Baby Eagan - 189 Days Later...Finally HOME!

 Eagan had an awesome "Going Home" party thrown by his primary nurse. We felt so special and loved. The big kids also enjoyed the special treat of cake we brought home for them.

Birth to Home

After 189 days, we are all home! For over six months, our family has been spread across Georgia. Eagan has been at either Dekalb Medical Center or Egleston Children's Hospital. The big kids have been with grandparents or home babysat by my family. I have traveled every day from the Ronald McDonald House to the hospital. I also went home on Thursday nights if Eagan was stable.

It was definitely all worth it. I would do it all over again because as I type this blog, Eagan is snoozing peacefully across my lap. Eli and Evelyn absolutely adore him.

We ended up coming home with an NG feeding tube and continuous feeds. This means that Eagan has 30 ml's of breast milk an hour running 24 hours a day. He thinks it is great fun to pull his tube out. I am pretty good at getting the tube placed; it is really easy. My tape job on the other hand could either use some work or Eagan is a tape removing master. I'm thinking both. He also has a busy med schedule. At 8:00 am, he gets Sythroid, Zantac and Poly-Vi-Sol. Then at 12:00 pm, I give him a Lovenox shot. At 8:00 pm, more Zantac, and at midnight, he gets another Lovenox shot. In addition to all this, I pump every 3-4 hours. Also, my breast milk for Eagan has to be fortified to make it 24 calories. This requires lots of measuring and mixing around the clock. Breast milk is naturally 20 calories per ounce, but Eagan needs a little extra boost because he is not even on the weight charts for his age.

Eagan is also on a heart and apnea monitor. Since Eagan has been home it has only gone off twice, both times for low heart rate. I am very thankful for this monitor. It helps me sleep peacefully because I know that the monitor will let me know if anything is off. It is a lot of work to move Eagan around the house with the feeding pump and monitor, but the peace of mind is totally worth it.

Eagan also had his first pediatrician appointment. The kids have switched to a new pediatrician closer to home for many reasons. Our previous pediatrician had wait times that lasted over an hour. It would not be fair for Eagan to have to wait in the car that long as they have no location for immune compromised children to wait. Our new pediatrician has low wait times and a private waiting area we can use. In addition, for Eagan's next appointment, she has blocked off a time slot so that no other children will be in the office while we are there. I could not believe she decided to do that, as I have never heard of this in any other practice. We go back in a month for his six months shots. Eagan also has an eye doctor appointment Wednesday.  

We also want to thank everyone for the prayers, thoughts and well wishes that helped get us home. The support from friends and family has been amazing. Eagan and I will definitely miss our amazing NICU nurses and doctors, but plan on visiting often. It is so good to be home!

Baby Eagan - NICU Day 176-186 - Almost Home!

 The next time I update will be from the best place ever! Home! By the end of this week, provided Eagan behaves himself, I have my babies at home for the first time since April. Eagan will be going home with a heart monitor, feeding tube, and a few meds, including shots. I are so very excited to get my boy home. He is doing awesome and growing like a little weed. Both of Eagan and I still have lots of things to do before we can get home. Eagan needs a Cystic Fibrosis test because he is positive for the gene. Eli is also but he is only a carrier. Eagan also has to pass his car seat test to make sure he can breathe properly while buckled in. He needs the Synagis shot. This shot reduces the severity of RSV (Respiratory Syncytial Virus) but does not prevent it. I still have to meet with Pharmacy about his shots, schedule a few more appointments, and get everything situated with prescriptions, insurance, etc.



 My family and I also took the big kids to the Atlanta Zoo today. This is our last family outing until April 2013. Eagan will not be able to go anywhere but doctor appointments and cannot be around large crowds or children. This will also be really hard on the big kids, because essentially, they will be quarantined too. If either one of them caught anything, it would be almost impossible to keep Eagan from getting it as well. It is going to be long and very boring, but it is worth it to keep little man healthy and alive. 

Eli and Evelyn had a great time at the zoo. They could name the majority of the animals and were thrilled to see some of their favorites in person. Truth be told, I am not sure who likes the zoo more between me and the kids.

Weight

10 lb 2 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.

Nutrition

Eagan is also getting 30 cc's of breast milk every hour by feeding tube. When Eagan cooperates, he gets four bottles of 10 cc's of breast milk a day, if he chooses to wake up for them.

Transfusions   

September 4 - Transfusion #39

Upcoming Tests

Eagan has a Cystic Fibrosis test Monday.

He also has a car seat test to determine if he can keep his airway open on Monday.

Baby Eagan - NICU Day 160-175 - Blood Clot, Shots, and Eyeballs

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

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.

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.