June 2003 Archives

Respiratory - Today was not a good day for little Matthew. He is back on the jet ventilator today because his carbon dioxide levels were extremely elevated and they were not able to get them back down to an acceptable level while still being on the regular ventilator.

Heart - The doctor also confirmed that the PDA valve in the heart is NOT closed and they will have to perform surgery later this week. They would normally do the surgery sooner than later, but to top everything off, Matthew has an "unknown" infection. They are not able to determine what is causing the infection yet, so they have him on three different antibiotics until the test results from the blood and spinal fluid samples come back. The down side to waiting to do the surgery is that his lungs could start to fill with fluids.

Brain - On Friday, a second ultrasound was done to see if the brain bleed has worsened. The unofficial report on Friday was that it did not. However, today two different doctors could not agree on what they thought they were seeing, so they are waiting for a third opinion and we won't know until tomorrow the official results of the bleed.

New developments - His abdomen is very distended and is blackish blue in color. He looks like he is badly bruised and the color has darkened over the last several hours and may continue to get worse. According to the x-rays they are taking, they don't think it is a gut infection, however the other signs they are seeing look like it could be a gut infection. On a plus note, they are no longer suctioning dark black liquid that looked like motor oil from his stomach. It is now beginning to look a bit more normal but they are still going to watch it for further problems.

He used to be very active but he has been lying in his bed pretty limp and at times appears to be lifeless. He used to grab my finger but he doesn't have the strength to do that right now.

This has been a very emotional day for me and it has been extra hard since Jason is out of town. I was warned that Matthew was going to have hard days like this, but I don't think anything can really prepare you for it until you are there. It breaks my heart to see my baby so ill and laying there so helpless and fighting for his life...I know God is in control and he is a God that can perform miracles beyond our wildest imaginations. It is hard to go through these dark hours not knowing which way things are going to turn, but I find peace in God and in knowing that all of you are praying for our little one, Matthew (his name means gift from God). Thank you for your prayers and support!

Matthew went back on the traditional respirator at about 1:30 this morning. He made it almost 12 hours breathing by himself, but you could tell that it was pretty exhausting for him. When we were visiting him late last night, he had a number of apneic episodes. Most of the time he started breathing again on his own, but several times we had to shake him a bit. It was a scary thing to see, but the doctors weren't concerned. It's extremely common for a preemie this young, and as long as he doesn't stop breathing for more than a minute or so, it doesn't hurt him (it's no different than holding your breath for a minute). Even if shaking him didn't restart his breathing, they could bag him and intubate him in less than a minute.

Amazingly, Matthew was taken off the respirator today and put on a device called a CPAP. Being on the CPAP means he's breathing on his own now!!! Basically, it provides him air through something similar to a nasal canula, except it provides positive pressure to help him keep his lungs inflated. The respirators he's been on up until now required having a tube down his throat to his lungs. It's so great to see him without that big tube down his throat. Doctors have told us that it's really common to see young babies transition to the CPAP, only to have to go back onto a traditional respirator later. So although things are definitely looking up today, he may not stay this well.

Today is the last day for Matthew to be given his antibiotics...Yeah! Since there is a high risk of infection with several lines going through the umbilical cord after 7 days, the doctor inserted a PIC line into his right arm. This is done so they can remove the feeding line that is in the umbilical cord and continue feeding him intravenously through this new PIC line.

The heart medication (Indosin) that they were giving him to close the heart valve, known as the PDA (Patent Ductus Arteriosus) is not working. Several ECG's (Electrocardiogram) were performed and the results showed it open, then closed and then open again. The doctor's are still trying to determine whether or not they should give him another dose of Indosin or to perform surgery. They have already given him more doses than they normally would and their main concern of giving more doses is the side effects. One of the major side effects of too much Indosin is Renal (Kidney) failure.

It has been several days since Matthew has been stable enough to move him onto the scale to be weighed. Today they were able to get a weight on him since his birthday. He is currently weighing in at 623 grams (~1 lb. 5.5 oz). At birth he was 1 lb. 11 oz, so he has lost about 6 ounces. It is normal for any baby to lose weight after birth only to gain it back again in a couple of weeks.

