In case anyone is out of the loop, Avonlea had a frightening, traumatizing grand mal seizure on December 31, 2015. You can read the more emotional details of that experience here, but to sum up: Avonlea began seizing (convulsing, eyes rolled back, gasping for breath) around 7:30pm on New Years’ Eve while we were at the home of Brian’s brother, Kevin. The seizure lasted less than 30 seconds, but she did not breathe for about 2 minutes afterward. She slipped out of consciousness seconds after the seizure, was unresponsive and was not breathing. Brian and his sister Kailagh performed CPR on Avonlea or about 2 minutes, until she began very shallow breaths. A neighbor of Kevin and Beth’s who is a nurse was retrieved and she skillfully continued proper emergency procedure until an ambulance arrived. We took her by ambulance to the pediatric ER at Presbyterian hospital in Charlotte, NC, where we proceeded to be astounded by sub-par care and a profound lack of sensitivity. The ER sent us home with instructions to follow up with a neurologist the following Monday, and a prescription for emergency seizure medication to administer in the event of a seizure lasting longer then 5 minutes.
After this extremely disturbing and traumatizing experience, we began the lengthy process of getting a referral in place to see a neurologist.
During the first few weeks of January, we happened to notice that Avonlea had begun coughing once or twice during bottle-feedings. We honestly did not think much of it, but I brought it up to Avonlea’s speech therapist anyways and, after observing Avonlea drink from her bottle, the therapist recommended that we ask our pediatrician for a referral to have a swallow-study done at Levine Children’s Hospital to make sure there were no issues of aspiration. I left a message that week for the pediatrician’s referral-coordinator, requesting a referral for a swallow-study.
Because of Avonlea’s insurance, it has never been uncommon for referrals to specialists to take a long time to manifest in an appointment :( Avonlea is on South Carolina Medicaid. We live in Rock Hill, SC, and unfortunately there are not very many reputable specialists actually IN Rock Hill; the closest good doctors are mainly all in Charlotte, NC (30 minutes north of us). A lot of NC providers don’t take SC Medicaid, so it usually takes the pediatrician’s office awhile to find quality providers nearby who takes her insurance. We had fully expected the referral process for neurology to be lengthy, especially because we had been less than impressed with the organization and professionalism of the neurologist in Charlotte we had gone to in the past (Mecklenburg Neurological Associates). We recognized that we were asking a lot of the pediatrician to find us someone completely new! We were prepared to commute all the way to Columbia (1 hour south of us) if necessary to have Avonlea seen by someone experienced and reputable, and the pediatrician had assured us that Columbia would most likely be where we’d end up.
Before either referral (neurology or swallow-study) could go through, Avonlea had another emergency.
On Friday night, February 12th around 11pm, Avonlea very suddenly went into respiratory distress. We heard her on the baby monitor, gasping for air, and she was unresponsive when we picked her up out of her crib. Powerlessly, I rocked her back and forth swiftly, bounced up and down from my knees, called her name, trying to capture her consciousness back to me.
Baby, please wake up… Why won’t you wake up?!
She never stopped breathing this time, thank God! After a minute or two of attempting to wake her, she finally opened her eyes, but would not make eye-contact with us. She had a mild seizure (the doctors believe it was a tonic seizure) lasting 3-4 minutes. 911 was called, and a Piedmont ambulance arrived within minutes. We opted to take her to Levine Children’s Hospital this time, since our experience at Presbyterian Pediatric E.R. on Dec. 31st had been wildly sub-par.
After several exams and a chest x-ray, Avonlea was admitted her to the hospital around 4am Saturday morning, February 13th. Upon admission, the resident on-call informed us that she wanted Avonlea to have an E.E.G. (a test used to detect abnormalities related to electrical activity of the brain), an M.R.I. (a scan that captures detailed pictures of the brain) and a swallow-study (basically, a video x-ray that observes whether food/ liquid is being swallowed correctly, or if it is entering the lungs during a swallow), since both seizures presented along with different breathing issues. We would have to wait until Monday (the 15th) to do the swallow-study, however, since the speech therapists required to observe the study did not work on the weekends.
