Aiden and Evan - 8/30 with photos

We’ve had several good days in the NICU as both boys have done well.

Aiden has been weaned down to a nasal CPAP and has stayed steady the last few days in the low twenties. His feedings have been resumed and picked back up to 22mL of 30 cal/oz milk mix every 3 hours. His weight today was 1160 grams, which is a tad over two and half pounds.

Evan has oxygen needs have stayed in the 45%-55% range over the last several days. He does not seem to be having as many apnea spells as he has been earlier in the week which is good. His color has been considerably better since last Tuesday when he looked very pale. They think he has had a urinary tract infection which may explain his color. Evan was placed on antibiotics to treat the infection and an ultrasound has been ordered to check his kidney anatomy just to make sure there is nothing more severe than a UTI. His feedings are currently at 24mL of 30 cal/oz milk mix every 3 hours and his weight has started to move up a little to 1130 grams today.

It’s been nice to be able to relax a little bit the last few days as the boys have both done well. Once again, thank you to everyone for lifting our boys up in prayer.
Here are a few pictures of the boys from the last week.

Aiden recovering from surgery on Wednesday. (32 days old)

Evan getting some sleep. That’s David’s wedding band around his left hand.

Evan is in the incubator under the blanket on the right and Aiden is in the radiated warmer bed next to him. They will be putting Aiden back into an incubator soon which is too bad for us as we have really enjoyed being able to interact with Aiden up close.

Aiden was placed back on his CPAP on Wednesday. He loves to suck on his pacifier.

We took this picture to compare Aiden’s current size with one of his premie size outfits he’ll be wearing before too long. He has a little bit of growing to do yet.

We have been able to start doing kangaroo care with both of the boys. Here is Aiden looking surprised to see daddy.

Here’s Evan snuggled up with mommy.

Aiden and Evan - 8/25

The boys turned one month old today!

Aiden continues to recover nicely from his PDA operation. They took him back off of the oscillating ventilator this morning and he has continued to make progress on his ventilation support needs. Dr. Michaels said they might try to wean him back to a nasal CPAP in the next couple of days if he continues to do well. In addition, Aiden should start back on his feedings tomorrow. Aiden has been fairly sedated the last several days so he does not move around as much as he previously was. Hopefully he is not feeling any pain from his surgery.

Evan has also been stable the last couple of days. They have been able to wean his ventilator settings some more and he seems to do well with oxygen levels in the mid 30’s. The biggest need for Evan is to grow. His weight growth has been down or flat the last several days, mostly due to the steroids which act as a diuretic. To help replace the lost fluid they have increased his feed amount up to 24ml every three hours and are going to increase the caloric density to get as much growth in as possible. Today his skin has started to look a bit pale and we (and the doctor) are not quite sure what to make of it. It may be nothing but to be sure they have drawn a little blood and are going to make sure there is not any sickness setting in. Hopefully it is nothing.

Janel got to hold Evan yesterday for the first time in several weeks. He lasted about 40 minutes and then had a hard apnea spell. Both boys will occasionally have spells where their oxygen saturation level and heart rate drops down. Usually it does not last more than a few seconds and the boys recover on their own. However occasionally they fall hard. The monitors start dinging and flashing and the nurses rush over and huddle over them, poking and rubbing – trying to find a position that improves breathing. When it’s really bad they have to remove the ventilation machine and manually vent using an air bag. It’s all quite a rush and the first time you watch incredibly scary. After a few times of seeing this you learn to filter the excitement of it and prevent yourself from getting too alarmed. But there is always a fear in the back of your mind and you can’t help feeling a little bit of desperation hoping everything will be okay.

Aiden and Evan - 8/23 with photos

What a weekend I am glad to have behind us. When we came for our Saturday afternoon visit Dr. Michael wanted to talk to us in the conference room in private. It’s never a good sign when the doctor wants to visit in private and this case proved to be no exception. That morning when Dr. Michael was doing his check up on Aiden he heard a murmur in his heart and ordered a echocardiogram to see what the cause was. The echocardiogram showed that Aiden had a PDA (patent ductus arteriosus) again and it was wide open. You might remember that Aiden and Evan both had PDAs and were treated with indomethacin (see 7/31 post). Because of Aiden’s age the doctors did not feel that indomethacin would work at closing the PDA this time and recommended surgery to place a clip on the open duct to pinch it close.

