Day 56

Avery: is still growing and slowly improving.  The nurses measure head circumference on a daily basis as a way of tracking changes in her hydrocephaly, and today for the first time, it looks like her head circumference went down on its own without having her reservoir tapped yesterday.  I'm not exactly sure that this necessarily indicates anything unless we started to see it happen consistently.  There's a potential that if that kept up, it could be an indication that her brain would be starting to manage the cerebrospinal fluid on its own, which would have amazingly huge implications.  For now though, it's just a single measurement.  We are happy that she is doing so well.

Wren: is still trying to catch up to her sister and gained weight for the third day in a row.  She has been doing well enough that the doctors decided to pull her OJ tube (oral jejunum feeding tube) back to position as an OG tube (oral gastro) terminating in the stomach rather than the small intestine.  She also had her PIC line removed as the last course of her antibiotic from her latest possible infection scare finished yesterday.  It's great that she's needing less medicine and growing bigger, finally.  The bigger she gets, the more chance she has to grow new healthy alveoli in her lungs.

Day 54

The last few days have continued to be good.  Today especially so - this marks the first day in maybe a couple of weeks that Wren gained a substantial amount of weight.  When was the last time you celebrated gaining weight substantially in a single day?  It's easy to monitor on these babies, because the special isolettes they are in have built-in scales that allow the nurses to easily check each morning.  We get daily email updates reporting the latest weight and some other facts and figures about the previous 24 hours.  Usually over the last few weeks, Wren is reported to lost 5-10 grams most days, and gains a small bit every once in a while.  Yesterday, however, she gained a full 60 grams (about 2 oz).  She's still about 12 ounces behind Avery, but the medical team was very happy about this.  She needs to get bigger to keep progressing.  The other cool thing that happened yesterday was I got to hold her for the first time in maybe three weeks.  She is finally strong enough that we can do that once again.  It's such a little thing to appreciate, but we are grateful.

Avery is also doing well, though she is still fussy whenever you talk to her or hold her lately.  She's still gaining weight, but remaining about the same with her oxygen settings.  Her head size did not change in circumference from yesterday to today -- that's a good sign that she is handling well how the doctors are tapping her hydrocephalus reservoir.  Rather than tapping three times a week, they decided that twice was still sufficient, but they now extract more fluid.  She is doing well with it, but still is facing somewhere on the horizon the need to install a permanent shunt to manage the fluid.

Day 50

Avery continues to do well, and has really started getting some baby fat, which is rad.  She's finally up to a full amount of food for her size, which is about 1 oz every 3 hours.  Check out those cheeks -- I'm pretty sure I know where most of the extra weight is going.

Wren had another big day.  For the second time she pulled out her breathing tube on her own.  While it wasn't planned, the doctors decided to take a hint from her that she really didn't want tubes down her lungs anymore and let her stay on CPAP this time rather than be reintubated.  Our nurses were really very excited about this and about how well she was doing with it.  This is a huge step for her if she is able to successfully stay off the ventilator.  She can take a pacifier now!  She seemed pretty happy about that.

Day 49

After a few days of not being able to see the girls, I made it back in to the hospital today, donned with an exciting face mask.  Shannon is still not feeling well enough to come back in, but we were able to video call for a bit.

These lovely ladies are doing well.  As of the last couple of days, Avery now weighs in at a whopping 3 pounds, while Wren is still at about 2.5.  Wren smiled at me today.  At least, I'm going to call it a smile, because it sure looked like one.  She opened her eyes really wide for a while as I talked to her, looked over at me, and a smile crept out.  Some people say babies just smile when they're passing gas, but hey, if it's only between me and a fart, I'll take that happy face any day.

The twins also had their first eye exam done today.  Yet another thing premies are at risk for is ROP, for Retinopathy of Prematurity, meaning underdeveloped eyes.  This would basically be a condition where the blood vessels that supply the retina on the back of the eye are growing abnormally, and can eventually cause a wide range of eye problems from nearsightedness to lazy/wandering eyes.  In the worst case scenario, the abnormal vessel growth can lead to scar tissue developing at the back of the eye which could cause severe vision problems which may not be correctible with glasses.  Unfortunately, this isn't an easy or comfortable exam, either, since they have to force open the eyelids to be able to shine lights in them.

Anyway, it turns out that (what do you know), our babies are identical, so their eyes looked exactly the same.  The ophthalmologist said that both had a small amount of ROP, but were not determined to be severe enough to need any treatment. They will start to receive weekly exams to follow their progress.  This is another thing that can go either way - it may look better or worse next time they perform the exam.  For now, it sounds like he was impressed that there eyes were in as good condition as they were considering the respiratory and other distress they have both been through.