The E.E.G. was done on Saturday, which of course showed abnormal activity in Avonlea’s brain. She had already had one of these done back in May, so we knew what to expect. These results were reviewed with us by Dr. Dayal, a neurologist who’d been highly-recommended to us when we were initially looking for a neurology practice back in the spring, but her office didn’t take Avonlea’s insurance at the time. She just so happened to be the on-call neurologist at Levine the weekend of Feb. 13th and 14th, and we were thrilled for the opportunity to have Avonlea evaluated by her. Because of the abnormal activity shown on the E.E.G. and considering the two seizures that had occurred in the last 6 weeks, Dr. Dayal recommended beginning Avonlea on a regular seizure medication called Keppra. She was put on a “loading dose” of Keppra Saturday afternoon (Feb. 13th), to even out her brain activity in preparation for her M.R.I. the following day. Since that initial loading-dose, Avonlea has remained on a regular, more manageable dosage with no noticeable side-effects thus far!
The M.R.I. was performed on Sunday morning (Feb. 14th). After reviewing the results, Dr. Dayal along with a radiologist, informed us that, as expected, the M.R.I. concluded that the abnormal brain activity shown on the E.E.G. was in-fact seizure activity. Dr. Dayal advised we keep her on the Keppra to regulate the seizures until we could get in to see her Dr. Nahouraii at Mecklenburg Neurological Associates (Avonlea’s first neurologist, whose office we were not pleased with). I told Dr. Dayal that, honestly, we feel Dr. Nahouraii was a fine doctor, but his office-staff had put us through so much when Avonlea was a patient there earlier in the year, and that we’d really prefer to see her or another neurologist if we could. She strongly urged us to remain with Dr. Nahouraii, due to his experience with cases like Avonlea’s and his specific focus in neurology. We begrudgingly agreed, and now currently have a follow-up appointment scheduled with him for March 22nd. We intend to inform him at that time that, while we know that he’s a great doctor, we are skeptical about remaining with his practice because of his, for lack nicer words, painfully incompetent staff, and cite the many unpleasant experiences we had when dealing with them back in May and June, in hopes that efforts will be made not to let those things happen in the future.
The radiologist made a point to mention to us that she picked up on something on Avonlea’s M.R.I. that she had not seen noted on her original M.R.I. results from this past June. She told us that the shape of Avonlea’s skull is abnormal (which we’d kind of already assumed was the case, because… let’s face it… the girl’s skull looks abnormally-shaped). She went on to say that the particular shape of her skull is often accompanied by a condition called craniosynostosis, where the sutures of the skull fuse and turn into bone too early during infancy. This allows for the brain and the skull to then continue growing at different rates, which can put pressure on the brain.
IF Avonlea does indeed have craniosynostosis, this could explain why she had a grand mal seizure after her myoclonic seizure activity had nearly gone away… why seizure activity presented itself with such great intensity, seemingly out of nowhere (after we thought we were on the path to resolving it altogether).
The only option to correct craniosynostosis would be surgery on Avonlea’s skull. The radiologist did let us know that, upon noticing the abnormal shape of Avonlea’s skull while reading her M.R.I. results, she had immediately called the office of a Charlotten, NC neurosurgeon and spoken with the surgeon’s P.A. The P.A. felt, after hearing the radiologist's findings, that Avonlea’s case (or rather, potential case) was not urgent enough for the surgeon to come examine her in the hospital, and that we could be seen by their office as an outpatient after being discharged.
We had an appointment with the neurosurgeon’s P.A. on March 14th. After visually examining Avonlea (and thoroughly falling in love with her), she said that Avonlea’s case looks to be borderline as to whether or not bone-surgery on her skull is required. She ordered a C.T. scan to get a better idea of what the bone-formation looks like, and referred us to be seen by a plastic surgeon who would perform Avonlea’s surgery along-side the neurosurgeon if it’s decided that she needs it. We’re still waiting on the C.T. scan and the consult with the plastic surgeon to be scheduled at this time.