The news was somewhat of a shock to us (and the doctors) because Aiden has been doing so well and had not shown any signs of any of the problems that a PDA might cause. However, if left untreated it would be just a matter of time before the compromised blood flow caused problems so Dr. Michael wanted to do the surgery as soon as practical. So we agreed and the procedure was scheduled for Sunday morning at 9:30.

The actual operation is not too complicated and the impression we get from the doctors is that it is fairly common. The procedure is to make a small incision on the left side of the chest, go through the rib cage, push the lung out of the way a bit and place a small metal clip on the open duct to pinch it close. The whole thing takes about thirty minutes start to finish with most of the time spent identifying exactly where the clip needs to be placed. The biggest risk is that a nerve to the vocal cords runs down and through the same area as the duct and occasionally when this procedure is done that nerve is damaged. This happens in about one out of 4 to 5 times.

We arrived at the NICU Sunday morning at 8:00 and they were starting to prepare Aiden for surgery. They had moved him from his incubator onto a radiant warmer and were placing an arterial IV into his left arm. After twenty minutes we were asked to leave so they could switch Aiden’s nasal CPAP out for a ventilator. Fifteen minutes of waiting later we came back in and Aiden was intubated but having trouble getting stable. For an hour the respiratory therapist worked on Aiden’s settings and vent tube placement and finally was able to get it placed in such a way that Aiden was stable. The x-rays showed that Aiden’s lungs were probably starting to stiffen as a result of the PDA.

Meanwhile, Dr. Fox, the pediatric cardiac surgeon, arrived and went over in detail the procedure and associated risks with us. We signed the consent form for surgery and went back Aiden and Evan’s bed side to wait some more. We were told the operating room staff was tied up with other procedures and that our 9:30 procedure would be done at 10:30. At 11:00 the OR staff started to trickle in and began to prepare. At 11:15 we had to say good bye to Aiden and Evan and went out to wait in the NICU waiting room.

About thirty minutes later one of the nurses came out and told us that Dr. Fox had finished the procedure and that they were awaiting an x-ray to see if Aiden looked okay. Fifteen minutes after that Dr. Fox came out and told us everything had gone well. When he placed the clip on and closed the PDA, Aiden’s blood pressure changed right away indicating that the clip was blocking the blood flow as intended. We then got to go back into the NICU and see Aiden again. Aiden has an incision on his left side about a forth an arm length down from his armpit. The metal clip that Dr. Fox installed will be in Aiden for the rest of his life and should not cause any issues.

Since the operation Aiden has been sleeping off his anesthesia on the radiant warmer. We were warned that Aiden will likely have a rough couple of days following the surgery as his body recovers. This afternoon, X-rays showed that his lungs were not fully inflating so they have placed him back on the oscillating ventilator to try to expand them back out. He will probably be on a ventilator for a week. His feedings have been put on hold as well for a couple of days and he will be getting his nutrition through the IV. Hopefully, these set backs will be temporary and Aiden can get back on the growth track soon.

Evan is doing well still and continues to improve on his oxygen needs. He likes to be on his belly and has gotten down to 30% oxygen in this position. His steroid dosage is being stepped off and his last dose will be on Wednesday.

Here’s a couple of pictures from the last few days.

Aiden having skin-to-skin time with his mommy.

Evan and Janel’s hand.

Aiden before his operation.

Aiden after his operation. You can see the incision on his side.

Aiden and Evan - 8/21 with photos

We have had a few really good days in the NICU. Yesterday, Evan was weaned from his high frequency ventilator to a conventional ventilator. He tolerated it really well. Later in the day, they were able to turn off the nitric oxide. Then, finally, around midnight of last night, Evan was extubated from his ventilator and placed on nasal CPAP just like his older brother. He seems to be tolerating it very well. He now has to wear the stocking cap just like Aiden. Aiden is also doing well. David is having quality Kangaroo Care right now with Aiden breathing 21% oxygen (room air). Umm… he just saw me type that and had to get bumped up to 24%.

