Services Services

The babies qualify for lots of services. They also have lots of appointments. By way of example, since they have been home, Aubrey has had 4 eye exams, 4 appointments with a surgeon, 5 visits to the pediatrician, and has a visit to the pediatrician and a gastroenterologist this week; Finn has had 2 appointments with a pulmonologist, 4 visits to the pediatrician, and as a visit to the pediatrician and a gastroenterologist this week; Lydia has had 6 visits to the pediatrician, as a visit to the pediatrician and a gastroenterologist this week. They all will meet with a developmental specialist and Lydia has an appointment with a cardiologist and neurologist some time soon. They have been home for 6-7 weeks. That’s 24 appointments in 7 weeks. In addition to that, I have had to procure gauze, special wrapping for around Aubrey’s belly, mepilex, xeroform, and vitamins for the babies. I have had to get normal baby things (faster flow nipples (that’s a real thing), mylicon, more bottles, different bottles, etc.). We have also had to manage Lydia’s apnea monitor (it’s not too difficult, but if it’s not on right, it’s ear-piercingly loud), Finn’s oxygen and monitor (we had a power outage, we need to travel, it needs distilled water), and Aubrey’s twice daily care for his wound (which looks SO MUCH better!). I also have had to visit social security, am supposed to visit WIC (I tried once, but forgot some paperwork), and have had to talk to various agencies (CC4C, CDSA, maybe more…?). We have had visits from people who evaluate the babies, from people who bring medical supplies for the oxygen, and from people who pull data off of the monitors. It’s been really busy and without having such an amazing husband, I never could do it. We have also been very blessed to have help from our family with Lauren having been here for the longest period of time (and bringing up her boyfriend, Chris). She has helped keep some semblance of humanity in our home. Still, it’s been confusing. The long section below is primarily for me, but it might help someone know part of how these agencies work:

So, I had someone visit from CC4C (Care Coordination for Children) call me. I perhaps got a bit accusatory because when I had previously been contacted, they said they existed to help me schedule and coordinate care for the babies. I was so excited and told them how overwhelmed I was and that I could really use some logistical support. I don't know if I expected them to be my personal assistant, or what. But after explaining how much help I needed, the very nice lady said, "Great! Speak to you in a month!" and hung up. I was confused because how could she help me coordinate in monthly phone calls? So when I got a voicemail from them again, I called back and left a message saying that if they were just an extension of the nanny state trying to make sure I wasn't neglecting my children, I didn't need their "services" and I didn't have time for their foolishness. I was overwhelmed and overloaded and couldn't add another thing to my plate, particularly if they were there for people who had NICU babies as a result of some sort of drug addiction.

Well, I got a call back. Apparently, CC4C exists in NC to help children who were born to high risk homes BUT ALSO children who have special health care needs. CC4C is the one refers babies to a CDSA (Children's Developmental Services Agencies). The CDSA is the person who sends out a case coordinator (in our case, Sherri Crenshaw), who is the person who does the IFSP (Individual Family Service Plan). The IFSP sets what services the babies will receive.

The person from CC4C came out and reviewed the IFSP that Sherri had created for us and explained it. Apparently, Sherri felt that what I really truly wanted for my babies over the next 6 months was that they exclusively breast feed (WTF?!?!) and develop good suck, swallow, breath rhythms. I have no idea where she got that. I recall her asking what I had as goals for them and all I could envision was happy, well adjusted, healthy-haired, white-teethed, adults. So when she said "How does that they eat well sound?" I said, "Ok." Because, yeah. I want them to eat. But I also have NO idea what to expect of a 6 month old baby. Especially one who is straight outta NICU. I spent so much of my pregnancy worried about the babies making it to birth and then the entire time in the NICU worried about the babies making it out, I didn't spend any time researching or learning what developmental milestones I could/should expect. I know babies learn to sit up and roll over and babble and eventually do calculus, and I can put those in some sort of order, but not on a timeline.

The person from CC4C said that Sherri doesn't write the IFSP - I do. She suggested that I call Sherri back and explain what my actual goals are. We talked about my concerns (Lydia's reflux, Aubrey's giant hernia and how that will impact his development, and Finn's...well, I guess he's not a concern because he seems to be the most advanced, but then, that's on a barometer set by 2 other preemies). She said I need to tell Sherri that and tell her that I want more services. She did say that OP and PT might not be right right now, but play therapy certainly is. And she said that I can demand play therapy much more often. If I can handle it, 1 hour/week/baby. (Right now, Lydia and Aubrey get 1/2 hour every other week.) She also said that resources are limited so CDSA is encouraged, even if not explicitly, to offer minimal services. She said that parents really have to advocate for their children to fully get what they need from the programs.

Home, home, home!

Well, clearly I didn’t update for quite some time. Life got busy. I found a great firm that has been willing to work with me regarding my schedule and babies needs. I thought I’d be able to post once the babies were home and I didn’t need to run back and forth to the hospital. Boy was I wrong, I wrote this last Friday morning:

Monday: My MIL has left and Brise and I are alone. Does it go smoothly? No! Aubrey has developed a stench from his wound that smells like death. Lydia won't do anything except vomit if you lay her down. It seems like she and sleep had a falling out.

Tuesday: Hooray! Taking 2 babies to the pediatrician. Pediatrician says he doesn't follow jaundice, we will need to consult with someone else. Pediatrician winces at the smell of Aubrey's wound and says we should maybe meet with surgery sooner. I realize that I have once again forgotten vital diaper bag ingredients - burp cloths and a pacifier. Doctor doubles Lydia's prevacid and gives tacit approval for her to sleep on an angle.

Wednesday: Surgeon refers to Aubrey as a "kind of science experiment" and says maybe there is almost nothing protecting his intestines from the outside world. He trims off some of the wound covering and prescribes baths and wrapping him in gauze for added "protection." My baby's abdominal cavity is reliant on gauze for security. Literally holding on by a thread. Lydia still fighting with sleep but vomits a lot. Also, early intervention comes by when I'm not home and my husband signs lots of paperwork and doesn't remember what it said and didn't get a copy.

