Day 10 (9/30/08)

The surgeon's office called today. Surgery is scheduled for 10/27/08, four weeks from yesterday. She will be 6 weeks the Thursday after surgery. We are still waiting on the monitor and approval for the monitor. So sometime this week, she will come home. She has to go to her pediatrician within a day or two of discharge, and the cardiologist a week after discharge.

I was able to feed her twice today. She was kind of sleepy her first morning feedings, but very alert for the third feeding. When we left she was awake and content in her bassinet. She is getting annoyed at Mommy taking pictures, but she changes so much each day and I want to capture it. Grampy tried to protect her from Mommy's camera!

Her oxygen level is still fluctuating which is okay as long as it stays above 75%, which today it hit in the 90's for awhile even as high as 98%. Sometimes the sensors are sensitive and give false readings, and she still has not had any spells.

I think she is starting to realize who I am. She acts different when she sees me. Today it looked like she was trying to smile at me while drinking her bottle, but I think at this age they are supposedly too young to smile, unless in their sleep from gas. Hopefully she can come home soon so she can bond with her family. She is starting to bond with me and I try to hold her as much as possible even when sleeping for a bit because I am not with her for more than a few hours a day.

Day 9 (9/29/08)

They decided today that she needs to be sent home with a PulseOxy monitor, which will monitor her heart rate and oxygen saturation. Her insurance does not cover these unless it is medically necessary, and in her case it isn't according to them. To me, it doesn't make sense, seeing that her heart is having trouble with oxygenated and unoxygenated blood. This also is pushing off her discharge date by thee or four days, because I had to apply for the Children's Medical Services to cover the cost of the monitor before they can release her.

Her feeding have reduced slightly, she now averages 70-85 cc which is a little over two ounces to 2 1/2 ounces. She also has lost an ounce, which the nurse says it's okay for them to fluctuate slightly like that. Today after I feed her, I didn't get her to burp well, and she had her first big spit up all over me.

Tonight they had a cardiology conference so hopefully tomorrow I get to meet with the Cardiologist to see what they decided tonight. Other than that, we are just waiting for that service to go through, so we can get the monitor.

Day 8 (9/28/08)

Nothing real new today. She seems to be doing well with her medicine. It's called Digoxin and it is used for improving a weakened heart and to treat a fast heart beat. The nurse printed out some information for us to read about it.

John and his Mom came with me today. It was the first time John was able to see her, besides pictures, in almost a week, and the first time for his Mom since the day she was born. Daddy was also able to feed and hold her for the first time in over a week. Nana had lots of snuggle time too.

She continues to do well and her vitals remain good. She was alert for quite awhile today and was eating well. I tried to breast feed her, but she wouldn't latch on, so we opted for the bottle of breast milk. This way Daddy was able to feed her. We will try more when we get home, but more than likely I will continue to pump for her.

When I went to change her before her feed, she had a bm. Then after John feed her she had another. Then he left to find me, and she had one for his Mom. After I came back from pumping she had another for me, and a few minutes after I changed her, she had another one. It's not like we didn't wait a few minutes after she did to see if she was finished lol. I guess she just likes doing it in a fresh diaper. I hope this doesn't continue because we are going to go though diapers like crazy! She was changed five times in a little over an hour!

Day 7 (9/27/08)

Ashlyn's PDA is open only a tiny bit. Her IV was removed yesterday so all she has on is three sensors on her chest and two oxygen sensors on her feet. They were thinking about sending her home tomorrow, but if she needed a monitor it would be Monday. Then they decided to discuss her case in the Cardiology conference they have Monday nights, so it may be Tuesday. We are keeping our fingers crossed. I am not in a rush though, I want her to come home when they think she is ready.

Her vitals have all remained good. Her oxygen saturation was varying from 85% to 94% today when I was there. I was able to feed her soon after I got there. I held her for a while after and then went to eat and pump. It was about an hour later I came back and she was still up but quiet. So I held her and talked to her until she fell asleep. She definitely is more alert as each day passes. She is eating three ounces every 4-5 hours and sleeping for good chunks of time.

They put her on medicine today to help her breathing. I think it is called Liocin. I will learn more about it before she comes home. The medicine can be administered by adding it to her bottle or syringe to her mouth, but I think it will be easier to add to her bottle. They also want me to try putting her to breast, which probably will help regulate my milk supply. Currently I am getting about two ounces or more every three hours and she has 3 ounces every four hours, so it's almost enough, I just need to get on her schedule. We will see how it goes when we get home and if she latches, otherwise I will continue to pump for her and supplement formula when needed.

Tomorrow John and his Mom are going up with me. This will be the first time Daddy has seen her in almost a week! He will get to hold her and feed her too. When he was there last, we weren't able to yet. His Mom hasn't seen her since the day she was born, so she is excited too.

Thanks again for all the thoughts and prayers. Almost a week ago, I never thought we would be this close to coming home with her. I know we still have a long road ahead of us with her surgery, but at least we get to bond with her at home and she can be with her sisters and her family.

