Much Love,
Rachel and Joshua
Saturday, March 31, 2012
Pictures!
No big updates to post, except that he's now taking a bottle occasionally! But I thought I would post some pictures ^.^
Much Love,
Rachel and Joshua
Much Love,
Rachel and Joshua
Tuesday, March 27, 2012
Big update
So we had another care conference with the doctor on rounds with our little Biggun. They want to try him on straight formula, because they think the medication I take when I pump might affect him. It's all safe for nursing babies, but say they grab a frozen specimen from when I was on Zoloft, then next grab one from my change to Celexa, his body isn't properly acclimating to the changes like our normal bodies would.
So right now his primary reasons for being in the PICN are feeding and eyes. According to Dr. Moshfeghi, his eyes are doing phenomenal! But they just want to be sure before they release him since they know we will be leaving the state once he is released.
Their other concern is he isn't nipping. I found this a little odd because just today I decided to shed my bra and shirt and hold him skin to skin, and not only did he latch, but he drank me out! All the while being hooked up to be fed via machine into his nose down into his tummy. So he got his usual 50 ml of milk plus the extra 20 or so that was supplies via breastfeeding. I'll tell you, it was the most AMAZING feeling to feel him breastfeed. There really is no other feeling quite like it. I felt like I could contribute, you know?
He is also now a whopping 5 lbs 4 oz and counting! His weight gain has been nothing but phenomenal since his upturn into health. I am so proud of his progress. The only negative thing to report was the developmental team seemed concerned that his movements weren't super coordinated. He was able to reach up and suck his own thumb which was awesome! But they worry he is behind on his milestones... Not totally unexpected for his age and issues thus far. They say he is 37 weeks, but by my calculations, he should only be 36 weeks. Joshua and I have to wonder if that would make a difference in their assessment of him.
We are able to go in there and change him into the adorable clothes we have received which I will post pictures of. I can pick him up and hold him. I've been holding him swaddled, but they think it might be better if I held him skin to skin instead, so the plan is to start that immediately.
We discussed discharge and the upper elevation in Utah. So they are going to do a hypoxia test on him to see how his lungs manage the altitude change. Which is a pretty big deal given how much higher Utah is in elevation. They also told us we would know two weeks in advance on discharge, and that he isn't even within two weeks of discharge at this point. But fingers crossed!
Keep the prayers coming!
Much Love,
Rachel and Joshua
PS second picture is breastfeeding, but you can't see anything, so we thought it would be okay. No offense intended!
So right now his primary reasons for being in the PICN are feeding and eyes. According to Dr. Moshfeghi, his eyes are doing phenomenal! But they just want to be sure before they release him since they know we will be leaving the state once he is released.
Their other concern is he isn't nipping. I found this a little odd because just today I decided to shed my bra and shirt and hold him skin to skin, and not only did he latch, but he drank me out! All the while being hooked up to be fed via machine into his nose down into his tummy. So he got his usual 50 ml of milk plus the extra 20 or so that was supplies via breastfeeding. I'll tell you, it was the most AMAZING feeling to feel him breastfeed. There really is no other feeling quite like it. I felt like I could contribute, you know?
He is also now a whopping 5 lbs 4 oz and counting! His weight gain has been nothing but phenomenal since his upturn into health. I am so proud of his progress. The only negative thing to report was the developmental team seemed concerned that his movements weren't super coordinated. He was able to reach up and suck his own thumb which was awesome! But they worry he is behind on his milestones... Not totally unexpected for his age and issues thus far. They say he is 37 weeks, but by my calculations, he should only be 36 weeks. Joshua and I have to wonder if that would make a difference in their assessment of him.
We are able to go in there and change him into the adorable clothes we have received which I will post pictures of. I can pick him up and hold him. I've been holding him swaddled, but they think it might be better if I held him skin to skin instead, so the plan is to start that immediately.
We discussed discharge and the upper elevation in Utah. So they are going to do a hypoxia test on him to see how his lungs manage the altitude change. Which is a pretty big deal given how much higher Utah is in elevation. They also told us we would know two weeks in advance on discharge, and that he isn't even within two weeks of discharge at this point. But fingers crossed!
Keep the prayers coming!
Much Love,
Rachel and Joshua
PS second picture is breastfeeding, but you can't see anything, so we thought it would be okay. No offense intended!
Monday, March 19, 2012
Hike for Heroes
Hey guys! Long time!
But it's because it's nothing but good news! Biggun is on room air, no tube, and they are just working on getting him to take a bottle! He is now a whopping 4 lbs 8 oz. and growing! I'm now able to hold him as much as I want and he is getting so big!
The word on his eyesight was that everything looked good. It appears the Avastin worked its charm and he will get that 10 degrees of vision in front. He may still need glasses, but if he can see, who cares?! Woo!