Thursday: Finn is coming home! Yay! I work from 3:00 A.M. to 10:00 A.M. so I have the day free. We learn how to use his oxygen. Seems simple. While at the hospital, my mom who is visiting to help calls and reports that my dog bit her dog. I call my vet on the way home to make appointment. Get home, try to pump, and here comes early intervention back to ask 2 hours of questions as slowly as possible and come away with an FSP of "we'd like the babies to enjoy eating." Yay!...? Take dog to vet. He's ok. Bring dog home, Oxygen monitor WON'T SHUT UP. Cry. Yell at monitor. Try to bathe babies. Aubrey poops in the bathtub. End bath. Change probe on oxygen monitor. Cry. Try to turn monitor off. Watch youtube video on pulseox placement. Cry. Try to silence monitor. Give up and call hometown oxygen. Wait on hold for 25 minutes. Finally, someone answers. Alarm stops going off. Tell hometown oxygen we don't need them. Apologize to husband and mother for breaking down. Feel like a failure. Pump. Sleep. Wake up at 4:00 A.M. to do it all over again.

Hopefully it gets easier!

Feeder Growers

When we first began in the NICU, Adam, who is now one of our “primary” nurses, told me that some nurses prefer to take care of only “feeder growers.” Throughout the entire stay of the NICU, I have hoped that my babies would soon be feeder growers. I believe we might be on the cusp of feeder grower status.

Both Aubrey and Lydia are on “room air” trials for 9 hours twice a day. That means that they are just breathing like you and I do for most of the day. Additionally, they have both started to eat from bottles for some of their meals. Once a baby can eat, breath, and keep warm in room temperature, they’re ready to be sent home. Aubrey and Lydia are so close!

Finn is so close. He’s our biggest baby, weighing in at just under 6lbs now. He also is just a bit behind with breathing - he is about to go on RAM all the time. RAM breathing is what Aubrey and Lydia are doing in between their room air trials. It’s the next step for them before room air. We are super excited for him because he’s progressing so well.

We do have a bit of a scare today, though. One that we hope will go away very quickly. Aubrey had blood in his stool today at 11 and then at 4. It’s crazy that I know these things and that I am fixated on it, but I am. Right before I left the hospital at 8, he had another diaper change and while there was still blood in his stool, it was much less than before. The doctors think this could just be due a fissure and we are praying that is it. It could also be because they’ve added calories to his milk in the form of formula (HMF, which is a cow-based calorie supplement). It could be causing irritation. For now, they have made Aubrey NPO (nil per os or “nothing through the mouth” or “not eat") for 24 hours. He’s pretty upset because he has learned he loves eating!

Oh, boy, MERSA.

I had a job interview today and it made me feel great. As I was leaving, I saw that one of my favorite nurses had left me a message to call and that everyone was fine. Everyone was fine, but when I called her, she told me that Lydia tested positive for MERSA. I didn’t believe her at first because I didn’t understand how she could get it. I wash my hands until they’re raw with this soap that hurts so much I swear it has glass in it. And then, once I’m in the NICU, I use so much Purell that my hands are caked with the dried gel. This isn’t just me - it’s any visitors and the nurses. However, I suppose reality is, MERSA is everywhere, particularly in a hospital. It’s even in Lydia’s nose. I went into a bit of an anxiety spiral despite the nurse’s assurance everything was ok. I called Brise’s mom and talked to her. Thankfully, she was able to somewhat reassure me that MERSA growing on skin wasn’t really a big deal. When I talked to the doctor at the hospital, he told me that it was fine and that all of my babies will be in isolation for the rest of their stay just to protect the other babies who are smaller and weaker than ours. Imagine that, our babies are larger and stronger than others. They’ve grown so much!

Lydia will be treated with an antibiotic (in her nose) for 5 days and then retested for MERSA. They fully expect she’ll test negative. They do not expect that she will suffer any negative impacts of the infection because it’s only on her skin.

In other news, look at how much the babies have grown!

View fullsize

View fullsize

Despite the scary news, today turned out great. Aubrey tried eating from a bottle for the first time and he drank the WHOLE thing! He’s such a big boy! I’m so proud of him and excited for the next steps.

Real Babies!

I know the best way to kill readership is to post infrequently or never. It’s amazing because the topic I could discuss endlessly is the babies and there’s nothing I enjoy more than spending time with them. If I can’t be with them, the next best thing is looking at pictures of them and talking about them. Despite this, I have been reticent to write about them. I have been a bit frozen in fear for the babies ever since Aubrey’s surgeries, Finn’s NEC, and Lydia’s little scare. I just know that things can do a 180 so quickly and go so poorly. I learned recently that the babies are tested once each month for MERSA. The doctors are always busy, the nurses have great job security, and the surgeons are constantly going from patient to patient. We call it the NICU, but it’s easy to forget that it’s really an intensive care unit. We’re not just there because the babies are small, but because they’re born with severe lung disease, very immature digestive systems, and at risk for thousands of issues.

It’s only been 10 weeks, but if I look back to the first weeks of our time in the NICU, Brise and I really just had no idea.

Now, 10 weeks later, the babies are 36 weeks old (for premature babies, they are aged by how far along they would be gestationally).

They have grown so much and they now look so much more like “real” babies!

Aubrey on Day 1

He was born at 26 weeks old.

Aubrey today

He’s 36 weeks, 2 days.

Aubrey has grown so much! He has grown from 2lbs, 2oz to 4lbs , 9oz. He has almost outgrown preemie onesies and is wearing newborn clothes. He has had 5 surgeries, gallons of blood products, and the devoted care of doctors, nurses, respiratory specialists, and dozens of others. He has gone from the most supportive ventilator support and is now practicing breathing room air. He has added physical, occupational, and speech therapy to his days. He is great at sucking on a pacifier and is learning to associate the feeling of hunger satiation with the taste and smell of milk.

