I have neglected this blog for far too many days. I think I have a case of what they call NICU-itis. It means you have been in the NICU far too long and it is making you crazy. Yeah, I am there, plus some. One-hundred and seventy-five days later, and any semi-normal person would be too. That's enough about me, on to Eagan.
The little man is not so little any more. He is starting to tip the scales at a whopping nine pounds. Yes, my little one pound peanut almost requires two hands to hold him now. Before our blog went on hiatus, Eagan was recovering from his reconnection surgery. He finally got better from that and off oxygen. Then, he had an echocardiogram. This is basically an ultrasound of his heart. Turns out, he has a blood clot in his heart that has steadily gotten larger. I have known about this clot for a long while but never been worried about it. The clot has really increased in size in the last month. So much so, that it is starting to block some important vessels and has wrapped around the end of his central line. To attempt to slow the growth of the clot and allow little Eags' body to reabsorb the yucky thing, he was started on Lovenox shots. Lovenox is a blood thinner. He gets a shot, twice a day, in his thighs or tummy. When he comes home, I have to give him these shots. They have to be given exactly twelve hours apart to work properly. Right now he gets them at 12:00 a.m. and 12:00 p.m. every day. He is also being closely monitored using echocardiograms to monitor the size and location of the clot.
Eagan's least favorite doctor, the eye doctor, has visited him far to many times in our NICU stay. This doctor is a retina specialist and has been monitoring Eagan's ROP. ROP stands for retinopathy of prematurity. Basically, the blood vessels in the eyes don't know how to grow properly since Eagan was born so early. This can cause his retinas to detach. He had Avastin injections in his eyes a few months ago. His retina specialist decided it was time for laser eye surgery. He had this surgery on September 25th. He had to be put back on the ventilator for the surgery. While intubated, he was also sedated and circumcised. Later that same day, he went downstairs to Radiology for an MRI of his brain just to make sure everything looks okay.
Now, we are at the point we have been waiting anxiously for such a long time. Eagan just has to get everything together to come home! He needs to get to full feeds, approximately 28 cc's per hour. He will come home on a feeding tube and his feeds will be continuous, or run all the time. I have to learn to put the feeding tube and learn how to give his shots. Getting up to full feeds can take quite a while, especially in stubborn little people like Eagan. The wait is definitely worth it, but we are very anxious to get my sweet boy home with his brother and sister. Once home, we will have twelve specialists, a pediatrician and several therapists to follow up with. I predict a very busy year and a stressed out mommy in the near future.
Weight
The little man is not so little any more. He is starting to tip the scales at a whopping nine pounds. Yes, my little one pound peanut almost requires two hands to hold him now. Before our blog went on hiatus, Eagan was recovering from his reconnection surgery. He finally got better from that and off oxygen. Then, he had an echocardiogram. This is basically an ultrasound of his heart. Turns out, he has a blood clot in his heart that has steadily gotten larger. I have known about this clot for a long while but never been worried about it. The clot has really increased in size in the last month. So much so, that it is starting to block some important vessels and has wrapped around the end of his central line. To attempt to slow the growth of the clot and allow little Eags' body to reabsorb the yucky thing, he was started on Lovenox shots. Lovenox is a blood thinner. He gets a shot, twice a day, in his thighs or tummy. When he comes home, I have to give him these shots. They have to be given exactly twelve hours apart to work properly. Right now he gets them at 12:00 a.m. and 12:00 p.m. every day. He is also being closely monitored using echocardiograms to monitor the size and location of the clot.
Eagan's least favorite doctor, the eye doctor, has visited him far to many times in our NICU stay. This doctor is a retina specialist and has been monitoring Eagan's ROP. ROP stands for retinopathy of prematurity. Basically, the blood vessels in the eyes don't know how to grow properly since Eagan was born so early. This can cause his retinas to detach. He had Avastin injections in his eyes a few months ago. His retina specialist decided it was time for laser eye surgery. He had this surgery on September 25th. He had to be put back on the ventilator for the surgery. While intubated, he was also sedated and circumcised. Later that same day, he went downstairs to Radiology for an MRI of his brain just to make sure everything looks okay.
Now, we are at the point we have been waiting anxiously for such a long time. Eagan just has to get everything together to come home! He needs to get to full feeds, approximately 28 cc's per hour. He will come home on a feeding tube and his feeds will be continuous, or run all the time. I have to learn to put the feeding tube and learn how to give his shots. Getting up to full feeds can take quite a while, especially in stubborn little people like Eagan. The wait is definitely worth it, but we are very anxious to get my sweet boy home with his brother and sister. Once home, we will have twelve specialists, a pediatrician and several therapists to follow up with. I predict a very busy year and a stressed out mommy in the near future.
Weight
9 lb 9 oz
Breathing
Eagan is breathing all by himself!
Vein and Artery Access
Eagan has a broviac sub-clavian line on the left side as of Day 103.
Medications
Zantac was added for his reflux.
He is also on Diflucan as a preventative measure.
Eagan gets a shot of Lovenox twice a day.
He is also back on Synthroid for low thyroid levels.
Eagan gets a shot of Lovenox twice a day.
He is also back on Synthroid for low thyroid levels.
Nutrition
He is getting
TPN and lipids. Eagan is also getting 10 cc's of breast milk every hour by feeding tube. When Eagan cooperates, he gets two bottles of 5 cc's of breast milk a day.
Transfusions
September 4 - Transfusion #39
Upcoming Tests
Eagan will have another eye exam Monday.
3 comments:
I'm happy to read that you are on the path toward HOME!!! We went home two weeks ago. If I can impart any lessons learned it would be this... work closely with your NICU case manager on getting Private Nursing in place, not just Home Health (teaching). Having to do Ella's nursing care has caused me such anxiety and really took away quality time with her. Come to find out we are eligible for private nursing and I have no idea why it didn't get set up for us... we're in the process of getting it in place now.
We're cheering for you!! Go Eagan!!
So wonderful to see how he's grown! Go Eagan!!!
~The Earle Family
Aww, I love this update! He's such a strong little guy and he looks so good too! He's definitely put on some weight, good for him! I've only commented a few times, but I pray often for him and for all of you too. I know he'll be home in no time!
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