Haven’t posted here in a long time and thought I’d add this update for people who don’t check augustmiles.org.
August had his breathing tube removed yesterday and is doing well. He is breathing room air without aid and we are able to hold him. Yeh!
It was a little stressful after they took the tube out. His breathing was very labored and he had a lot of secretions out of his mouth and nose. The doctors did a lot a things to get him stabilized so they wouldn’t have to put the tube back in. His CO2 levels were also a bit high, which would have meant going back on the respirator is it didn’t improve.
He went through a lot to get him stabilized. They sucked lots of stuff out of his nose and the back of his throat, he threw up lots of bile, was given stimulants to wake him up, and withdrawal medicine to stop his body from reacting to the pain killers. It was a little hard to watch the instant withdrawal which caused him to shake and fidget.
It is great to see him now without the tubes and not as fidgety. No smiles yet but maybe when he is moved to the main floor of the hospital, which could be today or tomorrow.
Had a great two weeks on vacation visiting family and friends in Maryland, Washington, D.C., and New York. Below are links to pictures. You can also click the Photos button in the navigation above and after Flickr opens, then click “Sets”.
Had a great, but brief trip to NYC. Went up the Empire State Building. Had lunch with Aunt Sally, August and Porter’s great-great-aunt. She has been leading a great life in NYC for the past 50 years. I’ll publish a picture of us when I get a chance. Below is our photo superimposed in front of the Empire State Building. We decided not to buy the fake picture.
I’m back driving to Tigard, Oregon, full-time, five days a week. Actually I’m being driven by a co-worker, but Janet is still left to handle two kids, feeding, eating, and pumping. Thank you Janet!
Obviously, Qualcomm is not very popular at our house. However, because I’m now in front of the computer full time I have found more time doing non-work in between waiting for edits, email, etc.
Janet invited me to join Goodreads.com and I have become addicted to listing all the books I’ve read as well as updating authors bios.
Dave Funk is generously giving his time, energy, and money to raising funds for August’s medical expenses. He is running the Marine Marathon as a fund raiser and is soliciting donations from friends and family.
If you would like to follow his training and make a donation, please click here: Augustmiles.org
It’s been a very emotional week. Our family is fine, but we are witnessesing a family we know suffer through tragic injuries of their 10 year old boy, Felix. He fell 25 feet out of a tree and remains unconscious in the ICU with skull fractures, broken wrist and leg. Knowing how much his parents are suffering and grieving is just so heart-breakingly sad. No one has any answers. We don’t know if he will survive his injuries or what his quality of life might be. That is such a hard and lonely place to be. I remember so clearly when August was still in the NICU. We celebrated every small achievement or glimmer of progress and mourned every setback. With nothing solid to lean on. No answers. No prognosis. We just have right now and that’s all Mark and Tina have with Felix. Right now.
Right now we are so grateful to be home with August–we have crossed over that line so August has been home longer than he was in the NICU. I don’t know why, but that feels really good to me to be on the other side of it. I actually worked up enough courage to take August back to the NICU for a visit. An unplanned expenditure of time while waiting for a prescription to be filled. I haven’t felt ready to go back. It still felt too raw for me, but we went and were happy to see one of his primary nurses Roger there, as well as Kathy and Dr. Martha Nelson, who admitted August. They were all so happy to see him and how great he looks. It’s funny to because they kept commenting on how big he is, but so many people throughout the day, throughout the city, tell me how tiny he is and they can’t believe he is four months old, and wow he’s like a week right? It was good to hear how big he is. I’m glad I could let the nurses and docs see him looking so good. It’s gotta lift them up a little bit see the kids that come out of there and are okay. It can be such a devasting place to be so much of the time.
People have told me after their first baby, they can’t imagine how they could possibly love another child as much as the first. But love is infinite and since having August I feel my capacity to love is even greater. I love Porter even more. Amazing. He is an amazing little guy. He’s been through so much and has such a gentle presence. I am surprised that he can find comfort in his little messed up body.
He’s up over 9 pounds now. Pooping continues to be a major challenge and work out. It has to do with his stomach muscles not being strong enough to push hard enough. It’s uncomfortable for him and we try to help him out as much as possible. His reflux has gotten worse, almost as bad as it was when he first came home. We go back to the feeding clinic on Wednesday and I feel like I am going to get scolded because he is not taking in enough milk or calories to meet their minimum, but honestly I don’t know how to humanely get anymore food into this kid. We are technically 125 mLs short each day. He is gaining weight though, so we’ll just have to wait to hear what they have to say. We met with the Early Intervention people from the county and we developed some goals for August and we plan to meet with them in home twice a month. Community health nurse isn’t proving to be all that helpful, but the weight check is nice so we will look into just renting a baby scale and save her the time of coming by.
Everything else remains the same, except we are gettin more and more smiles from August and fun noises and responses. He is so very sweet and everyone agrees he has an old man, old soul look about him. He locks his hands together by his fingers and holds them and his chest and lifts them up. It’s so damn cute. We took our first trip to the coast (Twin Rocks, OR) together and we are going to try camping in the Mt. Hood National Forest in two weeks for summer solstice.
Thanks for all your love and prayers.
We’ve been so busy with our new lives together, it is so hard to find time to post. Thanks again for all of your e-mails and dinners and all the care and support you have given us.
