Day 29 - The Horrible, Terrible, No Good, Very Bad Day (that turned out okay)

The day after they removed Clarity's orogastric tube, they reinserted it because she started throwing up. We've been having some frustration with continued output ever since, indicating that somehow her stomach isn't emptying properly/rapidly enough. However, the nasal feeding tube that goes to the beginning of her small intestine has been working well, so we knew Clarity's intestines are processing well. Thinking that the nasal tube through the stomach was kinked and causing problems, we took a trip down to radiology to have a new nasal tube placed on Tuesday. Output continued. On Wednesday, we again returned to radiology (a trip down three floors on the elevator that requires four people to take a 5+lb. baby and all her accouterments) to get an upper GI study done. This confirmed that she seems to have no physical reason (blockages, malrotation, etc.) for not allowing digestive juices to empty from the stomach. Frustration ensued because the other option is that she's not having good motility, a common problem with CDH. Dysmotility is much more difficult to treat.

All of this leads us to today. I was already worried due to the research I did on motility issues and really wanted to make rounds to see what was said. There was an accident on the highway route which made parking lots out of some of Denver's main arteries. I ended up getting to the hospital late and missing rounds - first frustration/stressor.

When I got to the hospital I found out that her OG output has increased substantially and clearly has a lot of milk in it, meaning that her feeds are now backing up into her stomach from the small intestine. This is a huge step backwards and was now calling into question how efficiently her whole GI tract is working, not just her stomach.

Around 10a she started being extremely irritable, crying inconsolably before finally falling into exhausted sleep and then waking up 15 minutes later, sobbing again. Finally, around 11:30a, I picked her up and cradled her to my chest at the magic moment and she immediately fell asleep. The nurse moved a chair over to me and I carefully sat down and got all the tubes arranged. Clarity, blessedly, finally took a 1 1/2 hour nap.

When she woke up, we started cares and found that even after several hours, her diaper was still totally dry. No urine output is another worrisome sign that something is amiss. She continued to cry and every time she almost calmed down it would start again. A baby with compromised pulmonary function and hooked up to monitors getting really mad is something that gets kind of scary because you can see her heart rate soar and her oxygen saturation can plummet. This also brings all sorts of alarms, adding to the cacophony of a crying baby, who can't be easily maneuvered for soothing because she's hooked to way too many wires and tubes.

At this point, the nurse had the doctor come in to look her over and I went over to the armchair and quietly had my nervous breakdown. It felt like all of a sudden my relatively stable baby was barreling downhill into some sort of crisis and nobody knew what was happening or how to help her. It took a lot of deep breathing to pull myself together with only a little crying so I could try to actively participate in her care. Being her advocate is all I can really do for her sometimes. Even though they had been replacing fluids intravenously, the doctor ordered some more since no urine output pointed toward dehydration. Since the feed back up had started shortly after replacing the NG, she also ordered an abdominal x-ray and the technician got there ASAP.

The picture came back with a brilliantly obvious answer. She was constipated by the barium solution they had given her for the GI study the day before and her entire lower bowels were glowing with radioactive poo. Taking away her feeds for the study had also led to slight dehydration, which compounded the issue. I was so relieved I became practically giddy. Yes, she was still crying in pain and hard to soothe but we had an answer and it was a "normal" baby problem. The doctor ordered a glycerin suppository and I went back to trying to help Clarity feel better while we waited for nature to take its course. She quickly became the anecdote of the day among the staff. Happy outcomes are always celebrated in the NICU.

As I was putting her back in the cot to change her dirty (yay!) diaper, we managed to pull out her NG - the one that we had had to go to radiology to replace only two days ago. At this point, almost at the end of a long day of misadventures, the nurse and I just had to laugh in resignation. Clarity had drooled so much that she had managed to soak off the tape holding her NG, OG and cannula in place. I held them steady until our nurse could retape them. The timing couldn't have been worse though because it was about 5 minutes before her (oral) methadone dose was due. The dose that we could only deliver through the NG tube that was just pulled. She been successfully weaning down so she only gets them every 12 hours now. Within the next 20 minutes, I was now trying to comfort a baby who was still extremely constipated and starting to suffer withdrawal. Thankfully, within about an hour they got approval to give her a dose through her IV. That was quickly followed by her atavan dose that was due. By 5p, we had a very loopy drugged baby girl who already had one dirty diaper. Oh, the relief.

I had to leave but our day nurse called when she got word back from Dr. Crombleholme (our surgeon and head of the maternal-fetal care center) about what he wanted to do. Clarity had her OG removed and he kept her NG out for the night. She's getting all of her meds and nutrition through her IV and we're going to see whether the tubes have been irritating her and causing the problems. Hopefully, she won't start throwing up stomach juices in a few hours and they'll just drain properly into her intestines without all the tubes interfering. I'm trying not to even dare to hope that we will finally solve the stomach drainage mystery with this experiment. No matter what, I'm just so grateful that she is stable and not in any sort of immediate danger.

The good news, in a day of so much regression, is that her sildinafil is now at full dose so they're planning on turning off her NO tomorrow and moving her oxygen to the wall on low flow. This is all proof that her respiratory system is totally kicking CDH booty.

