Friday, July 31, 2009

Aiden and Evan - 7/31

The biggest news today is that they did an echocardiogram on Aiden’s heart and classified his murmur as moderate to severe. Because of this they are going to go ahead and start Aiden on medicine to help the valve start functioning properly. The medicine they use is about 60% effective at correcting the issue and will take several days to work. We should know in about five to six days if it is successful. The downside is the medicine decreases blood flow to the organs and could have some side effects.

Other notes for the day:

- Evan is still on the conventional ventilator and has been doing much better with it. Aiden continues to do well with his breathing.

- They started giving small feedings to the boys today but had to stop again because they are still bringing back up the green bile.

- I (David) changed my first diaper tonight on Evan. As soon as we got the dirty diaper off he started peeing again and peed all over the ointment the nurse has just applied.

- Our friends James and Liz stopped by this evening to visit the boys and us. It was nice to show off our new additions to our friends and we appreciate them visiting.

We also would like to give thanks to our good friends JoeDale and JoNell for brining by Rudy’s barbeque the other night. We have had the pleasure of making several meals out of their generous gift.

I’d also like to give thanks to Janel’s mother, Mary, for helping us out all week. Her presence has made this week much more bearable for us.

And as always, thank you to everyone who has lifted our boys up in prayer over the last week. We could not have made it this far without God’s loving hands helping us. Please continue to pray for Evan and Aiden.

Thursday, July 30, 2009

Aiden and Evan - 7/30

This was one of those roller coaster type days that they had warned us about earlier in the week.

Janel and I arrived today to find out that both of our boys were not doing as well as they had been on their breathing. They did the sonograms this morning and this probably wore the babies out. Evan had had few apneic spells and they had to increase the oxygen levels back up some. Also, Evan had another attempt at putting his PICC line in but again his little veins wouldn’t take it. We think that Evan has Janel’s veins and is a “really hard stick”.

We then talked to Dr. Landers, the neonatologist, who gave us the wonderful news that Evan’s brain sonogram showed no signs of bleeding and that Aiden only had two little spots of bleeding. Aiden has a level one and a small level two (lower the better) bleed in an area normally filled with fluid and not in any of the actual brain tissue. There is little chance that the size of the bleed will increase and should actually decrease as Aiden’s body reabsorbs the bleed. Dr. Landers said the probability of a level two bleed becoming problematic is only 20% and Aiden’s was on the smaller side of level two. She sounded optimistic that Aiden wouldn’t have any problems from his.

Dr. Lander’s also informed us of another potential concern with the boys. The blood vessels in the retina of the eye are in the process of developing right now. There is a 20% chance that these vessels may not develop correctly and the result could be as minor as a lazy eye or serious as blindness. The most critical factor is the controlling of the blood oxygen saturation levels. If the vessels receive too much oxygen while they are developing, they will not do so completely. This is why (or at least one of the reasons) the monitors start beeping any time the oxygen level goes above 95%.

The other news from Dr. Landers was that they are going to try giving the boys some of Janel’s milk again. As of this evening, both boys are getting feed every four hours and so far they seem to be taking it well.

Around 5:30 PM today Janel got a call saying they were placing Evan back onto a ventilator. I guess his blood saturation levels were not staying up high enough. They have replaced a tube back to his lungs and are using a normal ventilator. We are a little disappointed that Evan had to go back on a ventilator but we were warned early on that they would probably have to go back on ventilators several times.

Janel and I are holding up fairly well through all of this though there are times when the enormity of all of this hits and you can’t help cry a little bit. Knowing that so many people are praying for our little boys really is comforting and we can not express our thanks for this enough.

Aiden and Evan - 7/30

Hi! It’s finally Janel…

First of all, I am very grateful for all of the prayers and support that we’ve gotten since our big surprises on Saturday. We are so grateful to have such great family and friends. My sister and Mom were able to come down Saturday night. Then, my Dad flew in on Sunday. They were such a big help to David and I. And, of course David has been wonderful through all of this. I am so blessed!

I can tell that the boys are getting stronger every day. Last night, we heard Evan cry. He does not like to have his diaper changed! The nurses have started log-rolling Evan, so he was on his side for quite a while yesterday. He really seemed to like this! Evan likes to squirm. I think he is going to be feisty, which is kind of weird since Aiden was the kicker in my belly. Aiden is doing well too. He likes to stretch and grab a hold of his tubes. We found out yesterday that he most likely has a heart murmur. So, please continue to pray for them!

