This little guy is so cute! Yet, he has made me worry more than I have ever worried in my life.
As mentioned on my Facebook postings, we were able to wean him off of oxygen as of last week. He is doing great! It is so great to not have to use the pulse ox machine (that beeped like crazy ALL the time!), or tape his face with the nasal cannula, or just have 2 cords attached to him at all times. Now, it feels like I have a regular little baby!
We have also officially started therapies. For those that don't live in California, the state here offers what they call "Early Intervention Services". This is provided to children that the state deems need additional help to catch up with their peers or ensure they reach certain milestones, like sitting, crawling, walking, etc.
Colin automatically qualified because of his micro preemie status, so after an evaluation, he is now eligible to receive Occupational Therapy, Physical Therapy and Early Intervention therapies......in our home!
Aside from the state paying for this service, we are also trying to use our medical benefits through Aetna to pay for these services as well. Just trying to cover all bases so our little guy can get as many therapies as possible, without it coming from our pocket (which after our IVF & NICU stay has been a pretty penny!).
So 2x a week, Colin will be meeting with an Occupational Therapist who will help him to transition from using his G-tube to doing feeds by mouth. However, we can't really ramp up his therapy in this department until we find out if he is still aspirating (see my old blog post here).
To do this, we have scheduled another swallow study next Wednesday. I must say, I am having serious anxieties about it. Before, I really had no idea what to expect going into the last swallow study, because we had no idea that he was silently aspirating. Now, I know alot hinges on whether he has improved in this area.
If he is still aspirating to a serious degree, it may mean that we will have to still use the G-tube until we can start transitioning him to solids, which at that point we would have to evaluate and see if he still aspirates on solids, which sends us down ANOTHER path of therapies.
However, if he aspirates just a tiny amount (and we have all done it. Think about the times you have swallowed something down the wrong pipe!) then we would be able to slowly increase his feeds by mouth and wean him off the G-tube.
Both outcomes can mean the road ahead changes, and I guess that is what is making me a little nervous.
Because if I thought things moved at a slow pace in the NICU, on the outside for me, things seem to move at a FAST pace. Every day doctor's appointments determine medicine dosages, feeding amounts, therapy appointments, etc. And sometimes changing just one area affects another area. Which means I have to rethink where we are at overall.
But one of the other things that has been weighing on my mind were 2 separate doctor visits recently.
One visit was to his neurosurgeon to check on the status of his VP shunt (see earlier blog post here). Somehow I had gotten it in my head that we had a possible chance of maybe taking out the shunt at some point in Colin's life if his brain bleeds resolve themselves. But the doctor clarified that because he has had the shunt put in at such a young age, the brain develops around it, and removing it could cause problems such as strokes, further brain damage, etc. It's not really the end of the world for Colin, but at the same time, makes me a little scared for his future.
Do I have to become the overprotective mom that doesn't let my son play football, ride dirtbikes, or do any sort of activity that could cause injury to his head? Will Colin even care about these things? This is what I wonder and worry about, even though Rich reminds me all the time that I constantly worry about building a bridge over troubled waters........when there isn't even any water.
The other appointment was with his pediatrician. She casually asked me how I felt about Colin's eye contact. I never really thought about it, but had small inklings in the back of my mind that he still hasn't made continuous and constant eye contact with me, let alone even smile.
Preemie's have 2 ages: Chronological vs. Adjusted. Here is how the March of Dimes website explains:
Babies who are born prematurely often have two ages:
- Chronological age is the age of the baby from the day of birth—the number of days, weeks or years old the baby is.
- Adjusted age is the age of the baby based on his due date. Health care providers may use this age when they evaluate the baby's growth and development. So, if a baby is 6 months old, but was born two months early, his adjusted age is 4 months.
In Colin's case, right now he is 5 months Chronological, 2 months and 2 weeks adjusted. This means he would be evaluated as a 2 month old.
