(warning: lots of background before I get to my point. sorry.)
Something you may not know about life in the NICU: we share the large room with 4 other babies. Each baby has their own bed and medical setup and space, but it is not exactly private since there's not walls between them. I'm actually okay with this. . .I think of it as the "never-ending playdate" and like that Aria always has other people in the room with her even when I can't be there.
Since we're there every day, we have become quite familiar with the other babies in the room as well. Only one of the babies has been there longer than Aria. The current set of 5 babies in Aria's NICU has been together for around 10-14 days (hard to keep track. . .) That's pretty amazing since the first couple weeks that we were at Primary Children's it seemed like there was a different baby in the neighboring beds like every other day.
This past week all of a sudden we've seen a ton of progression in the other babies in the room (well both seen and overheard some conversations. . .haha). As of a couple days ago, none of the babies in the room have a personal nurse - you can gauge how "delicate" a baby's condition is based on whether they have their own nurse or share a nurse with another baby. When Aria was first admitted she had two nurses all to herself. By the time I saw her on Day 4 she had one nurse to herself. As of last week she is now considered stable enough to share a nurse with another baby.
A week ago all 5 babies were on ventilators AND warmers (heated beds until they can maintain their own body temperature). Now Aria is the only one on a ventilator, and she's one of two still in a warmer.
The baby who has been there longer than Aria seemed to be in really rough shape when we first came to PC, but is doing amazing now. She even was well enough, and tube-free enough, to have a real bath in a tub tonight!
Another baby is recovering great from the surgeries she needed, and has a carseat test next week to start preparing for discharge training, I was there when her mom got to hold her for the first time. So tender.
A third baby just has to get her feeds up but is estimated to go home in another week or so.
So why am I telling you all this? Well, because it's hard watching all that progress sometimes knowing we're not part of it. The things that are wrong with Aria CAN'T be fixed. We just hold her as often as she tolerates and hope she can feel our love. I'm so, so happy for the other babies. Just insanely jealous :)
Aria
Wednesday, July 30, 2014
Sunday, July 20, 2014
Small Steps
Shockingly, the rest of the world has continued on even though our lives have been blown apart. We're taking small steps every day to try to learn how to keep moving in life.
Last week Mike started back to work. Because he's in a management position he had to adjust quickly to being around a lot of coworkers again. I had it a bit easier. I only worked a few hours, and most of those were non-patient hours where I just caught up on paperwork. So I only had to see one patient (although OF COURSE I gambled and lost, because I had figured that there was no way that patient knew my situation. . .he did, and brought it up immediately upon seeing me. He was very sweet about it though so it was okay. Plus I've been working there 8 years, so I'm going to need to get used to long-time patients asking me about Aria.)
We had people over to the house yesterday! That was huge. It was Bennett's birthday, and the poor kid has really been a trooper these last couple weeks. He is bored out of his mind though because he's only been around adults since Aria was born. So we invited over a bunch of neighborhood kids and their fams for a hastily thrown together birthday party yesterday. We bought a few little pools and a slip 'n' slide and some other little water games and just let all the kids play for a couple hours while the adults chatted. It was nice to be able to talk to other people again, about normal things (although I admit to passing around some pictures of Aria. Couldn't help myself. I have a new baby and want to show her off just like any mama!)
Today we tried to go back to church for the first time. I say "tried" because we intended to go for all of sacrament meeting but ended up leaving right after the sacrament since I had basically been crying on and off since the opening song. We have good days and bad days, and apparently church was just too much for me to handle today (although the baby blessing that took place definitely didn't help). So next week we'll try again.
Small steps. We're working on it.
Last week Mike started back to work. Because he's in a management position he had to adjust quickly to being around a lot of coworkers again. I had it a bit easier. I only worked a few hours, and most of those were non-patient hours where I just caught up on paperwork. So I only had to see one patient (although OF COURSE I gambled and lost, because I had figured that there was no way that patient knew my situation. . .he did, and brought it up immediately upon seeing me. He was very sweet about it though so it was okay. Plus I've been working there 8 years, so I'm going to need to get used to long-time patients asking me about Aria.)
We had people over to the house yesterday! That was huge. It was Bennett's birthday, and the poor kid has really been a trooper these last couple weeks. He is bored out of his mind though because he's only been around adults since Aria was born. So we invited over a bunch of neighborhood kids and their fams for a hastily thrown together birthday party yesterday. We bought a few little pools and a slip 'n' slide and some other little water games and just let all the kids play for a couple hours while the adults chatted. It was nice to be able to talk to other people again, about normal things (although I admit to passing around some pictures of Aria. Couldn't help myself. I have a new baby and want to show her off just like any mama!)
Today we tried to go back to church for the first time. I say "tried" because we intended to go for all of sacrament meeting but ended up leaving right after the sacrament since I had basically been crying on and off since the opening song. We have good days and bad days, and apparently church was just too much for me to handle today (although the baby blessing that took place definitely didn't help). So next week we'll try again.
Small steps. We're working on it.
