Day 116

So many things have happened this week. Some good and some not so good.

Avery is home now! She's been home since Monday night and we are loving it! She is the easiest baby I've had, really. I was nervous to have to deal with her oxygen but she hasn't had any problems so far. So sleeps most of the time and when she is awake she just hangs out and looks around. I can count on one hand the amount of times she's cried and it's never for very long. 

The kids are loving on her too. Clark, Hailey, and Penny all have coughs so we have kept Avery in our room and have had to be careful about not letting them in. They are dying to get feeling better so they can hold her and play with her. 

Logan, getting some cuddles in...

This girl likes her beauty sleep. I found her snoozing like this the other day. She's got skillz...

Wren has a had a very bad week.

Monday night, after we headed home with Avery, Wren was very lethargic and not very responsive.

By Tuesday morning she was re-intubated and back on the ventilator. Her CO2 levels where at 103 according to her blood gas (a normal baby's is in the 40/50 range). Levels this high can result in a comma or be fatal so the ventilator was her only option. The doc put her on 3 different types of antibiotics just in case she had another infection and they collected some cultures from her ET tube and sent them to the lab. 3 different nurses, 2 nurse partitioners, and 2 doctors each attempted to place a useful IV but her veins kept blowing. After far too many failed attempts they where finally able to place one in her scalp and administer the antibiotics and pain meds. She had to be heavily sedated otherwise her oxygenation levels would drop drastically. She spent much of Tuesday night with her oxygen at 100% regardless of being on high amounts of morphine. We're are grateful she made it through.

Here she is all drugged up. My sweet baby...

  

Wednesday it was confirmed that she had pneumonia yet again. The IV in her scalp didn't last long and they were quickly running out of ways to give her the meds she needed. The docs considered giving her another PIC line like she had when she was a newborn but in the end decided a broviac catheter would be best. A broviac is when a tube is surgically placed in the neck and into one of the veins under the collarbone. The catheter is long enough to reach the large vein that goes to the heart.
They got ahold of the pediatric surgeon on call and got the catheter placed right away.

Wren, post surgery. You can see the tube coming out of the right side of her neck...

Thanks to the broviac, she quickly received all of her meds and was put on a morphine drip. By Thursday her oxygen had come down to the 40s and her CO2 was back down to the 70s which is still high but fairly normal for her. She'd retained a lot of water though and weighed about 10 oz more than she should have. She had to get a catheter to help her get some urine out and was put on hydrocortisone to hopefully help with the water retention as well.

Puffy baby...

Today (Friday) she's still hanging in there. She's been awake off and on and her pain levels aren't so bad. The antibiotics seem to be doing their job and her latest x-ray showed that her lungs are clearing a bit. She's still having some pretty significant desats here and there. She's also been having some periodic drops in her heart rate which the docs speculate are bronchospasm but could also potentially be seizures. She has an MRI scheduled for tomorrow to make sure it's not the latter.

Because of this latest episode she will almost certainly have to get a tracheotomy. I believe in miracles without question as we have seen many throughout this process so I haven't given up hope yet. We will have to wait and see what happens.

Even with all of these setbacks and trials I am grateful everyday that I get to be Mom to these sweet girls. God knew what he was doing when he sent their precious spirits to our family. I can't imagine my life without them in it.   

Day 111

It's been a two-steps-forward, one-step-back kind of week for both girls, but we're mostly excited about the steps forward.

Last week, Wren had done so well on the steroid she received that she was able to breathe on a cannula.  Well, once the drug wore off completely out of her system this week, she finally started laboring more in her breathing to where her pressure was increased enough that they decided to put her back on the CPAP.  This was in part because a chest x-ray showed that her lungs looked a little hazy and weren't quite inflating as well as they would like.  She is on CPAP now with a  pressure of 6.0 and around 40-50% oxygen.  We hope that this is a temporary thing and that she will begin moving forward again.

Avery was off the cannula and just breathing room air for a while, but slowly started desaturating more, and eventually needed to be back on the home-style cannula with a small amount of air (1/8 L).  Despite being back on the cannula, it still feels like she had a great week.  She consistently ate every bottle and did a great job with them since se first tried.  In fact, she has done so well this week that the doctors decided it was time to start getting her ready to go home.  (!!!)

By the end of the week, the doctors were talking about discharging her on Monday, depending on how she was looking.  To get ready for this, they wanted us to come spend a night in the NICU taking care of Avery on our own and managing all the equipment she will come home with to ensure we don't royally mess things up.  So, as I am writing, we are here tonight, in our NICU room that feels like your regular hotel room, getting ready to set up all of Avery's equipment.  There's not that much, just a Concentrator that plugs in to the wall and gives her the regular oxygen input on her cannula, a couple of oxygen tanks for when we need to move her around, and an Oximeter to monitor her saturation and heart levels.