Here's a picture of Clarity at the end of the day, slightly cross-eyed from a combination of medication and sleeplessness. Here's hoping that the night nurse has a boring shift. :)

Day 26 NICU

Okay, we're going to build up to the most exciting news of the day at the end of the post. It was a pretty exciting day all around.  First, above, Willow came to visit with Grandma and went to the Play Center for a couple of hours.  It is awesome free childcare for siblings of patients.  She loves it there.  Today, she painted a wooden duck and created a picture using those precut foam pieces.  When we got back to Clarity's room she proceeded to pull them all off the sheet and adorn herself instead. She was so proud of the results.

 While  Wil was downstairs playing, Grandma got  to hold Clarity for the first time. Both ladies seem to approve of each other.  

 Clarity wore her first actual outfit today. I  couldn't resist this in the thrift store a few months ago.  She still has her PICC  line and she's tiny so we didn't bother with the arms but she's still cute as a bug. I caught the picture while she was yawning too!

Okay, last,  most exciting  news.  Look at her right cheek in this picture and the one above.  We lost a tube between the two shots!  They pulled her orogastric tube today.  It had been suctioning stomach contents.  Even though she was still having more output than they'd like,  it was clearly just stomach bile and no food was coming up.  They decided that the extra tube might be contributing to the problem so they pulled it.  We really hope she doesn't start spitting up now and they decide to reinsert it. They also started increasing her feeds again so hopefully we'll get to taking milk as her only nourishment soon through her nose tube.  When that happens we can lose her last line and she'll have her other hand free. Her mouth is finally completely empty - at least until she started happily sticking her free hand in there.  :-)  It's just the sweetest,  most kissable little mouth.  She also looks even more like Wil now.  So in love with this little girl.

Day 22 NICU

Our girl is spending more and more time awake and quietly alert. I really enjoy sitting next to her and having "conversations" when she's like this. She continues to be a champion bubble blower, as you can see from the picture. The volume of her "oral secretions" continue to amaze each new nurse who has her.

She was showing signs of withdrawal overnight so they upped her methadone dose. As the nurse put it, there's no need for her to go through withdrawal symptoms and they can eventually just gradually decrease the methadone in intervals that don't stress her body. Her job right now is to get big and strong and grow a lung. She kept falling asleep today and then waking up 1/2 hour later, crying, especially when she was due for a dose in the near future. Poor baby.

The doctors are currently a bit baffled by the volume coming from her OG tube. That's the tube that drains her stomach and they expect it, by this time after surgery, to be producing just a couple of clear mls every few hours. Unfortunately, it's producing more like 15-25ml and it's rather green, which suggests bile. Ideally, the bile should be draining into her intestines and not collecting in her stomach. What is keeping them from being worried is that they are putting lots of milk through her NG tube, which goes directly to the beginning of her intestines and all of it is clearly getting processed and going through the entire intestinal tract. This means that any sort of bowel malrotation (a CDH fear) is extremely unlikely.

If everything past the stomach appears to be in working order, the question becomes, why isn't the stomach draining? The NG tube can apparently block good flow through the pylorus (valve at the base of the stomach), preventing drainage but we can't pull it back into the stomach until the OG tube can be pulled. We can't pull the OG until the stomach is draining it's contents through the pylorus.  Starting to see the paradox?

I'm going to manage to get there early enough for rounds tomorrow to listen to what's been decided. They were consulting her surgeon, Dr. Crombleholme, today for his opinion. They may wait a couple more days to see if it decreases on its own or they may embark on some sort of diagnostic course. I hope it gets resolved soon. It's clear that she is even more anxious than I am to get it out. She mouths around it and tries to spit it out. I think it will also go a long way toward solving her drooling problem and she'll be more able to start working on using her pacifier (which she already likes).

Three Weeks Old

Clarity and I celebrated her three week birthday by having a major snuggle-fest. Skin to skin snuggles is usually called "kangaroo care" and is extremely important for the health of NICU babies and an important step in establishing breastfeeding. A quick informative article is here. She's down to enough tubes that she's easy to transfer and manipulate into different holding positions. I'll be able to lift her easily by myself after the OG tube comes out of her mouth.

They turned off her versed yesterday afternoon and turning off the fentanyl sometime early this morning. She's now strictly using the oral atavan and methadone, which they will slowly and carefully wean her down from to avoid withdrawal. No more meds going in intravenously, just nutrition, which means she will get her last PICC line out whenever she gets to full NG feeds of milk (through her nose). I can't imagine how thrilled she'll be to have both hands up by her mouth.

Yesterday when she was in her crib, I tried teasing her lower lip with the pacifier and she opened up (one reflex for nursing still intact) and even sucked on it a little (two nursing reflexes intact). She had trouble getting the hang of sucking and keeping it in her mouth but she's also working around that silly OG tube.

At this rate, I'm hoping for no more OG tube and no more PICC line by early next week, maybe sooner. Then we'll really be able to focus on learning how to breastfeed.

Day 20 NICU - Extubation!

This was a monumental day for our newest little girl! She got extubated at about 10 this morning (only 6 days after surgery!) and did a wonderful job starting to breath with only a nasal cannula. It all happened so fast. They told me at rounds that it was going to happen today and then, all at once, a couple of hours later, two doctors and the respiratory therapist trooped into the room and just did it. It was amazing hearing her cry for the first time, almost as intense as if I'd gotten to hear her in the delivery room. It is still so soft and is mostly raspy hissing with only a few little vocal mews. Once her throat is less irritated she'll get a hearty cry like other newborns. I have promised myself that I will just think about the nice strong lungs producing that sound and remember to be grateful when it is no longer a novelty. I am so in love with that little mouth.