Lydia has been, and still is, our smallest baby. She has grown from 1lb 7oz to 3lbs 7oz. She is practicing breathing room air like her brother Aubrey. She also sees lots of therapists and everyone expects she will be the first to learn to eat. She has kind of curly hair and is known as Princess Lydia because she is very sassy and demanding. Woe be to the person who disturbs her sleep. At the same time, she brings so much joy because she is extremely active and expressive.

Finn has gained 3lbs since he was born, growing from 1lb, 14oz to 4lbs, 14oz. His loves are sleeping on his tummy and head rubs. One of the nurses remarked that Finn is really laid back unless you try to make him do something he doesn’t want to do, in which case he just refuses. For those of you who know Brise, you can tell who he takes after. At the same time, he is also most sensitive to noise and being disturbed. His muscles are very tense and he is getting some extra massage to help him out. He has very straight, very fine, red hair.

All of them are alive because of skilled medical professionals, countless prayers, and the generous donations of blood. I have always been a blood donor, although I just donate every once in a while. Of the things I have learned in the NICU, the top things are that blood donations are desperately needed and greatly appreciated and that the flu shot really should be a yearly occurrence for all people.

I promise to update more frequently. Even if this experience is scary, I want to share for others who may have similar experiences and so my babies can look back and see how amazing and strong they have been since day one.

Graduation of Sorts

Today, Aubrey and Finn were moved from their isolettes to cribs. It has given me a bit of anxiety to have them out in the open without the protection of their “sneeze guards.” However, it was time. Both of them weigh at least 1700g (3 1/4 lbs) and were overheating in their isolettes.

Tomorrow will be 2 weeks since Aubrey’s last surgery. I got to hold him today (face out) and he gets to eat tomorrow. I think he is as excited to eat as I was to hold him. He’s been absolutely starving!

All of them are 34 weeks old today. We’ve been in the NICU for 8 weeks and I expect we must be about 1/2 way through our journey. We’ve made it this far, so we can certainly do it again!

Finally...

It has been 12 days since my last update. Aubrey had his surgery on the 8th and it went exceedingly well. I haven’t updated because I’ve been holding my breath. I had thought everything would be fine after the first surgery and I got comfortable.

Being in the NICU is hard. It’s hard on the babies who face challenges every day.

In the days since I’ve updated, Lydia has grown from 913g to 1063g. She weighs 2lbs, 5oz. She remains the feistiest of all of our babies. She is also the most advanced breathing-wise, and is on RAM trials. I tried to google it to provide an explanation, but mostly, it seems that it’s the way sharks breath. For my purposes, understanding that RAM breathing support is the final level before Lydia is just breathing room air is enough. Lydia is at full feedings, at 19ml/feeding and she is fed 8 times a day. She is eating approximately 5oz/day. At 30cal/oz, she is eating 150 calories each day. It’s so little, but is a lot for her. Despite that, she is below the 1st percentile weight-wise. My prayers for her are that she grows. Time will help, of course, but the doctors are also working with a nutritionist to help get her feeding perfected to help her grow.

Aubrey is doing so well. His swelling is almost all gone. He had gained about 1lb of water weight but now weighs 3lbs, 12oz, and it’s all him. The surgeon sewed the incision on Aubrey’s stomach as together as he could. However, he couldn’t quite close it. The nurse made analogy to when you try to pack a sleeping back back in the little bag it comes it - it never fits back as well as it did when it was new. In Aubrey’s case, the surgeon covered the open wound with biodegradable mesh. It looks like Aubrey has a baseball in his stomach. Then, every day, the nurses check the wound (nurses and doctors and surgeon). There is a yellow dressing that goes right on top of it to promote healing and, I think, minimize pain. On top of that is gauze. The skin will grow over the mesh, which will dissolve, but the entire process will take 2-4 months.

The earliest Aubrey may be able to eat is Tuesday (the 22nd). This is to permit his intestines to have sufficient time to heal and (hopefully) give him time to poop. He did poop last Saturday, and it was such an interesting poop that the nurse took it to the doctor, who photographed it and everyone in the NICU has seen it. He also texted me the picture for my, in his words, (s)crap book.

Aubrey is also breathing really well and is on RAM trials. He isn’t at the level of Lydia, but he’s close on her heels.

Finn is now the biggest, having it 4lbs last night. He is big enough to move to a crib, but he is working on keeping warm enough without support. He’s been eating milk since Monday (the 14th). He has started pooping, and I’m so very happy. He remains a bit behind breathing-wise, but is making progress every day. He is wearing clothes and it’s very cute to see him in them.

The NICU is also hard on the parents. The anxiety and stress are constant and it’s hard to focus elsewhere. Now that the babies have had a good week, for an entire week, I can take a small break from being there, but it’s still hard. I’ve been told I’ll worry about them for the rest of my life, but I have to imagine that it’s not this constant level-100 level anxiety. I’ve started taking daily walks to help relax. Spending time with friends and family is also a very welcome relief. We appreciate everything everyone has done for us.

Ya' gotta hang on 'till tomorrow

At 12:30 totoday, Aubrey underwent what we hope is the final page in this chapter of the story of his intestines. The goal prior to the surgery was for Aubrey to reduce his total fluid. Although the surgeon was able to sew all of his intestines together, he has been so swollen that the incision on his stomach can’t be closed.

The doctor used a biodegradable mesh to cover what Aubrey’s skin cannot reach and the more fluid Aubrey has lost, the smaller his scar will be. Despite needing to lose fluid, he also needed fluid, including platelets. Aubrey’s doctors did a fantastic job and reduced Aubrey’s fluid levels, safely, by a surprising amount.

During today’s surgery, the surgeon was able to close Aubrey’s abdomen. He inserted a drain (similar to the one Aubrey had before with his perforated intestine repair) in his stomach and we will wait watchfully for a week in the hopes the intestine heals properly and fully. Although Aubrey lost a lot of fluids, the hole was still too big to close with the skin he has. So the doctor sewed in the biodegradable mesh and Aubrey’s skin will grow over it, completely covering the opening.