As much sense as craniosynostosis makes to explain the strange pattern of Avonlea’s seizure activity thus far, the idea of having her skull operated on is absolutely terrifying! We’re not sure whether or not to hope that this even IS the answer to her problems. Even though skull-surgery is a scary possibility, if she does have craniosynostosis, that means that there IS a solution on the table, and that we have doctors that are willing to perform the surgery. If she does not have craniosynostosis, that wouldn’t necessarily rule out the possibility of surgery being necessary to correct whatever is causing the seizure activity… it just means that skull-surgery is not necessarily the only option.
The resident physician on our floor at Levine told us on Sunday afternoon (Feb. 14th) that we actually COULD be discharged that night if we wanted, and then simply wait on the pediatrician’s referral to go through for us to come back to Levine for the swallow-study another time. Avonlea’s medical team was in a agreement that the more urgent issues (neurological) had been sufficiently pinpointed and were being sufficiently treated, and that the swallow-study was not imperative to have done quickly, now that Avonlea was on a good seizure medication that seemed to be working well for her. But, of course, the resident physician also reminded us that we still had the option to move forward with the original plan to just stay admitted for one more night, and have the swallow-study done in the morning. Knowing that referrals tend to take so long through her pediatrician’s office because of Avonlea’s insurance, we of course opted to simply stay Sunday night and just get the swallow-study out of the way Monday morning
On Monday morning (Feb. 15th) the new resident physician on our floor informed us that morning that our swallow-study was on the schedule for 11:00am, and that Avonlea could not eat for about an hour and a half before the study. We spent the morning packing up from our little “weekend vacation” at Levine, but were disappointed when, at 11:00am, the knock on our door was only the doctors and nurses doing rounds. We were informed then that our swallow-study appointment had been bumped to 1:30pm, so we gave Avonlea a half of a jar of baby-food at 11:30am. to tide her over till after the swallow-study (a normal meal for her is one 4 oz. jar of fruit or veggie puree + 6-8 oz. of whole milk).
At 1:30pm on Monday, our hospital room was all packed up and we were ready to be discharged as soon as the swallow-study was over! We waited patiently, until someone came to walk us down from our 10th floor room to the 5th floor for the study (which began about 20 minutes late). Avonlea was sat in a Bumbo-like seat in front of a special x-ray machine, as Brian fed her a series of liquids, all different consistencies, through our normal L3 Dr. Brown’s bottle we’d brought from home, as well as through a slower-flow bottle Levine had given us. I watched the x-ray video from behind a safety-wall of her swallowing everything, completely unsure of what I was supposed to be looking for. Before we could even get to test any of her pureed baby food, the Levine speech therapist overseeing the study announced that we were out of time, and that we needed to go back up to our hospital room and wait for someone from G.I. to come speak with us and put together a plan. Brian was holding an extremely fussy, flailing, hungry Avonlea, so he took her out into the hall and I stayed to ask for a little more information. We were so confused about what the study had revealed, and what the results meant for our plans to be discharged.
The speech therapist informed me that the study showed that Avonlea was aspirating every consistency of liquid they gave her. This means that some of everything she swallowed was going straight into her lungs! She asked how sick Avonlea had been, if she’d struggled with cases of pneumonia or bronchitis… When I told her that Avonlea had never had either, she looked at me in disbelief and said “That’s amazing.”
The speech therapist said that at this time, it was unsafe to feed Avonlea by mouth., and that she would need to have an N.G. tube put into her stomach through her nose for the time being to receive feeds. This would be an extremely temporary solution to nourish her until we could achieve something more temporary, probably involving some type of surgery to put a tube in her stomach. I joined Brian in the hallway in shock.
How long has this been happening? How long has she been aspirating?
It can’t have always been happening! She’s never had any illnesses to indicate that food or liquid was going into her lungs, causing infections.
But I don’t WANT her to be tube-fed! We’ve worked SO HARD to get her to this point, where she can eat baby food…
A year of therapy… possibly down the drain? No.
Nope… this doesn’t make any sense.
When we got back to our hospital room, I melted and just burst into tears. A whole new chapter of uncertainty was unfolding: Avonlea needed surgery to receive nourishment… No one was telling us if this was going to be permanent? Semi-permanent? Would it last for a week? Or would she never eat by mouth again?