She's doing all the work of breathing now; the cannula just provides some extra oxygen and the NO which helps the pulmonary hypertension. They'll continue to monitor her blood oxygen levels and slowly wean the levels until, eventually, she'll just be breathing room air.

Shortly after extubation

 After they did a couple more draws to check her blood gases, the also decided to remove the PAL (peripheral arterial line) from her left arm this afternoon. Notice how she no longer has the armboard in the top picture - and looks a lot more comfortable. We're down to only the cannula, the right arm PICC line, orogastric tube (for clearing her stomach, should come out pretty soon), and nasogastric tube (for feeding her). Everything else is just sensors for monitoring her stats. AWESOME! Holding her is going to be so much easier now and I plan on doing it as much as possible without stressing her out.

We have come to understand that our girl is rather sensitive to change. In order to pull the vent today, they also had to cut the fentanyl down another bit (after an additional versed wean about 2 hours previously) because it's a respiratory inhibitor along with serving roles in sedation and pain management. The combination of so many changes made her furious. She cried (raspy, hissing sound due to irritation from the tube) for a little over two hours, reawakening herself every time she started to calm down and doze off. I hated feeling so helpless. I tried everything I could without being able to pick her up. I'm not sure how long it would have lasted if they hadn't finally gotten her a dose of Atavan (sedative without inhibiting respiration). They were rather surprised at how long she stayed mad and by the time it became obvious that she wasn't calming on her own, the process of getting the order in and having the pharmacy send it up took quite a bit of time. She also started getting some methadone today to help with the fentanyl wean. Hopefully between the two, her sedation wean will be eased a bit. I find it kind of funny to have a daughter in "rehab", using methadone to wean her from her narcotic dependency. Might have to tease her about that when she's much much older, say about thirty and a productive member of society. :)

The crying fit was even more nerve wracking to watch because her heart rate already seems to run a little high (they're attributing it to just being a little irritable with all the stuff she has to deal with - sensitive, like I said) and when she gets really mad it starts soaring, occasionally breaking 200. "Normal" for a newborn is 120-160 and her usual awake but calm rate right now seems to be hovering around the 160s to 170s.

Her feeds are steadily being increased by 1ml/hr every 8 hours. She's currently at 6ml/hr and is filling plenty of diapers as testament to the efficient functioning of her intestines. Another yay! I'm really looking forward to getting to feed her through more traditional means. It's funny how her great leaping bounds of progress are making me more impatient for what is to come.

As of tonight, her weight is now 5lb. 13oz. She's gained just over a pound from her birth weight of 4lb. 11oz.

Q and his parents went to visit her this evening and she's apparently alert and looking around. Grandma Jill even got to hold her. Tonight is also the first time that she has had to share a nurse with another baby for a shift, further proof that she is doing amazingly well. All day I have had an overwhelming feeling of gratitude for how well she is doing so far. Our path has been smoother than I dared to dream in the months of pregnancy after we got the diagnosis. May she continue on this road!

Day 17 NICU - 1st chance to hold her

We each held her for about 45 minutes. Her stats were great the entire time. It was better than I thought it would be. I'd forgotten how satisfying the limp weight of a sleeping baby is.

Behind the scenes - what it took to get her from her bed to a lap

She's lost a lot of accouterments. She's down to only one tree of meds (above, to her right). The pump sitting alone to her left is the milk for her NG tube. They removed the PICC line from her leg and her catheter so all she has on her lower half now is the pulse oximeter and her ID tag. The space around her crib is so spacious. For comparison, the picture below was taken on her first day of life.

Day 16 NICU

 The infection scare seems to have been a  false alarm.  All  cultures are still negative.  She's showing the elevated temperature and tachycardia again today but we're starting to believe that those are more symptoms of discomfort for her.  They cut her fentanyl (pain  med) in half yesterday  but have been administering fairly regular boluses since then because she keeps getting restless.  Amusingly,  what really seems to work is not the scary meds  but  Tylenol.  When they give her a dose of that she almost immediately goes into the good ranges.  Hopefully we can start controlling the pain with that (which can be given  every 6 hours)  rather than the versed,  fentanyl and atavan boluses.  Of  course,  what we're really hoping for is that in the near future she'll just start feeling better and have less  post-surgical pain.

One of the reasons they lowered the doses on the meds was to wake her up a little so she would start breathing on her own and not letting the ventilator do all the work.  She's at a slightly larger volume now and the vent its set to 32  breaths/min,  down from 42 yesterday. She's now going through spurts of doing a whole lot of breathing over the vent and then letting it do all the work for awhile.  It seems like she gets worn out and just needs a rest sometimes.  At some point they're going to start weaning the NO (necessary to relieve the pulmonary hypertension)  and getting that dose down,  combined with her regularly doing enough breaths  on her own, will be our ticket to getting off the vent.

 The echo looked good so they stopped the milrinone.  With that change,  she's now just on the  fentanyl  and  versed  plus some glucose, TPN (food  replacement),  and lipids through ivs.

She started feeds today. During surgery they placed a transpyloric nasogastric tube, which means it runs into her nose and down past her stomach  to the beginning of the intestines.  This allows her to start digesting colostrum (and eventually milk)  while bypassing her stomach,  which avoids the gastric reflux that's very common with these kids.  She's currently receiving 1ml/hr on a continuous drip,  just to start coating her intestines and waking them up.  This will gradually be increased to full  feeds (150ml/kg/day) before they start moving  the tube up into her stomach.