The doctor also put in a g-tube which can be used to feed Aubrey directly into his stomach. He did this for 2 reasons: 1) Aubrey’s intestines have been pretty stressed. It may be that he eats best by having a constant drip of food instead of being fed larger amounts all at once (like how we eat). 2) Aubrey is a young, immature baby. It is not uncommon that babies like him need a G-tube anyway to eat because it’s just exhausting to do all of that work themselves. By doing the G-tube now, they avoid any necessity for another surgery in the future.

As of now, we are hoping that Aubrey’s intestines continue to heal, his stomach heals and the muscle knits together (so he doesn’t keep the hernia he now has), and that he is able to resume eating in a week or so.

Intestinal Fortitude

We have some baby fighters!

On Wednesday night, the doctors ran a complete blood count (CBC) on Finn. His hematocrit (the concentration of complete red blood cells) was very low. So they gave him a blood transfusion. One of the risks of a blood transfusion for older premature babies (somehow, our babies are “older”) is the development of necrotizing enterocolitis (NEC). If that sounds familiar, it’s probably because that is what the doctors had feared Aubrey had developed.

On Thursday night, I was holding Finn. At his weight, 1315g, he can start working on regulating his own temperature which also means he can wear clothes. So far, he has worn 2 outfits - a preemie t-shirt and the smallest preemie onesie we could find. Finn had gotten pretty hot, so I was holding in in my arms while his isolette cooled off. I noticed that his belly seemed pretty firm to the touch. I have never touched my babies’ bellies before, but I have seen the nurses do it. They always kind of squeeze and massage the bellies to make sure they are soft. What I was feeling didn’t fit my conception of soft. I asked the nurse if his belly felt right and she felt it and then quickly went to get the doctor. The doctor ordered an x-ray, blood culture, urine culture, blood gas, complete blood count, and started preparing to have Finn intubated (put on a more supportive respiratory machine). Within 30-40 minutes, he was tachycardic (his heart rate was extremely high - about 200-240 beats per minute vs. his normal 40-160) and he was tachypneic (his breath rate was really high, about 170-200 breaths per minute vs. his normal 40-60).

After all the tests were run, the doctor explained to me that NEC comes in 3 stages - 1) The intestines are just a bit sick and need a break where they don’t have to work and they will heal themselves. 2) The intestines are more sick and need some help in the form of antibiotics and then they will heal themselves. 3) The intestines are pretty sick and have sections that have died. They need surgery to remove the sick portions.

She told me that her medical intuition was that Finn had NEC that was somewhere between stages 1 and 2. She held his feeds (so he is getting fancy Gatorade instead of milk), put him on antibiotics and sedated him. Sedation helped his heart rate and breathing rate. Through yesterday, Finn started doing much better. His belly is now soft, he has pooped twice (we get so excited over poop!) and his x-rays show much less air in his intestines (which is a really good thing). Even with this progress, he will remain on antibiotics for at least a week and will stay on the fancy Gatorade for nutrients.

During this time. Brise called to inform

And then there is Lydia. She is our little trooper and has been the healthiest so far. I walked into the NICU yesterday morning fully expecting that Aubrey would have his intestines in a bag, Finn would be recovering, and Lydia would be wrapped up like the smallest human burrito. I have been nearing an emotional breaking point but I was holding it together. I didn’t realize how precariously I was holding on, though.

When I walked in, one of my very favorite doctors greeted me. Humorously, she told me that she didn’t quite trust Lydia because she was right between her brothers were were both sick AND that Lydia’s tummy looked a bit swollen. My brain went super loud and quiet at the same time and I just repeated “what?!” three times before turning around and getting out of the NICU. I was crying and knew it was about to be a breakdown and I didn’t want to be in the NICU. I went as far from the NICU as I could, which was to my car in the parking deck. There, I realized that I had left my jacket, warm blanket, purse, and keys in the NICU so I really wasn’t getting much further. I called Brise and my mom and Natasha and really just feel apart for about 45 minutes. My mom called the NICU for me to ask for some more information about Lydia. She let me know that it wasn’t as bad as I was imagining. I hadn’t really been imagining that it was terrible news, but I just couldn’t handle anymore bad news, no matter how small.

After a lot of breakdown time, Brise and I went back to the NICU. Everyone was so accommodating and I still feel embarrassed because I think I caused people to be upset for things they didn’t do. The doctors had been very proactive, ordering all of the tests, holding Lydia’s feeds, and taking every step to make sure that Lydia didn’t develop any problems. If she had NEC, she was at early stage 1. After a day of no feeds (she was ANGRY at an empty belly), her belly is not swollen and she looks in tip top shape.

Our babies are fighters. They are extremely tough and very resilient. They are the superstars of an amazing team of people helping them overcome all of these obstacles. We appreciate everyone’s prayers (last night, we added India to the international community praying for our babies), and I will try to do a better job of keeping everyone updated.

Aubrey's Journey

Aubrey really is a fighter. As I write this, he is in the 4th surgery of his 38 day life. The first was on December 12, 2018, when he had drains put in because he had a spontaneous intestinal perforation. the second was on Wednesday, January 2, 2019. Prior to the surgery, the doctors thought that Aubrey had developed necrotizing enterocolitis (NEC) or a stricture which is a possible complication of the repair for an intestinal perforation.

During the surgery, the doctors realized that he had formed a stricture that led to another perforation which created an abscess. They drained the abscess, removed the damaged portions of intestines, and planned to close him up on January 4, 2019.

On January 4, 2019, during the surgery, the doctors had to remove some more damaged intestine and left some partially damaged intestine in the hopes that it would heal and not need to be removed. Because it was left, they couldn’t sew him up yet.

Today, they are re-examining all of Aubrey’s intestines to see if they are definitively viable or not. Hopefully, all of the sick spots have healed. We won’t know until the surgery is over. I haven’t been updating because there is so much unknown, which is a very uncomfortable place to be.

This was the drawing the surgeon made me after Aubrey’s procedure on the 4th. They hadn’t closed him. Part 1, attached to the stomach and at the top of the drawing, has a section (circled) that looks like it may or may not make it. The middle section (section 2) is just floating there and it is really healthy. The final section of small intestine (section 3) is probably going to need to be removed because it's really "ratty." 

