Sunday, April 19, 2015

The Whole Sordid Story

I was looking through old documents on our computer and stumbled across this. Several years ago I wrote it for a therapist who was outside of our regular team so did not have access to the boys' medical records but wanted the details of what they had been through.

Re-reading this now, I am so glad I have it. I have bits and pieces of this information in several places but love that it's all here and reasonably concise - although admittedly long because of everything they've been through.

I've updated the original, but only slightly to keep it current. If you've been with us since the beginning you'll already know most of this, but some of you are newer to the blog than others or might just want a refresher course in Trousdell5 101. In either case, here you have it...

Asher and Nolan - The Whole Sordid Story.

Asher and Nolan were born on November 1, 2009 at 26 weeks, 3 days gestation. At 24 weeks, after a normal and healthy identical twin pregnancy with no signs of twin to twin transfusion syndrome, it was discovered that my cervix was dangerously thin. Surgery for a cervical cerclage (stitch) was scheduled. It was believed the stitch would be successful and a normal pregnancy without any bed rest could be carried on until close to term. At 24 weeks, 3 days the surgery was performed and it was found that my condition had worsened greatly. My cervix was completely thinned and dilated; without intervention I would have delivered later that day.

After the cerclage I recovered in hospital on antibiotics for 3 days in an effort to prevent infection. When I did not go into labour because of the complications, I was sent home to bedrest for the remainder of the pregnancy. Although the situation was more dire than originally thought, it was still believed that complete bedrest (flat on my back 24 hours a day, other than to get up to use the bathroom) would allow the pregnancy to continue for several more weeks.


In the early morning hours of November 1, I began having contractions so I was admitted to labour and delivery. Despite the contractions, it was confirmed that my cervix was thick and closed, and the boys were in no distress. I was admitted to hospital and was to be kept there until birth, although everyone was very optimistic that I would be able to carry on with the pregnancy. 

At 6:05 pm that night, after not having contractions for several hours, I got up to go to the bathroom and Baby A’s amniotic sac was bulging. I was rushed for an emergency cesarean section and Asher and Nolan were born at 6:27 and 6:28 pm respectively. Jordan was not allowed in the room and I was under general anesthetic as there was no time to give me an epidural and keep me awake. Asher weighed 936 grams (2 lbs 1 oz), and Nolan 874 grams (1 lb 15 oz). Both boys were immediately ventilated and brought to the NICU. I did not meet them for several hours until I was wheeled into the unit on a stretcher. I did not touch them until the following day, and did not hold them for several weeks.

Results from the testing of my placenta later showed that it had been very infected, and that was what caused labour to begin. The infection had passed through the cord to Asher, but not yet to Nolan. Doctors felt that given how bad the infection was, if Asher had not been born when he was he could not have not survived more than a few more hours in utero. The infection has not been attributed to a specific cause but it’s been speculated it could have been from the cerclage, which my body may have seen as a foreign body. It may also have been because my cervix was dilated for so long before the surgery. We have no way of knowing what actually happened.

Both boys spent 152 days in the neonatal intensive care unit, needing breathing support for most of their stay. This was a much longer hospital stay than expected. A typical hospitalization for a premature baby results in discharge near their due date, give or take 4 weeks. Asher and Nolan were 14 weeks early, but spent 22 weeks in the NICU.

Aside from all of the respiratory support and medical intervention required, a baby born as early as the boys is not able to suck, swallow, or even digest breast milk. Feeds started with TPN (total parenteral nutrition) via a central catheter. Slowly, in very small increments the boys began tolerating breast milk by feeding tube. While their feeds of milk increased, their TPN was eventually weaned. The boys were tube fed for a majority of their hospitalization, and only had the stamina and skills required for full bottle and breast feeds shortly before discharge. 

When discharged, both boys had regular visits with a pediatrician, family doctor, and opthalmologist. Although they are still followed by all of the above, the visits are now infrequent. Asher and Nolan have both proven to be in excellent physical health, and no remaining lung issues are present. In terms of their eyes, there was no retinopathy of prematurity found, but both boys are myopic. Neither have needed glasses to date, but it is expected both will at some point. Hearing screening has shown both boys to have some hearing loss in very low tones, but it is nothing that we have ever noticed from a functional standpoint. From our perspective their hearing is very good.  

