10 lbs & 12 lbs

6 months!

Well, the last couple of weeks have been very busy. We have multiple medical appointments each week, 6 so far this week. Even when we're home all day, it's non-stop action from dawn (or earlier) until dusk (or later).

We have hired a nanny to come to the house and keep the boys during the day since I will return to work next week. My feelings about this alternate between relief and guilt. I know the kids will be in good hands for the few hours that I will be gone; the nanny is both competent and confident.

As for the boys, they're doing well. John Paul was able to spend a few days camping at the beach with Grandpa Metzger. He and Daddy are just finishing the Swiss Family Robinson, his first non-picture book.

Josef has bloomed into quite the helper/entertainer for the twins. He talks to them, shakes rattles, dances and sings silly songs to keep them happy. He learned all thses tricks from his Daddy.

Charlie is fat (comparatively) and happy. He is very social, talking and laughing with anyone who will listen. At his 6 month well-baby check-up on Monday, he weighed 11 lbs, 11 oz which is the 25tn percentile for his adjusted age (3 months).

Ambrose weighs 9 lbs, 14 oz which is less than 5th percentile, but he is gaining weight. Both twins are 23" long. Ambrose is still at 1/4 lmp of oxygen, but sating in the high 90s. We're giving him a break from the oral feedings until we can wean him from the oxygen. In the meantime, he takes 10mL thickened milk from a bottle once or twice a day just so he doesn't forget how to swallow. In 3 weeks, his hip will be re-examined by the orthopedic to see if the Pavlick harness is doing it's job. Ambrose qualifies for benefits with the AZ Early Intervention Program. They determined he has a 25-50% delay in several developmental areas. These are all because of his medical issues, and will resolve once his health improves, but it qualifies him for PT OT and speech therapy.

Saturday, August 1, we took Ambrose to a miracle healing service led by Damian Stayne. His ministry boasts over 30,000 healings in the last 5 years alone. Although Ambrose, and Charlie for that matter, are already miracle babies, we thought it was worth a shot if we could get just one more for his lungs or hip or swallow. But at the same time, these are all things that can be cured naturaly or from therapy, and don't require a miracle. We are greateful for that much.

The boys are looking forward to a visit from one of their NyICU nurses; Nurse Becky is comig over for a visit.

-Gina

Happy Birthday, Josef!

Josef turns 2 today! We celebrated with friends and family at Peter Piper Pizza yesterday.

Ambrose Returns Home

After his urine culture returned negative for a UTI, Ambrose was discharged from the hospital late Wednesday. We're happy to have the cute little boy home again with us.

UTI

Yesterday, instead of discharging Ambrose, the doctor was going to treat him for a urinary tract infection. His urine sample from Saturday had come back positive with thousands of colonies of bacteria; this was not surprising because on Saturday the ER staff was unable to catheterize Ambrose after two attempts, so they taped a plastic bag around him which contaminated the sample which they then sent off to the lab. So yesterday the doctor wanted a clean sample so he can narrow down which strain of bacteria to treat with IV antibiotics. I watched in horror while the nurses literally "tag-teamed" Ambrose in 7 unsuccessful attempts to start an IV line, and three failed attempts for a catheter, the last of which drew blood.

Well, that was my limit. Momma Bear had to protect her little cub. I told them I was not going to allow them to poke his little veins anymore, they could treat him orally or with an intramuscular antibiotic. I also decided that he was going to pee in a cup the old fashioned way, even if I had to wait all day for it. I just had to wait a few minutes after his next feed and promptly handed the specimen over to the nurse who gave him a one-time dose of the IM antibiotic.

Overall, we have not been satisfied with the care Ambrose has received during this stay. Pediatrics is a world away from Neonatal, it has a very "do-it-yourself" feel to it, and it seems as though the right hand doesn't know what the left hand is doing. I've taught myself how to use their enteral pump, because it doesn't appear the nurses intend to keep his feeding schedule. His plan of care changes as often as the attending staff. We are having to be very vigilant as Ambrose cannot be left alone, because it seems the nursing staff only monitors him electronically from the nurses station. The other day as Ryan re-entered the unit after a quick trip to the lobby he could hear Ambrose screaming and his monitor alarming practically from the elevator. One of Ambrose's nurses happened to be passing by the room and casually pointed out to Ryan, "I think that's your baby crying." He wanted to respond, "When I tell you that I'm leaving the floor, that makes him your baby!"

Happily, I have a wonderful mother-in-law who is keeping the rest of our brood so I can hover over Ambrose 24/7. And he has had lots of visitors from the Nursery ICU, including all of his doting primaries.

We also got the results of the hip ultrasound from Friday, which showed that Ambrose suffers from hip dysplasia on his right side, possibly because he was in a breech position in utero. Treatment for this is simply to wear what is called a Wheaton-Pavlik harness for three weeks, which will hold the legs in a position which should correct the joint. It's super dorky looking but has already provided some comfort. Charlie will be checked out too, because Ambrose doesn't want to wear a goofy looking harness all by himself.

UPDATE 4pm

Ambrose has received a second shot of the antibiotic today to cover him for the next 24 hours. In that time the urine culture will complete its 48 hours growth. So far the culture is negative, but if it becomes positive, he will get a renal ultrasound, which is routine for very young people with UTIs. If the ultrasound is normal, he can discharge on oral antibiotics as early as tomorrow night and follow up with his pediatrician. If the culture remains negative until tomorrow night, we will still have no idea why we are here, and he will in effect have been treated for nothing, but he will discharge home anyway on whatever O2 liter flow he requires, right now he's at 1/4l.

A Little Better Today

Ambrose did well overnight on 1/2 L of O2. Today he was weaned to 1/4 L and was his usual charming self, but his doctor wants him to stay another night for observation. He's not being treated for anything, and he can come home with the increased O2 liter flow, but the doctor wants to wait for the results from his blood culture. Most likely Ambrose will be discharged in the morning.