Thursday, July 31, 2008 - third time's a charm

I know, I know... I missed the Tuesday update for the blog. It's Lisa's fault (not really, but I like to blame things on her anyways.. I'm going to be a great dad)

Aiden now weighs 2 lbs - 12 oz.

Lisa and Aiden have been doing kangaroo care nearly every day. Generally, he does pretty good, but sometimes he has to go back to bed early. On Tuesday Lisa held him for over 2 hours.


Wednesday afternoon at 3:00pm they removed the ventilator to our surprise. This is the third time that they have taken him off the ventilator. He has been doing great. He is getting oxygen support through a nose cannula (30% O2 at this time). He's had very few desaturations all of which have been self-resolved. He's bigger and stronger than ever. We are all hopeful that Aiden will stay off the ventilator this time. This is another major milestone.


Aiden has one more week in the amphotericin course for treatment of infection. His feeding tube is still present. We can't wait for the day when all the drugs and tubes will be removed.

Keep praying for Aiden!


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Sunday, July 27, 2008 - 6 Weeks Old

Aiden is up 2 more ounces... weighing in at 2 lbs - 10 oz. He is 6 weeks old. They have increased his feeds to 7mL every hour.

Lisa did Kangaroo care on Friday for 25 minutes. He kept having oxygen desaturations, so he didn't get to stay out very long.

The Nurse Practioner said that they may try to remove his ventilator support sometime this week. That would certainly be a big step forward. Aiden may be ready for that, but I'm not sure that mom and dad are ready for it. He seems to forget to breathe a lot.



Lisa and I have a meeting with Dr. Desai tomorrow night. Lisa has a follow up appointment with Dr. Hansen on Wednesday.

Keep Aiden in your prayers.

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Thursday, July 24, 2008 - Up One Pound

Aiden has had two more good days. He now weighs 2lbs - 8oz! He seems to be gaining an ounce a day. He has gained 1 lb from his original birth weight.

I had not seen Aiden in two days. Today when I visited the NICU, I noticed that he has changed. He seems to be fuller in his face. The ounces that he is packing on are starting to show. I tried the wedding ring around his arm again. It went on but not as easy as the first time I tried it a week and a half ago. The ring barely fits over his elbow now.

There are no planned changes in his care. Lisa did kangaroo care on Wednesday but not today. Aiden was up and down quite a bit with his oxygen saturation. He normally recovers on his own though.


Have a good weekend! Keep Aiden in your prayers.

http://lisaandtwins.blogspot.com

Tuesday, July 22, 2008 - Aiden's Diet

Aiden is now 2 lbs - 6 oz!!! He's getting a 30 calorie supplement that is really packing on the ounces.

He takes after his dad. He lays around all day, sleeps a lot, eats constantly, and is gaining weight. Occasionally he will open his eyes and stretch his arms... like me occasionally getting up to fetch the remote or get something to drink. Carol has managed to bring home Mounds candy bars, Oreo Double Stuff cookies, and 5 boxes of Fruit Roll-ups yesterday - My Favorite!!! I'm going to be leaving Camp Carol weighing 300 lbs.

Aiden is doing great. Lisa has been doing kangaroo care every day. The doctors have been able to wean down some of the ventilator settings. He still has oxygen saturation issues every once in a while. Most of the time he recovers on his own.

There are no planned changes in his care. He's got a long way to go, but he seems to be on the upswing.

Keep Aiden in your prayers.


Nurse Lindsey made Aiden a card celebrating Aiden's 1000 gram milestone.

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Sunday, July 20, 2008 - 3 Days of Kangarooing

Aiden is 2lbs-2oz now. He has had three more good, stable days. Aiden is now 5 weeks old!

Lisa got to do kangaroo care Friday, Saturday, and Sunday. She loved every minute of it, and Aiden did great. He seems to be really comfortable against mother's skin.




The course of vancomycin is now complete. At least one drug has been removed from his medicine cabinet. There are no planned changes in his care. They will continue to try to wean down the ventilator settings.

