Good Night

Ryan had a good night. They cut the dose of prostins in half instead of turning it all the way off and have given him a couple of doses of a diuretic to help him get rid of some fluid that may be making it harder for his lungs to oxygenate his blood. Jason said they were planning to try stopping the prostins again today, so keep your fingers crossed. We want his heart as strong as possible for surgery. Jason and I are doing good, we have fallen into a little bit of a routine, I come in the morning and stay until late afternoon. Either Grandma or Grandpa comes to watch the boys so Jason can leave and go to work. He then comes after work so I can go home and be with the boys. Grandma is planning to take the older boys to our neighborhood garage sales today, so hopefully I don't go home to a house full of new "treasures".

News from Cardio

I finally actually talked to the nurse practioner from Cardio this afternoon. While they are still saying he doesn't need the prostins, they at least are conceding that turing them off completly does cause problems. She mentioned a couple of things we could try, cutting the dose in half and weaning him from the O2. She was going to coordinate with Neonatology. Tomorrow is the big day when they conference on their pending cases and hopefully set a date for surgery. The nurse today said we could expect 2-3 weeks recovery in the hospital after the surgery. I just talked to Jason and he said Ryan had a really good night. He had a good day as well, Grandma came up and got to hold him. She was a little nervous, but got used to it pretty quick of course.

Not so fast

Spoke a little to soon about getting off the prostins. Although the O2 helped a little, he still needed to start back up again at 2 this morning. At least now it seems like cardiology does agree that he has some need for that little extra bit of mixing the prostins allow him to maintain. They are planning to do a repeat echocardiogram (ultrasound of the heart) and hopefully make a plan from there. They will still discuss his case at conference tomorrow. In other news, he is completly off IV nutrition and up to about 2 ounces of breast milk per feeding. He has never had any problems with food, not surprising for one of my babies.

He continues to be plauged by name mistakes. The labels they have printed for me to label his bottles of milk have the St in Stratman cut off and they are printed in all caps, so it appears as if his name is Ryan Ratman.

Much better today

Although I was scared to death about stopping the Prostins again, he is doing much better tonight. The extra O2 must be helping because his O2 levels remain in the 70 which is where the want them to be. This is good news because being off the meds is apparently the most important precursor to surgery. Now it is just a matter of waiting for Friday's conference to get a surgery date and hoping he continues to do well without the Prostins.

A couple of people have asked about the older boys. They are doing great, just getting spoiled by grandparents. One day, one wanted McDonald's and one wanted Burger King, so grandpa drove to both places. We are so lucky to have such an amazing family so close. Aunt Ash and Uncle Anthony also took them for the day on Saturday, going from 1 kid to 3 which as any parent knows is quite a feat.

News from Cardiology

The good news is that Ryan was completly off the O2 by 3 this morning and has had a great morning. Still breathing to fast to nurse or take a bottle, but I did get to hold him all morning. The other news is that cardiology wants to try to discontinue the prostins (medicine that keeps one pathway open) again. Apparently the prostins make the heart tissue more delicate and thus surgery more difficult. They believe that his heart is doing enough to pump the blood, but that his lungs like that of all newborns are not up to 100%. This time, we put him on O2 for awhile before stopping the prostins to try get his lungs expanded a little. So far so good. I will keep you posted. They have also indicated that they will wait until next week to do the surgery, which is more then we knew yesterday.

Thanks to everyone who has emailed or posted comments. Reading message from all of you is one of my favorite parts of the day. I just realized (or actually Jason pointed it out) that I misspelled our last name in the website address. I don't think I can change it and some of you may have it bookmarked, so I will just leave it as Straman.

Good News from the Cath Lab

Ryan's cath procedure went very well. The cardiologist said they did not find anything unexpected and that the surgery should be a straight forward arterial switch. Apparently the coronary arteries can sometimes cause problems, but his were as they should be and should not cause any problems. Things didn't go as well this afternoon, but they are looking up now. Another thing they looked for during the procedure were the two areas of his heart that are allowing oxygen rich blood into his system. One is being kept open using a medication. The cardiolgist felt that the other (the atrial septal defect) was large enough that the prostins could be discontinued. Ryan did not agree and his O2 levels went from great to not so great. The neonatologist elected to put him back on and his O2 levels returned to normal. Now I am waiting for them to wean him back off of the O2. We still don't know when his surgery is scheduled for, only that they will try to talk about it before Friday. I am still trying to figure out exactly how the cardiology department works. I am hoping sooner rather then later, but we will see.

Waiting

Ryan's cath procedure is scheduled for today, but we don't know exactly when. I hope it is soon since they discontinued his feedings at 3 am and if he wakes up I think he will be really hungry. Other then that, he had a good night. He continues to be the superstar of the nursery as far as weight gain. He gains around 100 grams a day which is unheard of in the NICU. It's really funny, the nurse always has us pick him back up so they can zero the scale and check again. One even went an got a different scale. He is still doing good with his bottles, drinking them down in just a few minutes. A couple of times we had to use the tube because his resperation rate was to high, but they say at this point it is great that he can tolerate anything by mouth.

Pictures

As you can see, the boys got to come and visit on Sunday. Grant was pretty interested in the new baby. He sat beside him on a chair and kept saying "Shh, Baby Ryan sleeping". He would also look around and say "another baby, another baby". Kyle was ok, but I think he was a little upset.

Other news today, I talked to the cardiologist that will be doing the cath procedure tomorrow. We still don't know when they will even talk about scheduling the surgery. He said they typically have a conference with the surgeons on Fridays, but they will try to talk to them about Ryan before that. He did say that he will show us the "pictures" of Ryan's heart after the procedure, so we should at least know if there is anything else major going on.

A funny thing happened while I was holding Ryan today. His heart rate monitor kept sounding an alarm and showing his heart rate in the 60's. The nurse checked and he was fine and said that they lose signal alot, but don't read that off. When I went to put him down, we noticed that the sticker had transferred to my chest somehow and the monitor was picking up my heart rate.

The Weekend and the Week Ahead

Ryan had a good weekend, lot's of big firsts. On Saturday, they took out the remaining umbilical line which meant we got to hold him for the first time. They also started to feed him through a small tube in his nose. So it was one tube out, one tube in, but is was worth it to get to hold him. His first feeding went so well that they let me feed him a bottle at the next feeding. Since I nursed my older boys, this was also my first time feeding a baby a bottle, but it went very well. On Sunday, the nurse practitioner actually said that I could try nursing. I couldn't believe it, they monitor everything so closely, I never imagined that would be ok with just recording that he nursed for so many minutes, but they were so we gave it a shot. The first time didn't go so well, he got frustrated that the milk wasn't right there like it was in the botttle, so we went back to the bottle, but he did great the second time and I was so excited. We tried at 3 and I think he was just to tired. His breathing rate elevated so we went back to the tube and the back to bottles where I think we will stay for awhile.

We also talked to one of the cardiologists about his condition and the catheterization he will be having performed on Tuesday. His condition is called Transposition of the Great Arteries or TGA for short. A good explanation can be found at the following website: http://www.americanheart.org/presenter.jhtml?identifier=1682
The catheterizationwill help the cardiologist and the surgeons determine exactly what needs to be done during surgery. Sometimes other anomalies are present and this will give them a "roadmap" to follow. I am not sure how soon after the procedure they will schedule the surgery or even when we will get to talk to them about results, but will post more when I have a chance. There is a computer here in the NICU for families to use, which is nice. I will try to post a few pictures from home when I have a chance as well.