If the injured portion of his small intestine can remain, the doctor will sew parts 1 and 2 together and make an ostomy at the bottom of section 2. That is the best case scenario because Aubrey will be using more of his digestive tract. He will be on fancy Gatorade and milk for 8 weeks and then they will close the ostomy, remove the damaged part of small intestine attached to his colon, and sew him back up. Hopefully, he would have no long term impacts.

If the injured portion of part 1 has to be removed, the doctor would have to create the ostomy there. His digestive tract would be so short that Aubrey would probably be able to eat only fancy Gatorade for at least 8 weeks. The doctor would plan to close the ostomy  in 8 weeks, removing damaged portion of part 3 and sewing everything back together.

Over the next 8 weeks, Aubrey's intestines will grow a TON so hopefully, either way, he will be fine.

But, if he eats only Gatorade for 8 weeks, there is a risk of liver damage and that his intestines don't learn to function properly.

Either way, he is going to get a G-Tube and will be fed through that for a while, probably for about 1-2 months after he comes home. The G-Tube allows for continuous feedings instead of bolus feedings. Continuous feedings would be more gentle and help his intestines learn to work.

Today was hard

I promise more of an update tomorrow. The day started with my bringing the other triplet parents breakfast and them bringing us dinner. (THANK YOU)

The other triplet trio is still going strong and the baby with pneumonia made it through the night, is doing better but is not out of the woods.

Aubrey did not have NEC and instead had an obstruction that caused another perforation that created an abscess of mostly curdled milk that resulted in part of the intestines being so sick that the surgeon had to remove about 15cm of bowels. That’s about 10% of his intestines.

The doctors said that the next 48-72 hours are critical. Aubrey already looks SO MUCH BETTER than he has looked even over the past week. Better than what we had believed was his “baseline.” He, too, is doing better but is not out of the woods.

I will provide more details tomorrow, but for now, my brain is mush.

Roller Coasters are a Poor Metaphor for the NICU

With a roller coaster, you decide whether to climb on, you can see how steep the hills are, how many they are, and how long the plateaus may last. for the NICU, It goes without saying that no parent wants to be in the NICU and one of the things that makes it so bad is that you don’t know how long the ride will be, how steep the drops are, and whether the plateaus are lasting of just a calm before a storm.

Holding Lydia while her bedding gets changed. She weighs 802g, which is about 1/2 the size of a small Chihuahua.

One thing that has made it more bearable is the presence of another set of triplets and their parents with us in the NICU. Their babies are older than ours and have given us a bit of hope and a kind of preview into what to expect. Unfortunately, both of us have had a rough start to the new year. I bring up our friends first because if you only have one prayer, say it for them today. They are sleeping at the NICU tonight because one of their babies has pneumonia. Because our babies are so small and weak, something like pneumonia is VERY serious. In this case, it could be deadly. We are praying that it is not and their baby needs as many prayers as possible.

As for our babies, Lydia and Finn are doing well. Lydia weighs 1lb 12 oz and is growing well . Finn had his last dose of indomethacin today and is still breathing well.

Aubrey, though, has had a challenging start to 2019. His abdomen is once again swollen, but there is no sign of a bowel perforation. Instead, his intestines are full of air which indicates that he has necortizing enterocolitis (NEC). NEC is a bacterial infection of the intestines that premature babies are particularly susceptible to.

For Aubrey, it is possible that the bowel perforation healed too much and created a restriction in his intestines. All of his symptoms could be caused by that. The doctors are thinking it is more likely that there is a restriction in his bowels and that resulted in a build up of bacteria that has caused NEC. Another option is that he has NEC completely unrelated to his prior bowel perforation. Regardless, the doctors are treating him as aggressively as possible.

Last night, they put Aubrey on an oscillator which gives him more breathing support than he has ever had before. The goal is to make it s easy as possible to help him breathe so he can work on healing. They also stopped feeding him milk and now he is once again getting only “fancy powerade.” Aubrey is also getting antibiotics that should kill the bacteria that cause NEC and some pain medication. He is getting x-rays every 6 hours and being monitored even more closely.

Aubrey is turned sideways

You may not be able to tell, but apparently, it’s best at this point for Aubrey to be sideways in his bed.

An Oscillator

This large machine is breathing for Aubrey. It puts about 300 small breaths a minute into his lungs, but they are really small breaths. It sounds like a rickety washing machine. I’m glad it exists because it’s making Aubrey’s life just a bit easier.

Oscillator Settings

I know how to read the other breathing machines, but not this one. Hopefully, he will be on it for a short enough time that I don’t need to learn it.

The doctors are optimistic but have cautioned us that this is something that will not be resolved for at least 10-14 days. He will probably require surgery but the hope is to get him stable before that happens.

A Health Update

Finn

Finn is coming off the steroids. He is doing really well breathing wise, which is what we expected. We will be able to tell how well it ultimately worked within a couple of days after the steroids are completely finished. Right now, he is also much more active and flails his arms about when he’s having his diaper changed. He wiggles and bends and acts like he wants to acrobat himself away. This is that “roid rage” and I think it’s adorable. I don’t think he’s uncomfortable, just maybe discontent. I don’t like that, but it’s heartening to see him move so much! His movement clearly requires strength and energy and he has both!

Lydia

Lydia received her indomethacin treatment and her PDA is COMPLETELY CLOSED! Her heart murmur is much quieter and her heart should be much more efficient now. Now that her heart doesn’t have to work so hard, she should have some energy freed up to put towards growth. The doctors are also feeding her even more aggressively in the hopes that she can climb up that growth curve.

Aubrey

As strange as it may sound, after his bowel perforation, the biggest concern I have had is that he wouldn’t be able to poop. So I’ve been praying for poop. Yesterday, little Aubrey finally pooped! A baby’s first poop, meconium, is unique in that it is black and sticky, consisting of what the baby swallowed while in utero. Because it’s been so long since Aubrey’s bowels were working properly, his poop still contains a substantial amount of meconium. But at least he’s pooping. It’s great news and as little as I like to discuss bathroom habits, it’s a great milestone and I’m so happy we’ve reached it!