Lisa and I spent our first night at our home since the post Cincy trip. It was nice to be home. Our house is far from being ready for Aiden's arrival. We haven't done anything yet to the room that will become Aiden's nursery. We are back at Camp Carol now and plan to stay here until Carol kicks us out or starves us out.

I hope everyone had a good weekend.

Keep praying for Aiden. He had a great week!


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Thursday, July 17, 2008 - Tests Repeated

Aiden had two more good days. He has gained one ounce and is now 2lbs-1oz.

He had a lot of tests repeated yesterday. The head ultrasound showed no changes. The renal ultrasound was still negative. The echocardiogram showed that he still had the PDA condition. This may continue to plague him for a while. Hopefully this will heal on its own. If not they may have to do surgery later. His chest x-ray showed fluid build up in his lungs which was causing him to be up and down on with his oxygen saturation. They have given him medication for this, and he has done better today.

Lisa could not do kangaroo care yesterday because of Aiden's oxygen saturation problems, and today she could not do it because the Nursery was receiving two new babies.

Aiden's skin has thickened up enough to where he doesn't need any assistance from the incubator for humidity. The nurse wrapped him up after the humidity was turned off. He seemed to enjoy this.



We are fortunate to have these good, quiet days. Pray for more to come.

http://lisaandtwins.blogspot.com

Tuesday, July 15, 2008 - Two Pounds!

Aiden weighed in at a whopping 2 lbs!!!!

He has had two more really good days, and he as now reached 28 weeks gestation.

He is still up and down on his oxygen saturation. The doctors have not added any new course of action other than increase his caloric intake. They plan to just let him grow. They will repeat all the tests from last week at some point just to make sure everything is still negative. They will want to eventually take him off the ventilator, but Dr. Por mentioned today that she will probably wait until the amphotericin course has completed. This means at least another 4 more weeks on the ventilator.

Lisa got to do kangaroo care on Monday. Aiden did great, and Lisa loved every minute of it. He kept his eyes open and wiggled around quite a bit during this time. I am a little biased, but he sure is cute. He must take after me. :)




Aiden got a new roommate today. Although born at 26 weeks, she weighs less than Aiden did at birth. UK's NICU is full of tiny miracles.

Keep praying for Aiden.


http://lisaandtwins.blogspot.com

Sat. & Sun, July 12th & 13th, 2008 - 4 Weeks Old

Aiden is now 4 weeks old and weighs 1 lb - 15oz. His infections are finally gone!

He had a great weekend. He was up and down on his oxygen saturation with a few spells of heart rate drops. It was a quiet end to a rough week.

Both Lisa and I got to hold him today. We didn't do kangaroo care, but holding him was very nice. He did well for the hour that we had him out of the incubator.



Aiden sporting a John Deere shirt that Nurse Tracy found for him.





We didn't want to push our luck, but we decided to ask Nurse Tracy what the requirements were for Aiden to come home. She said that he had to be off the ventilator, be able to maintain an appropriate body temperature, intake food, and gain weight consistently. She said he would be in the NICU a minimum of 8 more weeks - 36 weeks gestation. This is if everything goes well.

The doctors and nurses will now shift their focus from getting rid of the infections to weight gain and removal of the ventilator. He still has a long journey ahead, but getting rid of the infections was a big step forward.

Keep praying for Aiden!


Now that Aiden has reached the 4 week old milestone, Lisa and I have decided to update this blog only 3 times a week - Sunday, Tuesday, Thursday. If something important comes up on the off days we will be sure to post the news. As always, feel free to call us any time for updates.

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Friday, July 11, 2008 - Cultures Still Negative

Aiden had another really good day. The cultures are still negative!

They attempted another lumbar puncture based upon Dr. Por's request. This one was unsuccessful too. Aiden's secretions in his eyes and his mouth tested positive for E. coli today. This sounds serious to me, but Dr. Por said it wasn't a big concern. It will not change their direction in care for Aiden.

They reinstalled a new PICC line. This is a sign that the doctors feel the infections are gone. Aiden was up and down with oxygen all day with a few heart rate drops as well. Overall, it was another really good day.