Two weeks old

Baby girl had a quiet day,  just recovering from surgery and under heavy sedation.  They took her off the paralytic in the morning but,  for the most part,  the vent has still been breathing for her.  When she's more awake she does start taking breaths so we'll see how that goes when  her post surgical pain is decreased and we can let her be more alert.  She has been put down as low as 30% O2.

All day, her temperature was running at  high normal.  Around dinner time it hit the high (38 Celsius)  where they do tests for infection. I  got nervous and when  Mom offered to come stay with  Wil, I  jumped at the chance to go back to the hospital.  When we got back,  they had given her Tylenol for the fever and her temp and heart rate were much better.  The complete blood count, urine culture, and procalcitonin all came back without giving indication that she has an infection.  With those positive preliminary results,  we're assuming the blood cultures will likely come back negative.  The origin of the slight fever is remaining a mystery.  She tends to run warm so it's possibly just her reaction to the surgery.

 We've got an x-ray and an echocardiogram scheduled for Thursday so we'll get a peek at how everything is adjusting to its new placement.

Surgery! Day 13 NICU

 

 

 

 

 

 

 

 

 

 

 

 

On the morning of surgery

The day finally came today. Everything looked good and this was our window to get the repair done. They did the whole repair in her room. The NICU rooms are designed to have everything needed so they can be used as ORs and a huge surgical team descended on it, draped everything for sterility, performed the surgery, then removed everything. The repair was scheduled for 10a but a previous procedure ran over so they didn't begin until about 10:45a. We got the call that they were all done and just closing her up at 12p. It went perfectly.

The hole was large enough that they did end up having to do a patch. Dr. Crombleholme has had a remarkable amount of success (success = no reherniation) using a flap of the innermost layer of her own abdominal muscle. The way it was described to us is that they literally just fold it up into the hole in the diaphragm and stitch it in place. When he talked to us after the surgery, he confirmed that there was just a tiny bit of liver up, her stomach, and most of her intestines. It all barely fit into her belly so they're keeping her on paralytic muscle relaxers for the next little while to keep her abdominal muscles loose as her tummy gets used to accomodating everything that's supposed to be in there.

We were not prepared for the total change in her shape. It's a wonderful change but we'd never really noticed how concave her abdomen was until we got to see her with a big round tummy.

 

In the picture above, taken just an hour or so after they finished closing her up, you can see her big tummy. The incision is on her left at the level of her belly button. With the way they do the dissolving stitches, it's likely that the scar will be very faint by the time she grows up. She's doing a great job tonight and has come through like a trooper.

The post surgery x-ray doesn't have the radiology report attached yet but our nurse looked at it and it looks to her like there's already quite a bit of left lung that has expanded since it was given room. They're also hearing a lot more breath sounds on the left side. We're anxious to get more reports tomorrow.

The anxiety of today left me totally exhausted when I came down off my nervous high. I hope we sleep well tonight. We got a sleep room at the hospital and Mom is staying with Willow because we knew we wanted to be extra close to Clarity tonight. We're so relieved that's over and now it's on to the hurdles of recovery over the next few weeks before we take her home!

Day 10 & 11 NICU

Terrible 1st picture of the entire family
at one of the rare moments that her eyes were open

Willow visited the hospital on Saturday for the first time since Clarity was born.  It was a short visit but she liked seeing the baby, although she was frustrated that she couldn't kiss or touch her. We also got visits from my mom, my brother's family and Q's cousin's family. It was fun showing off our girl.

On Saturday, Clarity was continuing to wean on the ventilator settings and dopamine and epinephrine amounts. In late morning, they had to do the weekly dressing changing over her lines and she was extremely unhappy about it. It took the rest of the day for her vitals to return more to where we want them.

Overnight, she continued to seem agitated (grimacing, sucking her tube, wiggling her hands and legs) and she ended up getting several extra doses of Versed and fentanyl, along with a little Atavan. By the time rounds happened this morning, the biggest question for the nurse was what we were going to do to continue trying to calm her down. She got another bolus of Versed/fentanyl at 8:15a and then, somehow, she managed to finally get calmed down to the point that she didn't need any additional meds beyond her usual drips. When we came back from lunch, her vitals were good. She was awake, opening her eyes and looking around a little. She moved a little but not with the restlessness she had exhibited earlier and then she closed her eyes and went back to sleep - without any medical assistance. Since we wanted to spend the afternoon at home with Willow, that was a very reassuring way to leave her for the day.

Her blood pressure is hanging out just above where they really want her but the dopamine and epinephrine are for keeping her blood pressure higher so it should be going down as we continue to wean her on those. The dopamine was at 4 this afternoon. I still can't believe that it was at 12 just a few days ago.

Today, she also had a blood transfusion due to a low hematocrit count. Apparently, with as frequently as they have to take little blood samples, it's pretty common problem for these little ones. We assume she's also going to need more transfusions due to the surgery, so it's nice to get through the first one in a low stress situation.

Clarity is scheduled for another echocardiogram on Monday morning and doctors are saying that if it looks like they expect it to, they're planning on scheduling her repair surgery for either Tuesday or Wednesday. Crossing our fingers that she'll just keep doing so well!

Grandma has managed to start catching Willow for ponytails.
She looks like such a big girl!