He’s getting so big!

Isolette Decor

Now that we’ve been in the NICU for about a month we have settled in a bit. By that, I mean we’re getting moved in.

Inspired by the other triplet mom, I’ve started bringing in swaddles and blankets for the babies. I’ve also learned that we are severely under supplied for isolette blankets (we have a reasonable number for just covering and wrapping babies, but each isolette takes 2 blankets on the inside and a larger cover). The hospital provides blankets (the white with a blue and pink stripe pattern) that are more than sufficient, but it is nice to feel like I am doing something by bringing something personal for the babies (and by doing laundry!).

We also have the signs the NICU nurses have made, and those are fun and I’m sure I’ll keep them forever in some sort of scrapbook that Brise encourages me to get rid of every couple of years.

For Christmas, we had “Baby’s First Christmas” blankets covering each of the isolettes.

We have also received pictures colored by a friend’s children encouraging our children to draw strength from the Force.

It’s little things like these that can make the NICU seem much less overwhelming.

Advocating for the Babies

I’m pretty proud of myself today. I’ll preface this by saying that I think my babies are in great hands and have very qualified medical professionals caring for them with great skill and experience. I also acknowledge that I am a brand new parent and nowhere near a “medical professional.”

However, I am reading as much as I can (while trying to avoid the pitfalls of Dr. Google) and asking all the questions I can for the babies.

Lydia had been sailing along with her breathing before she had the aspiration episode. Since then, she’s been doing well, but she is on the more-supportive NIV instead of CPAP. Also, when I was doing my “Lydia” update, I realized that I wasn’t sure what the plan was for her PDA. I asked about that a few days ago and the doctor looked into it and said that it was indeed a good time to treat her PDA. Score 1 for mom as an advocate. So today, she finished her last dose of indomethacin (that treats the PDA) and went back to “full feeds.” However, Lydia weighs only 1lb 7oz. Since she was just a little embryo, I have been worried about her size. She has consistently been smaller than her brothers. During the last month that I was pregnant, she was measuring near the 10th percentile for her gestational age. Today, I plugged her numbers into some chart I found through Google and saw that she is at the 3rd percentile. I talked to the other triplet parents and they said that the nurses have a growth chart on their computers that I could see. I asked, and Lydia is, indeed, in the 3rd percentile. So I talked to the doctor about her growth to see if her size was an issue (the doctor said not right now because she’s growing consistently), what we could do to help her grow bigger (the doctor said that we can, and will, start giving her additional fluids), and when it would become an issue (we’ll check again in 2 weeks).

Then I asked about Aubrey’s PDA. We were planning on treating it in early December, but then he had the bowel perforation and that was put on hold. I asked if we should treat it now that Aubrey seems to be doing well (BTW, he pooped last night!). The doctor told me that we treated Lydia’s this late because her PDA is negatively impacting her (one side of her heart is slightly enlarged). There are no real negative impacts from Aubrey’s PDA right now but there is the risk of another bowel perforation. We will follow his PDA and he may get it treated later (with surgery ) if it remains large.

I am pretty happy because I was able to ask about things that created action. Lydia’s PDA was treated, we made a plan for Lydia’s growth, and I learned about Aubrey’s PDA. Also, I asked about Lydia’s NIV and the doctor reviewed her charts and is lowering her pressure on the NIV which is the next step to getting her back on the CPAP. It’s exciting to be able to ask for things to happen and then to see them get done or at least to have answers about why they can’t or shouldn’t be done.

We’ve been in the NICU for a month and I feel so much less hopeless than we did 28 days ago. The babies were 13.5 weeks early. If they are going home around their due date, we have 9.5 more weeks to go. I spent longer than that studying for the bar exam. I can certainly survive the NICU for that much longer and I’m confident that our babies are at least as strong as I am!

Babies' First Christmas!

We had expected that the babies wouldn’t have their first Christmas until 2019 when they were almost one. The fact that we were able to spend Christmas with them today is a blessing in itself.

Today was another day of watching the babies grow.

Aubrey relaxing behind his hat/blindfold.

Aubrey received a blood transfusion today because he is anemic and he looked pale. His nurse said they all look pale but that they get that from their mother. He continues to do well on the CPAP and he has been tolerating the food he has been receiving. Increases in the amount of food he gets will start tomorrow. I held Aubrey again yesterday for the first time since December 7, 2018. The nurse said it would be good for me to hold him skin to skin because my hormones could inspire him to poop. It hasn’t worked yet, but we are hoping for poop within the next couple of days.

Lydia’s nurse made her a hair band with little peppermints and a flower.

Lydia is still recovering from her aspiration incident but is doing well. Her breathing is improving as her lungs heal. She is now receiving food with extra calories to help her grow. The doctor said one of her biggest issues is going to be nutritional and making sure that she eats enough of the right things to grow properly. My mom held Lydia last night. She cried. (Lydia and my mother.) It was very sweet

Baby ‘roid rage involves waiving your arms in the air like you just don’t care!

Finn is on day 3 of steroid treatment and has been on CPAP for just over a day. He is doing very well. He is moving a bit more than we are used to, but that’s the “roid rage.” He is also receiving extra calories with his food. He has been growing pretty well, but the nutritional needs of premature babies are high.

For us. it was very nice having my mom visit. We also helped host a Christmas Lunch for NICU parents. For me, having a plan and doing something helped give me a sense of control. Ideally, I would have been at home with babies in my tummy. The second option would be to be at home with healthy babies dressing them up in tiny outfits saying Baby’s First Christmas and hanging Baby’s First Ornaments on the tree. However, I don’t control the world and it wasn’t meant to be. The babies are in the NICU with Baby’s First Christmas Blankets on each of their isolettes. Because I can’t control that, what I could control was baking some bread and cooking a turkey and bringing some green beans. We are fortunate in that we have been in the NICU long enough to be out of the “shock” phase. I am not crying every day. We live close enough that food can arrive at the hospital still warm. There are many others who arrived in the NICU within the last few days, live far away, or just have less support than we do. It was lovely to join together with our “NICU Family” for Christmas.