We have been amazed by some of the people that we have met in our recent experiences. We stopped by the Labor Delivery Hall to see Nurse Sara Fick tonight and ran into Dr. Gianferrari as well. If you don't recall, Dr. Gianferrari and Nurse Sara were the ones that delivered our twin boys. They were genuinely concerned about our family and were sorry to hear about Caleb. Lisa and I are certainly humbled that Dr. Gianferrari and Sara would care so much about our situation with all the families and babies that come and go through that hospital.

Have a good weekend! Keep Aiden in your prayers!

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Thursday, July 10, 2008 - Test Results

We got most of the test results back today. The renal and abdominal scan results were fine. The blood cultures from both July 8th and 9th have been negative so far. Yeah! This is not the final conclusion since it takes up to 72 hours to grow an infection. Dr. Nelson said that if the cultures were still negative on Saturday, then it was a good sign the infections were gone. Aiden will stay on the amphotericin for 28 days past the 8th (if it stays negative).

They have tried to do the lumbar punctures twice now, but they can't get a clean sampling. Dr. Nelson decided not to try again since Aiden showed no visual signs of infection in his spinal cord and brain. Plus Aiden's previous lumbar puncture results came back negative too.

These negative test results made today a terrific day. Pray that the infections don't show up in the cultures these next two days. Aiden gained a little of his lost weight back. He is at 1 lb - 14 oz. There are no more planned tests.


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Wednesday, July 9, 2008 - Camp Carol

Day 21 from Camp Carol...

Things are nice here. There is fresh coffee in the morning, laundry magically gets washed regularly, and home cooked meals greet us when we come home. There is always a fresh stash of tasty treats (now I know where Lisa gets her sweet tooth). Her house is conveniently located within minutes of UK and less than 20 minutes to my workplace. With Carol driving Lisa to UK every day and me driving Lisa's car versus my diesel truck, we are saving almost $100/week in gas. Maybe we should just sell our house and make a permanent home at Camp Carol. Lisa and I are making plans to slowly move in all of our stuff over the next few months. Maybe Carol won't notice that we've permanently moved in.

Ok... back to Aiden. He's doing fine. He enjoys stressing us out every day. The nurse called me from the NICU today and nearly gave me a heart attack. The last call I got from the NICU was a nurse telling me to come to the NICU immediately to see Caleb. This time it wasn't nearly as severe. She wanted to inform me that the infections were still present, and Dr. Nelson, the Pediatric Infectious Disease Specialist, wanted to perform more tests. So today they performed an eye examination, lumbar puncture, blood cultures, secretion cultures, and renal ultrasound. The eye examination came back good. We won't know the results of the remaining tests until Friday.

Aiden looked pretty good. He was more stable today with his stats, but he did have a few oxygen and heart rate drops. We hope and pray that these tests will be negative for yeast and staph.


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Tuesday, July 8, 2008 - 27 weeks gestation

No day is easy, and yet every day is a blessing.

Aiden is at 27 weeks gestation and 3 months away from his original due date.


He felt better today and looked a little better. He had both his eyes open a lot today. He doesn't yet react to visual motion such as waving a hand in front of his eyes, but he does react to bright lights.

Aiden had a few bad blood gases drawn today that had too much carbon dioxide. The doctors were concerned about it, but felt he looked good enough not to warrant putting him back on the high frequency ventilator. This afternoon they got another blood gas back that was much better. The head, renal, and echocardiogram ultrasounds all came back. The head scan showed no change. The renal and echo showed no signs of infection or fungal balls. The echo did show that Aiden's heart had the PDA still.

Lisa got to do kangaroo care for about 10 minutes. Aiden did great for a while. His eyes were wide open, and he seemed relaxed. He's adorable. Unfortunately his heart rate dropped, and he had to be put back into bed. We enjoyed it while it lasted.

He lost some weight (fluids) from yesterday. They increased his milk feedings once again. He is up to 9.5mL every 2 hours.

It was another good day overall for Aiden. He is doing well considering his age and the infections. Continue to pray for him.

http://lisaandtwins.blogspot.com

Monday, July 7, 2008 - PICC lines removed

Aiden had another stable day, which makes it a good day. He did not look quite as good as yesterday, and was not moving around quite as much.