Day 9 NICU

Baby Foot

It's kind of misleading to use Quentin's thumb for measurement because he dwarfs lots of people. I have tiny hands though and her entire arm, shoulder to fingertips, is the length of my hand, palm heel to middle finger tip.

1 day old

9 days old

I think her face is already filling out.

Clarity continued to improve on Friday. She was doing an amazing job of tolerating all of the bother of cares (nose and mouth suction, diaper change, sensor checks and movement) with only a bit of raised blood pressure and heart rate, both of which quickly recovered to normal rates. 

At the end of the day, she was also weaned down to 33% oxygen. For perspective, her high was about 45% (could have been closer to 50% at the very beginning) and room air is 21%. Not bad for a girl with only one lung's worth of volume.

By early evening, her dopamine had been weaned down to 7 (after a high of 12) and her epinephrine was at .03 (after a high of .09). These were helping her maintain her blood pressure but she's been tolerating the weans very well. The night nurse was going to monitor her closely but potentially wean the dopamine down to 5 by her end of shift this morning.

Her calcium chloride drip was cut in half yesterday. Apparently, a person's body uses up the free calcium in their blood more readily when under stress, so they were supplementing when her blood tests came back deficient. Her levels have now been holding steady so they'll be watching her blood tests over the next 48 hours to see if they are still within the appropriate range with less supplementation.

At the very end of the day, she got another CRP, which was very close to her previous number. Since it's not a direct indicator of infection but of inflammation, the new result that has stayed fairly constant, combined with the clean bacterial cultures, suggests that the elevated number is a result of her condition and current state. They were planning on stopping the prophylactic antibiotics last night.

We know there can easily be setbacks but are awfully proud of our little girl for keeping up the positive trend. We're heading in the right direction. They're still talking surgery for sometime next week. We'll see, based on how she keeps doing, if they end up deciding early or late in the week. The idea of surgery is getting scarier as it gets closer, so I'm willing to let them take their time. :)

A big girl with important work at Grandma and Grandpa's
In true toddler fashion, she was on a mission, clear only in her own mind.

Day 8 NICU

 Last  night's scare seems to have been short lived.  Clarity was showing no more signs of infection today. If something was starting the prophylactic antibiotics seem to have nipped it in the bud.  We're waiting  for her cultures to come back to see if anything grew. All her stats were a bit better.  Her blood pressure has still been hanging out a bit high so they got her dopamine weaned to her baseline and they started weaning down her epinephrine.  I'm guessing that by this time we go in tomorrow that will be weaned to baseline.  I  don't know how those baselines were set and whether they'll keep decreasing the amounts if her bp  tolerates it;  they may be using their properties for something besides controlling bp.

 They also weaned her back down on some O2 today.  She was at about 45%  and now she's down at around 40%.  This is not the first time we've tried this but the change happened midday and by the time we left her blood gases still looked good and saturation was very high. The one frustrating thing about her ventilation is that on the high frequency oscillating vent they don't want her breathing on her own, "fighting"  what it's doing for her.  She keeps putting in a bunch of breaths of her own,  which is counter productive and increases the likelihood of getting air in her bowel as she swallows it.  Feels kind of funny,   hoping that your child will stop breathing.

Fentanyl is the big thing we haven't been weaning.  In fact, she's been getting extra here and there when she gets wiggly and tries to cry.  These fits tend to make her heart rate go way too high and more fentanyl brings her back pretty quickly.  She's clearly having some sort of discomfort/distress at those times but we can't figure out what.  I'm suspecting that until she can get weaned down on the fentanyl to about half of what she's on they won't want to do surgery because their additional pain relief options will be limited.  I'm not in any hurry.  If she can get rock steady before surgery she'll be that much more likely to pull through without trouble.

 She looked so good tonight that it wasn't even stressful to leave her in the care of the nurses while we came home to sleep and spend time with sweet  Willow.  After we left, Q's  parents went by for a visit so it was nice getting a mid-evening report that she was doing well.

 In the sad news of the day, a CDH boy whose story I've been following online  and who
was born about 24  hours before Clarity,  at almost the exact same gestation, passed away today.  He was having some sort of electrical heart problems they hadn't expected that were causing arrhythmias and those challenges plus the CDH  were too much for him. It was a pretty shocking blow for me and sent my anxiety over baby girl through the ceiling.  They're just so fragile. Thankfully the other little one, a girl, who was born a couple days after Clarity is doing well.  My thoughts just keep going back to that little boy's family, hoping they're finding some comfort in their grief to get them through tonight.

 Tomorrow's another day of sitting and watching out beautiful girl,  trying to send her strength and love.  We're over a  week in without any major surprises.  Let's just keep our fingers crossed that it will stay that way.

One week old

Today started off well and we're pretty excited that she's made it one week.  Unfortunately,  her temp has been running just a little bit high, her blood pressure
 is a bit high,  and her heart rate kept going a little too high.  Late this afternoon,  the doctor ordered a CBC (complete  blood  count) to check her white blood cells (came back  normal) and a CRP (C-reactive protein),  which came back elevated.  CRP is a  marker for inflammation  and can indicate infection. It is high enough that they reacted  but not super high so if there is an infection,  they likely caught it early.  They started her on  two wide spectrum antibiotics  and took more samples to start some cultures for specific bacteria.  Preliminary results will come back in about 24 hours. They are also going to rerun the CRP tomorrow at  some time to see which way the numbers are trending.

