Monday, May 28, 2007

3 Weeks

It's Monday May 28, 2007 and our second daughter, Bailey, is 3 weeks old. This has probably been the longest 3 weeks of my life. My husband and I arrived at the hospital on May 7th for our scheduled cesarean. I arrived to an empty room after recovery. My husband, our parents, and our other daughter were in the cafeteria eating and Bailey was in the nursery. About five minutes after arriving in the room our pediatrician came in and informed me that several doctors and nurses feel our daughter may have Down syndrome. I, of course, didn't feel this was true because I had the triple screen and ultrasounds. My obstetrician said they were normal. So how could this be true? The pediatrician told me he did blood work and we'd get the results in a few days. Soon after I was able to hold my beautiful little girl and start the bonding process, which was very easy. On May 8th the pediatrician once again returned to my room. He said that he hears a murmur and that he would like to do an echo cardiogram. He said if Bailey has a heart defect they would send a cardiologist in to talk to us. A few hours later the cardiologist arrived in the room and said Bailey has AV Canal defect. My heart dropped. Once again I am alone in the room and getting results that will change my life forever. On May 10th my daughter and I were released from the hospital. Finally I could go home to my husband and our other daughter Aubrey. It was nice to be together as a family. Bailey was eating well, but still wasn't eating as much as Aubrey did when she was first born. We has an appointment on the 11th with our pediatrician. He was concerned with Bailey's respiratory rate and sent her for a chest x-ray. Thankfully things were changing for the better because her chest x-ray was normal. I finally felt we were going to stop getting bad news. On the 14th we had a follow-up appointment and her respiratory rate was much better, her color was better, and overall she looked good. We still had an issue with feeding, but the doctor increased the amount of calories per ounce and asked that we come back in a few days. On the 17th we returned to the doctor and Bailey was finally eating 15 oz of formula per day and she had gained 3 ounces. It was time to celebrate! He said we could wait 2 weeks before we had to come back. Finally, I can start my Down syndrome research and contact the early start program to get information on therapies. The following day Bailey had her 11:00pm feeding and went to sleep. We would wake her every 3 hours, but she refused to eat. The following morning we called the pediatrician and never received a return call. Finally, at noon, we decided to go to the ER. We took Aubrey to her grandparents house and arrived at the ER soon after. When we arrived they took Bailey back immediately. Within minutes she was surrounded by doctors and nurses. We were terrified. Was she even going to survive? All we could get from the doctor was that Bailey was very sick, but what was wrong? We were told earlier in the week about congestive heart failure, but this isn't what they described. Finally, we were told it was congestive heart failure. I guess I now know what to look for. Once stabilized, Bailey was flown to the children's hospital in Tampa. The doctors at the children's hospital said they would treat her with medication, and hopefully she'll be sent home in a few days. Bailey didn't recover as quickly as they hoped so on the 24th of May the doctors did a catheterization. It was then that they realized she also had another problem with her heart so the following day they did a PDA ligation. She has since been on a ventilator. We're not sure what will happen now, but we're hoping she will soon be removed from the ventilator, eating well, and going home.

Still Needing Assistance

Another chest x-ray again and things are still looking the same. Maybe we'll be home in another week. They still have her on the ventilator, but the plan is to get her off it tomorrow.

Sunday, May 27, 2007

I Miss...

They did another chest x-ray today and things are still looking okay. It's hard to believe we've been here for a week already. We're here day and night and it's beginning to take it's toll. The staff here is amazing, but I still miss being at home, and I miss Aubrey terribly! My parents are keeping her and they bring her to visit, but it's so hard to see her leave. I can't wait to get home and be a family again.

Saturday, May 26, 2007

Surgery is Complete

Bailey's surgery went well. The surgeon she had today will be the same surgeon that will do her open heart in a few months. They did another chest x-ray and ekg on her today and everything is looking okay. She is still on the ventilator, but hopefully she'll be off within a few days.

Friday, May 25, 2007

Surgery Tomorrow

Well they did the catheterization today and everything went well. It seems that Bailey has a PDA. This is information I received from the National Heart Lung and Blood institute.
Before birth, the two major arteries—the aorta and the pulmonary artery—are normally connected by a blood vessel called the ductus arteriosus, which is an essential part of the fetal circulation. After birth, the vessel is supposed to close within a few days as part of the normal changes occurring in the baby's circulation. In some babies, however, the ductus arteriosus remains open (patent). This opening allows blood to flow directly from the aorta into the pulmonary artery, which can put a strain on the heart and increase the blood pressure in the lung arteries.
So my shortened version, Bailey will have surgery tomorrow to correct this defect.
We were told that after the catheterization she would be removed from the ventilator, but when we arrived in the room she was still on it. That was a scary moment for me. I understand why she needs to be on it, but it's difficult to see 17 day old baby on one.