What’s new with August Miles?? He is three and half months old and is smiling and cooing and starting to giggle. The rash on his face, which we battled for over two months cleared up after two days of cortisone creme. Pediatrician and dermatologist don’t believe the rash is an allergic reaction to anything, but we swithed him back from Septra to Amoxycillan just in case. We’re fortifying mama’s milk with hypoallergenic formula at night and letting him enjoy milk without formula during the day. He is taking all of his feedings during the day from his bottle and we use his feeding tube only at night.Still going to tons of doctor’s appointments. August enjoys his time at the chiropractor (Judy Boothby). She does amazing work with him. Also meeting with Early Intervention, ENT, Audiology, Community Health Nurse, Infant Development Clinic and Feeding Clinic. He’s weighing in at about 8 1/2 pounds.
Thanks for all of your calls and e-mails. Now that August is home–who has time to post? We exhausted and not getting much sleep, except Porter, who is sleeping great through the night and has a ton of energy all day. The good stuff: he is a sweet little guy. He looks at us and smiles and is making happy noises. His getting some baby chub on his cheeks and legs and arms.
He is on a continuous drip of milk through his feeding tube for 10 hours every night and this seems to cause some discomfort with reflux and gas.
We have been to the feeding clinic at the hospital and they tell me we are doing everything right. I feel like we force feed him through out the day and constantly over night. He is up to 8 pounds 2 ounces as of yesterday.
We’ve been to the pediatrician, the surgeons, the cardiologist and nephrologist for follow up appointments and so far they have not had much to tell us. He will see the urologist later this month and have his GTube replaced at the end of the month.
Audiology report is showing a mild hearing loss. Though feeding is still by far our biggest challenge. Nursing is still not happening and he gets pretty sleepy during his bottle feeds. He did surprise us last week and took his whole bottle by mouth so we didn’t have to tube any milk. He did pretty well the morning too and took most of his milk from bottle. We’ve been taking him to a fabulous chiropractor–or magic healer as I call her–for subtle adjustments on his spine, pelvis, legs, feet and she is working to “turn on” his neck muscles which might help him to nurse someday.
JOhnny and I take turns with August during the night. I have him from bedtime until 3:30 AM while Johnny sleeps, then we switch and I start sleeping at 3:30 while Johnny is with August. I did sneak a picture of him in the middle of the night to show myself he sometimes actually sleeps at night.
We’re pooped.
This picture was taken on August’s second month birthday.
We made it! I can’t believe it, but we have made it out of the NICU. We left at noon on Tuesday, March 20th. Very relieved to finally be out of there. We are set up at home with a pump and tubing to give August a continuous drip of milk for 12 hours overnight. WE continue to feed him with a bottle several times a day and he is getting better at it–he lasts longer and actually stays awake to take the whole bottle (a whopping ounce). Took him to the pediatrician today and he is weighing in at 7 pounds.
I have to say as hard as this experience has been for our family, the staff at Legacy Emanuel NICU made it easier. The nurses and doctors there are supportive and empathetic and nurturing. They are friendly and positive and pro breastfeeding. They all gave us a rousing farewell and as we paraded August around to say goodbye.
We are learning to live with a newborn again and not getting a whole lot of sleep. It is difficult to manage the schedule of everything from feedings to medications to pumping and finding time for Porter, let alone eating and cleaning up. We will get better and better at this. We are so thrilled to have August home and to watch Porter sing “Twinkle Twinkle Little Star” to him when he is upset.
August is on track to come home on Tuesday the 20th–just in time for Spring. He’s gaining weight again and is taking in all the milk he needs to. We have all of his medicines and we will get the feeding equipment tomorrow. I’m looking forward to bringing him home and getting our family back together. I think the hardest thing will be managing time and all the appointments we have to go to and making sure that I pump every three hours, while continuing to meet Porter’s needs and getting him to school.
His nurse Roger gave him his first real bath on Friday–with bubbles from the oxygen tank. He didn’t like it very much.
Dave Funk is generously giving his time, energy, and money to raising funds for August’s medical expenses. He is running the Marine Marathon as a fund raiser and is soliciting donations from friends and family.
It’s been a very emotional week. Our family is fine, but we are witnessesing a family we know suffer through tragic injuries of their 10 year old boy, Felix. He fell 25 feet out of a tree and remains unconscious in the ICU with skull fractures, broken wrist and leg. Knowing how much his parents are suffering and grieving is just so heart-breakingly sad. No one has any answers. We don’t know if he will survive his injuries or what his quality of life might be. That is such a hard and lonely place to be. I remember so clearly when August was still in the NICU. We celebrated every small achievement or glimmer of progress and mourned every setback. With nothing solid to lean on. No answers. No prognosis. We just have right now and that’s all Mark and Tina have with Felix. Right now.
People have told me after their first baby, they can’t imagine how they could possibly love another child as much as the first. But love is infinite and since having August I feel my capacity to love is even greater. I love Porter even more. Amazing. He is an amazing little guy. He’s been through so much and has such a gentle presence. I am surprised that he can find comfort in his little messed up body.
Everything else remains the same, except we are gettin more and more smiles from August and fun noises and responses. He is so very sweet and everyone agrees he has an old man, old soul look about him. He locks his hands together by his fingers and holds them and his chest and lifts them up. It’s so damn cute. We took our first trip to the coast (Twin Rocks, OR) together and we are going to try camping in the Mt. Hood National Forest in two weeks for summer solstice.
