Eagan Update - 14 Months Old in Pictures

Big Boy Eagan Update

Eagan is growing by leaps and bounds. He is now a gigantic eighteen pounds! He thinks it is great fun to throw his head back while I am holding him, causing me great panic and him big giggles. He is heavy and strong! 

Eagan is still exclusively g-tube fed. He was making some progress with nursing and bottles, but has recently decided he is not a fan. I am still making regular attempts to introduce food by mouth and he is regularly refusing. He is laughing, smiling and playing with toys.

His Little Room is in production. Each one is made to order. It takes three or more months to make it. We should have it soon and I am so excited to put him in it! 

Eagan's First Birthday!! 4-11-13

Eagan is one year old!!! I cannot adequately put into words how amazing this is. Eagan has come such a very long way, taking the longest, most difficult road. My little one-pound-peanut is now a little chunk with so much personality! He smiles at his mommy and enjoys watching his big brother and big sister. I could not be more proud of this sweet, sweet little boy. 

I am so very thankful for the love and support Eagan and I have received over the past year. We have had so many truly amazing people in our lives to get us to where we are now. 

I have spent 365 days with this little miracle in my arms. I feel beyond blessed to be his mommy and enjoy his sweet spirit every day.

Busy, Busy Baby

Since I have posted last we have been to what seems like a million appointments. I wish I could post more but we are all just worn out. Eagan learned to roll over yesterday and now sports a fancy new helmet to fix his crooked head.

 This blanket was sent to us from such a sweet friend and it is not only heart-warming, but the softest blanket ever.

 

 Right now we are also doing a fundraiser to help pay for a piece of medical equipment for Eagan. The below link explains more. 

Help Eagan

Baby Eagan - Appointments and Surgery

Eagan has been extremely busy since I posted last. When we came home, I planned on posting once a week. That was a very, very lofty goal. These days, I feel accomplished if I get a picture put up on Facebook. Three kids under the age of three, one of which is medically high-maintenance, is a full-time, around the clock job with no potty or lunch breaks. 

  Eagan has had doctor appointments with orthotics and prosthetics regarding his head shape, his surgeon, speech therapy, physical therapy, occupational therapy, audiology, hematology, endocrinology, dermatology, gastroenterology, pulmonology,  retinal ophthalmology and his pediatrician. We have seen most of these doctors and therapists more than once already! He averages 2-3+ appointments a week. See why I have no time?

Here is a run-down of how Eagan is doing:

•  Orthotics and Prosthetics - Eagan had the first scan of his head in November. At that time, it was decided he wasn't old enough for a helmet to re-shape his head. We go back December 28 to repeat the scan and make a decision.

 

• Surgery - We met with his wonderful surgeon, Dr. Bhatia. She has done the majority of Eagan's surgeries. We are so thankful to have her in his life. She really cares about her patient's well-being. Dr. Bhatia visited Eagan in the NICU frequently during her rounds and always was so positive about his prognosis. She is very special to us because she preformed his very first surgery. We didn't think Eagan was going to make it that night and she personally delivered the awesome news! We go back to her soon for a post-op check up from his most recent surgery on December 12.

• Speech Therapy - Eagan had an evaluation with ST. His therapist has decided it will be best to wait until Eagan is receiving bolus feeds before we further proceed with this therapy avenue. 

• Physical Therapy - Eagan is very behind in this area. This is completely expected for everything he has been through. We had several appointments with the therapy services through Egleston. Once Eagan was loaded into the car, driven over 2 hours, and then unloaded to his appointment, he was just worn out! Unfortunately, sleepy babies don't respond to therapy to well. Most sessions consisted of more tears than actual progress. We have decided that therapy in our home is a better option for E. Initially, I was worried he would be too distracted with his surroundings and older siblings, but he has proved otherwise. We have a sweet therapist from Babies Can't Wait who will be visiting us several times a week. 

• Occupational Therapy - Eagan is going to be receiving OT through a program called Georgia Pines. They work with children who have hearing and vision impairment. A therapist will come to our house several times a month and help Eagan learn to use his hands and other senses to make up for the areas he can't use.