Day 47

Wren continues to do well.  Cindy (one of our RNs) told me that last night was great for her, and that her oxygen is now down to 26%, which is great.  Some time today, she ended up grabbing her breathing tube and yanking on it, and it came all the way out.  The nurses of course took care of her immediately and helped her breathe momentarily on CPAP.  She was doing so well on the CPAP when this happened, that had our normal neonatologists been around, they probably would have determined to just leave her on it, but our doctors are out on a retreat this weekend and the fill-in doctors did not want to implement any significant changes while the regulars were gone, so they had her reintubated with a slightly larger tube.  The good news is they now no, by accident, that she will do very well on CPAP, so hopefully they will be able to continue with that plan on Monday.

Avery is still about where she was, at 36% oxygen and maintaining about the same status.

In other news, Shannon and I both came down with a head cold and so weren't able to go in and see the babies today.

Day 45

I hope that pretty soon I won't have much to write about.

Here's the latest:

Avery has leveled out in her progress.  It's starting to look like she could be on the CPAP for a while longer.  The longer premature babies have to spend time on a ventilator, the slower their respiratory progress afterward.

Wren is still recovering from surgery, but seeming to do fairly well.  She is on a steroid right now, so the question will be whether she can maintain how well she is breathing right now once the steroid goes away.  The neonatologist on today told me that the group's hopeful plan for her is to try and work down her settings a bit, and see if she's in good shape by Monday to try and transition to the CPAP.  Normally they would transition her from a jet ventilator to a conventional one as this is the most logical next step before extubation, but in this case her current breathing tube has a decent amount of air leak and stands in need to be replaced regardless, so they're thinking they will just go straight to CPAP and see how she does when they feel she's ready for it.  In the event that they need to intubate her again, she would be put on a new ventilator with a slightly larger breathing tube.

Day 44 - Heart surgery? NBD

Another big day is over and done.  Wren's heart surgery happened this morning, and the surgeon was successfully able to get her PDA closed.  Here on heart.org is a useful diagram that shows what happened for both of our girls (and many others born premature).  Wren did very well during the surgery, and surprisingly didn't need an extra amount of help from the ventilator to get through it.  She was under with general anesthesia, and spent most of the rest of the day resting and then trying to wake back up.  

The pediatric surgeon told us that the PDA was so large, it had started causing additional problems - her aortic arch was smaller than it was supposed to be, and they were worried that there was a potential that closing the PDA at this point could potentially cause circulation problems or just a high amount of pressure on the aorta.  They held it shut briefly to test how she would do with it and found that it would not cause any problems.  Since the PDA was so big, she did not get a metal clip to match her sister's.  Instead, they had to basically tie the ductus shut with suture thread (the type of stuff used for stitches).  It closed up nicely, and they were able to glue her back up and let her rest.  Within an hour or two of having the surgery, her oxygen needs were already dropping down to much better levels.  As of now, her oxygen is at 38% (down from ~60% two days ago) and a pressure of 32 down from 44.  Fist bump.

From what I understand, the reason why a PDA causes problems for breathing in particular is because it causes some oxygenated blood to get sent to the lungs rather than circulate through the body, and this in turn causes a buildup of fluids within the lungs that make it increasingly difficult to breathe over time.  Some of the fluid should start to clear out within 24 hours, but like her sister she will have at least a couple of days to need to recover, and in that time her settings may bump back up and she will continue to need pain medicine as well.

Avery got sent over to another room in the NICU for most of the day.  We hung out there during the surgery and spend time with her.  She is doing really well and continues on our path of slow progress.

I really hope we get to see Wren follow suit and get off the ventilator sometime in the next couple of weeks.  I can't believe what great fighters these girls are.  

Day 43

Wren is getting her heart surgery done to correct her PDA tomorrow morning at 7:30.  I met with the pediatric surgeon Dr. Steusse (the same who operated on Avery).  Of course there are still concerns with her lungs, but she needs to have this done to keep getting better.  I think all of the doctors are on the same page, and we are as well.  She's a tough girl.

Day 42

Avery is slowly getting bigger.  It's easy to forget that things change when you see the girls and think about them every day.  Today a nurse was on that we hadn't seen in a few weeks, and she couldn't believe how much bigger Avery and Wren had gotten and was happy to see how Avery had done with her surgeries.