Both of the boys are tolerating their breast milk and are off of their IV nutritional support. That means that both boys were able to have their PICC lines removed. The breast milk is being fortified to 28 calories per ounce now with the Prolacta. Both of the boys are getting a whopping total of 5 ounces per day. Although it is a small amount, it meets their calorie needs. Aiden is up to 2 pounds 3 ounces and Evan is up to 2 pounds 5 ounces. We are very pleased with the progress that both boys are making. Hopefully, we are past the major hurdles. They still have a long way to go and need lots of prayers!

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Evan off his ventilator and now on CPAP.

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Aiden napping.

Aiden telling us to stop taking pictures.

Our other set of twins are feeling deprived.

Dixie

Molly

Aiden and Evan - 8/19 with photos

The steroids are working! Evan has been doing continually better with his ventilation needs since Monday when he started dexamethasone. Currently he is doing well on only 32% oxygen, the lowest he’s been in a couple of weeks. We talked to Dr. Landers this afternoon and she said his response to the dexamethasone is exceeding expectations! Janel and I both just wanted to do a little dance when she gave us such good news – what a relief! Thank you to everyone for praying for Evan’s improved lung performance.

Aiden also has had some positive steps in the last few days. On Tuesday they removed his PICC line which they were using to give nutritional support. This is great news because the PICC line has a reasonable chance of causing infection when left in long term and, more importantly, it means Aiden is able to get all of his nutrition from Janel’s milk and the Prolacta they are mixing with it. One less tube/wire hooked up to Aiden! They said they might remove Evan’s PICC line in the next couple of days if he continues to tolerate his feedings. He threw up most of one of his feedings Sunday night so they are being a little more cautious with Evan.

To celebrate the good progress made in the last few days, here are a few pictures of the boys.

Evan 21 days old.

Aiden asleep at 21 days old.

Aiden’s a happy looking boy! (23 days)

And Evan’s a sad boy. (23 days)

Evan’s 25 day old foot.

Evan holding hands with Janel.

Aiden at 25 days old. He likes to put his arms up.

Evan doesn’t like the light too much and will start squinting when you remove too much of the incubator cover.

Aiden and Evan - 8/16

It’s been a few days since our last update to the blog so Janel and I thought we better drop down a few lines before we headed back home from the NICU.

Evan’s overall condition has not improved much over the last several days. His oxygen needs have been up and down a lot but seem to be centered on 50%. Today we came in and found him up into the 70s which is the most we have seen him on yet so we are a bit discouraged that maybe he is not making the kind of progress we were hoping for.

The doctors all seem to agree that giving Evan steroids is the best course of action now as the risk of not taking them is probably greater than doing so. So, we have agreed to start Evan on steroids on Monday. He will be on dexamethasone for one week and we should see results in the first two or three days if they are going to do anything. As for the risks, we will just have to wait, pray and see what happens as Evan grows up.

There is little research on the impact of taking dexamethasone after the first week of life. The doctor pointed us to read about the DART study which attempted to compare a group of 35 infants that received dexamethasone versus a control group that didn’t. From what I got out of it, they did not detect an appreciable difference but the results were just about meaningless. The dosage and overall health of the participating children varied so much it is impossible to say how their outcomes would have differed had dexamethasone been delivered or withheld. It really just goes to show how much of our medical care is guess work and it is really by the mercy and grace of God that any of these children in the NICU go on to have normal lives. So, let’s just pray that God takes care of Evan and protects him from any of the possible harm that might be done.

Not much new to report on Aiden. The gas in the stomach issue that popped up earlier last week has not reappeared. They tried to take him off the CPAP on Friday but unfortunately he only made it about an hour before his blood saturation levels dropped too low. It’s encouraging to know that Aiden is doing well enough that they are trying to wean him.

Both boys have grown a bit. Aiden is up to 2 lbs 2 oz and Evan is 2 lbs 3 oz. Evan is now getting 14 mL every three hours, and Aiden is up to 13mL every three hours.
Janel and I made it to Sunday school this morning for the first time since the boys arrived and it was good to be back. We can not say enough how much we appreciate all of the loving support and concern they have showed us over the last three weeks. And the same also applies to so many people, many whom we don’t even know, who are praying for the health of our boys. Thank you and please continue to lift Evan and Aiden up in prayer.