Photo Dump
So I have been pretty stingy about sharing pictures of Aria publicly. It's kind of hard to explain why. As we've shared, she does have some physical deformities. While they're not hugely obvious at first glance, it is definitely hard to miss. So I've only posted a couple pictures of her, ones that hide those deformities a bit. I'm definitely being a protective mama bear. Let me say up front that I am in no way ashamed of her deformities, and in fact have come to find most of them quite charming and part of what makes her HER. However, the first time I saw my daughter at 4 days old, I had a really hard time seeing past all the physical things that were different about her.
To be fair, the first time I saw her, she had her skull wrapped because they were doing an EEG of her brain. That would unnerve any parent to see your newborn like that. Plus she was so extremely swollen, and had a million tubes and wires coming out of her, and her machine alarms kept going off. . .it was all very overwhelming and scary.
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| First family picture, taken within minutes of meeting my daughter. |
Also, again. . .I had never met her, really. The tiny sedated body lying in front of me in no way resembled the feisty little baby I had come to be familiar with inside my belly. So all I had to go on was the physical stuff at first.
Within days that changed, as I spent time with her and started to have a relationship with my baby. Although to an average observer she seems to never change, just sleeping all the time, we've spent enough time with her that we have a good feel for the spirit inside that imperfect body. We know her stretches, the different faces she makes, how to read into the way she's breathing on any given day, etc. Now when I look at her, I see her cute button nose, that gorgeous thick head of hair, her squishy little cheeks, and fingernails so small they almost disappear. When I look at Aria I don't see her deformities anymore. I just see HER.
So, I am very careful about what pictures I share, and what pictures I allow family to share. Because I want everyone to see what I see when I look at my daughter. Just a beautiful baby girl. So here are a bunch of pictures that I love. Enjoy :)
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| Love how this pic captured the pure happiness on Mike's face. He always looks goofily happy like this when he first lays eyes on her each day. |
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| She doesn't/can't open her hands so we're constantly wedging our fingers into her tiny palms in order to hold her hands. I love seeing Mike's large hands next to her itty bitty ones. |
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| I've come to really love how her cheeks always look so cute and squishy because of the way her ventilator pushes them up. |
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| Because of muscle contractions in her arms, she can't straighten them. Usually her arms are bent with her hands curled up on her chest somewhere, but this day she had them pulled up very cutely under her chin. |
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| Ahhh I love this little girl. I love that this picture captures that. |
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| Mike is completely smitten by this little lady. It's so adorable. |
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| I had Mike take this picture because this was the most comfortable Aria had ever looked while I held her - her body was relaxed and nestled into me. |
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| One of my absolute favorites because you can see the utter delight on my face. This is one of the few times she cracked an eye a millimeter and my sister happened to capture the moment. |
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| I love this one because it was my view of her - I snapped this pic with my phone while cradling her. She's nestled nicely into my arm. |
3 week medical update
I need to do better about updating on what's going on with our cutie, medically. I lose track of the timeline.
So there are 3 main teams that we've been working with at Primary Children's - Genetics, Neurology, and Infectious Disease.
The "big" test we were waiting on came back this week. It was a SNP ray which is a genetic test of her chromosones. The lab combs through her sample looking for genetic markers in her DNA that could tell us if she has some genetic marker for any particular syndrome. Unfortunately, her test came back with nothing remarkable showing for her. So we still have no idea what's going on.
In light of that, the hospital sent samples for about 4 more obscure genetic tests. A couple of which required a second spinal tap for my poor baby (don't worry, we always make sure they sedate heavily when doing anything that could be uncomfortable for her.) We don't expect to hear back on these for about 3 weeks because it's the kind of thing where there might only be a couple places in the country that test for those specific syndromes. The genetics team at the hospital has expressed that at this point they've tested for basically everything they can think of that she shows any of the partial symptoms for, so if this last set of tests comes back negative then we will still be in the dark as to her diagnosis.
The neurology team is also at the end of what they can do. If the genetic tests come back negative, then neurology can do a nerve conduction test and some other kind of test to try to determine if whatever's wrong with her nerves is progressive or not, but we probably won't do that. It won't add enough information to warrant having her poked all over with needles.
The infectious disease team is also done, I believe. They have tested for everything they possibly can and all her tests have come back negative. For the first two weeks of her life they would call me every few days and have me answer a long series of questions, trying to figure out if there was any chance I could have contracted something while pregnant that could have passed to Aria in utero. Even something as little as having a fever could have been an indicator of something else going on. But other than the extroardinarily horrible morning sickness this time around, I was quite healthy this pregnancy. . .no, I don't remember ever being sick while pregnant. . .no, I didn't spend time with any farm animals. . .no, I don't live in an area with higher infectious disease contamination. . .etc etc etc. So they have nothing to go on. For a while the biggest disease they were considering was CMV, which is quite common but potentially deadly when contracted in utero, but even though she shows many of the signs for it, it doesn't account for everything that's wrong with her body and none of the tests have come back conclusive for that.
We've kind of accepted the fact that we may never know what on earth happened. It's just discouraging because we'd like to have at least a little closure on that side of things.
So there are 3 main teams that we've been working with at Primary Children's - Genetics, Neurology, and Infectious Disease.