I wanted to make a notable mention of an organization that helped us through this crisis. As you all know, I quit my
job the minute the baby was born so that I could be close to him. As a result, it put us in a dire financial situation. They swooped in and paid for a months worth of bills for us to take the edge off our financial debt. We owe a lot to them and I wanted to say thank you. Their website is www.activeheroes.org so if you get a chance to see how wonderful they are, I recommend taking a peek.
Thank you to all those who have been with me through this. I pray everyday the worst is over, and so far it's working. I couldn't have done it without the tremendous support from everyone here and the outpouring of love we have received. Thank you so much, from the bottom of my heart.
Much Love,
Rachel and Joshua
But it's because it's nothing but good news! Biggun is on room air, no tube, and they are just working on getting him to take a bottle! He is now a whopping 4 lbs 8 oz. and growing! I'm now able to hold him as much as I want and he is getting so big!
The word on his eyesight was that everything looked good. It appears the Avastin worked its charm and he will get that 10 degrees of vision in front. He may still need glasses, but if he can see, who cares?! Woo!
I wanted to make a notable mention of an organization that helped us through this crisis. As you all know, I quit my
job the minute the baby was born so that I could be close to him. As a result, it put us in a dire financial situation. They swooped in and paid for a months worth of bills for us to take the edge off our financial debt. We owe a lot to them and I wanted to say thank you. Their website is www.activeheroes.org so if you get a chance to see how wonderful they are, I recommend taking a peek.
Thank you to all those who have been with me through this. I pray everyday the worst is over, and so far it's working. I couldn't have done it without the tremendous support from everyone here and the outpouring of love we have received. Thank you so much, from the bottom of my heart.
Much Love,
Rachel and Joshua
Wednesday, March 7, 2012
Graduated
So Biggun was moved to the intermediate nursery on Sunday. If we had any worry that it was too soon, we were relieved of that today!
He has graduated to an open crib, which means no more staring at him through glass! His temperature is a little low, but he should acclimate to it without issue in no time!
He also hasn't had a single desat, brady, or apnea episode! He had his oxygen tube removed and is officially on room air! They can put it back on it he needs it, but he seems to be ready to grow!
He is gaining 30-50 grams a day, so his weight is really picking up. They are giving him 32 ml of breast milk fortified with prolactive to make it higher in calories.
I've been in Utah seeing my two older boys this week, so Biggun decided he needed to get big and strong before I got back.
He still has issues with nippling, and he has minor desats when he's eating because he has not yet mastered the suck, swallow breathe routine yet, but he's learning fast.
Dr. Moshfeghi came by today. I wasn't able to speak with him personally, but he made it clear that he was very pleased with the progress and he felt really good about Biggun's progress.
Keep the prayers up! They are working!
Much Love,
Rachel and Joshua
He has graduated to an open crib, which means no more staring at him through glass! His temperature is a little low, but he should acclimate to it without issue in no time!
He also hasn't had a single desat, brady, or apnea episode! He had his oxygen tube removed and is officially on room air! They can put it back on it he needs it, but he seems to be ready to grow!
He is gaining 30-50 grams a day, so his weight is really picking up. They are giving him 32 ml of breast milk fortified with prolactive to make it higher in calories.
I've been in Utah seeing my two older boys this week, so Biggun decided he needed to get big and strong before I got back.
He still has issues with nippling, and he has minor desats when he's eating because he has not yet mastered the suck, swallow breathe routine yet, but he's learning fast.
Dr. Moshfeghi came by today. I wasn't able to speak with him personally, but he made it clear that he was very pleased with the progress and he felt really good about Biggun's progress.
Keep the prayers up! They are working!
Much Love,
Rachel and Joshua
Friday, March 2, 2012
Eye follow up
Good news! Avastin seems to be working!!!
Biggun has no plus in his left eye and mild pre plus in his right. So we have bought time for the laser to work AND we saved one if not both eyes!
This is the best news we have heard in some time!
Thank you for the prayers... Apparently, God is listening!
Much Love,
Rachel and Joshua
Biggun has no plus in his left eye and mild pre plus in his right. So we have bought time for the laser to work AND we saved one if not both eyes!
This is the best news we have heard in some time!
Thank you for the prayers... Apparently, God is listening!
Much Love,
Rachel and Joshua
Tuesday, February 28, 2012
Avastin
So laser treatment hasn't had an opportunity to work, and Biggun's plus disease has accelerated rapidly. He's now at stage 3, and inevitably, hi retina will detach if nothing is done.
Our doctor intends to inject Avastin into his eyes in an effort to halt the plus disease. From the top opthamologist in the country, we asked him how many times he's done this, and his response was never. Never has a baby needed this procedure in his 23 years of experience.
We will know in two days if this drug can stop the plus disease from detaching his retina and give the laser time to work the way it needs to. The likely outcome is that Biggun will be blind, and at this point we are looking at ways to raise a blind baby.