 We tried to go home tonight.  It was wonderful to see Willow  before bed and get some snuggles.  We really tried to convince ourselves to stay home but just knew we'd feel better at the hospital.  Mom is so wonderful to stay with our big girl.  When we got to the last highway entrance,  traffic just stopped.  The last mile and a half to the hospital took  an  hour,  not good when our stress levels are already high.  We were unimpressed with their traffic  management choices for this road work because we got no warning until it was too late to take a different route.

 Keep the positive thoughts coming.  We knew there would be bumps in the road but we just keep holding on to our picture of the destination -  two healthy girls safe at home.

I  didn't happen to get pictures of Clarity today so here's are pictures of my beautiful big girl,  courtesy of Grandma.

I think she looks like a  Renaissance painting (until  you see the bulldog  jammies).

Day 6 NICU

 It's so lovely not really having anything to report.  They've been trying to wean her down on the fentanyl (opioid narcotic)  again and are trying to ease the transition by increasing her  Versed (anti-anxiety).  The  doc is going to also be conferencing with the rest of the team to come up with a weaning plan for the dopamine and epinephrine as we gradual entrust her with more and more of her own self-regulation again.

 She got pretty mad at us today during some cares and opened her eyes a whole bunch. A  couple of times they were open long enough to focus in on us a little. Most of the time her  expression seemed to range from a glare to disgusted skepticism.  It was adorable.  Her hands also kept escaping from the swaddle band.  She really wants to keep her left one up next to her mouth but we don't want her accidentally pulling her tube.

 Two aunts and an uncle of mine were able to make a quick journey today and meet Clarity for the first time.  One  aunt and  uncle  live in Grand Junction  and they managed to arrange a very quick 24  hour trip just to see her. I sure did love showing her off to new people.  They fulfilled their duty and agreed with me that she was perfect.

 After their visit at the hospital,  we all ended up at our house where everybody managed to throw together a really good dinner out of what was on hand/given  to  us.  Mom made a pink frosted birthday cake -  her  one week birthday is already tomorrow!  Willow spent the whole day at her house with Grandma Jill after sleeping in her own bed last night. All that wonderful home comfort combined with a long afternoon nap meant we came home to the sweetest most effervescent girl.  She just kept running the loop through the kitchen/ dining room/ living room/ entryway,  stopping and laughing as she met people along the way.  I am so glad that some sleep and routine has so quickly returned the girl we know and love to us.  Sensitive temper tantrum  throwing  Willow isn't nearly as enjoyable.

 The big milestone tonight is that  Willow, Q  and I  are all sleeping under our own roof again,  just our little family.  It was a  little weird leaving Clarity at the hospital without one of us nearby but it feels good to be returning to some aspects of life as usual.  Tomorrow,  Mom is watching  Willow and my brother's son at our house while Q  and I  spend the day at the hospital again.  We've gotta soak up these sweet tiny newborn days and make sure she knows that we're watching over her.

Day 4 & 5 NICU

I didn't update yesterday because things just keep going well. Weekends are quiet in the NICU. Today, Monday morning, we talked to the "boss man", Dr. Crombleholme, who will be doing Clarity's surgery when she's ready. He was pleased with her progress so far and thinks that about 10 more days of stability will likely get her pulmonary hypertension decreased enough to safely do her repair. Exactly 10 days would be Mom's birthday, which she thinks would be quite the birthday gift. :)

There are two schools of thought on repair. Many doctors perform the surgery as soon as the baby is even mostly stable, within 2 or 3 days of birth. The team at Children's has been using the approach, which I believe is getting more common, that if a child can be stabilized, they need to get to the stable point and then really just relax and get used to being here. One delightful note from our conversation with Dr. Crombleholme - since they instituted the restrictions for what qualified babies for surgery, they have not lost a single baby with CDH during or after the repair. Still hoping we can just make it through the last of these woods and then quit fearing for her life on a regular basis and focus on convalescing.

She is stable but the fidgeting with medications and settings continues. They changed her to a high frequency ventilator this morning, which makes her whole body jiggle as it makes her chest flutter. This has made her numbers much better; CO2 blood gases have gone down considerably - into the happy range. Now that her blood gases are looking good on this vent, they will slowly try to start weaning down the O2 levels.

They also put her back on the narcotic pain killer because her heart rate keeps spiking a bit and her little grimaces and increased movement suggested that she may be uncomfortable. They'd weaned her off because we want a baby who doesn't already have a pain killer tolerance when her surgery comes around. She's a lot better now. The nurses and I wonder if she needs that because the constant jiggling would give us a headache. They're still trying to convince her that anxiety meds are enough right now and will hopefully wean the narcotics again soon.

The funniest thing about all the numbers is that we think of something as "her number" and we know what we're shooting for but then when we really get something under control, we can't believe how...cavalier? we were about the level it was when we were trying to fix it. Latest blood gas at 49; we were thrilled when it had crept down into the 60s after being in the 70s. Mean blood pressure now consistently sitting in the mid-40s; we were watching and willing it to get back out of the 20s when she was dropping all the time.

Tonight I got to change a diaper. Lifting on her tiny legs and feeling the contour of that tiny bum as I slipped the new diaper on gave me a little jolt of the newborn snuggly joy. I also got to do oral care again and changed her headband to one that I had made. I might have to be making more headbands...