Since he is only 2 months and 2 weeks adjusted, our pediatrician is still not too worried that he hasn't developed consistent eye contact or smiles yet. But now, it is all I can do to not think about making sure this happens.
So do I continue to worry about whether his brain bleed has already affected his social and physical development? Yes, I know the answer is just love my little guy no matter what. But it's so hard not to let those fears dominate my thoughts.
Oh why can't this mommy thing be alot easier than I thought............
He looks so great Arianne! You're doing a wonderful job with him. I'm amazed at how well you articulate everything through your blog... you're so educated on all the many issues that go into raising a micropreemie.
ReplyDeleteI've never heard that about the shunt removal, although we were told they don't like to do elective removals. However, we were told that a lot of micropreemies with IVH's are not shunt dependent for life, meaning that there's a good chance Colin and Pierce won't need the shunt in the future. (Also meaning that if it breaks, it may not need revising!)
And as for the eye contact...We had the exact same worries with Pierce when he was Colin's age, and even later. I can't remember off the top of my head, but I know he was very, very delayed in smiling/eye contact (closer to 5 months adjusted). For a while, we were scared it was his vision. However, after talking to other micro moms, I've come to see this is very common. I've learned that, and our therapists always reiterate that with these little guys there is no clear line in the sand for how old they actually are. There are so many factors to consider--the time spent on the vent, the brain trauma/rewiring, sickness, surgeries, etc.
We continue to pray for Colin and for you guys.
-Lindsay
Dear Arianne, the missionary that baptized me 33 years ago told me recently that he worries about his grown children that have not made good choices. He even said that he sometimes feels that it would have been better NOT to have children because of the hardships. I realized and shared with him that we worry because we LOVE our kids, & that is a positive. We also worry because by doing so we are being conscientious. Worry can guide us to find resolutions or to prevent problems. The thing that makes worry negative is if we just worry without researching a solution or become aware of a potential. I wrote him a quick poem about Worry which I will try to remember to share with you later. Here's a simpler perspective of how worry works. I am caring for my daughters 4 month old baby and when I walk with her, I worry that I might trip on something, therefore; I become hyper aware to avoid tripping. When we are pro-active with our worries, then we find solutions, are very careful, and it's all because we Love and Care and are intelligent aware human beings, so don't worry about your worrying. It is natural and normal and exposes the depth of your Love, Concern, and Caring! Not to Worry about Worry!!!
ReplyDelete.. . Addendum to my yesterday's comment; first of all, you are a brave Mother and your concerns show your devotion. Next, Prayers and Blessings for Colin's well being. There are so many accountings of preemies that thrive and do excellent as they age! Also, I woke up remembering a piece of advice a sweet lady shared with me when I was going through a tormenting family trial that immobilized me. She said, "Look at your options. If there is something that you can do about, then do it. If there is nothing that you can do about it, don't worry about it" I've relied upon this bit of advice throughout the years. It has taken away my anxiety, creating peace of mind!
ReplyDeleteMy sister Jessica who has the baby with a g-tube was first told her baby may never eat. She still has no diagnosis, it's a work in progress with endless testing and exploring, but she's been given a miracle! As of a month ago, she miraculously passed one of her swallowing studies on thick food such as yogurt and solids. She still can't take in anything thin or liquid as she would definately aspirate, but now out of the blue she's eating solid foods with us!! Plus, the therapist who comes over to teach her to eat started to cry seeing Layla (the babys name) abilities. She said in all her years, she's never seen a baby who didn't eat any food for the first year of life take to food so quickly and so well. She has no aversions and is doing things the therapist thought wouldn't happen until she was 4 years old, but she's only 15 months old!!! She video taped her eating and shared it with her colleagues because it was so miraculous. Now Layla only hooks up to her g-tube at night to get her fluids. I share the story to give you hope and light that wonderful things happen to these special babies, even when the future is a massive unknown and the journey seems too long and scary! Hundreds of people are praying for you all the time and Colin and for these kinds of miracles. You'll be blessed! I love you Arianne :) You're so strong.
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