Asher

At birth Asher was extremely ill due to the infection. He suffered from low blood pressure and metabolic acidosis. He was mechanically ventilated and remained on the ventilator for 5 days before switching to CPAP for several months. Due to various setbacks, Asher was reintubated two more times and spent a total of 18 days on the ventilator.


Because of how sick he was, there was concern about a brain hemorrhage. Asher had a head ultrasound on his first day of life and it was found to be normal. On day 4 Asher’s ultrasound was repeated and he was found to have a Grade 4 (the most severe) intraventricular hemorrhage on the left, and a Grade 2 on the right. There was no evidence of periventricular leukomalacia (cysts or tissue death where normal brain tissue would normally be) or hydrocephalus.

When reviewing the findings of Asher’s hemorrhages with the neonatologist, we were told that Asher would likely have good quality of life, but that a disability would likely be present. At that point there was no way to speculate the severity of any disability. They assured us that Asher would live through the injury, but the very worrisome concern of hydrocephalus and subsequent need for brain surgery to install a VP shunt were present.

Asher had follow up head ultrasounds throughout his stay and was carefully monitored for any signs of swelling. Each review showed that the blood was slowly absorbing, and the worry about hydrocephalus slowly lessened. At his final ultrasound, the blood was completely absorbed and there was no evidence of any PVL around the ventricles.

Asher continued his hospitalization with many of the complications expected for a micro-preemie. He had a PDA (open valve) in his heart, but that was closed without surgery and only medication. He had seemingly endless infections and accompanying courses of antibiotics, and required phototherapy to decrease his levels of bilirubin. He also had edema in various parts of his body, issues gaining weight, and the need for four blood transfusions.

One evening Asher had some profound episodes of apnea, more so than usual, causing the neonatologist to query seizures. An EEG was performed and found to be normal. Asher has never shown any seizure-like behaviour since. He also had a lumbar puncture to rule out sepsis, and that too came back negative. The cause of that event was unknown.


Asher's biggest challenge was with breathing on his own. He suffered apnea of prematurity long past his due date. He had many episodes of ABDs (apnea, bradycardia, desaturations in blood oxygen). Caffeine was given as a stimulant for his respiratory drive from the beginning. When other preemies are generally weaned from caffeine long before their due date, Asher required caffeine until very close to being discharged. Once his respiratory drive kicked in Asher was able to breathe on his own very quickly and was discharged home soon after. He had no oxygen requirements at home.

The last major complication Asher suffered was gastro-esophageal reflux. He was tried on several different medications, and eventually found a combination of Ranitidine and Prevacid worked. Asher always needed to remain upright after a feed, even sleeping on a 45 degree wedge. The medication and the wedge continued at home. Ranitidine was discontinued early on, followed by the wedge, but he remained on Prevacid until he was 10 months corrected. Since then, reflux has not been an issue. Asher has no other digestive issues. 

Immediately after coming home, Asher began to see an infant development consultant through Queen Alexandra centre for children's health. A few months after that PT became involved; eventually OT followed, and then speech. It became evident quite early on that Asher would have motor delays. When Asher was 13 months corrected, he saw a physiatrist through QA and at that point he was diagnosed with Cerebral Palsy.

Asher’s presentation of CP stumped his doctors and therapists. It was always believed Asher would have more troubles on his left side, given the severity of his bleed on the right; however, in reality it is the right that is affected more. After observing his motor patterns, and discussing with us how he moves and what he has troubles with, both the physiatrist and his neurologist feel that Asher has been affected by damage to his basal ganglia that would not have appeared on head ultrasound. Based on all of this, he has been diagnosed with the less typical form of Athetoid CP.