I got a few more pics:

This is Avery holding a little rolled up bandage that the nurses were using under her jaw to help keep her mouth closed (so that the CPAP would work better for her).  She grabbed the bundle out and held it tightly in both hands like a teddy bear.

This is Avery's very awake and alert face.  She always loves to extend out her arms and legs as much as possible, where Wren likes to keep her limbs in tight.  Her face kinda looks like mine after watching Stranger Things at night.

The latest shot of Wren with my hand for reference on her size.  She's a couple of inches longer than when she was born, and about 12 ounces heavier.  I told her to wake up because it was time to go to school, but she didn't seem interested.

Shannon got to see Dr. Merchant again today, and she was excited to see Shannon and Wren's unbelievable progress.  She had been off for a while, and while she was off she followed Wren's charts and couldn't believe that her blebs had gone down on their own, and also that the infection didn't damage nearly as much of the lung tissue as they originally thought.  She still has work ahead of her.  Dr. O'Riordan saw her today and evaluated a new echo that was done this morning for her heart murmur.  The cardiologist said that the PDA was very sizable and a ligation would definitely be needed.  So, the doctors are faced with a dilemma.  On one hand, she has a sizable PDA like her sister's that is currently causing a buildup of fluid in her lungs, making them in general less effective as they are less able to oxygenate and the ventilator requires greater and greater pressure.  On the other hand, ligating the PDA requires them to surgically go in through the back on the left side, collapse her healthy left lung, and work on the heart for up to thirty minutes or so.  It's a scary proposition because they don't know whether she'll be able to withstand the procedure very well with the one bad lung, and on top of it, it could put her blebs at risk of opening up again.  This surgery will likely happen sometime Wednesday morning.  

Day 41

Another good day.  Although we still can't hold Wren, she is day by day getting better at handling her big desaturation spells.  Yesterday, they were needing to bump the pressure on her ventilator each time it happened, today it wasn't getting much lower than 70% and when it was happening, she is bringing it back on her own without any extra help.  We always want to be moving in the right direction, even if the progress is slow.  Avery is keeping steady today.  I got to hold her for a while and had the best Sunday nap ever.

Day 40

Another good day.  Wren's blebs in her right lung are still down, but on the flip side, she continues to work hard at breathing well.  Eventually, they are going to want to take care of her heart murmur the same way they did with Avery, which is by a surgical ligation on the heart, but they have to wait until they really feel like the right lung is strong enough to handle it, since they have to flatten the left lung for the duration of the surgery.  They don't want to wait too long to do that, and at the same time they can't do it too soon, so there's a bit of a fine line to walk there.  Other than that, she needs time and to get bigger slowly.  She is receiving pain medicine again while she is dealing with the current state of her lungs.  She has had a good number of "spells" where her heart rate drops and she desaturates somewhat sharply.  To compensate for this, the RT quickly intervenes and bumps up the pressure on her ventilator before she drops below 60% or so.  That has seemed to make a good difference.  When she has big spells, they can actually see her turn a little blue, but these are rare, and they help her get through them.

Avery is still doing well on the CPAP.  She is eating around 21 mLs every 3 hours now, which is good.  She seems to be doing well with the taps of her brain reservoir twice a week on Sundays and Thursdays.  They are trying to slowly reduce the pressure she needs from the ventilator to get her closer to the next step.

We finished another book today.  These girls will be well read by the time they are out.

Day 38

The girls are doing well today. The neurologist updated us on Avery's EEG and said that she had no signs of seizure like activity. She's been off of her seizure medication for a week now so this is great news! Her reservoir was tapped again today and Kevin actually got to be there to see it. The doc removed 15 mL and she seemed to handle that just fine. Hopefully she will only need to be tapped twice a week now.

Kev, looking all doctory and stuff.

Very BIG news for Wren today...



Here is a little peek at her x-rays over the last four days. I'll try to explain them as best I can. The picture on the left was taken Monday morning--the blebs are the black circle in her top right lobe. the rest of her right lung and most of her left are white which tells us she isn't getting a lot of air into them. The next was taken Tuesday morning--Doc Meyers thought the blebs looked a little smaller but she still wasn't able to oxygenate very well.  The third was taken Wednesday morning--the blebs are basically gone! However, both of her lungs seemed slightly collapsed. The fourth picture was taken this morning--not only are the blebs gone but she is actually getting good air and oxygen in both of her lungs now.