The "big" test we were waiting on came back this week. It was a SNP ray which is a genetic test of her chromosones. The lab combs through her sample looking for genetic markers in her DNA that could tell us if she has some genetic marker for any particular syndrome. Unfortunately, her test came back with nothing remarkable showing for her. So we still have no idea what's going on.
In light of that, the hospital sent samples for about 4 more obscure genetic tests. A couple of which required a second spinal tap for my poor baby (don't worry, we always make sure they sedate heavily when doing anything that could be uncomfortable for her.) We don't expect to hear back on these for about 3 weeks because it's the kind of thing where there might only be a couple places in the country that test for those specific syndromes. The genetics team at the hospital has expressed that at this point they've tested for basically everything they can think of that she shows any of the partial symptoms for, so if this last set of tests comes back negative then we will still be in the dark as to her diagnosis.
The neurology team is also at the end of what they can do. If the genetic tests come back negative, then neurology can do a nerve conduction test and some other kind of test to try to determine if whatever's wrong with her nerves is progressive or not, but we probably won't do that. It won't add enough information to warrant having her poked all over with needles.
The infectious disease team is also done, I believe. They have tested for everything they possibly can and all her tests have come back negative. For the first two weeks of her life they would call me every few days and have me answer a long series of questions, trying to figure out if there was any chance I could have contracted something while pregnant that could have passed to Aria in utero. Even something as little as having a fever could have been an indicator of something else going on. But other than the extroardinarily horrible morning sickness this time around, I was quite healthy this pregnancy. . .no, I don't remember ever being sick while pregnant. . .no, I didn't spend time with any farm animals. . .no, I don't live in an area with higher infectious disease contamination. . .etc etc etc. So they have nothing to go on. For a while the biggest disease they were considering was CMV, which is quite common but potentially deadly when contracted in utero, but even though she shows many of the signs for it, it doesn't account for everything that's wrong with her body and none of the tests have come back conclusive for that.
We've kind of accepted the fact that we may never know what on earth happened. It's just discouraging because we'd like to have at least a little closure on that side of things.
Monday, July 14, 2014
Two Week Update
Our baby is two weeks old today! Which is crazy, since we didn't expect her to live for even 24 hours. Oh, and also the fact that I'm not due for another month!
For the first time, Aria looked like the preemie that she is today. She has been struggling with excess fluid problems since birth which is what makes her appear to be just a normal chubby baby, and so her swelling fluctuates day to day. She had almost no swelling today so we were able to see how small she actually is. They weigh her every day too, and in the course of her life so far she has has weighed a full pound more - meaning that she was carrying a full pound of fluid!! Today she was back down to 5 1/2 lbs which is about where she's supposed to be. She looked so scrawny though - when I walked into the NICU today I kind of did a double take and said to Michael, "is this our baby??" and looked around wondering if they had switched her spot or something.
I wanted to go into more details about all her medical problems, but it's too exhausting. Instead let me summarize what life has been like for Aria so far, hospital-wise. My sweet baby girl has put up with:
For the first time, Aria looked like the preemie that she is today. She has been struggling with excess fluid problems since birth which is what makes her appear to be just a normal chubby baby, and so her swelling fluctuates day to day. She had almost no swelling today so we were able to see how small she actually is. They weigh her every day too, and in the course of her life so far she has has weighed a full pound more - meaning that she was carrying a full pound of fluid!! Today she was back down to 5 1/2 lbs which is about where she's supposed to be. She looked so scrawny though - when I walked into the NICU today I kind of did a double take and said to Michael, "is this our baby??" and looked around wondering if they had switched her spot or something.
I wanted to go into more details about all her medical problems, but it's too exhausting. Instead let me summarize what life has been like for Aria so far, hospital-wise. My sweet baby girl has put up with:
- the full course of life-saving measures within hours of being born when she was "coding" - meaning resuscitation, epinephrine to her heart, a breathing ventilator, a feeding tube, a million medications to control her blood pressure and every single other system in her body, etc
- so many xrays that I've lost count
- a partial blood transfusion
- multiple EEGs on her brain
- an MRI of her brain and one of her body fluids
- a continuous PICC line in her leg to administer ongoing medications
- a feeding tube
- a spinal tap
- CT scan of her body
- being intubated with a ventilator (twice - tried nose tubes for a couple days but it was no good)
- a tube that is run through her umbilical cord so that they don't have to prick her every time they need blood drawn, which is multiple times a day
False Alarm
So last night was pretty horrible. We were awakened at 2am by Mike's phone ringing. We were both half asleep so he didn't pick it up in time, but all it took was for him to look at the screen and say "It was Primary Children's" and we were both instantly awake. He immediately called back and we were put on hold for a minute while the front desk transferred us to the NICU. In all honesty, it might have been the worst 60 seconds of my life. We didn't say anything to each other while we waited, but from the terrified look on Mike's face I knew we felt the same way. I kept thinking, "How could she have turned that quickly? We were with her just a few hours ago!" Finally her nurse picked up. . .as it turns out, it was all a big mistake. . .some other parent had called requesting an update and the nurse was told the wrong infant number so she had tried calling us back not realizing we were the wrong parents. As soon as I heard Mike say, "wait, so Aria's okay?" I just burst into tears. Needless to say, neither of us fell back asleep for a long time.