Thursday, May 24, 2007

Catheterization Tomorrow

Well she still isn't improving. One of the cardiologists at the hospital said they have decided to do a catheterization tomorrow. I've known adults that have had them, but I'm not sure how the procedure is handled with infants. We're told they will sedate her, put her on a ventilator, and do the procedure. They will not do any corrections however. If something needs to be done they will schedule it another day.

Wednesday, May 23, 2007

No Changes

They did another echo today and it still hasn't shown much improvement. If she doesn't improve soon they plan to do a catheterization on her. They said that she may have some additional problems other than the AV canal defect. Hopefully she improves quickly. I don't know how much more her little body can handle.

Monday, May 21, 2007

Test, Tests, and More Tests

They did another echo, chest x-ray, and more labs today. They get started early here. It seems like when you finally fall asleep someone is coming in the room. We're not able to close the door so all night we heard monitors beeping, nurses talking, and people walking by. We're still not sure what is going on with Bailey, but hopefully she'll show some improvement soon.

Sunday, May 20, 2007


Such a horrible day. I never imagined when Bailey wasn't eating last night that things would end up like this. We were up most of the night trying to get Bailey to eat. Keith and I would take turns, but nothing seemed to work. She just wasn't interested. We decided this morning to call the pediatrician, but we never received a return call. Finally, around noon we decided to take Bailey to the ER. Thinking it was something simple, like a bug, we took our time and took Aubrey to my parents. When we arrived at the ER they got her back pretty quick. We went to exam room 1 and soon after the doctor looked at her she was sent to the procedure room. We still had no clue what was going on. Keith and I stood in the hall and looked in the room as the hospital staff surrounded her little body. The doctor came out several times to tell us how sick Bailey is, but I didn't understand why. I also didn't want to ask questions because I wanted him to spend as much time with her and less time with us. The did several labs, an echo, an ekg, spinal tap, chest x-ray, and they put her on oxygen. They called her cardiologist to come see her and thankfully they didn't wait on him to start treating her. It seemed like it took him forever to get there. We were told that she went into heart failure and they wanted to air lift her to St. Joe's in Tampa. They got her stable and placed her in the helicopter. I make the drive to Tampa daily for work, but this trip seemed to take forever. When Bailey arrived at St. Joe's we received a call from the PICU nurse saying she arrived there and is doing well. We finally arrived and our little girl was getting several meds via IV and she was still on oxygen and hooked up to several monitors. We're allowed to spend the night here with her, so we plan to do that. Keith and I will split time between the recliner and glider, but I doubt either of us will get much sleep.
One last note, the ER staff at Lakeland Regional did an amazing job with her. We were very fortunate to have this staff care for Bailey. They seemed to do everything right.

Saturday, May 19, 2007

She Isn't Eating

Bailey hasn't been eating well tonight. She stopped taking a bottle earlier this evening and hasn't seem interested since. She still looks good so I'm not sure what's going on.

Friday, May 18, 2007

Trisomy 21

Today was another appointment with the pediatrician. At the time of the appointment there weren't results from the blood work. The appointment went well and she was still gaining weight. She's doing great with her bottle. After we got home the doctor called. I've never received a call from the doctor, it's always been a nurse or someone else in the office. I should have know it couldn't be good. He said that Bailey's results came back positive from Trisomy 21, so I guess our little girl has a little something extra. It, of course, was a tearful moment for me. I think I was still in denial, thankfully Keith had accepted it so he was so much help.

Tuesday, May 15, 2007

One Week Old

We saw the pediatrician again today and everything is going well. Still no results on the blood work, but she's gaining weight! That's what we want.

Saturday, May 12, 2007

She's Just so Beautiful

We saw the pediatrician today and the blood work still isn't in. I just don't see some of the things the doctors are showing us. Her eyes look normal, she does have a small gap between her toes, but some kids have that, right? Her ears are little, but she's a newborn. I guess we'll just have to continue to wait. Her pediatrician wants to continue watching her closely until her surgery. The plan is to see him every week or two. She needs to continue to gain weight, and get a little older so she can have a successful surgery. They did a chest x-ray today and it looked normal. Hopefully everything will be smooth sailing until surgery.

Friday, May 11, 2007

We're Home!

We get to go home today! Finally, we can take our baby girl home and be a family. This will be interesting... a newborn and a two year old. I think we were crazy thinking we could do this! Bailey is just so beautiful and looks a lot like Aubrey when she was born. We still don't have results from the blood work, but hopefully we'll have it before the week is over.

Wednesday, May 9, 2007


Today the cardiologist came in and said they heard a murmur and did an echo on Bailey. The echo shows that she has complete AV canal defect. This means that she'll have surgery when she is about 4 months old. We're not sure what all this means. I do know that children with Down syndrome often have this heart defect, so it is more likely that the blood tests will show that Bailey has Down syndrome.