Archive for September, 2008

Quick update

Simon has been placed on a diuretic today to help with the water retention and his fluid intake was decreased from 9mL to 8.5mL/hour.  He’s holding steady on the CPAP at 6.  Tomorrow the doctors are going to check his CRP and determine if they can stop the antibiotics or if they need to continue a few more days.  They won’t go longer than 14 days on antibioitics in a little guy.  Good to know.

Simon loves sucking on a pacifier.  Yes, he has one and yes, he sucks.  He’s quite content with it in his mouth.  I laugh at the sight.  Simon is also up to 3 pounds, 5 ounces.  Yes, that’s an amazing weight gain since last week (12 ounces!!).

Jaden is trying to cope with the changes of our being in Denver.  Our days are becomming quite routine.  There have definitely been some challenges this week with the change, but I think that time with Dad will do him good beginning of next week.  I think it will do us all a bit of good.


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Our littlest man without the CPAP

Simon is nearly three pounds now.  He’s growing and gaining weight by leaps and bounds.  His feedings were increased to 9mL every hour today.  Simon remains on a pressure of 6 and his oxygen levels fluctuate between 30 and 40% on average.

Simon has been fighting a UTI for the last week or so.  Today was to be the end of the antibiotics, but he’s still showing signs of an infection and an ultrasound was a bit fuzzy as to what might be the cause.  The Nephrologists (kidney experts) at Children’s hospital have been called in so that the doctors can determine what is going on and if he has a reflux.  We are waiting for the determinations.

Simon does have a hernia that will need to be repaired.  His intestines are slipping into his scrotum sack.  It’s not a serious issue at this point, but something that will need to be done in the future.  We are also looking at needing eye surgery should Simon show signs of damage.  His eye exam on Monday showed some unfavorable changes, so the Pediatric Opthamologists will check his eyes again next week to see if the changes have occurred.  Some times babies correct the issue on their own, but most preemies will have to go through the surgery at some point.

Jaden and I are in Denver and will remain here for the duration less what time I have to be back in Cheyenne.  It’s definitely an adjustment period for us all.  I will do my best to update a bit more often, hopefully with pictures much more frequently.

Thank you to all our friends and family who have been a positive support and encouragement through this process.  We are forever grateful of your presence in our lives.

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Chugging Along

I haven’t been updating daily as there isn’t much to really update on.  Life is moving forward and so is Simon.

Simon had one culture come back positive and they have changed which antibiotics he’s getting to resolve the UTI.  He did well with the blood transfusion and his feedings have been increased to 7.8 mL every hour.  Simon has had quite a few Brady episodes over the last few days, some due to being on a prong versus masked CPAP.  Others are because he just forgets to breathe.  It’s going to take more time for him to remember to breathe on his own regularly.  Simon is up to 2 pounds, 9 ounces now too.

As a family we are doing okay.  Rob has a job offer on the table that is going to be much better for our family and we are just waiting to hear on scheduling allowances so that he can offer his boss a notice and begin working his new job.  I’ve been writing and have articles that will be appearing in a magazine in the coming months.  Jaden has discovered how to spell “Ben 10” and search it out on google.  He’s also been working on writing his letters.  All in all, life is pretty status quo.

We are planning on being in Denver Monday – Wednesday next week and will take Jaden to the zoo Monday afternoon.  The rest of our time will be spent at the hospital and Jaden will spend some time with my cousin and her family.  We anticipate a good trip.

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I have uploaded six new photos to Simon’s album.  Please take a peek at the changes and growth of our little man!

Simon is off the vent, which is taking extra work by his little body.  He dropped three ounces before he began gaining weight back.  He’s had a few Brady (bradyicardia) episodes on occasion, but fared well.  They started him at full pressure (7) on the CPAP and Monday dropped the pressure setting by 1, down to 6.  Simon did well with that on Monday and looked great.  Tuesday he had a few Brady episodes, but nothing serious.  Tuesday night into early yesterday morning he had a few more Brady’s than he had been having before.

I got there yesterday morning and got the update from his nurse.  I was there bright and early, his nurse asked if I wanted to hold him – and of course I did.  I was able to pick him up out of the isolette by myself for the first time.  What a great experience to have more freedom with my son.  Truly a blessing.  I sat down with Simon and looked at him and asked his nurse when the last time his Crits were checked.  I said that his coloring was off.  She said that Simon’s billiruben levels were up, but she questioned his Crit levels too.  She hadn’t been assigned to work with Simon in the last two weeks, so she hadn’t seen all the changes in his skin, etc.  I told her that even with slightly elevated billiruben counts, Simon’s skin still has a pink undertone that is gone.  I assured her that his Crit levels were low.  She went to get the doctor.

