Wednesday, December 30, 2009

One year ago PDA ligation



One year ago today Jordan had her surgery (PDA ligation). This was a very scary and emotional day for Troy and I. To see your 10 day old baby go through something like this was very heart wrenching. This was just the start of Jordan's fight to survive. When you look at her now you would never know that she spent her first few weeks of her life fighting for her life.

What Is Patent Ductus Arteriosus?

Patent ductus arteriosus (PDA) is a heart problem that occurs soon after birth in some babies. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart.

Before birth, the two major arteries—the aorta and the pulmonary (PULL-mun-ary) artery—are connected by a blood vessel called the ductus arteriosus. This vessel is an essential part of fetal blood circulation.

Within minutes or up to a few days after birth, the vessel is supposed to close 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 oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can put strain on the heart and increase blood pressure in the lung arteries.

Sunday, December 27, 2009

Merry Christmas

One year ago today I held my Jordan for the first time. Felt so good!
Almost crawling. You can do it Rylee!
Jordan's new trick.
Look at all these toys! Spoiled rotten!

Nap time!


Jordan is exhausted opening all the presents.
Rylee loved opening all the presents. Maybe it was the paper.

All I want for Christmas is a pony!

Wake up Rylee it is time for presents.
A white Christmas
This is where you will find Maddie when it is feeding time.


We have been stuck in our house for the last three days because of all the snow. All of our family Christmas celebrations were even postponed until today. We decided to keep both girls in for the day because of all the snow and colds and flu that is still going around. The girls had a great time opening presents Christmas Day. We enjoyed every minute of watching them play with their new toys. The toys are really keeping them entertained. Jordan is finally holding her bottle for part of her feedings. She has started kissing her babies and it just melts my heart every time I see her do this. I have been trying to feed her more table food and it isn't going too well. She just sticks her tongue out and won't let anything come near her. She does really well with the baby food so we will just keep working on it. Rylee loves all the table food, but it has to be pretty processed or she will gag. She has puked a few times because she gets to gagging too much. One year ago today I got to hold Jordan for the first time. Little did I know that this would be the last day that I got to hold her for over three weeks as she was placed on the oscilator ventilator and we were unable to hold her. I will cherish those moments with her forever. It felt like I was holding a kitten when the nurse placed her on my chest. Okay sleeping is not going so well for Jordan. Any advice? We have tried the cry it out method and it is not going so well. She will wake up every hour and want to be held. Needless to say we are exhausted. Here is the update from one year ago today:

Rylee: Last round of medicine to close the PDA valve. Utltrasound Monday to see if it worked. Very peaceful day for her. A lot of sleeping.

Jordan: Starting to get some of mom's "milk". About 2 ml every 3 hours. She is doing well with that. Her umbilical IV came out last night. They usually last 7 - 10 days. Since that came out, Kari got to hold her today (pics). They cuddled for about an hour. Daddy's turn tomorrow. Nothing else planned for her today.



Please keep our day nurse in your thoughts and prayers as she just lost her sister on Christmas Day. Fortunately Troy is off from school until 1/5/10 so he will be spending alot of time with the girls.

Thursday, December 24, 2009

1 year video

Here is a video that Troy made from some of our pictures from their 1st year.


video

Wednesday, December 23, 2009

Happy 1st Birthday Jordan and Rylee
























Sorry I am just getting around to posting pictures from their 1st Birthday. Life with two 1 year olds is extremely busy or maybe it is just that I am too busy playing with all their new toys. We are so proud of these little miracles and are loving every minute of them. We had a great birthday celebration. Thanks to everyone that helped with getting the cakes and food prepared for this special day. The girls were a bit overwhelmed with all the people, but handled it better than I expected. Rylee was really tired so she had some moments that she wanted to just be held and put to sleep. Rylee won the prize for the messiest cake that is for sure. Neither one of them put much into their mouth, but they did enjoy their first cake. I am still in shock that the girls are now one. Thank you to everyone that has supported us through this year. Tiny K was here on Tuesday and had nothing but good things to say about the girls. Jordan will be walking within a few weeks and Rylee is almost crawling. She is up on all fours and rocking back and forth. Rylee impressed them with her eating ability. She took some of her yogurt juice from a bottle and did very well picking up her snacks and eating them. They want us to start feeding them more table food so we are working on that. Rylee is doing better with it than Jordan is so far. Tiny K will be back in two weeks to go over our IEP's and so far Jordan has mastered all the goals that we initially set for her. The only one that she didn't master was the sleeping on the back, but there is not much we can do about it now. Rylee is still doing very well with everything besides taking her liquids by mouth. Tiny K reminded me that the girls are only 8 months adjusted so doing very well for what they have been through. We are going to try Rylee's PMV (speaking valve) today as it has been a week since her bronch. Hopefully she can get some air up through her vocal cords now that they doctor stretched her airway out a bit. I think we are going to enjoy spending Christmas at home with our girls as the weather is not looking too good right now. Today is our fourth wedding anniversary so we are going to go enjoy dinner and a movie tonight. Our night nurse is coming three hours early so we can enjoy our evening out. Last year we spent our 3rd Anniversary in the hospital so we are going to enjoy this one out on the town.