As a final step before discharge, Avery also has to pass a car seat test, where she sits buckled into her car seat for an hour or so with monitoring equipment watching for labor of breathing, or her head slouching forward, or anything like that.  It seems like she did well on the test.  In fact, she seemed pretty bored by the whole thing and pretty much just slept.

She was also very awake today when we first came in. 

Is Avery excited to come home, or having second thoughts?  :

We are hopeful that Avery will get to come home this week.  Our kids are excited to spend more time with her.

Day 104 - Upgrades

This has been a pretty significant week for our babies.  First, on Wednesday they reached 100 days in the hospital since they were born, which was a bummer realization.  Second, they passed their official due date on Friday the 11th, so they are now officially past the 40-week mark.  Third, Wren was on a ten day course of Decatron (a steroid) and was able to transition from the CPAP to a cannula -- which is HUGE progress if she's going to be avoid getting a tracheostomy -- fourth, we got moved to a new room where the cribs are closer together and we can now hold both babies at the same time (!), and fifth, Avery had a few surprises for us today when she decided it was time both to get rid of her cannula and to try out bottle feeding.  She's done great with both.  Wow!  We are feeling incredibly blessed this week to watch their small milestones that are huge to us.

Here is Wren just a few days ago, still on the CPAP with a good amount of pressure (7.0) and fairly high oxygen (~55%).  By administering the steroid, the docs were able to get her progressing again and to move not only to a cannula for less intensive oxygen support, but also on about 5.0 Liters of flow at 28% oxygen.

Wren seems to be very happy without the big old CPAP mask in her face all the time.  I think the mask made it hard to see, and it was also very noisy and had constant pressure on her face and head.  The cannula is much more comfortable and also quieter.

We got to hold the girls together for the first time on their due date.  It rocked.  They snuggled right in to each other and got back to the business of kicking each other's legs, just as they did back in the good ole' days in the womb.

Avery was looking pretty cute with her cannula just a few days ago...

...but today she decided it was time to be done.  This morning at 7:00, she pulled the cannula out on her own, and was sleeping peacefully.  The docs saw her saturation levels sitting at 99% and decided that she was telling them it was time to try breathing without the tube.  This was not on anybody's radar -- in fact, a couple of days ago it still looked like she would go home with some oxygen support -- so she's pretty much in charge here.

Avery tried a bottle yesterday, but was too sleepy to be interested in trying.  Today, they gave it another go.  She figured it out almost instantly and had none of the common problems (coughing, dribbling milk, eating too fast).  She's a natural eater.  The nurse practitioner who gave her the bottle was surprised with how well she did.  Shannon got to feed her another bottle a few hours later.  Another huge milestone!

Shannon had a glow on her face when she came home today.  I asked her how it went, and she told me simply that she was able to do some "real mom and baby stuff" like giving Wren a bath, feeding Avery a bottle, and holding both of them.  These things may be be simple, but they're monumental to us.  It's been a great week and is making us feel like maybe there's a light at the end of the tunnel.

Day 98

During the past week, Wren has been given a 10-day course of a steroid to help her progress with breathing.  As soon as they put her on the medicine, she was able to drop her oxygen needs from 60% down to 28%, the lowest I've ever seen, and has dropped her required CPAP pressure from 9.0 down to 6.0, and this should drop further to 5.0 tomorrow.  Much of this improvement is likely thanks to the steroid, but even so, it's good to finally see her progress some.  There isn't a whole lot of time for her to be able to prove to the doctors that she's not going to need a tracheostomy to come home.

Avery is also doing well on her own and has been able to drop to a cannula pressure of 1.0 Liter per minute and is holding her oxygen in the mid-30s range.  The big next step for her is to get her to feed from a bottle, but in order to coordinate the suck/swallow/breathe reflexes, she needs to be breathing stably, which includes breathing sufficiently slowly.  Right now, she breathes at a fast rate of around 80 - 100 breaths per minute, and they'd like to see that consistently drop below 80 and with lower oxygen needs in order to try the bottle.  We may be trying her out with her first bottle tomorrow if she does well enough as they evaluate her in the morning rounds.

Here are a few of the latest pics.  They're still growing!

Avery





Wren







Every once in a while, we can catch a glimpse of what their faces look like without masks and tubes.

Day 91

We have some great nurses, Cindy and Elisha, who last week picked up some rad Halloween outfits for our girls.  So, I'm basically saying that my nurses are better than your nurses.

Naturally, we had to bring in all our kids to the hospital in costume so they could see their baby sisters dressed up too.

Here are Avery and Wren, respectively, dressed up. I only thought it appropriate to give them some trick or treat candy that reminds me of their medical bills.  That's my way of saying "I love you."

