Leaps and Bounds

Hi all,

Although it’s only been a week since my last posting, it feels like an eternity since I ‘put pen to paper’ so to speak. Looking at this idiom, I guess 25 years from now talk show radio hosts (if there will still be such a thing) will be asking callers to describe the origin of the term ‘put pen to paper’ as by then this may be a thing of the past. The modern version will go along the lines of ‘put stylus to tablet’! Enough about my predicting the future, and lets focus on what I’ve been up to.

The reason for my not writing sooner was that it’s been a pretty busy week for me. Mom stayed with me the entire week again dishing out loving dollops of kangaroo-care. I really enjoy this time with my Mommy, and it’s so good for my growth and development. Research has even shown that kanga-care leads to increase in body weight – so if there’s anyone out there planning to shed a few kg’s, I’d advise against this practice! Since meeting with Lauren last Saturday, my Occupational Therapist, I’ve developed in leaps and bounds. I understand that to most of my fans out there, these little actions may seem insignificant, but for me they are very significant, and are the building blocks to my getting healthy, big, strong and, most importantly, home.

After meeting with me last Saturday, Lauren put to together a hectic “sensory diet” for me which covers stimulation and exercises for all my senses. Since being put on the programme, with the help of my Mom and Dad, I now am stretching out my hands way above my head, just like a big person does. I also am stretching out my legs as far as they can go, right down to my little toes. I sometimes also sleep with a knee pointing at the ceiling, which is also new repertoire of movements. A favourite action of mine is also to cross my hands over on my little chest. Again, for all of you out there this is a simple little action, that you probably take for granted now, but for me this is a new action, as I’ve not had years of experience and practice with these appendages called ‘arms’! I must say I can now empathise with that McCain fellow, who’s running for US Presidency, what it feels like not being able to cross-over my arms, and put my hands above my head.

Part of the programme also involves implementing good routines, and through darkening the room (which is not too easy in the NNICU), I’ve started understanding when it’s sleepy time and when its awake time; previously much of my sleep was determined by the quantum of morphine and dormicum that I was getting. Through this programme I also get lots of wonderful touch, and get rubbed all over my body with cream. I can continue sucking on my fist, which is know as self-soothing, but I’m being encouraged to suck on both fists equally, and not favour my right fist all the time.

Some of my favourite exercises are when Mom or Dad place me in their hands, facing me and rocking me from left to right, at the same time making sure I track their eyes with my eyes. One of my Dad’s favourite things is to watch my moro-reflexes (named after the German paediatrician Ernst Moro who first documented this reflex). Those of you familiar with the moro-reflex will know that it is associated with my getting a fright, so when Dad saw that for the first time he had to dismiss himself from the ward he was laughing so much. I was very upset with him about this, but I guess the hands and feet outstretched to their limits, my fingers and toes extended to their extremes, and my eyes wide open does make for a funny image.

Sound continues to play an important role in my development and Mom and Dad have various different play lists for me, depending on whether it is sleep time, awake time, stretch time or quiet time. To ensure I get sufficient olfactory stimulation, Mom and Dad each have a Baby Sense taglet blankie, which they carry around with them so it takes on their smell, and then leave it with me when they’re not there, so that I can still sense their smell. So if you see my Dad chairing a meeting at work with a little blankie over the shoulder, don’t be too surprised!

Tuesday morning Elmien, the Speech Therapist, came to visit me. This was a lot of fun too! I had to show off my sucking and latching skills and how I move my mouth and tongue. All of this was really to help with me drinking from the bottle. Again, bottle feeding is an important part of me coming home; should I not be able to take a full feed via the bottle or breast, I will not put on the much needed weight. The downside of feeding via bottle or breast is that it does burn up many calories, so I still do get some of my feed via the nasogastric tube. I am on an exercise programme to increase my stamina to feed on the bottle or breast. As I have not been feeding in this manner for most of my life, I’ve not built up the necessary fitness to drink an entire feed on my own. Normally, a little baby would take in smaller amounts after birth, and as it grew and needed more food, it would slowly build up the stamina and fitness to suck, drink and swallow larger quantities of food. In my case I’m expected to immediately start drinking 70ml every two hours! It’s like having to run the Comrades Marathon without training. Needless to say, I am progressing well.