Unrelated to his CP, and after discharge from hospital, Asher has had three surgeries under general anaesthetic. After the first surgery Asher was given morphine for pain and his oxygen saturations dropped. He spent the day in pediatrics recovering and there were no after effects; the doctor believed Asher had trouble metabolizing the morphine. After Asher’s second surgery, no morphine was given and there were no complications whatsoever. Asher came out of recovery very quickly and was sent home within the expected time frame. After the third surgery there were again complications recovering, delaying his discharge time. Recovery then proceeded as normal.


As per Asher’s neurologist, an MRI was scheduled at age two to give a better picture of his CP. At that age, an MRI is performed under conscious sedation – enough sedation to keep him completely still, but not enough to require his airway to be maintained. I was with Asher when they gave him the sedative through IV in the MRI room, and then I left when he was “asleep”. Very shortly after, I was alerted that as soon as I left Asher stopped breathing completely, and required bagging resuscitation for several minutes. The MRI was cancelled and Asher spent the day recovering in the pediatric ICU, where his blood oxygen saturations slowly came up over the course of the day, and his oxygen requirements were slowly weaned.

Because of Asher’s experience with the MRI, along with his trouble post-surgery, it is believed that Asher metabolizes drugs very slowly, and therefore conscious sedation is too risky. Although an MRI can be performed under general anaesthetic, none of the doctors (or us) felt it was worth the risk. Now Asher will not have an MRI until he is at least 8 years old – the minimum age our neurologist is willing to try without sedation. Because of Asher’s issues, Nolan, being his identical twin and therefore at risk for the same issue, will also have his MRI postponed.

At the two year mark, Asher’s speech was considered delayed, but by three his speech was within an expected range. Speech therapy was eventually discontinued. In terms of cognitive development, Asher is considered to be cognitively typical, progressing through school with few modifications. Psychological and IQ testing show Asher within normal ranges, leading to the possibility that Asher's intelligence is above average because he scored so well despite his physical disability preventing him from completing many of the tasks. Asher still sees OT and PT in a consultative role through school as well as orthopedic surgeons and neurologists in Victoria and at Shriner's hospital in Portland, Oregon. Asher's hips are also x-rayed every six months to watch for signs of hip dysplasia - a common concern in children who have not been able to weight bear/walk to aid in the normal process of bone and muscle development.

Recently, Asher has begun drug therapy (trialling both Levodopa/Carbidopa and Baclofen) as well as botox injections. Asher has a manual chair along with a power chair, and a gait trainer - both of which he can use to self-ambulate.


Nolan

Although Nolan was also in critical condition due to his extreme prematurity, he was stabilized on the ventilator and did not have the infection/metabolic acidosis/hypotension that Asher had. Nolan remained on the ventilator for a total of 41 days - significantly longer, but with slightly less drama than Asher. He then progressed to CPAP and high flow oxygen, before finally breathing room air.


As per protocol for a baby of his size and gestation, Nolan had a head ultrasound on day 3 of life – found to be normal. He had a repeat at around one month of age – again normal. There has never been evidence of any brain bleed.

Although Nolan didn’t suffer IVHs, he did have a pulmonary hemorrhage resulting in substantial blood loss, given his size. It required two transfusions to replace volume lost. Nolan required another three blood transfusions throughout his stay.

Nolan also suffered from reflux, but more severely than Asher. He was on the same dosing of medication, but could never lay flat on his back, even long after a feed. He slept on a wedge along with Asher, but both boys weaned the wedge and the medication on the same schedule after they were discharged. Nolan has not suffered from reflux since, and has no other digestive issues.


Additionally, Nolan had a PDA in his heart, and like Asher, his was treated only with medication. He also had apneas of prematurity long past his due date; however, he was weaned from caffeine much earlier than Asher. He too required phototherapy and multiple courses of antibiotics for infections.


Nolan was discharged from hospital with Asher - a remarkable feat for twins to leave on the same day after such a long hospitalization. He also had no oxygen requirements at home. 

Immediately after coming home, Nolan began to see an infant development consultant through Queen Alexandra. Along with his pediatrician and GP and the neonatal follow up clinic, no concerns were ever noted with his developmental milestones. Nolan was slower than typical to sit and crawl, even for his corrected age, but when he finally mastered it, it came without effort.