The boys have not gotten to have much of my milk yet. They have not been tolerating the tube feedings. Hopefully, they will get lots of it soon, because our refrigerator and freezer are filling up fast. It really gives me comfort to provide at least that for them. They are getting their nutrition through their IV right now, but hopefully will be able to use their feeding tubes soon.

We have been going to the NICU twice a day, in the morning/afternoon and in the evening. We have been running circles since I came home on Tuesday. I guess we had better get used to it, because it won’t slow down for the next 18 years.

Please continue to pray for Aiden and Evan. They need lots!

Aiden and Evan - 7/29

We got some worrying news today about Aiden’s heart. One of the nurses started hearing a murmur in his heart. One of the valves in his heart is not closing yet which can result in improper blood flow into or out of the lungs. It sounded that this is not too uncommon in babies this age but usually it will close on its own in the first several days. To help Aiden out, they are going to give him some medicine which usually will make it start closing properly. They are going to see if this works over the next four or five days. If not, Aiden may have to have a surgery to correct the problem.

Since both boys are having issues taking and digesting milk, they want to use a new formula that uses concentrated breast milk called Prolacta to mix with Janel’s breast milk. Studies so far on Prolacta show that it is less likely to cause intestinal problems because it does not use any cow’s milk. Janel knows all about this stuff and seems excited that they will get to use it.

Still no sign of infection in the samples they have growing in the lab which is encouraging. The boys are still on antibiotics as a preventative measure.

Both boys are still doing well on their breathing. No signs of apnea yet.

After trying twice yesterday to place the PICC in Evan they decided to place a PIV in the back of his head. The PIV is more or less the same as an IV and they will still need to get the PICC placed. I’m not sure if they will try again tonight or wait till tomorrow.

We were warned today that it is not uncommon for babies as young as our boys to go through a slump after about two weeks of life. We’ll have to wait and see what happens and hold on as best we can.
Today when we were visiting the boys the nurse turned Evan onto his side. He seems to really like being on his side as this made him sit still and look less agitated. It also allowed us to see the back of his head for the first time. The fuzz there thickens up into blonde hair which you can see in the photo above. I can’t wait to see the boys with out their stockings on.

Wednesday, July 29, 2009

Aiden and Evan 7/29 Photos

A few more pictures of our tough little men…

Aiden at two days old with Janel’s hands. We are allowed to touch the boys some but have to be careful not to stimulate the babies too much. On the second day, Aiden and Evan were both under light.

Here is Evan at two days old. Notice that both Evan and Aiden have different breathing tubes than they had on day one. The orange tube going to the mouth is for their feeding and goes all the way down to the stomach.
Evan at three days old. Both boys are really looking better. Most of Evan’s bruising has diminished and the skin is looking thicker on both. According to the nurses, Evan actually had a little better skin than Aiden and that it was not as sensitive.

A closer look at Evan’s face. Evan’s eyes are still webbed shut at this point but should open up in several days. That's Janel’s hand, which helps put the size in perspective.

David’s hand next to Evan’s left foot. What cute little toes!

Aiden at three days old. He is still under the light but the nurses turned it off for a few minutes so they could take his eye cover off for us.

Here’s a close up of Aiden’s face. He has opened his eyes but usually keeps them closed. According to the nurse, the pigment in the eye that gives it color has not filled in yet.

Evan and Janel.

Aiden and Janel.

Janel and one of the nurses changing Aiden’s diaper. Both boys get agitated and move around a lot more when they are wet. Less than a minute later, Aiden had already wetted himself again!

Aiden is in the incubator on the left and Evan is on the right.

The money shot. This is one of the diapers that the boys are now wearing. At first they actually were wearing them like a normal baby would (see day one photos) but they stopped strapping them on because they rubbed their umbilical cord. They now just sit on one and use gauze padding to absorb their urine.

Tuesday, July 28, 2009

Aiden and Evan – 7/28

Janel came home today! We were discharged and left the hospital at 2:30 today, although we will still be here enough that Seton will seem like a second home. We are both really looking forward to sleeping in our own bed tonight!

Janel has continued to increase in her milk production. She was able to get a full 2oz this afternoon at one of her pumpings. We’ve rented a breast pump to use at home and Janel will have to use it every three hours or so around the clock.

