No privacy in the hospital

Poor Oliver had quite a few spectators at his last bath:

Our first family picture

Elsa's first haircut

Oliver update #5 - Swallow study and MRI results

Joel and I met with one of Oliver's doctors and one of his nurses today in a parent conference to review his condition and discuss what will need to happen before he is discharged.  The primary reason Oliver still needs to be in the hospital is because of his high blood pressure.  His doctors are hoping that a higher dosage of his current heart medicine will help with this and we'll see how it looks over the next few days.  He is still having occasional apnea (when he forgets to breathe) and bradycardia (when his heart rate slows way down) events, so we'll probably be sent home with him on a portable home monitor that will send an obnoxiously loud alarm through our house if he stops breathing or has a severe drop in his heart rate.  We will also probably be bringing him home with his feeding tube (see below) and a long list of follow-up appointments with the cardiologist, nephrologist, geneticist, occupational therapist, and of course our regular pediatrician.

• Swallow study results: The mechanics of Oliver's swallowing appeared normal!  Yea!  The therapist now attributes Oliver's difficulties (holding his breath, dropped heart rate, and a bit of choking) to his low stamina.  This means that we will continue working with him to learn to nurse when he is awake and alert but we'll stop as soon as he shows signs of fatiguing and then the remainder of his meal will be given through his feeding tube.  We expect to continue this combination of nursing and gavage (tube) feeding at home after he is discharged until he has enough stamina to nurse for all his meals.
• MRI results:  The MRI study was conducted on his brain to follow up some concerns about Oliver's ventricles appearing enlarged in the ultrasounds before he was born.  (Note: these are the ventricles in the brain that allow the spinal fluid to flow in and around the brain, not the heart ventricles, which in Oliver's little body also happen to be thicker than normal.)  The MRI confirmed that the ventricles in Oliver's brain are indeed mildly to moderately dilated.  The doctor believes that, in Oliver's case, this is due to some part of his brain being smaller than expected, and that the lack of tissue allows the ventricles to take up more space.  We are not able to tell at this point what part of the brain may not have developed correctly; we'll just have to wait and see how he grows and learns.  The great news from the MRI report is that all other aspects of the brain (the ridges, size, density, etc.) look completely normal!  Allelulia! 
• We're still waiting on a few more genetics tests. 

So, we still don't know what Oliver's full capabilities will be, but we are encouraged by both the study results and the fact that as he gets older he continues to grow in alertness and curiosity.  He tries so hard to lift his head up already (see the photo below)!  We hope to all be home together as a family soon. 

I am exhausted, but the Lord is good.

Pink and white blossoms

Elsa and our apple tree:

 

 

 



Oliver update #4 - an ongoing puzzle for his doctors

Oliver is now 4 weeks old (wow, a month already!), or 39 weeks, just seven days til his due date.  I'm driving again and that has made it easier to be at the hospital more, but I am still very easily fatigued and find that I have been succumbing to weariness more often.  We know that the end is in sight for Oliver to come home, but of course we won't really know just when that will be until it is happening.  So, here's the report:

• GAINING WEIGHT:  Oliver is now 6 pounds!  He had stopped gaining weight for a few days so his milk is now fortified and he has responded well and started gaining weight again.  (They first spoke of adding a high calorie formula or corn oil to his meals, but I asked if we could use another more healthy and beneficial oil, so his doctor called me a few hours later from the grocery store and we settled on a gourmet grape seed oil!  Hopefully he won't turn into a gourmet food snob at too young of an age.)
• HIGH BLOOD PRESSURE:  His blood pressure has been steadily rising over the last few days and his doctors are trying to determine if this is due to his heart conditions or because of his problematic kidney (which could be signaling to his body that it is not having enough fluid flowing through it, and then the body responds by increasing blood pressure to increase the fluid flow).  They ordered another echo cardiogram which has shown that his leaky valves have resolved (good), that the ventricle walls have thickened even more (not good), but that the overall functioning of the heart is still normal (very good).  The doctors suspect that his heart is thickening as a response to having to work harder against the high blood pressure.  The medicine Oliver has been taking for the WPW condition is also used to lower blood pressure, so they have increased his dosage slightly to see if that will help.  We are also now waiting for results from a test that will tell us if his kidney is sending bad signals to his body and causing the high blood pressure. 
• LEARNING TO SWALLOW:  As the nurses have been working with Oliver and me on nursing some concerns about his swallowing have come up - he will often hold his breath, cough, and/or have a severe drop in his heart rate as he tries to suck, swallow, and breath at the right times.  On Monday he'll do a swallow study where they will take x-ray-like pictures of his mouth and throat as he drinks his meal. 
• On Monday he'll also have an MRI on his brain.
• We still have yet to hear back from one of the more in-depth genetics tests.     

He is generally still a very sleepy baby, but the times he is calmly awake and alert are slowly increasing.  I adore the times I have with him when his eyes are wide open and he tries to pick up his head and look around.  He loves being held and usually hates having his diaper changed, but I enjoy his moments of fussing as an encouraging sign of vigor. 

Flowers

I love flowers.

And I've been missing my garden, so I've been bringing it inside for me to see.