Friday, Dec 28

We've had a couple of busy days. Yesterday, Addison went for her first checkup with the doctor. Her weight is where it should be, she is eating more and more, although not always nursing from Rach. The final results from the chromosome testing have not come back yet, so we are still waiting to hear what type of DS she has.

Although the Jumper family left on Wednesday morning, the Taylor family arrived on Thursday afternoon. While there are a few family members that Addison has not had the pleasure of meeting, she has met most of her family now, even a couple of her cousins. We have a handful of pictures to show you, but most of them are on other cameras, so we will have to update most of the pictures tomorrow or Sunday.

Thanks to those of you who are keeping us in your prayers. We are certainly making progress, but Addison still has a ways to go before she can complete a feeding with Rach, so please keep praying. Other than that, I think she's going to make it. She keeps eating, sleeping, and I think I changed a diaper that was about half of Addison's weight, so we know her plumbing is working well. I guess that means she's going to make it.

Tuesday, Dec 25

Well, for those of you who had the impression that Addison is a great sleeper, I've been up with her all night. I'd like to think that it's a fluke, but she is a baby after all. Hopefully, she doesn't have her nights and days mixed up and we can remedy this quickly, as in right now. Rachel's parents are leaving today, but my family is coming into town on Thursday, so we will still have a full house.

On Thursday, we have a doctor's appointment at 11:30. It's the first checkup since we've been out of the hospital, so we are interested to see how it pans out. Hopefully, we can get the rest of the results from the chromosome testing and find out which type of DS Addison has. This is somewhat significant because it can help us figure out what we will be dealing with in the future, and if other people in our family line will have to deal with this situation down the road.

Addison is looking more and more like a little person each day. I know it's only been two weeks, but she's growing like a weed, and we're just trying to keep up. If anyone has any ideas on how to produce more milk, we are happy to hear from you. Anything short of purchasing our own pet cow is an acceptable piece of information. This kid eats like there is no tomorrow. On that note, check out the picture. She's a cute baby, but you should see the tail end of this face!!!

Thursday, Dec 20 continued

Thank you all for your support. Addison came into the world last Thursday, and finally, she's home with us for good. I have to admit that placing Addison into that car seat and walking through the halls to the car was a little emotional for me. We had been through so much the past week and I was soooo relieved to get out of there that I had a tear or two working. What can I say, I have a daughter now. People have said that she's going to have me wrapped around her little fingers before I know it. I used to think it wouldn't be that bad. Ignorance is bliss they say.



Although we feel like we have crossed the finish line by leaving the hospital, the truth is, we've just started. We have several doctor's appointments over the next few weeks. We have the pediatric cardiologist to follow up on the heart situation. Right now, there is no heart situation, but we just have to make sure. There is also a pediatrician here in Tulsa that works only with children with special needs, and since Addison has officially be diagnosed with Down Syndrome, we will become a patient of his as well. There is a program here called Sooner Start for all of you O.U. fans out there. They work with babies with down syndrome on many levels giving advice and help with education, physical therapy, speech therapy, and many other things. I think Rach and I are going to take a couple of weeks to try to get to know Addison a little bit before we dive too much into this stuff, but we will be getting involved pretty soon. If anyone knows of people who are in our shoes, we would love to hear from them. Any advice from those of you who have children would be warmly welcome. Obviously, we have much to learn as new parents, but if you have any tips to help us with the learning curve, we'll take them. Rach is pretty much a natural, so she might not need much, but I'll take what I can get.

Thursday, Dec 20

WE ARE HOME!!!!

Today at 2:30, the doctors allowed us to leave the hospital with Addison. After the pep talk we gave her last night, I think she realized that she had it in her to get out, so she made sure the sleep study went well. Please check back later to hear the details, as there are lots to share. Talk to you later tonight.

Wednesday, Dec 19

We had a good, productive day today. First of all, Addison has now met all of her grandparents. Grammy and Grandpa Taylor as well as Grans and Grandaddy Jumper are all here and ready to jump into action and use their special grandparent powers to do whatever is necessary for the girl. We will be using them for their "crying baby silencing" abilities, and their unique holding and kissing techniques to ensure that the kid will not have to go a single fraction of a second without receiving some kind of loving from someone in our house. We have also received special appearances from my sister and Rach's younger brother. Both of them are vying for the "favorite aunt/uncle" position, but we won't know who wins for sure for several years, so best of luck to the both of them and each of her other aunts and uncles.