The boys continue to do well. They are both still off of the high speed oscillating ventilators and have not shown any signs of significant apnea – a very positive step in the right direction. I talked with one of the respiratory specialists and got a better understanding of what the differences are between the ventilators and how our boys lungs are developing. As I understand it, the boys lungs are already developed. However, when in the womb the lungs are full of fluid which comes out at birth. At 25 weeks, the lungs do not yet have a lubricating coating to prevent them from sticking to themselves. To correct this, the doctors gave the boys surfactants, which give their lungs a thin coating of lubrication allowing them to expand easier.

The ventilators that they are now on apply a continuous amount of positive pressure into nasal passage (the previous machines had tubes all the way to the lungs) to help keep them expanded. Also, the new ventilators give longer, shallower breaths at the rate of twenty times a minute that help keep their blood saturation levels higher. However, both Aiden and Evan are breathing on their own at their own rates so in that respect they really are breathing on their own.

The most exciting thing to report today is that Janel and I heard Aiden cry for the first time! I’ve never heard a baby’s cry sound so good. The nurses also mentioned that they have also heard Evan make crying sounds.

Other notes from the day:
- Aiden has had his first bowel movement. Still waiting on Evan to get going here. Apparently it is normal for it to take several days for this to start going.

- Aiden got his PICC placed into this arm (no, I don’t know what PICC stands for or if it is even really an acronym). This is essentially an IV that goes into an artery near the heart. They tried getting Evan’s PICC placed twice today but failed to do so. They will try again tomorrow.

- Both Aiden and Evan are having some issues with bile coming up from their intestines into their stomach. They have tried giving they boys some of Janel’s milk and when they pull back on the feeding syringe to see if they have taken the milk they got green stuff. This is apparently normal in babies at this age and given a little time, their digestive systems should start going the right way.

Monday, July 27, 2009

Aiden and Evan 7/27 photos

Here are a few photos that we have taken so far:

Here is Evan at one day old. He is under a bright light to help lower his bilirubin which his bruising is likely increasing.

And here is Aiden at one day old. The plastic that is over him is to help keep the humidity level next to his skin up. Both Aiden and Evan are inside incubators which help them regulate their body temperature.

Evan's little foot.

Aiden and Evan – 7/27

One of our first questions we had for the neonatologist was what kind of chance the boys have at a normal life. According to Dr. Creswell, all the research he’s seen shows that babies born in the 24-25 week range have a survival rate of 80%. Of the babies that do survive, only 35% have any kind of handicap as a result of being premature, which means there is a slightly better than 50% chance that our boys will get through this without any lasting issues.

During the first several days of life, the biggest concerns are infection, lung development, and brain hemorrhage.

The risk of infection is present in all new born babies as they have been relying on the mothers immune system for protection. For premature babies the risk is even higher. Immediately after birth, both Aiden and Evan were given antibiotics to help fight any infection that has or may occur. So far, no signs of an infection are present in either Aiden or Evan.

At 25 weeks gestational age, the lungs are not fully developed. While they are capable of exchanging oxygen, the structure of the alveoli is not fully developed and the lining inside the lungs that help protect them from infection is missing. In addition, babies this young are at an increased risk for apnea, which is where the baby essentially forgets to take a breath. Immediately after birth, both Aiden and Evan were placed on a high speed oscillating ventilator. This machine pushed a small amount of air in and out of their lungs 15 times a second. The result of this is that you could see their little chests vibrating, which looked like it would be hard on them but, according to the doctor, is thought to be the gentlest way to deliver air. To help keep blood oxygen levels up, the air provided by the ventilator is mixed to a higher oxygen level than normal air.

So far Aiden has progressed a little better than Evan with regards to lung development. They were able to reduce Aiden’s oxygen content down to 21% (normal air level) within the first day. Evan took a little bit longer but also has been able to get down to normal oxygenation levels. The doctors use x-rays to see how well the structures of the lungs are developed and fill with air. Aiden’s x-rays have been looking clear, which from what the doctor says is good. Evan’s x-rays have shown that his right lung is clearer than his left. If all goes well, this should get better with time.

This morning, Dr Creswell decided to try to wean both Aiden and Evan off of the high speed oscillating ventilators and onto ventilators that assist in their breathing but allow Aiden and Evan to do most of the work of taking breaths. Doing this is somewhat trial and error. They remove the oscillating ventilator and use blood oxygen saturation levels to monitor how well the boys are doing.

Both Aiden and Evan are breathing on their own! The oxygen content of the air is elevated to help out but they are able to breath by themselves. We are so proud of our little fighters!