Aiden and Evan - 8/12

The boys have had a good couple of days since the last post. Evan’s oxygen needs seem to have stabilized and he seems to be doing well on about 50% oxygen. It is a major relief for Janel and I that he is no longer going up in his needs. They gave Evan more surfactant yesterday morning and started mixing a little nitric oxide into his air supply and this seems to be helping. His puffiness has started to go down noticeably from where it was on Monday and he is looking all around better. Hopefully he will continue to do well and outgrow his ventilating needs before too long.

Aiden continues to perform like a champ. He is looking healthy and moves around quite a bit which is fun to watch. His eyes have been staying open for longer periods of time and he seems to do a good job at looking at you when you watch him. The only issue that has come up with Aiden is too much gas in his stomach. This probably came from his ventilator which is always pushing air into his nose. They lowered his ventilator pressure and inserted another tube into his stomach to allow it to vent and this seems to be working. He looked pretty bloated this morning and this evening he is about back to normal.

Janel and I have gone into work every day so far this week. Our routine is to get to the NICU around 7:30 in the morning, head to work around 9, and then come back to the NICU in the evening after the 7:30 evening shift change. This seems to be working out okay and we are not too sleep deprived (though I think Janel’s breast pumping keeps her a bit more deprived of sleep than I am).

As always, thank you for all of the prayers. God is listening and is helping our boys!

Aiden and Evan - 8/10 with photos

Not much news to report tonight on the boys. Aiden continues to do very well and Evan is still struggling with his breathing. Evan needed 60 to 70 percent oxygen in his ventilator in order to stay at proper blood saturation levels this morning, which is very high in comparison to Aiden who is in the low 20’s. According to the night nurse, they were able to lower him down into the 40s during today but it is still a lot of up and down.

We talked to the doctor about Evan’s condition this morning and he tried to reassure us that Evan is still on a course that can lead to a normal healthy outcome. However, at the same time he started to layout what actions could be taken in the event Evan’s chronic lung disease continues to worsen. To sum it up, there is not much they can do. The course of action for now will be to continue to monitor Evan’s blood saturation levels and adjust ventilating as needed. The hope (and usual outcome) is that Evan would continue to grow and his lung’s new growth would allow him to breath on his own. If his oxygen needs continue to increase they will consider giving him steroids, however doing so would increase his chance at getting cerebral palsy.

Needless to say, Janel and I both are very worried about Evan’s condition. It was a good thing that we both went back to work today. Staying in the NICU watching the blood saturation monitor all day is emotionally draining. Our hearts sink every time Evan goes below 80 and anytime any of the alarms in the NICU goes off (there are so many alarms!) we look to see what his monitor says. It probably is for the best we get out of the NICU for a while.

It had been a while since we had taken some pictures of the boys so when the respiratory therapist changed Aiden’s cap we had to get the camera out.

Janel holding Aiden up.

Janel holding Aiden again, this time you can really see Aiden’s dark hair.

The nurse suggested we take a picture of Aiden with our wedding rings. Even Janel’s size 3.5 ring is a loose fit for Aiden.

Here both of our rings are resting on Aiden’s left foot.

I felt bad that Evan was missing out on all the fun so I tried to take a few pictures of him. Unfortunately we don’t want to stimulate him so his oxygen needs will be as low as possible. Since the light seems to bother him I had to shoot under the blanket so the pictures are not the best. Nonetheless, you can still see how Evan looks a little swollen with excess fluid. The big metal thing on his right arm is to protect his arterial IV line they have placed in him.

It’s hard to see our boys not looking comfortable and it’s been a few days since Evan’s really looked happy. Please continue to pray that God provides strength and comfort for both Evan and Aiden so that they might grow into normal healthy little boys.

Aiden and Evan - 8/9

Over the last 24 hours, Evan’s lungs have continued to worsen. He is now requiring more support on his ventilator. The doctor said that his chest x-ray shows some signs of chronic lung disease, which will most likely mean he will be on the ventilator for longer than expected. He is also quite puffy since he is holding a lot of fluid around his lungs, a side effect of the indomethacin he was on for his PDA. He is sedated, so he is not opening his eyes as much. It is very difficult to see Evan like this, as just earlier this week he was doing so well. The doctor has said that the chronic lung disease could last for days, months, or years. It all depends on the next few days and how well Evan’s lungs will recover once the excess fluid is gone. We are praying that this will only be a very temporary thing.

