Brogan home with Oxygen

I was so relieved to bring my new baby home. I then realized how short 7 feet is. That's the length of the tubing attached to his oxygen bottle. So you can only move 7 feet in any direction with the baby. Adults get 50 feet of hose, but babies only get 7 feet.

In my case, that meant I could only move from the changing table to the bed and over to the computer - which is all in the same room.

Not ONLY was he attached to his oxygen tank, he also has his Oximeter lead on his foot. This measures the baby's oxygen level and heart rate. If these drop below a certain mark, a very loud obnoxious alarm sounds. So at 1:30 in the morning when he kicks and the lead slips or breaks it's connection momentarily, we're all awake trying to shut that darned alarm off! Even Audrey learned how to reset the machine's alarms.

We did have a portable oxygen system, so I would ask Dusty to "make the baby portable", so we could at least go into the living room. Otherwise, I felt pretty much trapped in our bedroom.

I was so happy after about two weeks of this, when we took Brogan to Mary Bridge Children's hospital for his appointment with the respiratory specialist and were told that he didn't need to be on the oxygen during the daytime anymore. About a week after that, he didn't need to be on it at night either. We still used the Oximeter to check his levels from time to time, but he's been a ok since then.

Audrey and Brogan, 5/26/2008

Young Folks

Brogan's song - the drummer has an Incredible Hulk t-shirt on! I sang/hummed this song to Brogan while I was pregnant with him, but had never seen the video. Funny thing is, we called him the Incredible Hulk because he used to push so hard! His first toy in the NICU was an Incredible Hulk truck.

A fighter

Oxygen, tube feedings, I.V., all kinds of tests. Brogan was in the NICU for 2 weeks. I know a lot of other babies spend longer, but any amount of time in the nursery is tough on the parents and the baby. It is a shock to see your little baby hooked up to all sorts of machines. When Dusty took Audrey to see him for the first time, he told me that she was speechless. Audrey is NEVER speechless. It's a shock for a big sister to see her little baby brother that way. We explained what all of the wires did. The ones connected to him for testing, and the oxygen hoses and the I.V. She understood right away, but still was very concerned for her brother.

She also knew that those nurses were "awesome terrific" and they were taking care of HER brother. She really loved the nurses and wanted to make sure she got to visit Brogan every day when he was in the hospital.

It was hard for Audrey, but thank goodness for my mom. She came to stay with us and took care of Audrey the entire time. It was a wonderful bonding time for the two of them since they've never gotten to spend so much time together before.

I held him for his feedings, even when they were tube feedings. Some of my notes from the nursey days:

• 5/6/2008 - Oxygen in nursery, IV, worried mom and dad


• 5/7/2008 - ok without oxygen and eating formula from a bottle


• 5/8/2008 - Pooped all over nurses & spit up too! Doing lots better! Doc ordering chromosome tests, should get results by Saturday. Jaundice treatment with lights and baby shades. Eating mommy milk and formula mixed. I am pumping. Ate about 20ml at a time every 3 hours. 38 ml at 2pm feedingHeart scan - talk to doc tomorrow. Tube feeding - yuk, he fought the nurse and dad almost cried. He cried. 5 & 8 am feedings.


• 5/9/2008 - Making lots of milk. Brogan is eating well but still gets tired and finishes off feedings with the tube. Lots of tests today, blood work, heart scan; small hole in heart but not symptomatic. IV Taken out! He's so happy to have his arm back! Lots more awake now when we visit him in the nursery. Feeding well but still gets tired and DeSats.

The nurses all love him because he is such a fighter.

• 5-10/2008 - Saturday - We've got a stockpile of mommy milk in the NICU freezer now. Breathing is still "see saw" - want to find nurse and get more info today. Brogan really knows Dusty's voice. He turned his head toward him with his eyes wide and just looked at him. So sweet! Down to one Bili light now. His eyes are still pretty yellow from the jaundice.
• Saturday afternoon - no more Billi light! Brogan's temperature is good so he's graduated to a crib and CLOTHES! That's a big step. We tried breast feeding at 11:00 & 2:00 feedings, but he was tired. He had a good latch on but didn't last long. I'm hoping he's more awake at the 5:00 feeding. Dusty put the Incredible Hulk monster truck in the crib, he's our little Hulk. Since before he was born he'd been so strong I joked that he was the incredible hulk and going to rip out of me like the hulk did his clothes!
• 5-11-2008 - Mother's day. I let the nurses feed Brogan at the 2 am and 5 am feedings so I could get some sleep. Dusty went home to take care of Audrey. Her and grandma are doing well, but she's getting away with murder. Today was my best mother's day ever. Brogan is eating well from the bottle finally and we had a visit from Grandma, Aunt Connie, Audrey and Dusty. Then they all took me out shopping for baby clothes - premie size!
• 5-12-2008 - Monday - 6 Days Old! Hoping to talk to doctors today. Found Brogan's song - Young Folks. Brogan has oxygen back in the afternoon. His Sat levels have been down during feedings. Brogan has a project linus quilt in his crib. Those are made by a group of ladies that my grandma belongs to. They make quilts for all kinds of children.
• 5-13-2008 - Tuesday - Dusty's birthday. Doctor Leung is finally in today. We're still waiting for an update on all of his tests and have lots of questions. We had a real shock when the doctor told us Brogan tested positive for Down Syndrome. I cried and felt so worried about my baby and his health, his life. I just held him closer and hugged him and tried to pour all of my love into him as a promise that we would take care of him and he would live, and live a good life no matter what it took. Dusty took it so very hard too. He's so worried about losing his beloved son to an illness after the elation of finally having a son. Thank goodness our family has been around to help us through this part of finding out.
• 5-14-2008 - Wednesday - The feeding tube is OUT! We worked hard all night and day to get the required 8 bottle feedings in so they would take that tube out. YaY! He's still using the oxygen, but is feeding well.
• 5-15-2008 - Thursday - Worried about chest X-ray - Brogan's lungs are still cloudy. Doctor Leung called it pulmonary lymphoma disease. They are telling us that we can take him home on Monday! With oxygen, but he will be home!
• 5-16-2008- Friday - I spent a lot of time in the nursery cuddling with Brogan today. I've got the run of the NICU - where the dirty and clean linens are, what to do with dirty clothes, where to find bottles and nipples. They're all pretty impressed and have just let me take care of my baby, which I insist on. I feel robbed if someone else has come in and taken care of him before I get there.
• 5-17-2008 - Saturday - Big sister came to visit again and then we went shopping for a Basinnette. Can't wait to get our baby home.
• 5-18-2008 - Sunday - One more day! Brogan has been awake and ready to eat every time I visit the nursery. Dusty has his bed all set up and ready.
• 5-19-2008 - Monday - Home! After a long long wait for the Oxygen company to get us set up to go home, we finally have our whole family together to relax. Before leaving, we got Brogan's baby pictures done, and he looked so cute in his outfit that Donna (nurse) kept him dressed up to show off to all the other nurses when they came in. He's our handsome devil!
• WOW - when we counted all of the bottles of surplus milk we brought home from the hospital - we had 45 4oz bottles! Holy cow!

Our baby boy!

Tiny little guy - the fault of what doctors call AMA - an acronym for Advanced Maternal Age. Sounds like his mom is 90 years old or something, when I'm only 43!

Brogan T.R. Ashley is a beautiful baby boy! Beautiful hardly describes him, he is an Angel.