The third big worry at this point is brain hemorrhage. During the first 72 hours after birth babies this young may have bleeding in the brain. This bleeding can fill in around the voids inside the brain and prevent the brain from continuing its normal development in these areas. The result of this depends on what part of the brain the bleeding occurs in and the severity or amount of bleeding. Any bleeding that does occur opens up the possibility of mental retardation so we are very worried about this. Dr. Creswell has told us that it’s about a 50-50 chance that there will be some bleeding in babies this young. Typically there are no visual clues that bleeding has occurred unless the bleeding is very severe. Furthermore, there is little that can be done to relieve the bleeding as they are too young to undergo any kind of surgery or to even have a needle inserted to relieve pressure. The only way to tell if bleeding has occurred is to do a sonogram of the head. Because there is nothing that can be done if bleeding is occurring, this is not done until the period of greatest risk has passed. The boys are scheduled to get a sonogram done on Thursday so hopefully we will find out what we are dealing with then.

We’ve been asked the same questions by multiple people many times. I’ll attempt to answer some of those questions here:

Q: What caused Janel to go into labor? A: We don’t know. We asked Dr. Moreno this and she said there is typically no way of telling what causes a mother to start labor at an early date. We asked if the infection Janel had or the medicine given to treat it could have caused it and she said the infection may have played apart but she doubted this was the only reason and that the medicine, if anything, would have helped avoid preterm labor. She also stressed that it was not anything that Janel or I did that caused it. Personally, Janel and I think that the infection and medicine provided just enough stress to her very pregnant body to trigger some sort of survival reflex where her body decided it had to get rid of the babies. Friday her cervix was tightly shut and in less than 24 hours she was 5 cm dilated. So to us this seems like an abrupt decision her body made. I’ll be the first to say though we don’t really know what we are talking about here so take our explanation with a grain of salt.

Q: If the babies make it through the first X small amount of time will there chances of survival increase greatly? A: Does not sound like it. I’ve asked Dr Creswell these kinds of questions and the answer I’ve gotten is that there will be different things at different times that can go wrong. Right now we have the lungs, infection, and hemorrhage issues to worry about. Next week we will have a new list of things to worry about, and after that yet another list of thing, and so on and so forth. However, every day the boys make it and every day we can cross things that can go wrong off the list, the closer we get to getting through this okay. Unfortunately it does not look like an exponentially decreasing list of things that can go wrong but rather a linear progression.

Q: How long will they boys need to be in the NICU? Dr. Creswell has been very careful not set any false hope and expectation. The NICU is doing their best to simulate the environment the babies would have in the womb so it is reasonable to guess they will be there until they become full term, which is 15 more weeks in our case. However, they do not have a set amount of time they have to be in the NICU and the time here could increase if complications arise. The doctors will use the condition of the babies to determine when they are ready to go home. When we reach the point where we can do everything at home that the NICU is doing then we can take them home. We have been told by several people that it is not uncommon for one baby to be ready to go home considerably earlier than the other.

Q: What do the babies look like? A: I’ll post some pictures we’ve taken so you can get an idea for yourself. Their skin is very thin right now so they appear red in color. They both have bruising in spots from the delivery, especially Evan, though this is starting to go away already. Aiden appears further developed in the face. His nose is more rounded out than Evan’s (we think he has a Davis nose) and he is able to open his eyes. Evan’s nose is still somewhat sunk in and his eyes are still fused shut. Since Evan is longer and lighter, he looks thinner than Aiden. (We are all wondering how Evan got to be tall and thin as neither Janel nor I are very tall and I certainly don’t qualify as thin.) Evan has fuzz on his checks and chest that is real fine and hard to see unless you look close. We have not seen it for ourselves but the nurse says Evan has a little bit of blonde hair on his head.

Q: Is there anything we can do to help? A: The only thing we need right now are prayers. Janel and I really do appreciate all of the offers of help we have received. It truly gives us comfort to know that we have such a wonderful network of friends and family to help support us and Aiden and Evan. Janel will not be able to drive for 3-4 weeks due to her C-section, so she may be bumming rides to the NICU. Keep this in mind when reading the next question…
Q: Can we visit the babies? A: Yes. Two people at a time can be in the NICU to visit the babies. However, outside of grandparents, either Janel or I have to be with the second person.

