Saturday, April 10, 2010

Milestones and struggles

This is a quote I ran into when I was looking for an old phone number for one of my friends whose daughter used to be my client. This child was born prematurely as well.

Can we emphasize more how she is losing skills that she had before? Like numbers, colors, shapes, songs. It seems she gets them in one session, and when I train with her every day, she 'knows' them, but if I stop doing that - like during vacation - she doesn't remember anything.

I mentioned in one of my previous posts that Loki "loses" skills often as rapidly as he masters them. This makes for a colorful pattern in development, not uncommon in preemies and often described as scattered skills. An example of what I mean: Loki's developmental age levels range from approximately 7 to 20+ months. He shows delays in gross motor (e.g. walking) and expressive language (e.g. talking) development, but is quite ahead in receptive language (e.g. listening) skills. Even his developmental pediatrician was very impressed with his understanding of both Dutch and English.

Being a parent of a preemie comes with many wonderful and challenging tasks. We are able to see the miracle of where Loki came from and where he is going. Our tiny 1 lbs 5 oz beautiful alien (and I mean this in the most positive sense) is now a handsome, chubby enthusiastic toddler. I very much appreciate it when people have faith that Loki will "be fine." I personally believe he will be much better than fine. Loki is a strong, determined and smart boy. And.... he was born at 24 weeks, has undergone a series of very traumatic events, and will need extra help developing to his full potential. Not only does he have to somehow "catch up" for the 4 months he was born early (I do not like the term catch up but this is what is used and for lack of better I will use it as well) , he has to process and somehow overcome all the scary and painful moments he already encountered in his life. It is not strange that this boy will show some odd and interesting developmental patterns. I have had plenty of conversations with parents of preemies about this specific matter. Seeing it unfold on a daily basis with my own child makes it even more interesting, but nevertheless also challenging.

I like to refer to this "sudden loss of skills" as the "fragility of preemie development." Most people are born full term without any major long lasting issues. Our nervous system is developed such that we learn quickly how to organize stimuli from both the outside as well as the internal world, assuming that parents provide compassionate guidance. For example, think about proprioceptive (body awareness in space), tactile (sense through touch), auditory (through listening/hearing), visual (through looking/seeing), vestibular (movement of our body), and olfactory (smelling) inputs. Most people are born with the ability to learn how to regulate these different stimuli and are able to do so with help from our parents/caretakers. They hold us to calm us down when upset or gently pet our booty (proprioceptive), they rock us (vestibular), sing or hush (auditory), and darken the room (visual) when we need to fall asleep. As we grow, we learn how to calm down our system and how to organize our senses, which also helps us organize the world around us. This is a fundamental aspect of our development, as an organized nervous system is needed to help us focus on mastering new milestones and learning new skills, day in day out.

I mean no disrespect towards children and adults with developmental challenges of a variety of diagnoses, but for obvious reasons I will focus primarily on the issues of regulation of the senses and developmental issues based in issues of prematurity and extensive hospital stay, and specifically how this relates to Loki's development.

When a baby is born prematurely, he is not ready to process the world. Among others, the nervous system is not ready for all the stimulation fired straight at it and in addition, some of the basic body functions are not yet ready for the outside world (e.g. eating). Add to that the fact that a (micro)preemie is not put on their parents' chest to feel, smell, and hear his familiar caretaker(s). This baby does not land into a warm place surrounded by family, where everybody tiptoes around and whispers (after the first hectic hours of being born, of course) to not wake up the baby.

On the contrary, a (micro)preemie is often born through c-section, rushed to a table surrounded by many people who are trying to keep this little person alive, with bright light, lots of noise, tubes being pushed into the lungs, needles stuck into the body, and lots of pain. This is just the beginning of a long, long road toward growing to be full term while almost constantly being hurt by needles, feeding tubes, and intubation. In addition, there is an overload of stimulation by sound, light, and touch for which his system is not yet ready. How does this child learn to regulate his senses? How does this child learn to process not only "normal" input such as voices, diaper changes, and light, but also regulate all this pain, shock, and fear?