The doctors removed his two PICC lines today because they both had tested positive for infections (staph and yeast). The peripheral blood cultures have only shown positive for staph infection. This is why they wanted to get the PICC lines out. This is good and bad. The PICC lines provide a better path for giving the amphotericin to fight the yeast infection. It is the lesser of the two evils to remove the potential sources for the yeast infection.

Aiden got the full gamut of treatment today. They performed four ultrasounds of his body - echocardiogram, head, thorax, and renal. He has gotten blood cultures taken from several different areas to test for the infections. They increased his milk feedings to 8.5mL every 2 hours and were able to remove his IV fluids. He also got another blood transfusion. His stats were ok for most of the day, but they did have to increase his oxygen support.

Aiden did gain another ounce and is now up to 1lb ~ 15oz. It may be fluid related, but we'll take it. All the doctors seem to be pleasantly surprised that Aiden has remained stable through these infections and is doing so well with his feedings. Lisa met with an Infectious Disease doctor after he had reviewed Aiden's situation. He was very nice and seemed optimistic about Aiden's chances for getting rid of these infections. He will be following Aiden's status while the infections are present.

Pray for Aiden. Pray for an end to his infections.

http://lisaandtwins.blogspot.com

Saturday & Sunday, July 5th & 6th, 2008 - 3 Weeks Old

Aiden had a good weekend. He did have a rough Saturday night, but overall he had more ups than downs. He is now three weeks old and weighs 1lb - 14 oz. He's gaining weight! His feedings are now up to 7mL every 2 hours.

Aiden is still fighting the yeast infection. His blood cultures are still testing positive. The lumbar puncture results and the urine analysis did not show any yeast infection in these tests. This is great news. If it stays restricted to the blood stream, it will be much better for Aiden. Unfortunately, Aiden has redeveloped the staph infection. They still have him on vancomycin to fight this, and they added rifampin to his drug repertoire. He is quite the druggie.

For all the women out there, Aiden tried on his first "outfit". Like all boys, he didn't seem to enjoy it very much...

Eyes open. Picture of Mom and Dad inside incubator so he knows we are always watching him.


Notice the wedding ring - it will slide all the way up to his shoulder.


I got to change his diaper for the first time today, and it was a nasty one.


Aiden has been up and down on his ventilation settings. Saturday night was really bad, but they finally got him situated. He has been at a higher level of assistance ever since. He seems to be feeling ok, and he looks ok. It's a really good sign that he is handling the feedings so well. Pray this continues.

Thanks for all the thoughts and prayers. Continue praying for Aiden. Pray that the infections go away.



"For I know the plans I have for you," declares the Lord... "plans to give you hope and a future." Jeremiah 29:11


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Friday, July 4, 2008 - Eyes Open on Independence Day

He was born on Fathers Day, and his eyes have opened on Independence Day. Maybe he will get to go home with us on Labor Day.

Both his eyes have opened. Unfortunately the pictures we took did not turn out very well, so we will have to try again tomorrow.











Nurse Rosa got Aiden's incubator decked out in 4th of July decor. The card has a homemade American Flag, Aiden's handprints, and a note "I'm a Little Firecracker".



Aiden had a good day. His ventilator rate and oxygen support were both decreased. Most importantly the yeast infection has not shown up yet in the lumbar puncture results. There is still a chance that it may show up, but we will not know until the morning. The doctors are still taking blood gases several times through the day and also taking blood cultures to monitor the yeast infection. Aiden got another blood transfusion as well.

They have increased his milk feedings to 6mL every 2 hours. This is really good. He did drop another 1/2 an ounce, so now he is down to 1lb-11oz.

I hope everybody had a good 4th of July. Thanks for all the prayers for Aiden. He has had two good days, but he's got a long ways to go. Even when the yeast infection is under control, the amphotercin B medication is hard on him. He has to stay on this for 28 more days. So, Keep Praying!

http://lisaandtwins.blogspot.com




Happy 4th of July!