It was an interesting "test run" for sure. Really, we could get The Call at any time. We KNOW we could get The Call at any time. And yet it was really shocking to feel how NOT READY we were for that call. I guess there's no way to ever be "ready" to get the call that says that your baby is dying.
It was an interesting "test run" for sure. Really, we could get The Call at any time. We KNOW we could get The Call at any time. And yet it was really shocking to feel how NOT READY we were for that call. I guess there's no way to ever be "ready" to get the call that says that your baby is dying.
Saturday, July 12, 2014
Aria Snoring
Because when she does something so basic and utterly human. . .it's easy to look at her and forget about all her other problems for a minute.
Friday, July 11, 2014
Aria's Birth Story
I wanted to give some more detail on what happened exactly on the day that Aria was delivered. Sorry if this is TOO many details, it's for my records as well.
I was scheduled on June 30th for a third trimester ultrasound. I hadn't been expecting another ultrasound after the 20 week one, but apparently my doctor's office had started doing routine third trimester ultrasounds at some point from when I had Bennett 3 years ago. It was scheduled for first thing in the morning, so I asked Michael if he wanted to come since ultrasounds are always fun.
At the ultrasound, the tech was a little worried for two main reasons: My amniotic fluid levels were very low, and the baby's head was measuring 3 weeks ahead of schedule while the abdomen was measuring as less than 10th percentile. I wasn't too worried about the fluid thing because we actually had that same problem with Bennett (he stopped growing around 35 weeks because of very low fluid levels so for the last few weeks I had to go to the hospital every few days for a repeat ultrasound and non-stress test, but he always performed brilliantly on the non-stress tests so they'd just monitor me for 20 minutes then send me home, and we induced at 39 weeks) and clearly he is just fine, although small. The thing about the baby being not proportional kind of worried us though. The tech explained that one possible side effect of the growth restriction is something called "head sparring" (I think??) where all the nutrients go to the head instead of being dispersed properly throughout the body, so maybe that was the cause.
I had my check-up with my doctor scheduled immediately after so he looked at the ultrasound results and decided to send us to the hospital for a repeat ultrasound. His hope was that things weren't as questionable as they looked, and that maybe the baby was just sitting in a funny position or something and a repeat ultrasound would show better stats. He also wanted us to do a NST (non-stress test) afterward. The plan was we'd do repeat ultrasounds and NSTs every week until I was far enough along to induce, just like with Bennett. So we weren't too worried yet since we'd been down this road before and figured it was probably nothing. In fact I even told Michael as we headed to the hospital that he could go to work if he wanted since we hadn't anticipated the doctor's visit taking up so much time (we had taken 2 cars). He said that he would feel better sticking around because he wouldn't be able to concentrate at work until he knew for sure that everything was fine.
At Orem Community Hospital, the repeat ultrasound did look a little better - while the baby's head was still measuring 3 weeks ahead, the rest of the body was measuring more on schedule. Also my fluid levels, while still low, were closer to a normal range. So we headed into a patient room for the NST. Again I tried to convince Mike to go to work since the ultrasound had seemed fine but he insisted on sticking around. The nurse got all my monitors started and I laid back hoping they'd send us away after 20 minutes like they always did with Bennett. At that point I really didn't think anything would come of things and was mostly impatient because I also was planning to go to work afterward and I had a lot to get done.
We probably sat there for about 20 minutes before the nurse came in to update us. We thought she was just going to say things looked good and we could go. Instead she said that she didn't really like what the monitors were showing because the baby's heart rate kept dipping. She had me turn from my back onto my side in case it was a simple fix like getting pressure off my spine, and left the room. Another 20 minutes and she came in again. She had sent the monitor strip to my doctor asking him to call her with how to proceed. The baby's heart dips hadn't changed by having me switch positions. Alongside with that, when the baby's heart rate was normal it was nearly flatlined, where they normally like to see more variations.
She promised to come back in once she heard back from the doctor. At this point we were starting to get a little concerned, but were thinking the outcome would be something like I'd be coming back to the hospital to be rechecked every couple days instead of just weekly. After all, I was only 34 weeks along, so it was way too early to do anything more, right?? Then the nurse came back in and said that my doctor was on the phone with the Maternal Fetal Medicine specialists down at Utah Valley Regional Medical Center so they could decide what to do with me. I asked her if this kind of a thing meant I'd be coming back to the hospital for repeat tests every couple days. She said "to be honest, I don't know if they'll even send you home like this since they can't monitor the baby at home" I was super bummed because again, I didn't think they'd deliver the baby this early, so I was thinking she meant I'd be hospitalized for a few weeks until the baby was far enough along to deliver.