I do believe that this is where wonderful nurses, doctors, and parents come in to play. When Loki was still at Alta Bates the nurses were generally very careful and gentle with him. Even when they had to put in another IV (sometimes this happened several times in one day), they prepared Loki by telling him what they were about to do. A blanket was kept over the incubator to keep it somewhat "dark." Despite ringing alarms, medical staff coming in and out and nurses and parents talking, effort was made to keep it relatively calm. I can attest to the fact that this is not the case in every NICU. I thoroughly believe that, thanks to the knowledge about compassionate care and child development within Alta Bates, Loki has an amazingly well developed regulatory system for such an early preemie. Of course, it helps that I am a stay-at-home mom and thus we are able to offer a consistent, calm, and predictable environment.

However--and this is what my rant is all about--it is impossible for a beginning like this, filled with illnesses, over-stimulation, uncountable medical procedures including six surgeries before the adjusted age of 12 months, to not have an impact on Loki's ability to learn and to retain information consistently. Add to this missed opportunities to play and learn due to frequent trips to and long hours of waiting in doctors' offices, as well as malnourishment due to severe reflux and frequent vomiting. Needless to say, Loki has a big task ahead in making up for missed time, "little" quirks in the nervous system, and the impact of several traumatic events. When anybody--but especially a young child--has to handle this many barriers, the acquisition of new skills and information retention can be a very challenging task.

A milestone as cutting a tooth, for example, is a big deal for a child, period; cutting a tooth for a preemie may impact the development even more. Not sleeping well can impact a child; not sleeping well for a preemie can impact the development even a bit more. Repetition of information to "program" and retain newly acquired skills is important for any child. (Think about wanting the same book over and over again) For a preemie? As you can imagine, this is even more so the case. A former preemie usually has to work extra hard in order to organize behavior and learning. Thus explaining some of the interesting, relatively large swings in skill acquirement.

When reading over the scientific literature, there is a lot being said about preemies' chances to survive and their prognoses. At 24 weeks, for example, viability rates range from 39%- 50%. This means there was almost an even chance Loki would not have left the NICU. A terrifying thought!

A common mistake is to think that preemies are just born a bit smaller, but once caught up in age and size they are just like any other child. Unfortunately this usually is not the case. There are a huge number of issues preemies are more likely to face throughout their lives than typical children. These days, researchers believe that, of all children born at 26 weeks or less, only 20% will have no long-term problems. This means there is an 80% chance Loki will have lasting developmental and/or behavioral challenges throughout life. Of this 80% with challenges, about 34% will have a mild disability, such as cognitive impairment or near-sightedness. Another 24% will have a moderate disability, such as visual/hearing impairment or Cerebral-palsy with the ability to walk. Finally, 22% will have a severe disability, such as cerebral palsy and no ability to walk, blindness or profound deafness. Add to this the increased likelihood of issues such as ADHD, ADD, behavioral problems, and depression during the teenage years. Just off of my head, I remember that approximately 70% of the preemies I worked with qualified for services in the school district or through insurance after the age of three. (This is an approximation, as I am simply trying to remember all the preemies I have worked with in the past 7 years.)

To give an example about long lasting effects, the girl I talked about earlier is 5 years old now. She is a beautiful, incredibly smart, and a very funny child. If you look at her, you wouldn't even think anything is different about her. Her mother is incredibly talented and dedicated to her development and overall well-being. She is going to kindergarten and the family had a very hard time finding the right place for her. The child is terrified of alarms, including school bells, and she panics when surrounded in a hallway by a group of peers. Specialists believe she may suffer from post traumatic stress disorder, a leftover from her preemie days as well as later hospitalizations. Without appropriate treatment she won't be able to function and gain skills and knowledge in an age-appropriate manner in a big classroom. A small classroom usually means private school, which is not possible for everyone due to financial means. Unfortunately, due to having heard too many alarms combined with the pain and trauma of endless medical procedures when her system was not ready to regulate the input, she now at the age of 5 faces challenges with school placement.