Thursday, July 3, 2008 - A Better Day

Aiden had a much better day today. We can tell that he is feeling better, and he certainly looks better. He seems to have responded well so far with his new medication, amphotericin B, for the yeast infection. He was moving around a little bit more and reacted to our touch.

We won't have the results of the lumbar puncture until tomorrow to see if there is an infection in the spinal fluid. We really need the test to come back negative. We did get good news from the renal ultrasound. There is no sign of fungal balls in his kidneys.

His blood gases were better today. He remained on a higher ventilator rate (twice his normal rate). As of tonight, they have started to wean him back down. He did lose 1/2 an ounce from yesterday.


I met Dr. Por for the first time today. She is the Attending Physician this month. She seemed really nice and very intelligent. Dr. Desai came by to check on Lisa today. She will continue to be supporting occasionally on the night shift and some weekends. She really likes Lisa and genuinely cares for our family.

Keep Aiden in your prayers.


Have a great 4th of July!!!


http://lisaandtwins.blogspot.com

Wednesday, July 2, 2008 - Send Prayers Aiden's Way

Aiden did not have a good day today. He really struggled with his ventilator settings and oxygen saturation.

The staph infection is gone, but a new yeast infection has developed. The doctors have started a 30 day treatment of a new medication to target this infection. In order to figure out the severity of the infection, they performed a lumbar puncture to check for infection in the spinal fluid. Infection in the blood stream is one thing, but infection in the spinal cord and brain is a bigger issue. I just want the infections to go away and leave our boy alone.

Aiden was pretty lethargic. We can tell that he isn't feeling very well. He moves occasionally but not as much as he used to. He is probably partially tired from all of the activities these past few days. The nurses are doing blood-gas tests frequently. The results have not been good most of the day.

They are going to do a renal ultrasound tonight that will determine whether there is a yeast infection or growth in the kidneys.



On the positive side...

There was no change in Aiden's head ultrasound results. It remains a mild GradeII intraventricular hemorrhage. This is good news because normally at this stage the bleeding should not get worse. Also, Aiden's milk consumption has increased to 4mL every 2 hours. He has gained 4 ounces these past two days, which is great. Aiden now weighs 1lb-12oz. The nurse said that some of this weight is probably just fluids, but it is good that he is gaining weight.

Lisa's follow up appointment with Dr. Hansen went well. Her incision looked good, and the doctor confirmed that Lisa was mentally stable. I would have thought otherwise, but I guess the doctor knows best. HaHaHa! All joking aside, Dr. Hansen's main concern was post-partum depression, especially with the loss of Caleb and Aiden still in the NICU. Lisa is strong. We both have good days when Aiden has good days and bad when Aiden has bad days.

Please pray for Aiden. He has a rough road ahead, and he needs all the love and prayer he can get.


http://lisaandtwins.blogspot.com

Tuesday, July 1, 2008 - PDA

Aiden kept Nurse Tracy busy for most of the morning. She listened to his heart and found that he had a heart murmur. The Doctors performed an echocardiogram and confirmed that he has a condition called Patent Ductus Arteriousus (PDA). This is a fancy name for an open duct in his heart that shouldn't be open. This duct in full term babies will close off when the baby is born and takes his/her first breath. For preemies this duct doesn't always close.

The duct could have been closed earlier and has now re-opened. It could have been partially open this whole time. The doctors said that it is just a partial opening and their treatment is to just reduce his fluid levels and adjust the ventilator settings. There is a good chance the duct will close on its own. If it doesn't close over time, the doctors may choose to close it surgically. The nurses and doctors do not seem to be overly concerned about Aiden's PDA. It sure makes Mom and Dad nervous.

If there is anything positive about PDA, it does help explain Aiden's up and down oxygen saturation levels and his inability to stay off the ventilator. Aiden is having more instances of apnea (pause in breathing) and subsequently bradycardia (slow heart rate). Hopefully once the PDA is closed, his respiratory issues will go away.

Other than the new PDA issue, Aiden seems to be doing well. His eyes still aren't open, but he's getting closer. He seemed very comfortable this afternoon and was sleeping well.

Lisa has a follow up appointment with Dr. Hansen tomorrow.


Pray for Aiden!




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