About a half hour later my doctor came in and said "okay, here's what's going on: you're having this baby today." He explained that between everything they were seeing, there were just too many things that they weren't comfortable with, and because they couldn't fit all of the weird things into one diagnosis, that made them even more nervous. And because I was so early in the pregnancy, I wasn't dilated at all so if they induced me it would take most of the day before my body could respond enough. He didn't want to put the baby through the stress of a long labor since the baby was already having a hard time. Because of all these reasons, he strongly advised an emergency C-section. I had always had such bad impressions of C-sections so I was getting really nervous, but I also felt like that was the right path for the baby. I asked the doctor if we should go home and pack a bag and come back, and he said NO, that he wanted me to gown up and get wheeled across the hall and get baby out within half an hour. That's when I started really freaking out. We had 10 minutes to hurry and make a flurry of calls to our families and to our workplaces and arrange for how Bennett and our dogs would be cared for through the next few days. By the time the nurse came in to start my IV and walk me across the hall I was shaking pretty badly from nerves. It seemed like events were happening faster and faster as the day progressed so I was having a hard time processing. They had mentioned that if the baby wasn't doing as well as they hoped, they would have to send it to the UVRMC NICU because they're better equipped, however the Orem NICU is 34+ weeks so we were hopeful that she could stay at Orem, that maybe she'd just need help breathing for a few days until her lungs developed more, and then we could take her home.
They took me across the hall to the C-section room and within 10 minutes were ready to go. I was being such a big baby about everything - I was terrified of feeling any pain since I wasn't in any kind of pain since I wasn't in labor. But the spinal was okay, and by the time Mike came in all gowned up I was pretty out of it. Not sure if that's because of the drugs or if I was just in shock and mentally checking out. From the time the doctor said "okay, here we go" to when they pulled the baby out took all of MAYBE 15 seconds. Emergency C-section work for sure! We hadn't found out the gender beforehand, and the nurse had to prompt the doctor to tell me if it was a boy or girl because him and the assisting doctor were so distracted attending to the baby. So I think he ended up saying something like "huh? oh you want me to say? it's a girl!" Suuuuuper anti-climactic after 7 months of not knowing. Maybe it would have been different if it was a normal, joyful birth, but If we ever have another child I'm just going to find out the gender. I had always explained my decision to not find out as "well, this baby has been a surprise since the very beginning, so we might as well be surprised from beginning to end" - I just wasn't anticipating having SO MANY surprises at the end, and not the good kind. Aria was born at 1:19pm. Her Apgar score was a 2. They didn't do the normal weight/length because they were busy trying to get her to breathe, but later in the day when they checked her in at Primary Children's she was measured at some point and came in at 4 lbs 15 oz, and 16.7 inches long.
I don't remember things very clearly in the couple hours following the C-section - it's all kind of a blur. I remember laying on the table while they finished up with me, and asking Michael if the baby was okay because she wasn't crying. He said he thought so but he couldn't see her. So I made him go see where she was in the room so that he could be near her. She was surrounded by people trying to clean her up and help her breathe so he couldn't get close. I don't know how long it was before they took her to the NICU - not more than a few minutes, I think, and as they started to run out they quick held her up for me to see, but since she wasn't breathing they were in a hurry and I only got to see her from across the room for like 2 seconds (which I'm fine with, I'm glad they were putting her needs first) I got stitched up, transferred to another bed, and wheeled into my recovery room. My doctor came in not long after to talk to us and to tell us that they needed to transfer the baby to Primary Children's (apparently Provo was full). He said that the baby wasn't doing very well with her breathing, and also that they had noticed some visible skeletal deformities that led him to believe she had some type of dysplasia and that Primary Children's was better equipped to look into that and figure out what was wrong. We were shocked to hear that because we had no indication there were any problems from the many ultrasounds that had been done. So now instead of just needing some help breathing for a few days, our new reality was that she would need help breathing until her lungs developed, plus she had a physical handicap that would impact her life. My parents live in Orem so we called my dad who rushed over, and he and Michael were allowed into the NICU briefly to give her a blessing,
My doctor and nurse stayed with me until Primary Children's arrived very shortly after (via Life Flight - which alerted us to the gravity of the situation, since at first we'd been told they'd just send an ambulance). Then Mike and I waited for over an hour while the Life Flight team got Aria all hooked up to their transport machine and ready for the helicopter ride. Finally, they wheeled her into my room for about 2 minutes so that I could quickly see her before she left. They opened the glass and I touched her, just kind of in shock, and then they left as quickly as they'd come. We had debated having my dad run and get Bennett, who was at their house, so that he could also see Aria when they brought her to my room, but I'm so glad we didn't. I was freaked out enough by seeing my baby in this huge contraption, I don't even know what Bennett would have thought.
After that Mike and I had about an hour to ourselves, so we got to work on picking out a name for the little miss. We had kept a running list of possible names but of course hadn't narrowed it down yet. We came down to 2 possible names, and were both leaning toward Aria, but we wanted to wait and see her again to make sure it felt right. Primary Children's called to briefly confirm that Life Flight had arrived and that they would call again in a bit with an update. Afterward Mike left to go home to pack us a hospital bag and see Bennett for a little bit, who was now back at our house with my sister. By this time it was about 7pm. My new nurse came in and brought all of the supplies so that I could try to pump some milk - she explained that I should start a pumping schedule right away and they would store it in the fridge, and each day Mike could take the milk up to Primary's for them to give to the baby. Even though I had no problems nursing Bennett when he was born, I had my doubts this time since I was only about 6 hours from surgery and wasn't sure if my body had figured out yet that it wasn't still 34 weeks pregnant. So I was shocked but pleased when I was able to pump about a teaspoon of colostrum. Then I settled into bed to try to nap a bit.
