon find a better antibiotic to treat it.



However, the Drs here have advised that the damage may already be done. Clinically he has suffered from gram negative sepsis and DIC leading to pulmonary hemmorage. His brain was scanned yesterday and was normal (no bleeds) but it is possible that he may already or will be severely impaired due to micro necrotosis of brain tissue due to the acedosis or bleed. There is no way to pick that up now and probably won't be for a month.

Christie and my greatest fear is that any of our children suffer from a serious debilitation/impairment that would adversely affect their quality of life. So this is a serious risk for us.

However in speaking with several of the attendings as well as our good friend and Neonatologist, Bob, we feel that at this time we want to do everything possible for him and see where this goes. Basically we knew we were in the grey zone when we had these babies and while this sign isn't a good one it doesn't meaningfully change things so we want to stay the course until at least we get more information and at best he turns things around.

Raymond definitely has an infection

It is something really fierce as it grew in <24 hours. Gram negative, rods. Drs are evaluating an approach.

Update: He's continuing to deteriorate and they are supporting him in pretty much every way possible with blood transfusions, platelets and plasma and antibiotics and of course heavy ventilator support. It will take some time to find a more effective antibiotic so in the meantime they are trying to keep him as stable as possible to give everything a chance to work and hope that he can recover and that there hasn't been any permanent damage...

Setback for Raymond - He needs your good thoughts!

The Drs called this morning to say that Raymond's red and white blood cell count dropped precipitously and that they thought it was either a bleed or infection. So they started him on broad spectrum antibiotics (vancomycin et al). They didn't think it was a bleed because they just did a head ultrasound.



Here he is. He is peaceful now but definitely pale.

I just got another update that they see some blood in his lungs and possibly his belly also so they are going to give him some plasma to help his clotting. They've also put him on a funky new oscillator ventilator that helps him breathe better since he has fluid in his lungs.

Not sure of the cause or the impact yet. It looks like the transfusion is helping but the real results are pending an ultrasound and culture. Drs are thinking underlying cause is still infection. They reconfirmed it isn't a head bleed with another ultrasound.

Mom comes home!

Mom is doing much better so they released her today. She's on quite a few medications and still has pain but is weaning herself off the hard stuff and trying to walk around as much as possible. She's also pumping more milk which is great.

In even better news both boys' head ultrasounds came back normal. No bleeds. Sofia looked like she might have a small something but after further review/consult with other radiologists/neonatologists they think she is normal also. That's a huge relief for both of us.

The boys are continuing to be weaned off the respirator but not much progress either on that or their fluid balance. However all three are now taking some of Mom's milk orally. Sofia is taking a bit of a break today but all are doing well on it which is great. All three are off their lights.

And my special reward for all this progress is to return to work tomorrow! Actually I'm looking forward to it as it will take my mind off of things and I'll still be visiting the little ones each day. My mom is here to take care of Christie throughout the day so she'll be well taken after.

Visiting the babies

I took Mom down to visit our little babies. Here she is sitting next to Daniel.



The kids are all about the same, and no news is good news. They are continuing to have issues with their glucose and electrolyte levels as they are peeing all of the stuff the nurses are putting in. The Drs said this was because their kidneys aren't fully developed and that this is normal. Sofia is still breathing great and boys still have their tubes but are breathing room air which is good. All three are now getting just a little bit of Mom's milk.

Daniel was off his tube for a few hours...

Looked good for a while but he was working too hard so they re-intibated him... keep trying little guy.

2 Days Old!

It is two days now and all the kids are working on their tans. Actually the light is to prevent jaundice and stimulate skin growth.



Sofia is doing great. She's still extabated and breathing mostly on her own. They are also going to try giving her a little bit of Mom's milk today, which is fantastic! And she is loud - she cries when she is examined!

Daniel is doing fine too. He's on minimal support and they are going to try to extabate him today.

Raymond (in the pic above) is lagging still and he needs your good wishes. His breathing tube got mispositioned so he's on higher pressure/rate (19 and 24 respectively) again (he was moved to 18 pressure from 15 overnight). They are waiting to give him his final (fourth) surfactant dose and are likely to give him a transfusion to help with his hemoglobin count. The Drs tell me this is all normal given his age but to me this is definitely worrying especially given how well his siblings are doing.

Chinese Names

Here are the kids' Chinese Names:

Sofia 楊绮美
Raymond 楊琦瑋
Daniel 楊琦龍

Update at 33 hours

Sofia and Daniel are doing great. They are still deciding whether or not to extabate Daniel tonight but both still look great. Raymond is lagging a little behind his siblings. His lungs aren't as fully developed which makes sense since he was the smallest. They may need to give him more surfactant to try to encourage his lungs to grow． He needs some love and hopefully he'll catch up soon！

Triplet bling

24 Hour Mark

Well it has been 24 hours so the "honeymoon" period is over where preemies supposedly do well then decline. I'm glad to say that our three are all doing fantastically! The boys are on minimal ventilator support and their big sister is now breathing on her own!

You can see in this picture she has a little diving mask like thing to give her oxygen but everyone, including the drs, are amazed that she has gone off the breathing tube and has been for about 4 hours now and counting...



Mom is doing ok, she has a bit of a fever which is coming down with antibiotics and they are weaning her off pain meds and getting her to walk around which is all very tough for her but she is hanging in there.

Here they are!

Raymond



Daniel



Sofia

The full link to photobucket with all pictures and movies:

http://s466.photobucket.com/albums/rr28/tedyang/

The real thing

We made it our 48 hours at 7am this morning. First piece of good news. Contractions were coming from 6-8 minutes and things were calm.

So Ted went back to work to try to go to a meeting. So then of course with Murphy's law he had to come running back when the Drs called to say that baby A was in some distress and they wanted to deliver.

Let's just say that a lifetime of speeding and driving fast came in handy and I flew back here in enough time to start the delivery by C-section.

At around noon our three babies were born:

Sofia Chi-Mei Yang - 660gm 11:54 am
Raymond Chi-Wei Yang - 640gm 11:57 am
Daniel Chi-Long Yang - 680gm 11:57 am 2 seconds later

Everything is going as great as possible and all the babies are on respirators but doing very well. Actually amazingly well as per the neonatologists. They came in bigger and are breathing mostly on their own.

Mom is fine but in a little bit of pain.

But net-net the babies were born at 24 weeks and 5 days and the chances of coming through without impairment are roughly 40% each, so now the real roller coaster starts.

Premature Labor?

Christie called me around 2:30 in the morning as she was having contractions every minute. The Drs determined that it might be serious so I went in. Once there I was with her a bit before they moved her to the delivery floor.

Our plan had been to give the babies steroids (betamethazone) on Thurs. This was two days earlier.

However we looked at the facts and the odds were about the same for 25 weeks and 24 weeks and 5 days (equally not that good but a fighting chance). So it made sense to try to buy 48 hours for the steroids to take maximum effect.

So on the delivery room floor we decided to start her on magnesium sulfate (to arrest the labor).

This slowed it down a bit to contractions from 1-4 minutes but didn't stop it. Things were tense.

Then we had them up the magnesium dose and give her more sedatives and that did the trick. Around 8pm things calmed down to a contraction every 20 minutes.