At 18 months corrected (21.5 months actual), Nolan was still not walking. Again, therapists and doctors were not overly concerned because he was making attempts, but we knew that 18 months was considered the outside of typical walking age. At this time we requested the addition of PT. When Nolan was still not walking consistently or steadily at 2 years of age corrected, we requested a consult with Asher’s physiatrist through QA, as well as the neurologist. The neurologist saw him in summer of 2012 and said he had CP, but gave us no details or an official diagnosis. Because his head ultrasound was normal, her belief was that there were likely small bits of damage throughout his brain that a head ultrasound was not able to pick up.

In the fall of 2012, at almost 3 years old, Nolan saw the physiatrist and she officially diagnosed him with very mild spastic diplegia. In more recent times, it has been questioned whether Nolan's type of CP is actually more hypotonic than typical spastic diplegia as he seems to have more issues with low muscle tone than spasticity.

Unrelated to his CP, and after discharge from hospital, Nolan has had one surgery under general anaesthetic. Similar to Asher, after surgery Nolan had complications recovering, delaying his discharge time. Recovery then proceeded as normal. 

At the two year mark, Nolan’s speech was considered delayed, but by three his speech was within an expected range. Speech therapy was discontinued. In terms of cognitive development, Nolan is considered to be above average. Psychological and IQ testing show Nolan in the 91st percentile for his age. Nolan still sees PT in a consultative role through school as well as orthopedic surgeons and neurologists in Victoria, and at Shriner's hospital in Portland, Oregon. Nolan's hips do not require regular x-ray although his ankle and knee joints will be monitored (visually only at this point) for signs of stress due to his abnormal gait. Currently there is no need to pursue botox injections for Nolan. Nolan walks unsteadily but without the use of any assistive devices.

And that now takes me to present day.

Time to breathe. 

Can you believe what these two have been through?! Reading through it all even stuns me! Aren't they incredible?!!

Monday, April 13, 2015

Delete

I've tried to write a post a hundred times. (That's an exaggeration. Maybe ten).

I get a few words down. Then delete.

Write some more. Delete.

Write several paragraphs. Delete.

I think I know what I want to say and then I get typing and it all comes out wrong. It sounds like a burden. Like unhappiness. Like wallowing. And I don't want it to sound that way.

So I try again.

Delete.

Write some more. Delete some more.

Parenting is hard. Parenting special needs sometimes makes it harder. Today for no good reason and a million good reasons all at the same time, that feels very true.

And apparently that's all I needed to say. And not because I want you to feel sorry for me but because this is my life. And sometimes, whether I seem strong or whatever other nice way you might describe me, it all gets a bit heavy.

Good thing tomorrow is a new day, eh? And good thing between now and tomorrow there's wine and chocolate.


Thursday, April 2, 2015

Tales from the Vault - Homecoming Day

Tales from the Vault is a feature where I bring back some of my favourite posts from the archived blog. All text from the original posts has been left completely unedited; however, where I think context is required it's been added.




Today is the FIVE YEAR ANNIVERSARY of the boys' homecoming from the NICU! While it will always be a day to remember and celebrate, I really feel some peace about it this year. In the past, I've always considered homecoming day to in many ways, be more important than the boys' birthday. I mean it really is an important day, certainly one of, if not THE, happiest days of my life. But in recent years I've realized that while they may not have come home from the hospital for five months, those five months cannot nor should not be erased into a black hole of "the horrible NICU", as worthy as today is of celebrating.

For this "Tales from the Vault" I am sharing two essays I wrote separately for a writing class in 2011, but both relate to homecoming day. The first writing spark was "New Beginnings" and the second was "Going Home". The second picks up soon after the first leaves off. I've added photos of moments I refer to for your visual pleasure :)


New Beginnings

I wake up with butterflies in my stomach, having barely slept. In fact, I haven't really slept for the past week with all the last minute organizing we have been doing. We have had months to prepare, yet somehow it has all been left to the last minute, maybe because we were never sure this day would actually arrive.