Finn

Update on Finn (our baby C): Finn loves to eat and you can see it from his growth! On the day he was born, he weighed 840g (1lb, 14oz). That is about twice as heavy as a soccer ball. As of today, he weighs 1080g (2lb, 6oz), which is half as heavy as a chihuahua. He has grown 0.75 inches longer and is now 14 inches long.

Finn Day 1

Finn Day 25

At the risk of providing oodles of teasing opportunities of his siblings later, Finn is our baby with no issues on his brain scans. Although the issues of his siblings are not really concerning, according to the doctors, it is much easier to be unconcerned when there are no issues!

Finn has struggled, however, when it comes to breathing. His lungs have been the most poorly developed and he has made some improvements on the ventilator, but not many. For this reason, Finn is now undergoing the DART protocol. The DART protocol is a super low dose of steroids given over 10 days to help lung development. We have received many warnings, one of which is that Finn may exhibit “roid rage” while he is being medicated, but the risks are outweighed by the benefits. The goal is that Finn will be able to be on a CPAP by the end of the treatment, or at least much closer to it.

Finn is also eating like a champ. He receives 11ml of food 8 times each day (about 3oz). His food is also fortified with extra fat and calories. This is great because it’ll help him develop much faster. Every rose has its thorn, though, and in this case, it’s that Finn’s poop is so stinky that he is developing a reputation throughout the NICU. We hope that this is just a phase.

Finn, like his brother, had a large PDA. In Finn’s case, though, he received the treatment of indocin. The medication worked without the scariest side effect (perforated bowels) and Finn’s PDA is now very small and should close on its own.

Finn’s personality has also shown itself. He likes to be the boss. He doesn’t like being messed with and will desat pretty quickly. He also most prefers to be on his belly with his head facing to his left. This is most likely going to be alleviated by the steroid treatment, but for now, he gets fussy if not positioned as he prefers. He also likes to try to stand on his head. When he is positioned on his tummy, he straightens his legs and pushes his butt right up in the air, putting his weight on his head. It’s super cute but makes it hard to wrap him up like a burrito.

Like this

Not this

Finn was also the last to open his eyes, but now that they’re open, he is making up for lost time!

I love that they all look like miniature old people!

Aubrey

Aubrey has grown very quickly. On the day he was born, he weighed 960g (2lb, 2oz). That is about 1/2 the weight of a 2 liter bottle of soda. As of today, he weighs 1190g (2lb, 10oz), which is almost as heavy as the human brain! He has grown 0.75 inches longer and is now 15.25 inches long (which is slightly taller than a bowling pin).

Aubrey Day 1

Aubrey Day 25

Aubrey had our largest scare so far with the perforated bowel. We called on everyone we could think of for support and prayer. My favorite doctor, Dr. Hema, developed the scale of worry for me (1 being no worry - we won’t get any of those, Dr. Hema said), 10 being concerned the baby may not make it an hour). Aubrey was at a 6, went to an 8, had surgery, was at a 5 and is now at a 2). His bowel perforation has healed and the nurses can hear that they are functioning again Aubrey will start getting milk again tomorrow and his little incisions are now itty bitty scars. His medical team did a great job and we are so grateful for them.

Aubrey at a 6

His skin is grey, he looks like he swallowed an apple, and his veins are painfully visible.

Aubrey at a 3

He is zoned out on morphine, but you can see he is pink and his veins have faded appropriately back into normalcy.

Aubrey has also made great improvements with his breathing. He was intubated (on ventilator support, essentially, a machine that breaths for him) from the time he was born until December 15, so for 17 days. It is not unusual for a baby to go on and off a ventilator for a while, but Aubrey has stayed off of the support and has continued to make improvements on the CPAP. Over time, the doctors decrease the amount of oxygen and the pressure provided by the breathing support and Aubrey continues to be able to ween from the support bit by bit. Before the bowel perforation scare, Aubrey’s lungs bled a bit. The doctors had linked this to his PDA. Because the perforated bowel was an acute issue that needed immediate treatment, the doctors did not address the less worrisome lung issue. Now that Aubrey has grown and gotten bigger, his lungs have become stronger and there have been no more issues of blood in his lungs.

Aubrey still has the PDA, but treatment for a PDA is with a medication called indocine that can sometimes cause a bowel perforation. Because Aubrey has already had a bowel perforation, he cannot receive the indocine anytime soon. PDAs will often close on their own so we are hopeful that his has closed as he has grown and gotten stronger.

Aubrey’s brain ultrasounds have shown no issues except for a very tiny benign cyst that is of no concern. He will receive another scan at 37 weeks, which is standard for all babies.

Because of Aubrey’s surgery, he has only been held once, and by me. Holding babies is very important for them, even for premature babies. They call it Kangaroo Care and it is basically making sure as much of their skin touches as much of your skin as possible. It is beneficial for babies to be held by pretty much anyone, but most beneficial for them to be held by their mothers (because of hormones) and then fathers (babies can recognize the scent of their parents). Tomorrow, I am going to hold Aubrey again and I am so looking forward to it. THe time we have waited for Aubrey to heal has been absolutely necessary, but we have definitely spent much less time holding him and touching him. Unlike with Lydia and Finn, we haven’t changed Aubrey’s diapers, taken his temperature, or even held his little hand as much.

Aubrey is our baby that tolerates his care times the best, though. All of the babies are constantly monitored for numerous vital signs. The ones I can read are their heart rates, the breathing rates, and the concentration of oxygen in their blood. When their blood oxygen is above 95%, it’s called “high-satting” and when it’s below 85%, it’s called “low-satting.” With a ventilator or NIV, oxygen is being constantly provided to the baby. If too much oxygen is provided, it can cause vision problems and can prevent a baby from improving his ability to breathe on his own. If oxygen is too low, that can cause brain damage and make babies turn blue. While babies are so young, it is not unusual for them to have variations in their oxygen saturation where they high-sat and low-sat for short periods of time. Aubrey is our only baby who doesn’t low-sat during his care times (diaper changes, bandage changes, re-positioning, etc.)