Wednesday evening was a bit hectic for my Mom and Dad, as there was no stock of Infatrini allocated to me in the NNICU. I’m not too sure where the logistics failed, but my Mom and Dad pounced on the challenge and sorted it out. Mom and Dad discovered that the Morningside Medi-Clinic’s pharmacy closes early evening, and all orders for prescriptions need to be filled before closure (we all suspect that the order for my feed was not placed). Then Dad started calling all the hospitals in the area to see if they had stock, and if they did, would they be prepared to relinquish a few bottles, bearing in mind that at the other hospitals there were also babies needing Infatrini and I didn’t want them to go without. This did not work out too well, so Dad went onto plan B, which was to make contact with Lynette of Pharmaplan, who are the local agents for Infatrini. My Mom and Dad had made contact with her a few months previously, on the recommendation of my dietician. Those of you who know my Mom and Dad well, will know that they, at the press of a few buttons, can access volumes of data and information instantly, via which ever device they have with them at that time. So communications with Lynette was established, and before long she organised my night’s feed. Once again, my Mom and Dad are stunned and amazed at the lengths people go to, to help out. So from all three of us, thank you Lynette.

The end of the week brought much excitement, as there were numerous mentions of my possibly coming home sometime. The timeframe has not been discussed, but I sense its close. Dr Ron, and his wife Gill, brought me the cutest little bear as a going home pressie. Dr Ron is Mom’s obstetrician / gynaecologist, and was the first person to touch and hold me when I made my big entrance onto planet earth 114 days ago. All the doctors and staff here reckon that I’m doing really well, apart from my weight. It’s on a rollercoaster ride, very much like the world financial markets. I’m 30% down (on my weight), much like Dad’s share portfolio!

In order to go home, I may still have a PEG (percutaneous endoscopic gastrostomy) placed in my stomach – which is basically a little plug directly into my tummy via the abdomen. To feed, my food literally gets poured into my tummy via this plug; in this way I don’t exert energy consuming much needed food and in the process burn too many calories. This was already under consideration late in August. A big bonus of meeting with Elmien earlier this week may be that she gives the all-clear for me to go onto solid foods. If that is indeed the case, then it would be an alternative to the PEG. All these types of decisions will be made next week, once the OT, Speech Therapist and Paediatric-Cardiologist has come to see me again.

This morning was an exciting and frenzied time for me. I met Dr Sonja, who is Mom and Dad’s chiropractor. They arranged for her to come and see me and do some baby massage on me and click and align my spine, which is really sore at the moment from lying in the same position for so long. Dr Sonja spent much of the morning showing my Dad how to do really wonderful feeling massages, easy ways of dislodging winds and caresses, soft as angel’s eye lashes, to make me sleep. What I liked most was when Dr Sonja made small circular motions on my forehead with massage oil, and in minutes I was in a deep sleep. I’m hoping Dad took good notes, that he can do the same, and teach Mommy. Dr Sonja will be seeing me at least two more times next week, which is really exhilarating, as this means there will be some more massage involved.

The reason why Mom couldn’t be here while Dr Sonja treated me was because she and Granny went to the airport to say ‘hi’ and ‘bye’ to my Uncle Frankie (my Mommy’s brother), who flew to Jo’burg and had a few hours layover en route to China, where he’s doing some missionary work. Uncle Frankie brought me some really cool gifts in the form of jean outfits! I can’t wait to get into them. The really exciting news is that Uncle Frankie’s daughter, Lilani, is having a baby in the next few weeks, which will make my Mommy a great-aunt, and my Granny a great-grand-mom! I guess that will make me a second cousin, once removed from the expectant baby, who is also a boy! This means the balance in of boys on that side of the family is finally evening out. Here’s looking at you cuz!

Well, that’s about all for this evening. I would have loved to have been outside today, as here on the Highveld it was another superb day of hot temperatures. Speak soon!

Lots of love, hugs and kisses,

Jarrod

Figure 1 My first introduction to Death-By-PowerPoint; Dad made contrasting slides for me to stimulate my vision

Figure 2 Me and Granny

Figure 3 Yawn!

Figure 4 Bonding with Dad

Figure 5 Passed out!

Figure 6 Dream Land

Figure 7 Stockpiles of Infatrini

Figure 8 Watching my mobile

Figure 9 After chiropractic treatment

Figure 10 Getting much needed kanga-care from Mommy

Tags: chiropractor, Dad, Granny, Mom, NNICU, Occupational Therapy, PEG (percutaneous endoscopic gastrostomy), Speech Therapy