Shortly after, I received what I will forever remember as "The Call" from Michael. I was a little drowsy when I answered the phone, but quickly woke up as he explained that Primary Children's had just called him and had advised him to come up right away as they were very worried about the baby. They had needed to start life-saving measures on her as her body was shutting down. An initial scan had showed not only problems with her skeleton, but calcification in her brain as well which usually indicates some type of brain damage. In addition, she was still not breathing on her own, and the left ventricle of her heart wasn't working. There were multiple other problems as well but those were the biggest ones. All things considered, they did not expect her to live the night. Michael stopped by my hospital quickly to drop off a phone charger so he could call me when she passed away. We also felt strongly that we should have him give her one of the ordinances in our church where he officially gives her a name and a blessing, so that she would be officially named before she passed. I said to him "I think we should name her Aria" and he said "I agree" and that was it. Then he was off to Primary Children's and I started my restless vigil through the night waiting for the worst call of my life. In a 9 hour period we had gone from thinking we were in a healthy pregnancy, to thinking we had a child with a deformity, to expecting our child to die the same day as her birth.
I honestly don't think I could have made it through the night, and the rest of that long week, without my nurses at Orem Community Hospital. They were amazing. There were several that cried right alongside me and they always made sure to check on me much more than they were required to.
The call that night never came. Instead, Michael came walking into my room at 6:30 the next morning. He reported that, miraculously, the doctors had been able to stabilize Aria to a degree. She was still 100% reliant on machines and medications to do her breathing and pump her heart for her, but for the moment she was still with us. Her specialists had sent Michael to go be with me and promised to call the second she started to go downhill again.
The last 10 days since her birth have been a whirlwind of ups and downs, and I will describe some of those in a separate post. For now I'll just leave you with one of the first pictures Mike took of our gorgeous girl.
I was scheduled on June 30th for a third trimester ultrasound. I hadn't been expecting another ultrasound after the 20 week one, but apparently my doctor's office had started doing routine third trimester ultrasounds at some point from when I had Bennett 3 years ago. It was scheduled for first thing in the morning, so I asked Michael if he wanted to come since ultrasounds are always fun.
At the ultrasound, the tech was a little worried for two main reasons: My amniotic fluid levels were very low, and the baby's head was measuring 3 weeks ahead of schedule while the abdomen was measuring as less than 10th percentile. I wasn't too worried about the fluid thing because we actually had that same problem with Bennett (he stopped growing around 35 weeks because of very low fluid levels so for the last few weeks I had to go to the hospital every few days for a repeat ultrasound and non-stress test, but he always performed brilliantly on the non-stress tests so they'd just monitor me for 20 minutes then send me home, and we induced at 39 weeks) and clearly he is just fine, although small. The thing about the baby being not proportional kind of worried us though. The tech explained that one possible side effect of the growth restriction is something called "head sparring" (I think??) where all the nutrients go to the head instead of being dispersed properly throughout the body, so maybe that was the cause.
I had my check-up with my doctor scheduled immediately after so he looked at the ultrasound results and decided to send us to the hospital for a repeat ultrasound. His hope was that things weren't as questionable as they looked, and that maybe the baby was just sitting in a funny position or something and a repeat ultrasound would show better stats. He also wanted us to do a NST (non-stress test) afterward. The plan was we'd do repeat ultrasounds and NSTs every week until I was far enough along to induce, just like with Bennett. So we weren't too worried yet since we'd been down this road before and figured it was probably nothing. In fact I even told Michael as we headed to the hospital that he could go to work if he wanted since we hadn't anticipated the doctor's visit taking up so much time (we had taken 2 cars). He said that he would feel better sticking around because he wouldn't be able to concentrate at work until he knew for sure that everything was fine.
At Orem Community Hospital, the repeat ultrasound did look a little better - while the baby's head was still measuring 3 weeks ahead, the rest of the body was measuring more on schedule. Also my fluid levels, while still low, were closer to a normal range. So we headed into a patient room for the NST. Again I tried to convince Mike to go to work since the ultrasound had seemed fine but he insisted on sticking around. The nurse got all my monitors started and I laid back hoping they'd send us away after 20 minutes like they always did with Bennett. At that point I really didn't think anything would come of things and was mostly impatient because I also was planning to go to work afterward and I had a lot to get done.
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| I sent this picture to my mother-in-law and said something about how we were just sitting around bored waiting for the NST to run its course so that we could go. What's funny about this picture is that you can see the monitor read-out in the background, and if we had understood what it meant, we wouldn't have been quite so bored. |
She promised to come back in once she heard back from the doctor. At this point we were starting to get a little concerned, but were thinking the outcome would be something like I'd be coming back to the hospital to be rechecked every couple days instead of just weekly. After all, I was only 34 weeks along, so it was way too early to do anything more, right?? Then the nurse came back in and said that my doctor was on the phone with the Maternal Fetal Medicine specialists down at Utah Valley Regional Medical Center so they could decide what to do with me. I asked her if this kind of a thing meant I'd be coming back to the hospital for repeat tests every couple days. She said "to be honest, I don't know if they'll even send you home like this since they can't monitor the baby at home" I was super bummed because again, I didn't think they'd deliver the baby this early, so I was thinking she meant I'd be hospitalized for a few weeks until the baby was far enough along to deliver.