This is a miracle. Like, really, a real live miracle. Doctor Merchant told us on Sunday that Wren had less than a 1% chance of surviving long enough for her blebs to resolve. She estimated it would take months. MONTHS. And even if they did deflate she still likely wouldn't make it because she wouldn't be able to breath with just one lung and would likely need long term ventilator support that could last years. It's been four days. FOUR DAYS. There is no explanation other than God's hand helping her along.


They call this room the consultation room...



We have gotten to know this room very well. Basically, after a doctor sits you down and tells you there is nothing left they can do for your baby, they put you in this room and make you decide what you want to do next. It's really awful. We've been in this room 6 times in the last month and a half. Sunday night we ended up in there yet again and it was just, finally, way too much. I couldn't do it anymore, I couldn't decide what way Wren was going to die again. Kev and I both just sat there for a while, staring, not knowing what was supposed to come next. We said a prayer and decided that she needed another priesthood blessing before we did anything else.
Walking back into the babies' room to do the blessing was so hard. I was trying to be ready for whatever answer came but was so terrified that Wren's time here was nearly done. Then, mid blessing, Kevin paused for a while and I knew, I just knew, that she was going to get past all of her lung stuff. I thought, 'this seems crazy and impossible but somehow she is going to blow us all away!' And today, she totally did. She beat the odds. God gave us a miracle.

I'm completely humbled and so very grateful to my Father in Heaven. Really, I am amazed. Amazed at the immense love I know he has for me and for my sweet babies. Amazed at the amount of people, many of which I have never even met, that are worrying and praying and hoping for these girls. Amazed at the crazy amounts of loving service that have been done on our behalf. This experience is the hardest trial I have ever been given by far but it's also been the most beautiful. God is good.    

Day 37

Avery had an EEG done today (which the Google informs me is an electroencephalogram).  We haven't heard the results of the reading back yet, but this test involves connecting electrodes to the scalp and watching brain activity over a period of time to attempt any abnormal activity, such as seizure-like activity.  They ran it for about 90 minutes, and the technician didn't see anything abornmal, though the official reading is done by a doctor.

Wren had a small miracle happen today.  I take that back, I don't think the miracle is small -- the large air bubble in her lungs, on its own, and against all odds, looks to have deflated almost completely from yesterday.  I was excited when I heard the news from Shannon and had to come in and hold her after work.  This could be a sign her body can work towards the slow healing process.  As always, these things can change from day to day, but you know WHAT?  I'm going to enjoy the fact that today, we have seen yet another miracle unfold for this baby, and leave it at that.

Day 36

Another day of near silence, and something should change soon.

Avery was seen by the neurologist today.  We had asked about how big she would have to be to receive a permanent shunt, and he said that she would need to be about 1.5 KG (3.5 lbs) and have absolutely no blood residue left in her brain fluid.  Another neurologist also asked for an EEG to be performed for her tomorrow to monitor her brain activity to help identify whether they can see whether there is any seizure-like activity going on.

Wren's air bubbles in her bad lung looked a tiny bit better today, though I don't really have a feeling for how significant the improvement was other than the fact that one doctor told us that seeing these go away completely would be pretty much unheard of.  She has still been having episodes of apnea and bradycardia, but it seems like they're managing these better by increasing the pressure and some of the settings on her jet ventilator.  We told the doctor our intention to continue to give her another chance by sticking the tube in the left lung again, and he agreed to do that tomorrow unless her lung looks significantly better in the morning.  That would be awesome!  I am still scared on a daily basis, but I absolutely do and must believe in miracles.  Not just because I've already seen them here, or because believing this makes it easier to deal with the fears and doubts and stress, but also because she deserves the most that we can provide her, and right now this means our hope and our faith.  It makes it difficult when not all the medical staff understand our hopes for her, and are concerned that she could get to a really bad situation if we continue to try and treat her.  For me, the belief and faith that are part of me, and the logical part of my brain end up in constant conflict.  They seem to feel a constant need to argue with each other.

Day 35

Avery is still doing well on the CPAP.  She is still having some of the withdrawal-like symptoms, but they think that they will be able to pull her off of the morphine altogether tomorrow.  I got to hold her today, which was a completely different experience without a ventilator in the way.

Wren is still holding on and doing fairly well.  The doctor we saw today felt like we are good to wait a bit longer before we decide what to do next with her.

There's nothing else to write today, so blargh.

Day 34

Another day of mixed emotions.  We had a great experience at Church this morning, and then came in and spent time with the girls.  