Janel’s Progress

Janel has done very well recovering from her c-section. The first night she was on enough pain medicine that most of the evening was a blur for her. Janel’s mother, Mary, and sister, RaChel’, arrived Saturday night from Oklahoma and provided much needed emotional support for Janel and me both. Around 10:30 that night the nurse showed Janel how to operate the breast pump. Even at such a young gestational age they will give the babies breast milk in the first couple of days as there truly is nothing better for them. It was a blessing that Janel was able to pump 5cc on her first try. I think it provided some comfort for Janel that she was able to provide breast milk, which really is the only thing she can do for the babies in a direct way at this point.

At four in the morning, the nurse came and helped Janel get up out of bed for the first time and clean her dressings. After that was done we got Janel into a wheel chair and we both went up to the NICU together to see our boys together for the first time. While it was somewhat overwhelming to see their small bodies hooked up to so much equipment, both Janel and I were comforted to see them. All twenty toes and twenty fingers were present and both Aiden and Evan were actively moving their legs and arms. Seeing them move reminds you that though they are small they are alive. And, though there are many scary obstacles to overcome in the next several months, there are so many things that are already right to be thankful for. Aiden and Evan truly are special gifts from God.
The following day, Janel continued to recover. Her IV and catheter was removed in the late afternoon and by the end of the day Janel was up walking around some without help. On Monday, Janel was feeling even better. She has been walking around all day without any problems and could probably be discharged if the doctors would let her. The breast pumping has continued to be successful. She was able to get nearly 30cc this morning and more than 35cc this afternoon.

The Birth

Janel started having contractions around 2:30 am Saturday morning. Being only 25 weeks we both thought these were cramps brought on by a prescription that Janel had started taking the night before for an infection. However, as the morning progressed the pain associated with the cramping intensified and Janel called her obstetrician, Dr. Hansen around 10:00 am. Dr. Hansen advised us to go on in to the hospital to be checked out.

We arrived at Seton Medical Center around noon. Dr Moreno was the obstetrician on duty and examined Janel and found her to be 5 cm dilated. Upon discovering this they began giving Janel magnesium sulfate through her IV in the hope that this would reduce the amount of dilation and allow the babies to stay in the womb. Dr. Berry, our perinatalogist, was contacted and informed of the situation. After 30 minutes of this treatment Dr. Moreno measured the dilation at 6.5cm and she and Dr. Berry decided to adjust the levels of medication in hope that labor could still be avoided. Unfortunately, the next time Dr. Moreno measured the dilation it had increased to 7cm. At this point Dr. Berry decided it would be safest to get the babies out as opposed to continuing to let labor progress in hope the dilation would go back down.

Nearly immediately after the decision was made to give birth, Janel was taken to the operating room for her c-section. Because of the urgency, Janel was placed under complete anesthetics and I was not allowed to be in the operating room with Janel. However, they did allow me to wait outside in the operating area where I was able to see them carry the boys from the operating room to the NICU prep area. It could not have been more than five minutes between when they moved Janel into the operating room and when Aiden came out at 3:45. Two minutes later they rushed Evan to rejoin his brother in the prep room. From my spot in the hall way I could see the nurses and doctors huddled around each of the boys. There was a lot of beeping equipment and flashing red lights as all of the supporting equipment was brought up and connected. It was perhaps the most helpless feeling I have ever felt to watch my boys in the first minutes of their lives fight to stay alive.
After about 15 minutes, they allowed me to go into the neonatal prep room to see the boys for the first time. I couldn’t get a good look at Aiden but was able to get close enough to Evan for a good look. Because Evan was below Aiden in the womb, they had a harder time getting him out. As a result Evan had quite a few bruises on his arms and legs where they had to grab a hold and pull. On the portable incubator they had Evan in was a clock that showed the amount of time passed since birth. Evan was 19 minutes old. After a couple more minutes in the prep room they rolled both Aiden and Evan to the elevators to go up to the NICU and sent me off to the waiting room until Janel was stabilized in the recovery room.

Welcome to the World

On July 25th Aiden John Funkhouser and Evan Robert Funkhouser were born at 3:45 and 3:47 in the afternoon at Seton Medical Center in Austin Texas. Janel was 25 weeks and 1 day on the day of birth.

Aiden weighed 1lb 12oz and was 31.5cm in length. Evan weighed 1lb 9 oz but was longer at 33cm. At 15 weeks early, the boys will spend the first several months of their lives in the Neonatal Intensive Care Unit here at Seton Medical Center.

Janel and I will try our best to post updates on this blog as a means of keeping all of our extended family and friends up-to-date on the boys status.

David and Janel