About a half hour later my doctor came in and said "okay, here's what's going on: you're having this baby today." He explained that between everything they were seeing, there were just too many things that they weren't comfortable with, and because they couldn't fit all of the weird things into one diagnosis, that made them even more nervous. And because I was so early in the pregnancy, I wasn't dilated at all so if they induced me it would take most of the day before my body could respond enough. He didn't want to put the baby through the stress of a long labor since the baby was already having a hard time. Because of all these reasons, he strongly advised an emergency C-section. I had always had such bad impressions of C-sections so I was getting really nervous, but I also felt like that was the right path for the baby. I asked the doctor if we should go home and pack a bag and come back, and he said NO, that he wanted me to gown up and get wheeled across the hall and get baby out within half an hour. That's when I started really freaking out. We had 10 minutes to hurry and make a flurry of calls to our families and to our workplaces and arrange for how Bennett and our dogs would be cared for through the next few days. By the time the nurse came in to start my IV and walk me across the hall I was shaking pretty badly from nerves. It seemed like events were happening faster and faster as the day progressed so I was having a hard time processing. They had mentioned that if the baby wasn't doing as well as they hoped, they would have to send it to the UVRMC NICU because they're better equipped, however the Orem NICU is 34+ weeks so we were hopeful that she could stay at Orem, that maybe she'd just need help breathing for a few days until her lungs developed more, and then we could take her home.
They took me across the hall to the C-section room and within 10 minutes were ready to go. I was being such a big baby about everything - I was terrified of feeling any pain since I wasn't in any kind of pain since I wasn't in labor. But the spinal was okay, and by the time Mike came in all gowned up I was pretty out of it. Not sure if that's because of the drugs or if I was just in shock and mentally checking out. From the time the doctor said "okay, here we go" to when they pulled the baby out took all of MAYBE 15 seconds. Emergency C-section work for sure! We hadn't found out the gender beforehand, and the nurse had to prompt the doctor to tell me if it was a boy or girl because him and the assisting doctor were so distracted attending to the baby. So I think he ended up saying something like "huh? oh you want me to say? it's a girl!" Suuuuuper anti-climactic after 7 months of not knowing. Maybe it would have been different if it was a normal, joyful birth, but If we ever have another child I'm just going to find out the gender. I had always explained my decision to not find out as "well, this baby has been a surprise since the very beginning, so we might as well be surprised from beginning to end" - I just wasn't anticipating having SO MANY surprises at the end, and not the good kind. Aria was born at 1:19pm. Her Apgar score was a 2. They didn't do the normal weight/length because they were busy trying to get her to breathe, but later in the day when they checked her in at Primary Children's she was measured at some point and came in at 4 lbs 15 oz, and 16.7 inches long.
I don't remember things very clearly in the couple hours following the C-section - it's all kind of a blur. I remember laying on the table while they finished up with me, and asking Michael if the baby was okay because she wasn't crying. He said he thought so but he couldn't see her. So I made him go see where she was in the room so that he could be near her. She was surrounded by people trying to clean her up and help her breathe so he couldn't get close. I don't know how long it was before they took her to the NICU - not more than a few minutes, I think, and as they started to run out they quick held her up for me to see, but since she wasn't breathing they were in a hurry and I only got to see her from across the room for like 2 seconds (which I'm fine with, I'm glad they were putting her needs first) I got stitched up, transferred to another bed, and wheeled into my recovery room. My doctor came in not long after to talk to us and to tell us that they needed to transfer the baby to Primary Children's (apparently Provo was full). He said that the baby wasn't doing very well with her breathing, and also that they had noticed some visible skeletal deformities that led him to believe she had some type of dysplasia and that Primary Children's was better equipped to look into that and figure out what was wrong. We were shocked to hear that because we had no indication there were any problems from the many ultrasounds that had been done. So now instead of just needing some help breathing for a few days, our new reality was that she would need help breathing until her lungs developed, plus she had a physical handicap that would impact her life. My parents live in Orem so we called my dad who rushed over, and he and Michael were allowed into the NICU briefly to give her a blessing,
My doctor and nurse stayed with me until Primary Children's arrived very shortly after (via Life Flight - which alerted us to the gravity of the situation, since at first we'd been told they'd just send an ambulance). Then Mike and I waited for over an hour while the Life Flight team got Aria all hooked up to their transport machine and ready for the helicopter ride. Finally, they wheeled her into my room for about 2 minutes so that I could quickly see her before she left. They opened the glass and I touched her, just kind of in shock, and then they left as quickly as they'd come. We had debated having my dad run and get Bennett, who was at their house, so that he could also see Aria when they brought her to my room, but I'm so glad we didn't. I was freaked out enough by seeing my baby in this huge contraption, I don't even know what Bennett would have thought.