We had seven different types of medical professionals meet with us all at once at our pow wow today, and we couldn't be happier with the results. At first, I kept thinking of the saying "how many monkeys does it take to...", but as the conversation progressed, I realized that we were having a productive conversation about what we needed Addison to accomplish for her to go home with us on Thursday. I can't even begin to describe how much stress has been lifted from our shoulders now that we know we are all on the same page. One of the concerns the doctors have is that Addison's oxygen saturation drops when she is sleeping at night. This is actually a common thing that happens to everyone, but considering her low muscle tone and the infection that she had to fight through, they just want to make sure she's good to go. So, tonight Addison is undergoing a sleep study to make sure that her oxygen saturation doesn't fall too low, and is still in an acceptable range. When oxygen drops too low, bad things happen, so we are happy that we are doing this now. The only other concern we have at this point is Addison's feeding. Again, because of her low muscle tone, due to her having down syndrome, sometimes she has a difficult time feeding. So, we need to make sure that there is a solid 24 hour period when she feeds well every time she eats. So far, so good. Addison is still having difficulty nursing from Rach, but the speech pathologist seems confident that as her muscles get stronger, this won't be an issue. She just needs a little more time to develop. She says the best way to build your suck-draw-swallow muscles is to suck-draw-swallow. Since Addison eats about a million times a day, I'm confident it won't take her too long to get this going.

The doctor says that as long as Addison accomplishes all of the above, she can come home with us tomorrow after her final dose of antibiotics. We are hoping for a 4:00 discharge, if not earlier. Just before Addison's sleep study began, we told her what she needed to accomplish so she can get out of the hospital tomorrow. Shortly thereafter, she slipped into her normal coma-like sleep to consider all that lies ahead. I've included a picture of her in deep thought for your reference. We will certainly let you know how she does tomorrow. We aren't out of the woods yet, but we are almost there.

Tuesday, Dec. 18

Today was a frustrating day as we started, but we've made some good progress, and it turned out to be a pretty nice day. The doctor called to inform us that the preliminary reading of the chromosome tests show a confirmation of Down Syndrome. We pretty much already knew that, so it wasn't a big shock. The final reading will show us the type, but won't tell us anything about the severity, so we'll just have to see how it pans out. From what we understand, the severity will become more clear as she reaches certain milestones. One day at a time though folks.

Addison has started to turn into an active baby today. She has started eating so much that Rachel is having a tough time keeping up. Up to this point, we've had some troubles not only with her getting the nutrition she needs, but the way we are providing that nutrition. Addison has had a great number of doctors and "consultants" see her, and they all have a different idea of how we should go about feeding her properly. So, Rach and I decided it was time to get all of these folks together and come up with a plan. There is one man who's going to make the decision to release Addison or keep her in the hospital on the 20th. Our goal is to get her home. So, we want every doctor and medical consultant who is meeting with us and working with Addison to know what we need to do in order to make that happen. Sometime after lunch on Wednesday, we are going to have that meeting, so please pray that the meeting goes well and everyone gets on the same page. The frustrating part has been the lack of communication between everyone. The encouraging part is that we have been able to set up this little pow wow. I think Rach is bringing the hammer to the meeting. I think it's awesome when she does that.

Rach and I are doing well. We are struggling to get the rest we need. I think I fell asleep standing up this morning, which I've never done before now, and I couldn't remember the term "sleep deprivation", which probably means that I have a case of it. Neither of us has had a meltdown yet, so we have that going for us. I guess this is all part of what we signed up for when we decided to have kids. And to think that we will have three more after Addison. YIKES!!! Keep praying for us. We need it.

Several people today have said that they love Addison's cheeks and they want to just chew them up. I'm pretty sure that's a good thing. So I've posted a couple of pics for your chewing pleasure. Enjoy!

