Wednesday, September 30, 2009

Aiden and Evan 9/30

A lot has happened since the previous posting. Evan is now on a nasal canula just like his brother. He is requiring a little more oxygen than Aiden, but he is doing really well. Last week, the boys were doing a really good job of maintaining their body temperature. So… they got to wear clothes for the first time last Thursday!! The preemie clothes were still pretty big on them, so we rolled the sleeves and made a few other adjustments. Overall, they like wearing clothes. And, they just look so darn cute in them!

One of the biggest milestones this week is bottle feeding. Aiden and Evan have both taken all of their feedings by bottle several times. However, this is only true for about 1 feeding per day. The rest of the feedings are still given by tube feeding. The boys are getting about 1 ounce every three hours. It takes them at least 25 minutes to bottle feed this amount. We don’t want them to try any longer than that, or they will end up burning more calories trying to eat than they will get from their milk!

Aiden reached 4 pounds today, and Evan is just a few grams shy!!! This means that they graduated out of their incubators and into baby beds. This makes it so much easier to pick them up, change diapers, dress them, etc.

It has just been wonderful to see the boys progress so much in the last few weeks. We know that they still have a ways to go. Please continue the prayers. Pictures will be posted soon (in clothes)!

Monday, September 21, 2009

Aiden and Evan - 9/21 with pictures and video

It’s been a good week in the NICU. The boys have had good steady growth and are up to 3 pounds 3 ounces each.

The biggest news this week is Evan was extubated Saturday afternoon. He had been on a ventilator for nearly two weeks so it is good to see him back on his nasal CPAP. I think he will be a much happier little boy without the vent tube stuck down his throat. Let’s pray that Evan is able to stay off the ventilator.

Aiden’s big news is that he has started to take a bottle this last week. He has not quit mastered feeding from a bottle though. He’s a natural at sucking on the nipple but hasn’t figured out just yet what to do with the milk. His little mouth gets full of milk and he ends up spitting most of it out. I bet he gets the hang of it here in the next week or two.

The doctors are going to do another round of tests on Aiden to see if his urinary tract infection has cleared up completely and if his liver enzymes have returned to normal levels on Monday. Aiden has been acting really well and does not look jaundice so we are optimistic that the tests are going to come back with good results.

Evan being held by Janel (9/6)
Janel with Aiden posing for a picture (9/6)

Evan with his Daddy (9/11)

Evan didn't like the vent tube at all but at least it gave him something to suck on all the time.

Aiden loves sucking on his pacifier. Here Janel flys it into Aiden's mouth.

The nurses take Evan for a visit with Mommy.

Aiden taking a look around.

Now that Evan is back on a CPAP, he can use a pacifier. He too loves them!

Aiden looks all tangeled up here when he decies to do his doggy dance!

Monday, September 14, 2009

Aiden and Evan - 9/14

We have good news to report about Aiden’s bilirubin. Although it is still elevated, it has gone down nicely over the last few days. The doctors think that treating the urinary tract infection has most likely helped his liver also. Aiden is still on his nasal canula (when he does not pull it out of his nose).

Evan is still on the ventilator, and the doctors are giving no indication of when he might be extubated. He is tolerating his vibrating treatments a little better now, but still has episodes when he is just very uncomfortable. We have been able to hold him the last several days/night, and he has really liked it. He has been out of his incubator since he was put back on the ventilator last week. He is in a warming bed. This is good and bad. It is good in that we can talk to him easier, touch him more, and be closer to him. However, he is very sensitive to sound. And, there are lots of sounds in the NICU (including his very noisy ventilator). Every time the phone rings in the bay, his arms and legs flail out, and this makes his ventilator beep, which makes Evan squirm even more. For Evan’s comfort, we will be glad when he is back in his quiet little house.

Both boys have had good weight gain over the last week. They are up to about 3 pounds now!! Evan’s feeds were even decreased today to possibly help with his lungs (less volume). Aiden has been very interested in eating for himself. He has latched on to me (Janel) twice, and ate 10 mL out of a bottle this morning. He has to learn to coordinate sucking, swallowing, and breathing. This is usually done around 33 weeks in-utero. The boys will be 33 weeks on Friday.

Everyone in the NICU has warned us about the ups and downs in the NICU (they call it the roller coaster). And, although we have had many, many ups and downs, I don’t think we will ever be prepared for the “downs”. Our hearts still sink every time we get worrisome news. We really appreciate everyone’s thoughts and prayers. David and I pray constantly for Evan and Aiden. I can’t help but think of Mark Shultz’s song “He’s My Son”. The chorus has been my prayer for 7 weeks…..

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Friday, September 11, 2009

Aiden and Evan - 9/11

It has been a high anxiety week in the NICU. I got a phone call from the NICU on Sunday night at 2:00 AM informing us that Evan was re-intubated because his breathing was worsening. His carbon dioxide in his blood was very high, indicating that he was not ventilating very well. Needless to say, this was very worrisome. Not much sleep that night!