After that Mike and I had about an hour to ourselves, so we got to work on picking out a name for the little miss. We had kept a running list of possible names but of course hadn't narrowed it down yet. We came down to 2 possible names, and were both leaning toward Aria, but we wanted to wait and see her again to make sure it felt right. Primary Children's called to briefly confirm that Life Flight had arrived and that they would call again in a bit with an update. Afterward Mike left to go home to pack us a hospital bag and see Bennett for a little bit, who was now back at our house with my sister. By this time it was about 7pm. My new nurse came in and brought all of the supplies so that I could try to pump some milk - she explained that I should start a pumping schedule right away and they would store it in the fridge, and each day Mike could take the milk up to Primary's for them to give to the baby. Even though I had no problems nursing Bennett when he was born, I had my doubts this time since I was only about 6 hours from surgery and wasn't sure if my body had figured out yet that it wasn't still 34 weeks pregnant. So I was shocked but pleased when I was able to pump about a teaspoon of colostrum. Then I settled into bed to try to nap a bit.
Shortly after, I received what I will forever remember as "The Call" from Michael. I was a little drowsy when I answered the phone, but quickly woke up as he explained that Primary Children's had just called him and had advised him to come up right away as they were very worried about the baby. They had needed to start life-saving measures on her as her body was shutting down. An initial scan had showed not only problems with her skeleton, but calcification in her brain as well which usually indicates some type of brain damage. In addition, she was still not breathing on her own, and the left ventricle of her heart wasn't working. There were multiple other problems as well but those were the biggest ones. All things considered, they did not expect her to live the night. Michael stopped by my hospital quickly to drop off a phone charger so he could call me when she passed away. We also felt strongly that we should have him give her one of the ordinances in our church where he officially gives her a name and a blessing, so that she would be officially named before she passed. I said to him "I think we should name her Aria" and he said "I agree" and that was it. Then he was off to Primary Children's and I started my restless vigil through the night waiting for the worst call of my life. In a 9 hour period we had gone from thinking we were in a healthy pregnancy, to thinking we had a child with a deformity, to expecting our child to die the same day as her birth.
I honestly don't think I could have made it through the night, and the rest of that long week, without my nurses at Orem Community Hospital. They were amazing. There were several that cried right alongside me and they always made sure to check on me much more than they were required to.
The call that night never came. Instead, Michael came walking into my room at 6:30 the next morning. He reported that, miraculously, the doctors had been able to stabilize Aria to a degree. She was still 100% reliant on machines and medications to do her breathing and pump her heart for her, but for the moment she was still with us. Her specialists had sent Michael to go be with me and promised to call the second she started to go downhill again.
The last 10 days since her birth have been a whirlwind of ups and downs, and I will describe some of those in a separate post. For now I'll just leave you with one of the first pictures Mike took of our gorgeous girl.
Monday, July 7, 2014
Update on Aria
We've received the results back on some important tests that would help determine quality of life information for Aria. While there is just SO MUCH involved in her medical case, I will try to summarize it as simply as possible:
When Aria was first delivered and life-flighted to Primary Children's, nearly all of the systems of her body were shutting down which is why she was not expected to live the night. Since then, the doctors have slowly been healing different parts of her vitals. She has been kept sedated so far so that she does not resist all of her tubes and wires. The goal was to get her body stable enough to be able to run the tests that they needed to in order to figure out why this was happening to her. As of a couple days ago they felt like even though she was still on life support she was now stable enough to start running these tests. The results have been mostly discouraging.
They still have no idea what caused all of Aria's problems. Everything they have tested for so far has come back negative. There's so much wrong with her little body and its systems that it is likely a combination of things, and it's probably some incredibly rare chromosone defect of some kind. They're about at the end of the line as far as what else they can test for.
There is no good treatment option for Aria as there are just so many things wrong with her body. Because of all her skeletal and muscle problems we know she will never walk, and will probably be on a feeding tube for the rest of her short life. The MRIs and some other tests have also shown a significant problem with her neurological system, including her brain. There's a myriad of other problems as well but these are the biggest ones.
While things could still change at any time, right now we are looking at one possible scenario being that she spends a few more weeks at Primary Children's until they feel like she is stable enough to come home. We would bring her and her life support system home and we would care for her as best we could but we would anticipate a short life expectancy, which could be days or weeks or possibly longer. Without a diagnosis for her condition we have no idea what to expect which makes things very difficult.
Because we basically will be unable to take her out of the house if she comes home, we will need a lot of help. In the meantime, Michael will need to return to work within the next couple days. Natasha will likely reduce her work hours down to just a couple per week, as she is not able to drive yet in this point of her own physical recovery after the emergency c-section. They also feel strongly that she needs to stay with Bennett as much as possible as his world has also been suddenly turned upside down and he has been having a very difficult time trying to understand what's happening. Because we are basically homebound for the time being, at this stage we would really appreciate some scheduled visits at our home, especially from others who have a toddler that could come over for short playdates in order to give Natasha a short break from the constant attention and interaction that Bennett is requiring right now.
One thing we would appreciate is if people will seek information about what's happening and how they can help via our family or this blog. It is very difficult for us to talk about in person right now. We will try to keep this blog updated as possible, but are very limited in our free time right now so please be patient if updates are slow in coming. If you need to contact us you can do so via text or private Facebook message.
We appreciate all your love and support.
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