I actually left the hospital with Mom on Sunday afternoon and spent overnight back at our house with Peanut getting to sleep in her own bed for the first time in a week. Unfortunately, I still can't be by myself with her because of post-surgery lifting restrictions but Mom was gracious enough to spend the night. Tonight, I kind of forced Quentin to take a turn going home for the night. I think it's really hard for Daddy, who has been Clarity's angel ever since she was born, to be even 1/2 hour away. I'm realizing that my forced separation at a different hospital for the first couple of days had one positive. I have not had to struggle with learning how to leave her here in the way he has. He was also here for all the scary times, which I'm sure makes it that much harder. After dinner, we walked the chapel labyrinth together (in what is fast becoming one of my favorite rituals) and then he went home. We'll see what time he shows up in the morning. I know he wants to make it in time for rounds.

Poor Willow had the worst meltdown she has had in her entire short life today. She's starting to get overtired with the strain and I think we've arranged for her to spend the entire day at home tomorrow, playing with Grandma Jill. We've decided to prioritize making sure she sleeps in her own bed each night and finding ways where she can spend the majority of each day at her own house. Hopefully, she'll settle into some routine again and be our sweet, happy-go-lucky girl.

I got a fuller picture of Clarity's birth today. I think I'm grateful that I was post-op and didn't really have much awareness of what was going on or a sense of time. Quentin filled me in on how a portion of what they were doing immediately after delivery qualified as "resuscitation" and how they were actually working on her for about half an hour in the room next door before she was stable enough for a quick visit to me (still being stitched) before they continued on to the NICU. She was born at 1:18p and I also hadn't realized that doctors were still working in the NICU until almost 5p to get her stable enough for family visits. I was unwell enough after the transfer back to UCH that my parents and sibling visiting blended into "right after I left Children's" for me. I thought that they'd gotten in to see C an hour or so after her birth, not 5 hours. By the time I was myself again and time started working in the way it always has, the worst of the crisis was over and I felt kind of silly for having prepared my family that we might have to say goodbye to her on the day she was born. Knowing what I know now, I've stopped feeling silly. The amount of trouble Dr. Reeves had prepared me for based on her latest results was actually pretty accurate. We just happen to have an amazing team of life-savers here who quietly and calmly saved her and have spent the next few days continuing to do so. They have shown so much careful professionalism that I probably still won't ever really realize the kind of miracles they've worked.

Day 3 NICU

Early this morning, I  found out that I  was not going to be able to leave the hospital to visit  Clarity if I remained checked in because they were only letting me stay anyway for no real "medical"  reason.  Upon finding this out, I  got myself discharged and by 7a, Q  was picking me and my belongings up in front of the building.  Although this made me end up being a little tougher on my body today than I'd hoped for, I  did get to spend my first full day over at  Children's.  It's something to get used to.

They've been spending a lot of time trying to get her blood pressure (too low)  and  heart  rate (too high) to  stabilize.  She tends to have them go out of the good range any time she is touched. The doctors increased her fluids and the amount of dopamine she was receiving,  both of which seem to have helped.   It seemed like we spent the  whole day watching her blood pressure drop and then waiting for her to bring it back up.  It has gotten much less variable  this evening but still isn't as stable as we'd like it.  The nurse assured me that there are lots off things that we can still be trying to get her to a happy place.  Every time an alarm goes off it's a bit stressful waiting to see if she's going to fix it herself (thankfully,  she usually does now).

 They have also been working with the balancing act of ventilator settings - too much pressure and her right lung gets over inflated,  with the risk of causing damage to her precious little lung tissue.  Too little pressure and her blood gases get out of whack.  They've been taking chest x- rays and  blood gas  readings  all day,  trying to get a  sense of what effect each change they make has and trying to find balance.  The latest results seem to suggest that they're honing in on a  spot that may work well for her right now.

We did have the good news today that there is some left lung with gases in it visible on the x-ray now,  which means we're not going  to need to  get it examined by scope on Monday.

One of the challenges of this part of the CDH  battle is that the only "cure"  for the pulmonary hypertension that is the real trouble maker is time.  We're just trying to buy her time to let the vascularization improve and mature until she is stable enough  for surgery.  Then the real healing starts.  We're trying to be happy with the fact that were now just over 72  hours in and she's not presenting any real crises  yet.

Quentin and  I went down to the chapel this evening and each walked the labyrinth there.  I realized in my meditation that what I'm really needing to vision for her right now is not fighting but relaxing into being in this environment.  I came to a warming blanket of white light holding her like warm water.  She needs to just take it easy and trust.  On that front I  was self-aware enough  to recognize that this was good advice  for me too  and helpful for her to have me modeling  it at a spiritual level. At the center of the labyrinth I  consciously tried to release the tension that I've been carrying as I  move due to the post operative pain. I  breathed deeper and let some muscles release and have felt much better since. I  need to keep consciously  checking in and making this happen. Q  and I  both agree that we need to make chapel visits a daily ritual when at all possible because we leave feeling refreshed with new purpose/direction.  Afterwards,  we took a  walk on the grounds as the sun was setting.  It was a  great way to transition into evening,  when so many negative thoughts try to coming creeping in.  We've sat quietly with  Clarity for the last couple of hours as I continue to sew the binding on to her quilt.  Hopefully we'll both sleep well tonight.