Evan has been more stable since he has been back on the ventilator. He is not having near as many desaturations. He does not appear to be very comfortable, though. He flails his arms and legs quite a bit when he is unhappy. They are giving him some sedation to keep him calmer. He also has a lot of secretions in his lungs and has to be suctioned 1 to 2 times per hour. This is also very uncomfortable for him. The respiratory therapists have started giving him “vibe” treatments. This is basically a vibrating machine they place on his chest and back to break up the secretions from his lungs so that they can be suctioned out. Poor little guy!! It is so hard to see him uncomfortable. Please pray that Evan’s lungs will grow and develop into healthy lungs!

Aiden has continued to do well on his nasal canula. His color has continued to be slightly yellow/bronze. They re-checked his bilirubin on Wednesday and found that it was even higher than last week. They also checked his liver function enzymes and found them to be elevated as well. His liver is not functioning like it should be, and the doctors cannot seem to find the reason. He had a repeat of his abdominal ultrasound on Thursday and they could still not find his gallbladder. The gallbladder is really what they need to look at to find out if there is an obstruction or a cyst. They were finally able to collect some urine on Wednesday. We found out on Thursday that he does have a bladder infection. This could be what is causing his jaundice. He will get treated for 7-10 days with antibiotics to see if that helps his bilirubin come down. If not, more tests will have to be done. Pray that treating the urinary tract infection will heal his liver!

Both boys have gained weight this week!!! Today, they were both about 2 pounds 13 ounces. We apologize for not updating the blog as often as we should. We have both been very busy with the boys and work. Hopefully, we will find more time next week to update everyone (with pictures). Thanks for keeping Aiden and Evan in your thoughts and prayers. Please continue to pray for them!

Saturday, September 5, 2009

Aiden and Evan - 9/5 with pictures

There are not a whole lot of changes from the previous posting. The boys are now six weeks old! Aiden continues on his nasal canula doing very well. Evan continues on CPAP and still has his desat and apnea spells. He had quite a significant spell this morning that required some manual bagging from the nurse and respiratory therapist. It is very unnerving to see these spells. However, Evan also has some very good times, as well.

David mentioned in the previous posting that Aiden had an elevated bilirubin. There is a very long list of things that could cause this. They sent a urine sample on Friday to check for an infection and for a metabolic disease called galactosemia. Somehow, the urine got lost in the lab. By the time they found it, it had been sitting for too long. They will send it again today. The test for galactosemia came back negative (thank goodness). He also had an abdominal ultrasound yesterday morning to check for an obstruction or any abnormality. The ultrasound tech said that he never found his gallbladder. This test will most likely also have to be done a second time. The elevated bilirubin could also be his liver reacting the IV nutrition that he was on right after his surgery. However, this usually happens while the baby is on IV nutrition, and Aiden has been back on breast milk for quite a while now.

Evan’s urinary tract infection appears to be gone now, and he is off of his antibiotics. His color looks much better, and he acts like he feels a lot better also.

On a good note, I gave Aiden his first bath last night. He did very well. David was able to give Evan a sponge bath in his incubator.

The doctors (and us) are still very concerned about the lack of weight gain over the last 2 weeks. Yesterday, I started separating foremilk from hind milk when I pump. The foremilk is the watery milk that is produced the first half of pumping, and the hind milk is the fattier, more nutrient dense milk that comes in the second half of pumping. The boys are only getting the hind milk mixed with the fortifier now. Hopefully, this will help with their weight gain.

Evan after his first (sponge) bath.

Evan (now clean) relaxing.

Evan warming up after his bath.

Aiden's first bath.
Mommy holding Aiden after his bath.

Friday, September 4, 2009

Aiden and Evan - 9/4

Oh my, almost an entire week has gone by and we have not posted a single updated to this blog. Here's a quick update with a promise for more details later...

Aiden is now on a nasal cannula instead of the CPAP, a very nice step forward for him. The functional difference is that the CPAP forced air into the nose under continuous pressure while the cannula just blows air freely into his nose. The best thing about it is that he no longer has to wear the bulky CPAP on his face, the cannula is a nice small tube that fits much better around his head.

In order to make sure we don't get too excited about being on a cannula, Aiden decided to let his bilirubin levels get high and as a result he look jaundice. This just came up yesterday and they are doing a handful of tests to try to figure out why this is happening. We'll report back as soon as we know something more.

Evan has continued to do well in his breathing. He has been on 30% to 40% oxygen all week which is good compared to where he came from. He has been up and down a lot though so he still needs some good growth to get him past his lung problems.

Speaking of growth, both boys are slowly growing, emphasis on slowly. They are still only about two and a half pounds and the doctors (and us) would really like to see better growth. I guess we just have to be patient.