On the more delightful side of things, Jason and I got to hear our son crying and cooing for the first time today since the tube of the respirator had been removed. He cried when we changed his diapers and to top it off he decided to pee on Jason's hand the second we opened his diaper. I have managed to change his diaper before without getting wet but I know my day is coming!

Today has been a relatively good day. They've been slowly weaning Matthew off of the respirator. They've lowered the pressure a bit more, and they've reduced the breathing rate from 40 breathes per minute to 28. They did another ECG and it looked like his PDA was open at one point and closed at another point. They're going to give him a third round of the medicine and see if they can close it for good. They'll do another ECG tomorrow to see how things look.

They're also planning on doing another brain ultrasound tomorrow to see what's happened with his brain bleed. The Neonatologist said that that haven't seen any signs that the bleed has gotten worse, but they won't really know until they do the brain ultrasound. Hopefully we'll know the results tomorrow.

After a recent chest x-ray, doctors said it looks like Matthew's air leak between his lungs and chest wall has disappeared. Because of this, they took him off the jet respirator and put him back on the traditional respirator. This is a good sign that his lungs are improving. He's been back on room air most of the time since he's been off the jet; and since he doesn't fight the traditional respirator as much as he does the jet, they haven't had to give him any sedatives all day. It's good to see him more active.

The also performed another ECG on his heart and discovered that the medicine they have been giving him to close the PDA valve hasn't worked. They're going to try increasing the dosage and give him another round. We should know tomorrow or the next day if it has worked. If it hasn't, surgery will be required to close the valve. This is generally not a big deal, and the doctors have said that babies generally handle this procedure very well.

Matthew looks a little more stable today. Jenn and I both got to change his diaper for the first time recently as well as take his temperature. He usually wakes up when we come by for a visit, and the last couple of times he's opened his eyes and looked at us.

We found out today that Matthew has had a small bleed into the ventricles of his brain. This type of brain bleed is extremely common in babies born this early. With the amount of bleeding so far, doctors have said that it will have virtually no impact on his brain. The doctors will be doing another head ultrasound on friday to see how things are changing. There are two cases they seem to be worried about:

1. Bleeding continues into the ventricles causing the ventricles to expand. This can apply pressure to the brain and could cause brain damage if not treated.
   
2. Blood could break through the ventricle walls and into the brain tissue directly.
   

Doctors also performed a chest ultrasound and determined that his PDA valve (the valve that shunts blood from the lungs to the body in utero) is open. This valve normally closes at birth so that blood can flow to both the lungs and the body. When left open after birth, blood flows in reverse through the shunt, sending too much blood to his lungs. This results in less blood going to his body. They're giving him medication now to help close the valve. We should know in a couple of days whether this medication is working or if the doctors will have to close it surgically.

The doctors stopped by today to let us know that during an overnight chest x-ray, they had discovered a leak between his lungs and his chest wall. They've switched him from a standard respirator to a "jet" respirator. Instead of the normal 15-20 breaths per minute on the regular respirator, the jet breathes for him at 450 breaths per minute (at a very low pressure). They've also had to put him back on oxygen. Hopefully this will resolve the problem.

We saw the doctor this afternoon, and there are some good signs. They gave him a dose of surfactant (a soapy substance in the lungs that helps prevent the alveoli from closing), and he immediately was able to start breathing room air (normally, premature babies are on high levels of oxygen for quite awhile after birth). The doctors were quite surprised that he was able to transition to room air so quickly. His heart is strong and his blood gas levels look really good.

For some reason that the doctors haven't figured out yet, Jenn went into early labor friday (June 20, 2003) morning. The doctors did what they could to stop the labor, but were unsuccessful. Matthew Clay Beaver was born at 8:50 AM, Saturday June 21, 2003. He weighed 1lb, 11oz and was 13 inches long. Jenn was only 24 weeks along (just over 5 months), so he's very early. He's stable for the moment, but things are critical at this stage.