Day 6 Still looking good

Not a lot of news today. I met with her cardiologist, Dr Dadlani. He said her PDA is still open about 1mm so they are going to do another Echo tomorrow to see if it closed. More than likely she will not have to have surgery Tuesday. They are going to wait 4-6 weeks then. They are going to talk about her in the conference they have on Monday night. At this point, it shouldn't effect her aorta when it closes. It usually take 2-3 days to close and today was day 3.

She is also on what they call ad-lib feed, meaning she can eat as much as she wants, when she wants. Earlier, the neonatologist Dr. Germaine said she could eat 2 ounces every 3 hours or 3 ounces every 4 hours. Then Dr. Dadlani the cardiologist said she can ad-lib her feeds. We think they are doing this as a test because too much food can cause excess fluid in her lungs and cause her trouble, so they are doing it before she is discharged so we don't run into a problem at home.

I really am not nervous about her coming home before surgery, I know that they would not send her home if she wasn't strong enough to handle it. Dr. Dadlani said that we would treat her at home as a normal newborn. They can't wait like six months to do the surgery, but the 4-6 weeks would be beneficial.

I spoke with the nurse a little while ago. She went 5 hours from the feed I gave her at 12:30 and another 4 hours after that one. Eating more milk is definitely filling her up and helping her get more sleep. She is 4 grams shy of 8lbs, which is about an ounce a day growth since she arrived there. That is pretty close to what normal newborns gain. She also had a bath because she was sweaty, which could either be from normal heat from sleep or that cardiac babies tend to be more warm. The nurse Holly said she was pretty mad afterwards, because she just wanted to eat. She had definitely become a little piggy and loves her bottle. I am pumping, but right now they have to supplement with formula. I am not producing enough milk for her yet. The amount she drinks has jumped rapidly in the last few days and my supply has adjusted yet.

I spoke with the blood bank today and still need to make another phone call. They are unsure of how to go about receiving donations in her name that wouldn't be directly for her. We are pretty sure the surgery is going to be put off, and the blood she needs has to be less than 5 days old, so I am waiting to set it up. I will be in contact with them next week to see what we can do. The man I spoke with today thinks that they can accept donations in her name from anywhere, but they don't have a credit system set up. They may be able to set one up in this situation though. I will let you know when I know more about it. Thank you for all you interest in donating for Ashlyn!

Thanks again for all the support, prayers and thoughts. They continue to help her everyday and it is comforting to know how many people out there truly care, even the ones who don't know us personally. I never thought I would be going through something like this, and it is great knowing how much people care and want to help.

Day 5 (9/25/08) Looking up!

Today was a very promising day. She has been eating very well, 2 ounces each feeding and is much more content. She was quite alert during the feeding looking at me, Grampy and my sister Jodi. I spoke with the Cardiologist on call to find out the results of the Echo. So far it looks good, the arch (PDA) between the aorta and pulmonary artery is still open a little bit, but the aorta is not narrowing. It shouldn't narrow a significant amount before the PDA closes all the way. She did not expect them to do surgery Tuesday, but she isn't sure what her Cardiologist was thinking.

I called to check on her a little while ago. I was transferred about 8 times and started to get a little nervous. But it was a good thing. They had more babies arrive today and had to move someone up. From Pod 2 she was in the best shape and was bumped up to Pod 4! From the way the social worker Elaine described it this morning, they move up from Pod to Pod and after Pod 4, they moved up to the third floor NICU. This means they are closer to being discharged!

Her nurse Holly said she has been sleeping since she got there and was getting ready to feed her. She is going to read the Cardiology report more thoroughly and when I call later tonight she will give me more detail. Basically, she said they are probably going to do the surgery in 6-8 weeks. The arch (PDA) is still open but she said it opens and closes and as long as it doesn't cause her trouble, she will do okay. So far so good! She will come home before surgery and she said it may be as early as the beginning of next week! As long as she continues to eat well, urinate and have bm's, and her vitals remain good. She also said it was a good graduation from Pod 2 to Pod 4.

Things are definitely looking up and hopefully soon I get to take our baby girl home! I am also looking into the blood donation thing. My Mom thinks there is a way to donate in her name so she gets credit for it, regardless of your blood type or if they can use it for her. I know there are a lot of you locally and around the country who would be willing to donate for Ashlyn, and when I find out more information tomorrow. I will post it here.

Thanks for all your thoughts, prayers and support, she is improving each day. I would also like to add a special thanks to my best friend Jessica's work for their generous donations to help our family out. Thank you for helping in our time of need and as soon as I can I will send photos and a card to you all. I would also like to thank my parents for all they have done and are doing for us, and being there when I needed them most, not that I ever doubted they wouldn't. And Jessica, who truly is my best friend for many years who has stood by me through everything. I hope one day I can help you the way you help me. I love you all!