All the while, poor Avonlea was screaming from hunger. The swallow-study had been a cruel tease, little bits of liquid that added up to less than a snack.
We waited for about an hour with that poor baby screaming at us from her hospital bed. The resident physician finally came in with a pitying look on her face. I figured she was there to let us know when a doctor from G.I. could come talk with us about our options, and to deliver a plan for having the N.G. tube put in in the meantime.
“Hey guys… so, I talked to the speech therapist about the swallow-study. It looks like she aspirated just about everything she was given. It’s not safe to feed her by mouth at this point, so we won’t be able to discharge you until you speak with G.I. and come up with a plan.”
With Avonlea wailing in the background, Brian and I both swallowed our desire to yell “NO DUH” at the doctor who was simply regurgitating everything the speech therapist had already told us, and simply asked “So… how can we feed her right now?”
She reiterated the suggestion for an N.G. tube and we agreed emphatically. We reminded her that Avonlea hadn’t eaten a full meal since about 10am (it was now about 2:45pm). She said she would go get the ball rolling right away on having the N.G. put in…
Our nurse came in about a half-hour to ask what happened with the swallow-study that we were not being discharged as planned, and what the plan was. We repeated what the speech therapist and resident physician had said, and the nurse told us she would go track down the resident physician and see what the hold-up was on the N.G. tube. Poor Avie was whimpering weakly from hunger and it was positively heart-breaking.
Another half-hour or so after that (about 3:45pm), the resident physician came back into our hospital room. My heart lightened as I felt the “light-at-the-end-of-the-tunnel” hope for an end to Avonlea’s suffering. Instead, I was forced into tears as the doctor said:
“So, I just spoke with G.I., and they said they’ll probably be in to discuss options with you sometime today or tomorrow…”
Okay, that’s discouragingly vague and does nothing to solve the more immediate issue of: MY BABY IS STARVING!
Brian was much better at being polite in that moment than I was. He nodded as I ignored the annoyingly irrelevant information altogether and he simply asked WHEN the N.G. tube could be put in!
Her reply was a droning, vague, “I’ll have to go see” type of non-answer. I started to cry and, I forget my exact words but, for all intents and purposes, I basically said to this lady:
“Listen. We just got some really bad news that we were not expecting. We want to go home, but can’t. Avonlea hasn’t had a meal in about 6 hours, and she is miserable. I am freaking out, and I’m miserable for my daughter who I’m not allowed to feed. Also, I’m 35 weeks pregnant so I’m about to stress myself into labor! We NEED her N.G. tube put in ASAP! It’s not fair that it’s taking so long while she goes hungry. And we will not be able to think clearly about the best course of action for possible surgeries if she’s screaming from hunger.”
The resident physician emptily promised that she’d go work on getting the orders for the N.G. tube squared away immediately.
“Let’s just get it done.” I was snapping. Brian was embarrassed of me.
Around 4:15pm, our nurse came back into our very loud hospital room (Avonlea was still crying very real tears and nothing could console her).
Phone in hand, she let us know that she’d been trying for a long time to get through to the doctor in charge of ordering the N.G. tube to be put in (ahem… the ever-on-top-of-things resident physician), but could not get ahold of her. I begged her to do whatever she needed to do to get someone to come put the tube in. I was in tears, and I was beginning to feel some strong contractions (which I was pretty sure were purely being brought on by stress).
Our nurse looked at me sympathetically and said “I’m trying! I am actually the one who’s going to put it in. I’m ready to go as soon as the orders come through! I just need someone to give me the orders.”
This infuriated me. Everyone was literally just waiting on ONE person to say “put the N.G. tube in.” The nurse said she would give the doctor another couple of minutes to call back before she tried her again, but I was done. I couldn’t take it.
Fed up and heartbroken over my sweet Avonlea’s distress (unnecessary distress, mind you), I took matters into my own hands. In case any readers missed my little social-media Norma Ray moment, I took a video on my phone of Avonlea thrashing from side to side in her hospital bed, wearing her sad little hospital gown, whimpering from hunger. I posted it to Instagram and Facebook, and tagged Levine Children’s Hospital in the post.