To add to it, his left lung partially collapsed yesterday, further injuring his already scarred lungs. They've diagnosed him with moderate chronic lung disease and much more trauma to his lungs will make it that much more likely that he will need more assistance with breathing.
They tried to put in a PICC line again, but it was unsuccessful. They will try again this afternoon, but the concern is he is quickly running out of IV sites.
Please send prayers.
Much Love,
Rachel and Joshua
P.S. green eyes and presence of plus disease
Our doctor intends to inject Avastin into his eyes in an effort to halt the plus disease. From the top opthamologist in the country, we asked him how many times he's done this, and his response was never. Never has a baby needed this procedure in his 23 years of experience.
We will know in two days if this drug can stop the plus disease from detaching his retina and give the laser time to work the way it needs to. The likely outcome is that Biggun will be blind, and at this point we are looking at ways to raise a blind baby.
To add to it, his left lung partially collapsed yesterday, further injuring his already scarred lungs. They've diagnosed him with moderate chronic lung disease and much more trauma to his lungs will make it that much more likely that he will need more assistance with breathing.
They tried to put in a PICC line again, but it was unsuccessful. They will try again this afternoon, but the concern is he is quickly running out of IV sites.
Please send prayers.
Much Love,
Rachel and Joshua
P.S. green eyes and presence of plus disease
Monday, February 27, 2012
Re-intubated
Biggun is still having some issues recovering from surgery. Most prominent is his inability to tolerate feeds. They gave him 5 ML at 10 am, then another 5 at 1 PM, and by 4 PM, they noticed he had not digested 6 ML of the 10 they fed him. So his stomach is still waking up from being under anesthesia.
They had an issue where they noticed him getting very puffy after two blood transfusions. They gave him LASIK, a drug that acts as a diuretic, and that seemed to help the swelling go down, but he is still retaining quite a bit of fluid. Usually, he gains 20-30 grams of weight per day, and he has been gaining 100 grams. Which isn't a good thing. It means he is retaining a high amount of fluid.
He also threw up this morning. When they looked, they found his stomach distended to 4 cm due to his ventilator tube going down into his stomach and essentially filling his stomach with air. They pulled the tube immediately and replaced it with a larger one, but he had air in his stomach and intestines, and vomit in his lungs. They have removed most of the air from his stomach, but some still leaked into his intestines, so he's going to have gas pains. They did a chest x-ray to determine how much vomit leaked into his lungs and figure out if they will need to go in and remove any excess. It was an unfortunate circumstance and it explains why he wasn't tolerating his feeds very well.
He is supposed to be removed from his ventilator tomorrow and be put back onto the CPAP and eventually on the nasal cannula, but being back on the ventilator has caused some major distress to his body. We are still being told not to touch him or talk much to him so he can get as much rest as possible, which is really frustrating. Cathy called me on Saturday night to tell me if I wanted to come sit bedside and read for a bit, she thought that would be okay. It made me feel SO much better to be able to help change his diaper, take his temperature and see him with the top off his isolette. So far, she has been the saving grace of the nursing care.
Keep the prayers coming. Tomorrow, Dr. Moshfeghi will return and tell us what his eyes are going to look like long term and whether the ROP is getting worse or better. Hopefully good news!
Much Love,
Rachel and Joshua
They had an issue where they noticed him getting very puffy after two blood transfusions. They gave him LASIK, a drug that acts as a diuretic, and that seemed to help the swelling go down, but he is still retaining quite a bit of fluid. Usually, he gains 20-30 grams of weight per day, and he has been gaining 100 grams. Which isn't a good thing. It means he is retaining a high amount of fluid.
He also threw up this morning. When they looked, they found his stomach distended to 4 cm due to his ventilator tube going down into his stomach and essentially filling his stomach with air. They pulled the tube immediately and replaced it with a larger one, but he had air in his stomach and intestines, and vomit in his lungs. They have removed most of the air from his stomach, but some still leaked into his intestines, so he's going to have gas pains. They did a chest x-ray to determine how much vomit leaked into his lungs and figure out if they will need to go in and remove any excess. It was an unfortunate circumstance and it explains why he wasn't tolerating his feeds very well.
He is supposed to be removed from his ventilator tomorrow and be put back onto the CPAP and eventually on the nasal cannula, but being back on the ventilator has caused some major distress to his body. We are still being told not to touch him or talk much to him so he can get as much rest as possible, which is really frustrating. Cathy called me on Saturday night to tell me if I wanted to come sit bedside and read for a bit, she thought that would be okay. It made me feel SO much better to be able to help change his diaper, take his temperature and see him with the top off his isolette. So far, she has been the saving grace of the nursing care.
Keep the prayers coming. Tomorrow, Dr. Moshfeghi will return and tell us what his eyes are going to look like long term and whether the ROP is getting worse or better. Hopefully good news!
Much Love,
Rachel and Joshua
Subscribe to:
Posts (Atom)