Friday, December 18, 2009

Rylee's Bronchoscopy






Rylee had her bronchoscopy on Wednesday afternoon as scheduled. It was pretty hard handing her off to a nurse and we went on our way to the waiting room. Unfortunately we didn't get very good news about her airway. The doctor found some webbing (scarring) around her vocal cords. She tried to remove this scar tissue, but didn't get the results she was wanting. We are going to go back for another bronchoscopy on 1/21/10 to see if anything further has happened and the doctor is getting a new piece of equipment that may help her get her airway opened up. When her trach was placed her subglottic stenosis was a grade 1 or 2. It is now a grade 3 which means her airway is 90% blocked. We are hopeful that the doctor is able to get some results with this next bronchoscopy in January. If this is not successful she will require reconstructive surgery of her airway sometime this spring or summer. I handled this news better than I thought I would. It helped that the OR nurse called us to tell us that the doctor found something and that they were working on it. At that time I knew it probably wasn't going to be good news. Rylee showed the recovery nurses what she was all about. She required some CPAP (ventilator) when she was done with surgery and she was not enjoying it too much. They even called me in the waiting room to see what would calm her down. They ended up letting me go up to the recovery room that parents are not allowed in to help with her. She had a hard time keeping her oxygen level up so we almost had to stay the night. The doctor came by and felt comfortable with Troy and I taking her home so we were released by 6:00 p.m. She had a pre-op appointment on Tuesday and weighed 16 pounds 12 ounces and is almost 26 1/2 inches. We are still hoping and praying that she will not require surgery in order to get her trach removed. We are going to put this news behind us and enjoy our miracles 1st Birthday on Sunday.

Sunday, December 13, 2009

Santa









Rylee has been holding her hands like this alot lately. So cute!
These pretzels are making me thirsty. Still working on the bottle. She doesn't really eat the liquorish or pretzels. We are giving it to help with her oral stimulation.



She likes to blow bubbles when her PMV is on.


Santa Claus came to visit the girls yesterday! I was worried that they would get upset, but they both seemed very interested in him. Jordan hid under the coffee table for a few minutes and then the pictures began. I took Jordan to the doctor on Thursday and her double ear infection is healed up. This doesn't explain why she is waking up every 30 minutes during the night! I am feeling a bit exhausted. We did let her cry it out last night and she would go back to sleep after 10 minutes. It was very hard to not get up and go get her. I think the night nurse had a hard time as well. She wasn't too upset so hopefully this week gets better. We got a new night nurse this past week and so far she is working out great. We actually had coverage last night so I could go out with my best friends. I left daddy at home all day with the girls and everyone is still in one piece. One week until the big first birthday. I am very excited to celebrate the big day next weekend. Rylee has a big week this week. She has a scheduled bronchoscopy on Wednesday afternoon. They will put her under anesthesia and scope her airway. This will tell us which way things are going. We should know if she is going to get her trach removed this summer of if she will require surgery to get it removed. The surgery is a very major surgery so we are praying she doesn't need it. I am very anxious for this bronch. I would be lying if I said that it wasn't stressful. I know that Rylee is here because of the trach and despite of everything, she is very happy. The trach will come out when she is good and ready and we can't stop living because of it. We will update as soon as we get a chance on Wednesday with the outcome of the bronch. I know I don't even have to ask but please keep Rylee in your prayers on Wednesday. We should be able to come home four hours after the procedure, but if it doesn't get started until late we might be staying over night.