The lengthy caption outlined the basics:
My baby had been made not to eat since this morning. Swallow-study results would not allow me to feed her myself, and N.G. tube orders had been in the wind for hours. I disclosed what floor we were on and begged for someone to break down the doors for Avonlea to be fed. I did not call any one person out directly, and I’m sure my tone was very clear: I was livid.
About 10 minutes after that post when up (and nearly 100 comments later, between the two social media platforms), our nurse and nurse’s assistant came in with the N.G. tube and quickly began the painful process of putting it in through Avonlea’s nose and guiding it down into her stomach. The nurse’s manager came in as well, surprisingly, and apologized for the wait and said “I understand that you’re upset, can you tell me a little bit more about what happened?”
A few moments later, I had spoken my piece about how ridiculous and unnecessary the lengthy wait was for the N.G. tube, poor Brian was sufficiently embarrassed that his wife had caused a scene, and Avonlea’s N.G. tube was in and food was flowing into her belly.
A doctor from G.I., Dr. Caicedo, came in to consult with us Tuesday, Feb. 16th, and recommended a G-tube be put in through her stomach later in the week. After consulting with neurology and other doctors, he believed that the seizure on New Years’ Eve affected nerves in her throat, and that is why she was experiencing rather acute aspiration issues after having done so well with oral feeding in the past. Based on the fact that Avonlea was able to feed orally before the nerve-damage occurred, Dr. Caicedo let us know that he believes that the G-tube will only need to serve as a temporary solution to feeding her while allowing the nerves in her throat to heal, and hopefully Avonlea can resume oral feeds down the road without aspiration! When asked how long he expected those nerves to take to heal, Dr. Caicedo could only guess: usually months, rather than years. but given her Trisomy, it’s possible that they will never heal :(
I called Avonlea’s regular speech therapist that night and briefed her on this new development. She agreed with Dr. Caicedo’s plan to move forward, which made us feel a little more comfortable with the idea. The next day, Wednesday the 17th, Avonlea had an upper-G.I. exam to make sure her digestive tract was structurally compatible with a G-tube. Everything on that upper-G.I. looked normal, and so Dr. Caicedo performed the procedure to put the G-tube in Avonlea’s stomach on Thursday, Feb. 18th.
The next few days of recovery at Levine were long, and extremely painful for Avonlea. She could not tolerate any positions that allowed pulling or pressure on her torso. We couldn’t pick her up by her under-arms like we normally could… we had to scoop her up in a cradled position to pick her up. Being in an exersaucer was too painful for her, since her abdomen was too sore for her to lean against the inside of the seat. This restriction created a severe boredom issue for the next several weeks as she healed, even after we were able to come home. Her exersaucer had always given her a sense of independence, as she could play without assistance, spin herself around etc… Levine had even brought one in for her to play in while she was admitted, but after the G-tube was put in, we had them take it out of her room again as she was unable to take advantage of it and her attempts to sit in it only created more pain.
The morning of February 20th (a Saturday, the day we were supposed to be discharged from Levine), I woke up at 4am in Avonlea’s hospital room, needing to use the restroom (as I was accustomed to doing at nearly 36 weeks pregnant). When I went to the restroom, however, I noticed something alarming: a small amount of bright-red blood. In all of the books, in all of the classes, in all of the pregnancy-app updates and at all of the doctors’ appointments, you’re ALWAYS taught: brown or pink may not be immediately concerning, but red is BAD.
I woke Brian up and called my O.B. practice… the night-nurse answered and I told her what was happening. She asked me if I could feel the baby move.
I could not.
She told me she would stay on the line for a few minutes and wait to see if I would feel any movement. In the meantime, she had me drink some juice and eat some candy (by the grace of God, being at Levine, we were just around the corner from the snack-room and had access to all kinds of food/ drink). After 15 minutes, however, I still had not felt the baby move.
Around 4:30am, Brian texted his sister, Kailagh, to see if she could come and stay with Avonlea in her hospital-room while we went over to Presbyterian Hospital (where we would be delivering) to see the O.B. on-call from our practice.
I was an exhausted, terrified statue for the entirety of the short, couple-block drive from Levine to Presby. It was impossible not to assume the worst.