Monday, Dec 17th

We are still making progress. This morning around 3 am, we went up to feed Addison, and the nurse said we could feed her on our own schedule, meaning as long as she wanted to eat, we could feed her. However, the doctor said today that he might want to put her on a feeding tube again because he doesn't think the feedings are going very well. So, a few mixed messages later, and Rach is back to feeding her every three hours. A little side note: Doctors are smart, but they often forget to use manners and interrupt people when they talk. If you ever go to the hospital, make sure they treat you as a patient, not as a number. I wanted to smack our doc today, but we are making progress.

The good news is that Addison doesn't need the breathing tube any longer, and her umbilical cord fell off today. The little anti-theft device was connected to the umbilical cord, so we had to call in the infantry for temporary backup support to make sure no one kidnapped Addison before they provided the ankle bracelet for protection. So, we're still taking things one day at a time. As long as Addison doesn't backtrack on her progress, they say we can probably take her home on the 20th!

If you haven't come to visit, we'd love to see you. Rach and I have been discharged from the hospital, so when you get here, just find the "Special Care Nursery" on the 6th floor and tell them you are there for Addison, Rachel and Wes. If we aren't in the nursery, they will call us. We're probably just around the corner.

Sunday, Dec 16

Addison was jaundiced and started on the tanning bed. Great pics on that by the way. She will be done with that tomorrow. They increased her feedings again and decreased her oxygen to 25%. We breathe 21% oxygen, so they are going to try and get her off the oxygen again tomorrow. Her blood counts are pretty much normal, which means the infection is going away. She's been lazy with her feeding. She likes the feeling of being in her mother's arms so much that she forgets to suck and falls asleep. Rach trully has a relaxing mother's touch. Her I.V. wasn't working out so well, it was leaking into her hand, so they moved it from her arm to her head. Of course, this makes her look a bit like a unicorn. Again, great pics. Thanks to the folks who have visited us. It makes us feel loved. If you are wondering if you should leave us alone and let us sleep, please decide to come visit. It seems we have forgotten what sleep is and can't seem to get any of it accomplished, so the company is most certainly welcome all hours of the day.

The parent room is awesome. It's like a room in the Ritz Carlton. Well, more like the closet at the Ritz, with a lavy with luke-warm water. But, it's only moments away from our beautiful little daughter, so we are pretty amped about that. Enjoy the pictures if you can see them.

Saturday, Dec 15

Today was a big day for us. Addison started feeding on her own from a bottle around 2:00 am and has eaten every ounce of food we've given her since then. This afternoon, she started breast feeding with Rachel and picked it up like she had been doing it for years! She's eating so much that they pulled the feeding tube out of her tummy. They dropped the oxygen levels that she is breathing, which means her lungs are getting stronger and healthier, and they pulled the continuous fluids from the I.V. She is still getting antibiotics through the I.V. and will be receiving them until the 20th at least. She is jaundiced, so she is laying under what most people would consider to be a tanning bed, so she will come home looking like she's been on the beach for a week.

Rach and I are being discharged from the hospital tonight, but we have a beautifully equipped parent room complete with a twin bed, a fold-out cot, and a shower that might have warm running water. All for the price of $25 /night. What a deal! One of the doctors here said that "the room is great...because it's close." Since Rach is on strict orders to breast feed every three hours, that will certainly be helpful. More to come...

Friday, December 14th

Thanks for joining us. Here's the update on Addison. She was born on Thursday the 13th at 3:05 a.m. 7 lb, 14 oz. On her way out, she inhaled amniotic fluid that contained meconium (she pooped in the womb, and then inhaled it. Not recomended for most people). As a result, she has an infection in her lungs that is requiring her to be on oxygen to breathe. She will be in the hospital on antibiotics until at least the 20th. She also has several physical features that suggest that she has Down Syndrome, including being unable to nurse, so she has a nasal feeding tube to her stomach. We finally got to hold her late last night and that made a huge difference.

One of the most concerning complications associated with Down Syndrome is cardiac problems, but her echocardiogram shows no abnormalities. So, that is quite relieving to hear. She has a curly dark mohawk and big cheeks, to boot. I think she's adorable, but then again, I'm her daddy. Rachel and I are being discharged from the hospital tomorrow, but we can rent a room accross the street until Addison is ready to come home. More to come...