Today our sweet little man is 22 days old. Yesterday for his 3 week birthday he worked his way back up to his birth weight of 1 lb 14 oz (840 grams). Overnight he gained even more weight and as of today is officially TWO WHOLE POUNDS (915g)! YES! Little man has been on a winning streak the past 4 days and has had 4 of the most stable days he’s seen in his life. Stability to us means he’s had very few SATs (blood oxygen level desaturation, which causes his heart rate to plummet) he’s been able to advance on his feedings each day, and is progressing on his breathing.
He’s up to 6 mls of breastmilk a day, which is the most he’s eaten ever. Milk is best for ensuring his intestines keep working and don’t shut down, which all preemies are at risk of. As of today at noon he’s officially breathing 100% on his own (YES!!!), leaning on a CPAP for pressure support for his lungs. This of course scares mom and dad quite a bit bc the last time he was on CPAP it didn’t work out too well and he had to be intubated for the 3rd time, which he did not enjoy. But all fingers and toes are crossed over here.
Here are the biggest things we’re watching right now…
His Heart: He still has the PDA (an underdeveloped hole between his left and right ventricles), which is starting to act up and impact other organs now (blood in his lungs, irregular heartbeat leads to difficulty breathing). He had an echocardiogram done and it showed that the hole had NOT gotten bigger, which is good news. Ultimately he either needs to have heart surgery, or there’s a protocol of medication (tylenol and advil) we can try to help close up or decrease the size of the hole. We’re weary of using the medication bc it can negatively impact his liver, and he already has early signs of liver failure that we’re monitoring. In the end the doc decided to try the medication first and we’ll monitor his liver very closely - if we start to see his liver take a nosedive we’ll need to reassess. We really want to avoid heart surgery if we can. We’re doing a lot of what the docs call “risk-benefit assessments” these days, in understanding the risk vs. benefits of various treatment plans as it relates to his overall well-being.
His Liver: Silas has early warning signs of a condition called Cholestasis which eventually leads to liver failure. This started to come up a week or so ago. The good news is his tests today look like his condition is improving, so as he progresses and becomes healthier we hope his liver goes right along with him. Unfortunately this condition means he cannot take many of the medications he needs to fix other things wrong with him.
His Brain: He had another brain ultrasound today and it’s good news (well, it’s not bad news, which is good news. hah). Last week we were pretty devastated by his diagnosis of a Grade 3 IVH (intraventricular hemorrhage), at this point we just monitor the condition and hope the swelling doesn’t increase, and that his hydrocephalus (fluid in his brain) stays minimal. This week he's stable, with no new bleeds and no advancement of any fluid buildup (which means that for now we can avoid having a reservoir or shunt put in to drain the fluid). This weeks neurologist actually downgraded his condition to a Grade 2 and said it never should’ve been a 3. Is this a competition? It’s becoming clear that brain grading is very subjective depending on the doctor so we’re just going to call it a floating 2.5 and move on. Brain news for the next few weeks will be minimal, there’s lots that these weekly ultrasounds don’t measure, all they really help us do is understand what could be. It’s hard not knowing what the future holds, but I can tell you we fall more and more in love with this strong little boy every day so whatever will be, we’re game.
Next Steps: Mostly waiting and seeing. Doctor says the most important thing we can do is continue to pump out that breastmilk and do as much skin-to-skin (Kangaroo care) as possible. I always knew skin to skin was therapeutic for bonding and milk production but the doctor really stressed today how much it will also impact Silas’ overall brain and physiological health and growth. Apparently for preemies skin to skin is a simulation of being back in the womb, so babies respond and grow that much quicker during those times because their bodies react . Right now the goal is to do skin to skin for a minimum of 3 hrs a day, and even more if possible. If you know me, you know I CRUSH GOALS IN MY SLEEP so bring it, Silas, let's snuggle, my man.
He’s up to 6 mls of breastmilk a day, which is the most he’s eaten ever. Milk is best for ensuring his intestines keep working and don’t shut down, which all preemies are at risk of. As of today at noon he’s officially breathing 100% on his own (YES!!!), leaning on a CPAP for pressure support for his lungs. This of course scares mom and dad quite a bit bc the last time he was on CPAP it didn’t work out too well and he had to be intubated for the 3rd time, which he did not enjoy. But all fingers and toes are crossed over here.
Here are the biggest things we’re watching right now…
His Heart: He still has the PDA (an underdeveloped hole between his left and right ventricles), which is starting to act up and impact other organs now (blood in his lungs, irregular heartbeat leads to difficulty breathing). He had an echocardiogram done and it showed that the hole had NOT gotten bigger, which is good news. Ultimately he either needs to have heart surgery, or there’s a protocol of medication (tylenol and advil) we can try to help close up or decrease the size of the hole. We’re weary of using the medication bc it can negatively impact his liver, and he already has early signs of liver failure that we’re monitoring. In the end the doc decided to try the medication first and we’ll monitor his liver very closely - if we start to see his liver take a nosedive we’ll need to reassess. We really want to avoid heart surgery if we can. We’re doing a lot of what the docs call “risk-benefit assessments” these days, in understanding the risk vs. benefits of various treatment plans as it relates to his overall well-being.
His Liver: Silas has early warning signs of a condition called Cholestasis which eventually leads to liver failure. This started to come up a week or so ago. The good news is his tests today look like his condition is improving, so as he progresses and becomes healthier we hope his liver goes right along with him. Unfortunately this condition means he cannot take many of the medications he needs to fix other things wrong with him.
His Brain: He had another brain ultrasound today and it’s good news (well, it’s not bad news, which is good news. hah). Last week we were pretty devastated by his diagnosis of a Grade 3 IVH (intraventricular hemorrhage), at this point we just monitor the condition and hope the swelling doesn’t increase, and that his hydrocephalus (fluid in his brain) stays minimal. This week he's stable, with no new bleeds and no advancement of any fluid buildup (which means that for now we can avoid having a reservoir or shunt put in to drain the fluid). This weeks neurologist actually downgraded his condition to a Grade 2 and said it never should’ve been a 3. Is this a competition? It’s becoming clear that brain grading is very subjective depending on the doctor so we’re just going to call it a floating 2.5 and move on. Brain news for the next few weeks will be minimal, there’s lots that these weekly ultrasounds don’t measure, all they really help us do is understand what could be. It’s hard not knowing what the future holds, but I can tell you we fall more and more in love with this strong little boy every day so whatever will be, we’re game.
Next Steps: Mostly waiting and seeing. Doctor says the most important thing we can do is continue to pump out that breastmilk and do as much skin-to-skin (Kangaroo care) as possible. I always knew skin to skin was therapeutic for bonding and milk production but the doctor really stressed today how much it will also impact Silas’ overall brain and physiological health and growth. Apparently for preemies skin to skin is a simulation of being back in the womb, so babies respond and grow that much quicker during those times because their bodies react . Right now the goal is to do skin to skin for a minimum of 3 hrs a day, and even more if possible. If you know me, you know I CRUSH GOALS IN MY SLEEP so bring it, Silas, let's snuggle, my man.
1 comment:
The skin-to-skin info is incredible! Go Silas Go!
Thanks for the updates for all of us who love your fam of 4 dearly and want to walk this journey with you <3
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