Doc ordered the standard tests – CBC, CRP, Blood Culture and Urine Culture.  With that being ordered, it was time to get Simon back in his bed.  Simon’s white cells were up and his Crits were down, complete reactive protein came back elevated.  He was started on antibiotics while they waited for more results.  Simon’s belly became hard and showed a few other issues, so a LP (spinal tap) was ordered as well.  They did the LP and then a stomach xray.  Then Mr. Simon started his blood transfusion.

Preliminary results on the LP were good.  We are waiting on the cultures, which takes 1-2 days.  He’s looking a million times better with the blood – that he desperately needed!

Now, since explaining the exhausting day yesterday, let me step back a bit.  Simon shows most of these signs anytime his crit levels are down.  His white cell count goes up, CRP is elevated, he brady’s more often… he’s started on antibiotics and most everything will come back good and after 10 doses of antibiotics, he’s good to go again.  The challenging thing with Simon breathing on his own is that his body is not doing other things that it needs to do – making red blood cells is one (Crit’s).  It’s going to take some time before he adjusts and his body picks up where it needs to be.

Fortunately, Simon is thriving well.  Clinically, his prognosis is improving and instead of the “if” conversations, it’s “when” as far as his home coming.  The answer to that question is up to Simon in most respects.  He’s doing very well with the changes thus far and even this round of antibiotics with the blood transfusion is seemingly nothing major in the scope of Simon’s overall health.  We expect his body to do this a few more times as he transitions into breathing on his own full time without any assistance, regulates his own body temperature, etc.

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I promise!

I’ve been a bit busy working on life and writing.  I have an article coming out in The WAHM Magazine this week and a few more I’m working on for that same magazine.  It’s great to have a direction to take with my writing.  Alas, that does mean that I’m not blogging quite as often.

Simon is doing well.  He was extubated late last week and has done well on the CPAP thus far.  From the ventilator, he was placed on maximum pressure, rate of 7, and has now been weaned down one step to 6.  So far he’s faired well with that.  Simon did lose a few grams with the change, but has come back up to nearly his pre-extubation weight.  We are pleased with the progress.

Simon is now seven weeks old and adjusted age of 31 weeks in gestation!  Way to go little guy!

I will be in Denver tomorrow, hopefully for the last single day trip during the course of this.  I have a meeting with Early Intervention in the morning with the intended snuggling time following.  I’ll bring back pictures of the masked marvel to share.

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Simon was extubated yesterday.  He’s done well with the changes thus far.  His blood pressure is a bit high from the steroids, but all in all, we are thrilled!  Simon’s oxygen levels have been in the low 30’s and stable as can be.  We will know more in a few days as to how he will do with the CPAP.  He could tire out and need to be placed back on the ventilator, but as the post says, “So far – so good.”

Simon has dropped a bit of weight with moving to the CPAP.  He was up to 1075 grams or 2 lbs, 7 ounces.  He’s now down to 1035 grams or 2 lbs 4 ounces.  Simon will gain weight again before long.  Every time that he begins working on process on his own, he will lose weight before he gains again.  His body is working harder and burning more calories in process.

Life is a bit better too.  Hopefully we can get a new schedule worked out that will help us keep balance.  We are meeting with Early Intervention on Wednesday to discuss therapy for Simon when he is released.  It will be good to have the full scope and understanding of what will take place so that we can begin adjusting our schedules to handle the changes necessary at that point.

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When it Rains

It pours – or so the saying goes.

Before I continue, let me just say that Simon is doing really well. Simon is up to 2 pounds, 7 ounces. We are anticipating a big jump in weight tonight with his weigh in as he will be extubated today and placed on the CPAP, breathing on his own, once again. We are expecting a drop in weight following the sudden increase as his body will be doing one more thing on its own. With each new milestone reached, Simon will lose weight as his body adjusts to burning more calories to maintain his ever-growing body.

It was amazing to see Simon yesterday. While talking to him, his face would light up, laugh lines became prominent and his mouth widened around the ventilator tubing. It was really like he was smiling away. While holding him yesterday he picked his head up and began to flop it around. He definitely doesn’t have control over his head, but he was trying his best to get it moved to where he wanted it, not where it needed to be placed so that he was getting adequate ventilation. What amazing changes to see in Simon.

The rest of life… (more…)

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