Aiden is doing very well. David had skin to skin time with him tonight. Aiden continues on his nasal canula for breathing. He still wears his stocking cap all the time to keep his nasal canula in place. Both boys are tolerating their small volume feedings well.

We had several visitors this weekend at the hospital. It really helped to break the monotony of the hospital. Tomorrow, David and I will return to work. It will be interesting to see how that goes. We will try to get a visit in before work and then a long visit in the evenings. I will try to come some days on my lunch break as well.

Please keep the boys in your prayers, especially Evan’s lungs. Both boys need lots of prayers right now!

Aiden and Evan - 8/7

The last 3 days have been a roller coaster. Evan’s breathing continued to worsen. With his poor breathing, his oxygen saturation was very low, and he had too much carbon dioxide in his blood. This morning, we arrived at the NICU at 8:00 to find Evan being placed back on the oscillating ventilator. This felt like we were taking three steps in the wrong direction. David and I left in tears to go to my doctor’s appointment. When we returned later in the morning, Evan was more stable on his new ventilator and his blood gases were much improved. He still has some haziness in his lungs, but seems much more comfortable. Aiden had a good day. He did have some episodes of desaturations, but overall has been pretty stable.

We spoke with Dr. Landers this afternoon. Evan had an echo for his heart this morning. His PDA is closed! What a relief. The boys also had brain ultrasounds yesterday. Aiden, who had previously had Grade 1 and Grade 2 hemorrhages, now has a completely normal reading. Dr. Landers had the results rechecked because she said this is impossible (it’s called a miracle). Evan, who previously had a clear reading, now had some areas that look a little abnormal. Dr. Landers said it is probably nothing to worry about, but it will be rechecked again in 2 weeks.

So, it continues. Problems solved and new problems arise. Please continue to pray for Evan and Aiden, especially Evan’s lungs, his new abnormal readings on his brain ultrasound, and that both boys’ PDAs will stay closed. We are so grateful for all of the prayers!

Aiden and Evan - 8/6

The boys have had a rough couple of days since the last posting here. On Wednesday morning we talked with Dr. Creswell and he had heard a murmur while listening to Evan’s heart. They did an echocardiogram and found that Evan had a medium opening in his ductus arteriosus (a PDA), the same condition they had treated Aiden for earlier in the week. As a result they put Evan on indomethacin to try to close the opening. Today Dr. Creswell could not hear the murmur which could mean either the opening has closed back up or it has opened so fully that it no longer resists the blood flow enough to cause a murmur. They are going to keep Evan on the indomethacin until tomorrow and do another echocardiogram to check the progress.

Both boys have had some issues with their breathing. Aiden seems to be doing better today but Evan has been up and down on his blood saturation levels for the last two days. He’ll be in the 90s for a few minutes and then fall off into the 70s or lower for a minute or two and then come back up. The nurses have increased the percentage of oxygen they are giving to help keep it up. Dr. Creswell says the desaturation could be caused by the indomethacin which has a side affect of stiffening the lungs making breathing more difficult for Evan or it could be that the PDA valve is preventing his blood supply from flowing through his lungs correctly. The constant up and down motion of Evan’s oxygen saturation is staring to fray our nerves a bit and does not help our fear that Evan’s opening has gotten worse instead of better.

Because of Evan’s PDA, they did not let us do kangaroo care with him yesterday or today so Janel held Aiden. Evan has been looking agitated the last few days which probably correlates with his blood saturation issues so keeping him undisturbed is probably best.

Some good news is that both boys are slowly starting to do better with their feedings. The residual they are pulling back up on their feeding tubes from both boys is no longer the dark green goo it was before and they have increased the feeding amount from 1.5 mLs every four hours to 2 mLs. Also, Evan finally decided to open up his right eye so he no longer looks like a one eyed pirate.

Please keep praying for Aiden and Evan.

Aiden and Evan - 8/4

The boys had another good night and not much has changed on their status. We talked with Dr. Creswell today and found out that Evan’s kidneys are filtering out too much bicarbonate as a result of not being mature. They can compensate this by giving him more until his kidneys start working better. The result of this right now is that Dr. Creswell is going to keep Evan on his ventilator longer before trying to wean back to the nasal prong.

