4 Month - Follow up appointments

A good day of appointments! Barrett had follow-ups with the Audiologist, Opthamologist and Pediatrician today. Ears and eyes showed no concerns...thank god! His appointment with the Pediatrician was also good with the Dr. being very pleased with his developmental progress. He weighed 12 pounds 7 ounces! The Dr. said that his development thus far is looking very encouraging (much better than he had anticipated), but we still can't forget that things may still show up as he progresses. The way I see it however, is that everday that goes by that we don't see anything means (hopefully) all the less severe it will be. But we are ready to face whatever challenges may come regardless. He has been such a wonderful baby...full of smiles and laughs if someone even 'looks' in his direction!

Internet searching

Needless to say, when we first discovered our son had had IVH and PVL we did a lot of researching on the internet. Although the getting the information was necessary for me, it was also hard at times as often you find only the worse case scenerios. It actually came to a point when Barrett was still in the NICU that I had to just stop researching and focus 100% of my attention on him. One Dr. gave me the best words of advice, "focus on what you are seeing today". I go through phases now, where I will spend a few days looking up information on the internet and then I leave it for awhile. The internet is often the ony reminder that Barrett may have some developmental delays. It is just hard to picture at this point as we are seeing no obvious signs.

As Barrett is developing more I am finding the need to get ideas on what I can be doing (outside of his regular OT visits). Through googling a lot of blogs I have been able to find stories of preemies with PVL that have outcomes that are well, not so bad. Better yet, I have also found some online groups specifically set up for these issues. It is amazing the support you feel just knowing there are others in the same situation. My most recent discovery was the benefit of doing infant yoga. So I am now awaiting the arrival of my new Baby & Toddler Yoga DVD!

The last four months....

So four months after the early birth of our second son, I finally have a chance to start a blog! Unfortunately a lot happens in four months, but I will do my best to give a summary of Barrett's story thus far.

Barrett was born in September at 30 weeks gestation. The birth itself was uncomplicated and Barrett did very well in his first few days. He did not need any oxygen or assistance breathing and only experienced very mild apnea (for which he was put on caffeine). We were elated that although he appeared so tiny, he was doing so well. Hence we named him Barrett - "strong like a bear".

Just as we settled into a comfort zone with the new addition to our family, Barrett went for a routine ultrasound of the head. The results came back with devastating news. The ultrasound showed Grade II/III bilateral bleeding (IVH) and also a cloudy area that may indicate PVL or Periventricular Leukomalacia. The Dr. explained to us that the outcome of this is most often Cerebral Palsy. Barrett would be affected on one side of his body in the form of Hemiplegia. He would be scheduled for a CT scan in a couple days and later an MRI to confirm. It felt like we had just been hit by a semi-truck. To this day, I can't sit here and write without crying as I think about how my husband and I felt. Our world had just been shaken upside down. When a parent first hears the term CP, you envision the most severe form. We were just absolutely devastated. It wasn't fair, it wasn't fair that Barrett would not get the same chances in life that his older brother would, it wasn't fair that people would look at him differently, it wasn't fair that he wouldn't have as many friends or play sports like other kids, or go to university, or get married...the list just went on as we grieved for the child we thought we would have. We spent many hours just sitting by his incubator crying. We loved this baby so much and just wanted to find a way we could help him succeed. As a parent you just want the best chance for your child in hopes they will lead a happy life. It took us a few days/ weeks to fully understand that "the best chance" and "happy life" could come in many forms. We also learned the full extent as to what CP meant. CP presents in many ways, and many children go on to lead 'normal' lives with some early intervention therapy.

By the time we left the NICU (6 weeks later), Barrett had been assessed by the Neurologist and Opthamologist. Thus far there were no concerns. Movements were equal and bilateral, and reflexes, etc. were all as would be expected for a healthy term baby. Barrett was also very proficient at breastfeeding which was great. He has since continued to exclusively breastfeed and has been gaining over an ounce a day!

So far, Barrett has been meeting all the milestones for 0-3 months (which he is only 7 weeks corrected age). He is a very social baby and loves to smile and laugh. Only time will tell on what issues may develop. As it will be his voluntary motor skills that will be affected, we will start noticing possible delays as he starts reaching for things, sitting up, etc. We are fortunate to know the challenges he may incur and are then able to prepare for early intervention. Presently he sees an Early Interventionist once a month as well as an Occupational Therapist.