Shannon took Penny (black cat) and Logan (Harry Potter) in to see the girls, so I don't have any pictures of that.  I did get to go in with Clark (rocket), though, and snapped a couple of pictures of him watching over his babies.  This kid is usually so loud and crazy, so it's really funny to see him be purposefully quiet and sweet.  It throws you off.  He loves these babies.

What's next, yo

We also met with Dr. Teppits, today, a pulmonologist.  He is here to begin evaluating the girls' respiratory needs over the coming weeks, and to help us determine what needs to be done moving forward to get the girls closer to coming home.  After a short meeting with him, he shared that he feels like the most likely scenario that could play out will likely be Avery going home with a small amount of oxygen support via a bi-nasal cannula on 1/16 L/min or so (this is not much support considering she was on 6 L/min only a week ago).  He thinks she will likely end up needing a G-tube for feeding, but they will monitor her progress to evaluate this further.  A G-tube is basically just a tube that goes directly into the stomach from outside the stomach, and parents and caretakers feed the baby by basically injecting the food via syringe straight into the tube....sounds gross to me also, but I don't think it's as scary as it sounds.  For Wren, he feels like we need to watch how she does for the next 10 days or so as she approaches 40 weeks, but if she doesn't show some pretty significant progress, they are going to want to start talking about performing a tracheostomy on her.  This to me does sound scary, as it involves a commitment requiring some in-home nursing and extra support for maybe up to the first 3 years of life.  It involves putting a hole in the throat that she could breathe through, and would also mean that she would need a G-tube like her sister, and would not be able to talk until the tracheostomy was gone.  There could potentially be implications with her speech and ability to eat food later on once the tracheostomy could be removed.  We are hopeful that she does not need to go this route, but we have learned with this girl, that all you can do is wait and see.

We are grateful to God that we have been blessed with these babies.  If they end up needing to come home with multiple special needs, I know that we're going to need some extra strength.  Extra strength Tylenol?  I don't know, but something.

Day 90

The girls are now 90 days old! Crazy, I know.

Avery is really packing on the pounds and now weighs 5 lb. 15 oz. She has gotten down to a pressure of 3 on her vapotherm (the nasal cannula). She started at a pressure of 6 so she is doing really well. If she can get down to about a 2 and keep her oxygen needs in the 20-30% range she can transition to a more manageable form of oxygen and be one step closer to coming home. She has yet to attempt any feeding by mouth so that needs to be checked off, as well as a few other things, before they will even talk about discharge, but she's getting there! And the cheeks. Oh the cheeks! They are so very pinch-able. As you can see in these photos, however, she clearly doesn't approve of that sort of thing.        

Wren enjoys taking things incredibly slow. She's quite a bit behind Avery in the weight department at 5 lb. 3 oz. and her support needs haven't really changed much at all. She's still on a CPAP with her pressure set at 7 (she would need to get down to a 4 or so to graduate to the vapotherm) and her oxygen is usually in the 50-60% range. Maybe mid 40% on a really good day. She is very dependent on the pressure and can't breathe on her own for more than a few seconds without it. The word "tracheotomy" was mentioned in regards to her and that idea terrifies us!! If she needed to get that done it would still be very far down the road but we are hoping and praying that she will start to progress and it won't be necessary. On the up side she's starting to be awake for longer periods of time and the physical therapists have been pleased with her motor development so far. That's good to hear because the Docs think that's where her brain damage occurred so she may be already compensating for some of that! It's hard to know for sure this early in game but we have high hopes.


Wren's slightly smaller than Avery's but still very pinch-able cheeks. She seems to be practicing her kissy lips in the second pic.

Day 79

Our girls have some new digs. Not only are Wren and Avery BOTH in cribs now, the nurses also nabbed some mobiles.  Check them out:

Avery

Wren

Both babies are doing well and still in the slow progress phase.  They have been receiving weekly eye exams, which is pretty nasty sounding - it requires the ophthalmologist to apply small braces that force the eyes open, and to use tools to move the eye about and examine it to see how the blood vessels are growing in from the back.  In premature babies, and especially micro premies like ours, there is high risk of eye problems requiring either surgery or special glasses.  The rate it with a "1" being vessels terminating in the central area of the eye, a "2" being a ring around that, and a "3" towards the edges.  In all the exams, both Avery and Wren have consistently stayed at a 2, with indications of some concern but no definite problems identified yet.  The ophthalmologist did say that he was surprised that Wren's eyes have held stably, considering the respiratory distress she went through.  Apparently, the development of these vessels hinge largely on the baby's respiratory ability, but this is also partly why they keep lights low in NICU rooms and keep babies' eyes covered for much of the first few weeks of life.

We are getting closer and closer to seeing a discharge date for Avery some time in November, but all indications for Wren are that, most likely, she she still has multiple months left.

I guess that gives me a chance to read more books with her while she's getting stronger.