I avoided making eye-contact with the receptionists and nurses on the way to the check-in desk, and wondered why I couldn’t, just once, make that walk from the hospital parking-deck to check-in with joyful anticipation.
As soon as I got checked in and settled into a triage room, the nurse put a monitor on my belly.
Immediately: a heartbeat!
And nearly two seconds after we heard that reassuring wave of life,
the baby began kicking me.
Brian and I looked at each other and all we could do at that point was laugh.
We were SO TIRED.
He said, “Between the three of you girls, I’m going to be gray in one year, and probably bald in two…”
My O.B., Dr. Heron-Davis (the same doctor who had delivered Avonlea), came into the triage room and examined me. She said that the blood I was seeing was minimal enough that it was probably only indicative of labor being near! At less than 36 weeks, with Avonlea still admitted at Levine at that time, a new feeding tube having just been put in her stomach and the new baby’s room nowhere near ready (not even started, in fact), the idea of this baby coming early was pretty overwhelming.
After we had arrived back at Levine, reassured that the baby was safe and healthy, we relieved Kailagh and her husband, Darko, who had graciously come to stay in Avonlea’s hospital room with her while Brian and I had been on our “field-trip” to Presby.
Later that same day, in the afternoon, Avonlea’s pediatrician, Dr. Patel, came to visit her in the hospital! At first, when I saw him walk in, I thought maybe he was there because he was required to come see her, but then I realized it was a Saturday. He was there on his own time just to check in on her and follow-up with everything that had gone on with her that week.
Side note: Brian and I can’t begin to accurately describe how thankful we are for Dr. Patel and Sunshine Pediatrics! I remember the genetic specialist, Dr. Spence, in the NICU telling me the day after Avonlea was born that we needed to find a pediatrician who would look beyond the diagnosis on a piece of paper, who would and see Avonlea’s life as valuable and give her the same, fair treatment any healthy child would receive. That is exactly the kind of doctor that Dr. Patel has proven to be; we could probably devote a whole blog-post to all of the times he’s gone above and beyond for us, to make sure Avonlea received the best care possible. We couldn’t be happier that Sunshine Peds is where we ended up!
That afternoon (Sat., the 20th), Avonlea was finally discharged from Levine! We brought her home to an extremely messy house, feeding-pump and shaky knowledge of how to use it in-tow. We sent out texts to friends, begging for help with painting the baby’s room the following day, in an attempt to get that and some bother major projects done in the room before the baby came! We hadn’t been given any indication of how much time we had, only a vague “you’re close,” and considering how much stress I’d been under that past week at Levine, we believed it.
The next few days after discharge from Levine were quite a whirlwind…
(oh, who are we kidding… the next TWO WEEKS were a whirlwind)
On Sunday, Feb. 21st (the day after Avonlea’s discharge), we went to the hardware store and grocery store early in the morning to get supplies to paint the baby’s room. Six amazing friends came over that afternoon to help paint! Brian headed up the painting while I stayed downstairs with Avonlea and forced myself to really learn how to use her G-tube/ feeding pump. The room was finished being painted in only an hour!
Side note: pump-feeding is extremely nerve-wracking to learn how to do, and even now, a month later, it’s still so disheartening to watch Avonlea during the feeds, as she slowly forgets that her tummy is empty, all the while unable to understand why we’re not “feeding” her like normal. I haven’t stopped hating this awful G-tube since the moment we got home, and will remain counting down the days until we can discuss having it removed!
After Avonlea went to bed on Sunday night, Brian assembled the new baby’s crib (yes, we have 2 cribs now…) and we moved all of the furniture into the room that had been precariously packed into the guest-bedroom. Monday night, the 22nd, I re-painted the dresser that would serve as the new baby’s changing-table and Tuesday, the 23rd, Kailagh came over to help Brian put up the adorable Anthropologie wallpaper on one wall that had been a combined baby-shower gift from all the wonderful women in my life who had hosted my shower.
That evening, as the completed wallpaper project was being cleaned up, I swept up the last of the scraps into a pile and felt…
…my water break.
!!! 4 WEEKS EARLY !!!