Yesterday we started doing skin-to-skin contact with the boys. Janel held Evan yesterday and David held Aiden and today we swapped so that we have both now held each of the boys. We got to hold them for about an hour and a half today. Here are some pictures of the holdings:

Here the respiratory therapist and nurse lift Evan off his bed and carry him to Janel.

Janel holding Evan to her chest.

Our first family photo! Janel is holding Evan and David is holding Aiden.

David holding Evan.

Janel holding Aiden.

And here are a couple more pictures of our little guys:

They took Aiden’s cap off to give him a bath (wipe down) so we got to see his dark hair for the first time.

Evan’s our little pirate with only one eye open.

Aiden and Evan - 8/3

The boys are doing very well today. Aiden had another echocardiogram this morning that showed his heart murmur is smaller. He is going to get one more dose of medicine for his murmur today and then a repeat echo in a couple of days to make sure it is completely closed. Please continue to pray for Aiden’s little heart! Evan continues on the conventional ventilator, and the doctors have said that they will most likely continue this throughout the week. Both boys increased the volume of their feeds by a small amount and seem to be tolerating them a little better.

David and I got to hold our sons for the first time today! We both had to take off our shirts and hold the boys directly on our skin. The nurses call it “skin to skin” time. I held Evan while David held Aiden. Evan did very well. He grimaced when the nurses took him out of his little warm house (incubator), but he fell asleep as soon has he was placed on my chest. Aiden did fairly well. He had a little bit of a hard time keeping his breathing constant, but he fit very comfortably in his Daddy’s chest.

Aiden also had his first “bath” today, which means that we got to see his head for the first time. He has dark hair and dark eyelashes. Evan, however, has blond hair and very light eyelashes. Aiden is opening his eyes more and more everyday. Evan is still our little pirate, opening only his left eye. His right eye is still fused shut.

David’s family came into town on Saturday evening. It was very nice to be able to show Evan and Aiden off! They left this afternoon, and my mom went back to Oklahoma today as well. We are so blessed to have such wonderful family.We really thank everyone for your prayers and support. This is a very difficult time, but also a very happy time as we watch two little miracles grow and develop.

Aiden and Evan - 8/2 photos

Here's a few more pictures of the boys...

Aiden at six days old.

Aiden with his legs crossed and saluting.

Here is Aiden with the bilirubin light turned off and his eye mask removed. He was really looking around and got a good look at his Mommy and Daddy.

Here is Evan at six days old waving hi to the camera.

Evan seven days old. You can really see the blonde fuzzy hair he has on his head in this photo.

Evan with his left eye just barely opened.

And Aiden at seven days old peaking out.

Evan’s little six day old foot.

Aiden and Evan - 8/1

The boys had a good night last night. After having their feedings stopped last night because of the green goo that was being pulled back up, they restarted this morning. Evan is doing well with the feedings but Aiden is still having a little bit of green goo issues.

Evan’s left eye has started to open up. He was kind of squinting with it when we were visiting this afternoon. Hopefully we can catch a photo with it open wide.

Both boys are currently off of their light therapy. They look much more at peace without the bright light shining at them. The nurses have put blankets over the incubators which make it dark for them.

In times like these music is sometimes the best way to express the way you feel. Perhaps then it was meant to be that the radio has started playing a song by Kenny Chessney (with one of my favorites Dave Matthews) called I’m Alive. I’ve copied them here below:

So damn easy to say that life’s so hard
Everybody’s got their share of battle scars
As for me I’d like to thank my lucky stars
thatI’m alive, and well

It’d be easy to add up all the pain
And all the dreams you sat and watched go up in flames
Dwell on the wreckage as it smolders in the rain
But not me, I’m alive

And today you know that’s good enough for me
Breathing in and out's a blessing can’t you see
Today's the first day of the rest of my life
And I’m alive, and well
I’m alive, and well

Stars are dancing on the water here tonight
It’s good for the soul, when there’s not a soul in sight
But this boat has caught its wind and brought me back to life
Now I’m alive, and well

And today you know that’s good enough for me
Breathing in and out's a blessing can’t you see
Today is the first day of the rest of my life
Now I’m alive, and well
Yeah I’m alive, and well