Lydia

Lydia has finally, as of today, surpassed her birth weight. On the day she was born, she weighed 660g (1lb, 7oz). That is just slightly heavier than a basketball. As of today, she weighs 688g (1lb, 8oz). She has grown 0.25 inches longer and is now 11.75 inches long (which is 2/5 the height of Mini-Me, Verne Troyer).

Lydia Day 1

With my (swollen) hand for scale.

Lydia Day 25

With the hat that’s a bit too big for scale. (Note: she can only sleep face-planted because of her breathing support. Her eccentric nurse said Lydia likes that position.)

On the inside, she’s made a great deal of changes, too! She went off ventilator support the day after she was born, graduating to a bubble CPAP. After a bit of a mishap with her feeding tube, she moved from the CPAP to an NIV. The CPAP was the big plastic tubing that provided continuous support and made it easier for her to breathe. Lydia did all of the breathing, but the CPAP helped her lungs stay open between her breaths. The NIV provides more support by helping “trigger” breaths so she doesn’t have to work so hard to breathe. Although she was doing well on the CPAP, when she breathed in a bit of milk (aspirated it), it caused irritation in her lungs, That’s going to take some time for her to recover from. Lydia is also now eating “full feeds” which means, for her, right now, she’s eating 9ml of milk 8 times each day (a total of 72 ml or 2.5oz or 1/3 cup or 5tbsp) each day. She also poops and pees very well.

Lydia has a small PDA in her heart that the doctors haven’t discussed treating yet as small PDAs typically close on their own. Lydia has a small membranous VSD in her heart that will not be treated in the NICU. However, she will be followed by a cardiologist after she leaves the NICU. if the VSD doesn’t close on its own by the time she is 2 or so, we would discuss treatment options at that time. An untreated VSD is what will often cause the high school sport player to suddenly die while on the field. A middle school friend of mine passed away from a VSD while playing football in high school. In North Carolina, every baby, whether premature or not, is now checked for a VSD so they can be treated. The available treatments are very effective so it makes since to screen and treat VSDs.

VSD

Hopefully, this will close on its own. If not, a cardiologist will help us come up with a treatment plan while Lydia is still a toddler.

Lydia’s brain also has the slightly enlarged ventricles in her brain. She will receive another ultrasound of her brain next week to see if the enlargement has increased, decreased, or stayed the same. For this, we are hoping for no change or that they decrease. The risk is that they grow and that puts pressure on her brain and hinders the growth of brain tissue. As of now, that risk is remote enough that the doctors aren’t concerned. I always tell my clients that they need not worry if I am not worried, The doctors say the same thing and I am trying hard to adhere to their advice.

Lydia’s personality is also showing itself. All of her nurses have told us that she is sassy. She is also incredibly strong, having achieved so much so quickly. The listing above may seem like she is weak and in grave danger, but for being born at 26 weeks, her progress is amazing. When the nurses do her care (change her diaper, adjust her tubes, listen to her heart, breathing and intestines, etc.), she expresses her displeasure for the parts she does’t like. Whenever they put the breathing support in her nose, she makes it clear she hates it and grabs on and tries to pull the tubes out. As soon as the nurses do what Lydia wants (wrap her up and tuck her in), she stops fussing. Her little cries are soft and sound like a kitten’s, but they’re full of emotion.

All is well, but things are changing.

Yesterday, one of the doctors (Dr. Jesse) told me that days of calm stability are the days we should really embrace and enjoy. It makes sense. Growth isn’t going to happen in a day, but we have already learned that setbacks can.

Today, Lydia looked “tired.” She was struggling a bit to breathe (which means that her little tummy was clearly working and she was basically doing the reverse inch worm. Babies breath a lot with their stomachs and apparently moreso when they are struggling). They did a blood gas (where they test the gasses in her blood) and she had a lot of carbon dioxide build up. They did an x-ray and it looked like her feeding tube may not have been far enough down so some of her food may have gone into her lungs. They are doing a blood culture to see if she has any infection. The nurses readjusted her feeding tube and the respiratory therapist changed Lydia from a CPAP to a step slightly more supportive. The tubes that go into her nose are smaller and she doesn’t have the chin strap, so she is certainly more comfortable. They are doing another blood gas on her at 2:00 P.M. so we’ll see how much better she is doing. She looked much better by noon than she did this morning and she was certainly active, having kicked off her dandleroo (the thing that swaddles her).

Finn is doing well and the doctor talked to me about treating him with steroids. He is the furthest behind on breathing and the steroids can really help his lungs develop. This is something Brise and I have to sign a consent form for because there are some risks. 10-20 years ago, babies were often aggressively treated with steroids and in high doses because it works well to help lung development. However, over time, doctors realized that the steroid treatment had an unintended side effect of cognitive issues. Now, doctors use that DART protocol, which is a very very small dose of steroids. Dr. Hema gave me a policy statement by the American Acadamy of Pediatrics (available here) so I could read more about it. She highlighted the relevant parts but I’ll read the entire thing. What is important is that studies have shown that babies treated with the DART protocol have no statistically significant difference in development from babies not treated. Another side effect is that babies get “roid rage” where they become “more active.” The doctor pointed out that Finn is already pretty active (remember, he’s my baby B, which we had already decided was a daredevil like his father). The increased activity would end when the 10 day treatment was over and I’m not concerned about that. If we don’t treat him, he will likely improve regardless. However, it will probably take a lot longer. The longer he is intubated, the greater the risk of infection and complications from the breathing support. I am not sure what we will decide yet, but I imagine we will decide as soon as I have time to read the article, Brise’s mom has time to read the article, and one of my phone-a-friend doctors has time to talk it over with me.

Today is a great day for Aubrey and by that I mean it’s a boring stable day of hurrying up and waiting.