I know Loki will be "fine." Obviously, he has no major disabilities. Thank goodness for that. However, among former preemies, minor learning disabilities are often not identified and diagnosed until a child is actually enrolled in kindergarten or elementary school. So if people ask me, "How is Loki doing?" I think he is doing wonderfully well, I remember all too well where he came from. Concurrently, I am very aware of the fact that some of his seemingly minor symptoms can be indicators of difficulties later on. I believe it won't be anything we cannot overcome or address but I do think it is important to understand this when we are worried about his development. For some of you, these bumps may just look like normal developmental plateaus. Our worries are grounded in a reality we usually forget about because it makes no sense to dwell on it. Just for once, though, I want to share this information so people understand from where we are coming. Please understand why we are putting this extra bit of energy in encouraging Loki to communicate, even though we do understand what he means when he points and cries. The first three years of our lives our brain grows more rapidly than at any point after that.

A newborn's brain is about 25 percent of its approximate adult weight. But by age 3, it has grown dramatically by producing billions of cells and hundreds of trillions of connections, or synapses, between these cells. We also know there are many things parents and caregivers can do to help children get off to a good start and establish healthy patterns for life-long learning." (from Zero to Three web-site).

Early intervention services have shown to make a huge difference in outcome for children with struggles early on in live. I know all too well that the extra effort now can make a huge difference later on.

We want to keep it fun and relaxing for Loki, yet we also want him to grow to his full potential. Which parent would not want that for their child?

I could go on and on, much more I would like to share but I will save that for a later date. Thank you for reading.

5 comments:

Janie said...

Loki is so very lucky to have you both for parents. The endless dedication you both have will help him develop in every aspect far greater than anyone could hope for. He is such a smart little boy. Love you all very much - can't wait to see you!!!

marieke said...

I agree with Janie, and mom, dont ask for a please to help loki develop the way dad and you do. This little guy has other needs than other kids. You both know exactally how to handle those needs. You are my hero´s!! XX Marieke en Martin

Anonymous said...

Elke keer lees ik met bewondering jullie verhalen op de site. Wat hebben jullie al veel meegemaakt en wat kun je het allemaal goed onder woorden brengen. En inderdaad zoals de anderen ook al zeggen Loki boft met ouders zoals jullie. Liefs Eva

Cheryl said...

I would love to see this published somewhere...I learned a lot reading it, and ironically, had a very hard morning with Bri, whose sensory overwhelm, anxiety in new situations, and constant need to be almost on top of me at all times can be overwhelming. Thank you for reminding me that early experiences, including what happens in the womb, are critically influential. I too know that my child will "be fine" in that larger sense--but I too recognize that there are lingering issues that likely will always rear up. I am constantly vigilant for any sign of a problem, because I know what the stakes are. You know that we all think you and Jesse are awesome parents--but that also gets old because you are also human beings who get tired, overwhelmed, and stressed just like anyone else. You do what you do because Loki needs you to, and because you have unique experience that helps you know what to do...but I know it takes a toll. You are indeed running a marathon, not a sprint here, and so is your beautiful son.
Love,
Cheryl

Elaine Stiles said...

Great post, Kat. I also feel like I must qualify my responses to questions about how the kids are doing with the caveat that there are many more hurdles ahead. I am constantly reminded of this (even though I also refuse to dwell on it). Most recently, Milo had a hearing screen where the technician reminded me that micropreemies are at risk for progressive hearing loss over their childhood. A few months back, our pediatrician (mother of preemie triplets) explained that her sons have fairly significant learning and processing disabilities that will be with them for life. Her sons are happy, active, social kids, but their birth circumstances marked their bodies and brains for life. Then of course, as you say, we must rejoice in the miracle that our children are here and happy and more or less healthy. Glad to read your words today!

About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.

In August 2010, he and his parents moved to the Netherlands.

Read about his first name.
Read & hear about his middle name.
See photos.
See videos.

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