Day 2 NICU

DISCLAIMER: My personal blog posts will probably often be long and personal. I certainly don't expect people to wade through them. Writing them out is a way for me to organize my thoughts and emotions and provide a record for me to process later as needed. I'm sharing them with the world because
1) It is a way for me to share my feelings with those nearest to me. I'm not much of a talk it out person but I'm blessed to have a few people in the world who are deeply invested in my happiness and they want to know what I'm truly experiencing.
2) I read through a few of these very personal journals from other CDH parents during my pregnancy and have learned a lot from them. Perhaps someone else will come across these entries when they are faced with this situation and I can pay forward some of the help I received from those who came before me.

What we did
Quentin spent most of the day at Children's sitting with Clarity, meeting with the hospital's social worker, a hospital financial specialist, and meditating in their chapel. Mom and Willow and Kerstin and Cooper visited me this afternoon and he came over to see everybody for a couple of hours.

Back at the hospital, Q met his parents for dinner and got to participate in Clarity's care for the evening. They try to cluster all of her caretaking tasks since she seems to be sensitive to overstimulation by touch. Q got to listen to her heart with a stethoscope and provide oral care. Apparently her blood pressure dropped, which is her way of expressing her displeasure at these events. My impression was that it is an event that is a little scary to be there for from a parent's perspective. I'm going to have a lot of catch up learning to do as I start spending the quantities of time there that Quentin has been spending.

I was unable to get over to the NICU today. My excursion yesterday really wore me out and the second day pain was stronger than the first. I've requested that I don't get discharged until Sunday morning (the latest time possible) so I can have the benefits of being taken care of as long as possible to try to get well as quickly as possible. Quentin has made it clear that my job right now is healing so I can take care of our babies and getting a good milk supply going so when Clarity is able to eat she has access to the best nutrition possible to help her grow. Hospital beds are so wonderful for decreasing the discomfort of getting in and out of bed after a c-section. I am fully intending to go over to Children's tomorrow though. Missing seeing her today was kind of heartbreaking.


Science-y Stuff
One thing I'm starting to find difficult is not knowing if the different tweaks they are making to Clarity's care are indicators that she is not doing well. I tell myself that I just need to trust that they will tell me if she's slipping (and there's nothing I can do about good or bad trends anyway) but every change brings on doubts. This feeling is exacerbated by the fact that every treatment center has slightly different protocols and what may be routinely used at one facility can be more unusual at another.

Tonight, I was happy to discover that the Colorado Fetal Care Center (whose care we are under) has an excellent site describing their approach to postnatal management of CDH. Overall, I have gotten the impression that our center (which has a remarkably high success rate and sees a large number of cases) tends to be very aggressively proactive at keeping vitals in fairly narrow optimal ranges whenever possible. Two pieces of information from today got put into context for me upon reading their "playbook".

1) This morning Quentin got the worrisome news that they're not discerning left lung inflation/tissue. They were giving it a couple more days to see if it changed on its own and, if not, they were going to go in with a scope to try and see what is going on. They seemed to be taking it seriously but weren't overly dire. My mama ears hear all sorts of scary things in that scenario. In the "Airway Assessment" section of the document, there is a description of this type of problem and what they do to work with it. Seeing that it is actually mentioned in their "Pillars of Management" makes it seem a lot more routine and a lot less scary.

2) They started Clarity on inhaled nitric oxide tonight to help with her pulmonary hypertension. Under the heading of Pulmonary Hypertension, CFCC suggests that it's a standard practice here. That eased my mind after I read elsewhere that it's sometimes used as a last ditch effort to avoid ECMO. (ECMO is a lifesaving heart/lung bypass machine but carries a number of risks and is strongly avoided unless practitioners don't have other options for trying to keep an infant from going rapidly downhill.)


Emotional Stuff
Even after the birth of our healthy newborn, Q and I each had the experience of a crash that occurred a couple days into our new circumstances. Sleep deprivation and constantly high running emotions (good ones in Willow's case) frayed our resilience and led to a little crisis.

Today was the day for some reality of our new situation to have hit us out of the blue and we had to take stock and realize that we're way more emotionally fragile than we'd been allowing ourselves to acknowledge. I am blown away by how much I love that little bean who I have only seen twice and barely been able to even touch. Having done it before (admittedly in a much less stressful situation) at least took the edge off a little. I think we're each working in our own ways, independently and together, to try and figure out what's going to keep us going without losing our sanity in the weeks (months) to come. Once again, thank heavens we have a remarkable family support system who we can turn to keep us from losing our minds and rely on to keep providing Willow with a stable, love and warmth filled daily experience while we find our way to our new normal.

This is my third middle of the night blog vigil. Part of it is that I have a pumping session and pain meds dose that occurs around midnight right now. I have been finding it impossible to just "go back to sleep". Tonight is worse, partially because I woke myself up with a night terror at around 11:30p. For me these don't happen often but are a sure sign I'm running at high stress. I dreamed that I had my arms above my head and someone was reaching through a window, trying to grab them and pull me through. At first I was paralyzed but when I got the courage to grab and claw and fight back I woke myself up because I was actually grabbing my arms with my own hands and raking them with my fingernails. Heart pounding and adrenaline pumping, I resigned myself to not sleeping again very soon.

I have found this document, created by an experienced CDH parent, to be an extremely valuable resource from both a personal perspective and a source of nuts and bolts explanations. I'm finding his personal observations of how he coped (especially page 40 and page 54-58) very useful as I try to start navigating this experience.

Now it's time to try and sleep...