Avery had another good day of progress.  Not only is she continuing on the CPAP with about 25% oxygen, but she had her PIC line removed today!  This means the doctors no longer feel a need to have access to quickly administer drugs and other fluids, so all medicine and food she receives is only via the tube into her stomach.  She has received a lot of morphine over her short life, and as they've tried taking her off of it, she's started to display some symptoms of Neonatal Abstinence Syndrome (withdrawals), which account potentially for her general discomfort, trembling, and other like symptoms.  They're treating it now by giving her slowly smaller doses about every 12 hours, and she should be able to kick the drug within a week or so thanks to the sit down intervention we had earlier today.

Wren's lungs look quite a bit worse than yesterday again, and she has been having some fairly sizable apnea/bradycardia spells where her heart rate drops and her oxygen saturation drops fairly significantly.  It pops right back up when it does happen with a little help from the nurses.  We met with a doctor again and discussed in depth the choices we need to make for her.  We still don't know exactly what needs to be done, but the doctors feel like the situation is still pretty grim for her.  Regardless, we do know that there is still hope for her and that she's a great little fighter, we just can't figure out what to do next.  Tony and I gave her another blessing today and I felt like the "what next" answer will come clearly but it hasn't quite fully materialized yet.

We are tired, but continually strengthened by all the amazing people around us.

Day 33

9/3/16

There isn't much to report today.

Avery had another good day on the CPAP with her oxygen staying fairly stable.  Shannon held her today and she did really well.  Boom.

Wren had another day spent in the mid-50's oxygen levels, with blebs staying roughly equal.  We still aren't sure what to do next for her but are meeting with the doctor tomorrow to make a decision.

On a side note, we finished reading Anne of Green Gables last week and started on Dandelion Wine.

Day 32

Wren's air bubbles in her lungs are still not any worse today.  We talked to Dr. Merchant, and it's pretty clear that we need to decide on a course of action and what to do next pretty soon.  She is not really sustainable as she is and eventually we have to try to change something.  Our choices are 1) do nothing and wait a week or so to see if anything changes, 2) try and re-insert the tube back in the left lung and give the right lung another shot at taking care of the blebs (at risk of damaging the lung or putting her in an endless cycle of support) or 3) try and extubate her and put her on a CPAP.  That last one is unlikely to work, though it could.  If it didn't work, it could either result in a sudden passing, or a slightly slower passing.  The doctor's concern is that it would be easier to try aggressive treatments if the only thing she was facing was this lung problem, but she's also still facing an untreated PDA (heart murmur), some PVL brain damage, and what looks now like a slight hydrocephalus (not nearly as bad as Avery's).  It is in the realm of possibility that she would need fairly long-term intensive treatment, like needing oxygen from a ventilator for the first few years of life, meaning she wouldn't be able to come home.  Granted, that is only one scenario and there are some that are much better.  Regardless, I wish it was easier to know how to do what's best for her.  I told the doctor we would try to decide the next step by Sunday.  For now, it was nice that Shannon just got to hold her today.

Avery had another successful day off of the tubes.  They switched her SiPAP out for a more traditional CPAP, since it is easier for these to provide a little stronger pressure, which it looked like she needed with her right lung kind of flattening a bit too much.  She has been tolerating her feeds much more lately and is working up to I think 12 mLs now.  Her reservoir for her hydrocephalus is still being tapped with around 13-15 mLs of CSF fluid every other day or so.  It sounds like maybe a week or two until she is completely breathing on her own, if all continues to go well.

Day 31 - One Monthiversary

Wren is still working at breathing in both lungs and is a bit uncomfortable.  The chest x-ray today showed that her air bubble blebs are still there and maybe a bit worse from yesterday, but at least not accelerating in expansion like they were before.  After feeling a bit discouraged from talking to the doctor, I was able to turn to Shannon, who is always hopeful.  Though things aren't as good for as her now as we hoped when the tube got pulled back, we still know that no matter what happens, we will know what the right thing to do for her will be just as we have before, and it won't come from us alone, and it won't come from our doctors alone.  It will come from the one who knows and understands more than all of us, and that answer will make itself known to us.

Avery decided to celebrate being a month old today by getting off the dumb old ventilator and breathing on a SiPAP machine!  (Same idea as a CPAP if you've ever seen one of those). She is now breathing from a little mask over her nose and only 25% oxygen.  That is friggin' rad.  We'll see how she does on it for a couple of days.

For a short moment while the nurses and RT extubated Avery, they were able to grab a quick picture of her without anything in the way of her beautiful face. She even cried a tiny peep of a cry while Shannon was there.  We got to hear her real voice for the first time today!