• Audiology - Eagan had an ABR (Auditory Brainstem Response) test done on November 12. Eagan was supposed to sleep through the test, but that did not go as planned. We scheduled a sedated ABR to be done under anesthesia when he had surgery on December 12. E showed no response on both ears and was diagnosed with Auditory Neuropathy. This means that the nerves between the ears and brain are not working. Essentially, Eagan can't hear. We will be following up with an ENT doctor soon. Hopefully, Eagan will be a good candidate for cochlear implants.

• Hematology - He sees an awesome doctor at Egleston's Aflac Clinic. They closely follow the thrombus (blood clot) in Eagan's heart. Each appointment, he gets an echocardiogram and a blood draw to test the level of blood thinner in his body. At 12:00 pm and 12:00 am, we give him a shot in his tummy of Lovenox. This helps the clot from getting larger. As of right now, the clot has not changed in size since he was discharged from the NICU, but has hardened. The plan is to complete six months of Lovenox shots and then re-evaluate.

• Endocrinology -  Eagan has hypothyroidism. He takes Synthroid every day for this. Eagan had his blood drawn at this appointment to check his levels. The doctor has decided he will take this medicine at least until he is three. If hypothyroidism is not properly controlled, it can inhibit proper brain development.

• Dermatology - E has had some really awful looking skin issues going on since shortly before we left the NICU. We saw a dermatologist near our home. He prescribed a steroid cream and oil. After a few weeks, there was no real improvement. When Eagan was hospitalized for his surgery on 12/12, a dermatologist consulted on his case. She is the top pediatric dermatologist in Georgia. In less than 2 days using what she prescribed, we have seen a complete improvement and E is more comfortable. The doctor explained that his skin is like a brick wall, except his skin has the bricks, but not the mortar to hold it together. 

• Gastroenterology - Because E technically has Short Gut Syndrome, we will be seeing GI for a very long time. Currently, Eagan is fed through a tube twenty-four hours a day. He gets breast milk that is now fortified to 27 calories per ounce. He was on 24 calories, but he lost weight and needed an increase. Our goal is to start compressing his feeds, possibly in March, to 20 hours a day. 

• Pulmonology - Eagan sees a pulmonologist because he has chronic lung disease, bronchopulmonary dysplasia and is at high risk for RSV. Eagan goes once a month for the Synagis shot. This reduces the severity of RSV if Eagan were to contract it. He is also on albuterol and atrovent through a nebulizer because he has devoloped wheezing and coughing.

• Retinal Ophthalmology - Eagan has retinapathy of prematurity. He had laser surgery and avastin treatment on his eyes while in the NICU. We have been to Dr. Hubbard twice since discharge, but now we will only need to visit him as needed. E will now be going to a pediatric ophthalmologist to determine the severity of his vision loss.

• Pediatrician - Last, Eagan sees a pediatrician. We were very lucky to find an awesome pediatrician. Dr. Newman sees Eagan for sick visits and immunizations or well visits. Her office is very accommodating to Eagan and keeps him in a separate area from sick children at all times. 

 Eagan had surgery on December 12. At the beginning of the surgery, they lost vein access. Eagan had yet another central line placed. They attempted one in his chest, but his anatomy is just too off from so many previous operations. They ended up putting a femoral line in his groin. After this, he had a nissen fundoplication. His stomach was wrapped around his esophagus to eliminate reflux. This is a permanent procedure, but also means he cannot vomit or burp. Next, the surgeon placed a g-tube. Eagan no longer has a tube in his nose, but now one directly through his abdomen. Finally, an audiologist preformed the ABR discussed earlier. Overall, he was under anesthesia for five hours and thirty minutes. He was in the hospital for 3 days. Pain control has been a challenge since we have been home, but we love the new tube and no reflux.

And now what everyone is waiting for - PICTURES!

Right after surgery

A couple days post-op

I will be updating more frequently now that things have settled down a little. Thank you all for the thoughts, prayers and well wishes. We appreciate them more than words can say.