I dress my daughter in a new dress and I pay extra attention to my own appearance because I know there will be plenty of photos taken today. I also know that the tears I will shed will leave streaks of makeup on my face so I am careful to look pulled together but not too made up.

We have decided to celebrate the magnitude of this day by stopping for breakfast at our favourite restaurant. As we are leaving the house, my husband sets up the self timer and we take our last photo as a family of three. Looking at the pictures, I am happy to see that the excitement in our eyes is for once outshining the worry and sadness that are normally so evident.


We arrive at the restaurant and quickly review the menu even though we order the same meals each time we come. Like every visit, I show my daughter, now happily colouring her menu, where we sat the first time we brought her here - the table next to the unlit wood stove, with her car seat propped on top. 



As I turn to look at the new art display on the wall, I can't believe what I am seeing: a local celebrity who is known to love this restaurant too. Every time we come I hope to see him but never have, until now. I think it must be fate that we see him today of all days. I admire his wife and daughter - what a perfect family they are.

Then the realization hits me that people may be looking at the three of us and thinking we too are a perfect family. A beautiful, giggling three year old with her smiling, loving parents. From the outside, I suppose it is a perfect scene because no one can see us on the inside. No one looking at us knows how broken we are and what a toll the past five months have taken on our family. They don't see that despite this morning's happiness, this family's strength has been pushed to its limits.

We finish our meals and then sit quietly looking at each other. "This is it", I think to myself. "Are we ready?" my husband asks, and I give a hesitant nod. I know he is not wondering whether we are ready to leave, rather whether we are ready for what is about to come.

We drive in silence. Tears roll slowly down my cheeks as I look out the window on this quiet Good Friday morning. I am crying for what we have been through, I am crying for the uncertain future we have ahead of us, and I am crying for the joy that is in my heart today. As we walk in to the hospital I wipe my eyes and cheerfully greet the nurses for the last time. Today, 152 days after their birth, we are bringing our premature sons home. Healthy (enough) at last.


-----

Going Home

I look down at the rough paper towel I'm using and cringe. I've been struggling with my cracked, sore hands, but no lotion can combat the amount of hand washing I do here. Every time I walk into the NICU I wash my hands, and then again each time I move back and forth between my twin boys. I have probably washed my hands a thousand times in the five months since their birth. I smile as I realize this is my last time doing this here; the first of many things I will do for the last time today.

We're totally organized to go home. Most of the boys' belongings have been slowly leaving with us all week. Their nurse and I review their complicated medication schedule and then our pediatrician arrives, ready to give them their well baby exam; it's strange to see after all the intense procedures they've been through. She graciously lets our three year old daughter help her, explaining everything as she goes along. She is kind and beautiful and our daughter is enamoured by her.

When both boys have been assessed, my husband and I excitedly dress them. For months they wore only a diaper in their hot, humid isolette; when they could maintain their own body temperature in a crib they graduated to sleepers with a hole cut in the leg, allowing for the wires connected to their monitors. Today they are free to wear whatever we choose and I have carefully considered the cutest possible outfits. When they're ready to be shown off we parade them through the nursery and everyone shrieks at the sight of them. We joke that babies are seldom big enough to leave the hospital wearing jeans, collared shirts and sweater vests.

As we're making our final preparations, one of the neonatologists comes in to say goodbye. "Can I hold them?" she asks, clarifying, "as babies, not as patients". The boys were at their most fragile, barely tolerating touch when they were under her care, so this is the most contact she has ever had with them. We snap a photo of her and our pediatrician before she hands them back to us, telling us how proud she is of them. I'm sure I see her eyes glossing over.

After strapping them into their car seats, there's nothing left to do but say our final goodbyes. Everyone is so happy for us, knowing what a long journey we've been on. The staff take a family picture and admire the boys one last time. 



They make us promise to visit and keep them updated on the boys' progress. We hug them and thank them and tell them how much they mean to us but the words aren't needed. They know.

And then we turn and walk out the door. It should feel surreal but it doesn't. We're all more than ready to go home.