March 12, 2008

All 3 babies are now in the same room!! All 3 babies ultrasounds of their heads came back negative.

Rylie is still doing great. He now weighs 3.08 lbs. They increased his feedings from 25 ml to 28 ml.

Ryan was started on caffeine yesterday because he was having some apnea episodes. The nurse said he had 3 apnea episodes last night, but he brought himself out of them without any help from the nurse. He also had his feedings increased from 28 ml to 30 ml. He now weighs 3 lbs 3 1/2 oz.

Reese is still on C-PAP on 21%. The nurse said they would probably keep her on it for a couple more days before they try taking her off of it again. Her echocardiogram showed that her PDA was starting to close so the dr said they would wait and see if it closes by itself. Her feedings were also increased to 22 ml. She now weighs 2 lbs 12 oz which is 1 oz above her birth weight! Her I.V. was also removed.

March 10, 2008

Today was our last day at the Ronald McDonald house. We are back home in Comanche.

Several people have asked me to EMAIL pictures to them. I have tried this, but I keep getting the EMAIL message returned with an error message stating that the file is too large for the mailbox. It is possible to download the images from the blog; all you have to do is place your mouse pointer over the image that you want to download; then, right click the mouse; then, choose "Save Link As..."; a window will pop up asking you what you want to call the file, and where you want to save it; then you point to the directory where you want to save the file; you can accept the default file name (which is the name that I gave the file on my computer), or you can change the name to suit yourself; then, click save, and the picture should download to your computer. This information is for Windows; I do not know what the instructions would be for anyone using a Mac.

The picture below is of Racheal and Randall in scrubs. Racheal got scrubs and a lab jacket from the babies, after they were born. She thought that it was a blast to be dressed the same as Daddy. She wore her scrubs and lab jacket to the hospital today, and she was the center of attention (something that she enjoyed immensely).

We have more good news today. Rylie continues to do well off of the CPAP. He is maintaining his blood oxygenation above 95% while breathing room-air. He has had his feedings increased again, and is tolerating feeds well. He had lost weight down to 2 pounds 13 ounces; but, today, he had gained back a little weight; he is now at 2 pounds 15 ounces. He had his repeat echocardiogram today, and it no longer showed a PDA; apparently, he responded well to the Indocin therapy.

All of the babies had an ultrasound of their brains today. The verbal report from the radiologist, is that neither Ryan nor Rylie had any evidence of bleeding into their brains. The report for Reese is not yet available.


The next two pictures are of Rylie. He still has a area on his head where an IV was; that should heal up in a few more days.






The next two pictures are of Ryan. He was taken off of his CPAP early this morning, and has been breathing room-air most of the day. When I was with him, he had two episodes where he dropped his blood oxygen saturation, and heart rate; both of those times corresponded to when I placed my hand on his back. I started touching him on his head, arms, and legs, and he did not have anymore episodes of desaturation or low heart rate. Because Ryan and Rylie are doing so well off of the CPAP, they have been moved to a different room.





The final two pictures are of Reese. As you can see, she is still on her CPAP. She maintains 100% blood oxygenation as long as she is on CPAP, but has trouble maintaining blood oxygenation without the CPAP. She had an ultrasound of her head, as well as a repeat echocardiogram, but the results of those tests were not available at the time of this posting. While I was visiting with Reese today, I put my hand on her back and had my thumb pointing toward her face; then she grabbed my thumb with both of her hands; and, she has a strong grip.


We plan to return to Forth Worth this Friday (March 14th), and we are hopeful that we will be able to stay at the Ronald McDonald House again.

When I was offering thanks to people yesterday, I was unable to mention everyone that has been helping us. Please know that we appreciate all of the help. I do need to mention my Mom, and give her an extra big "Thank you!" She kept Racheal so many times, even when she did not feel well herself. She and Daddy have been a big help.

March 9, 2008

Good news today.

Rylie got his last dose of Indocin yesterday afternoon. Today, Dr. Riley said that he could be tried off of the CPAP. When we got to the NICU, he was on Room Air, with no breathing support and his blood oxygenation was 100%. Since he finished the Indocin, he was restarted on his feeds, and has had them increased to the point that he no longer needs an IV. The picture below is Rylie off all CPAP. He still has his feeding tube.


This is a picture of Rylie's monitor showing that he has 100% blood oxygen saturation while breathing room air. That tends to indicate that the Indocin was successful in closing the PDA. He is scheduled to have a repeat echocardiogram tomorrow. He is also scheduled to have an ultrasound of his brain to check for bleeding in the brain (all three babies are scheduled for a brain ultrasound tomorrow). Bleeding in the brain is a real problem for infants that are born prematurely.


Shelley got to give Rylie a bath today, and then she got to hold him. The picture below is Rylie just before he got his bath.

This is Rylie, and Shelley is getting ready to give him a bath. The warmer is open and you can see that he is not on CPAP or any other ventilatory assistance. The whole time that he was getting a bath, and while Shelley was holding him, he maintain his blood oxygenation at, or above 95%. We got a good video of Shelley giving Rylie a bath, but we do not have the necessary equipment to be able to upload the video.


This is Shelley holding Rylie. He was opening his eyes and looking at Shelley; then, when I would say something, he would shift his eyes to look at me.


We were hoping to get to hold Reese today, but that did not happen. She was given a trial of being off the CPAP; but she got tired very quickly and had to go back on the CPAP. The nurse was concerned that she was still tired from breathing without CPAP, and she would not let us hold her. We had to settle for touching her inside her warmer. Her last dose of Indocin was around noon today. We are hoping that she has as good a response as Rylie appears to have had.


This is a picture of Reese's monitor. As you can see, her blood oxygenation was 98% with an FiO2 of 21% (the same as room air). It appeared to Shelley and me that she was stable enough to be able to be held, but the nurse was adamant about her staying in the warmer.


This is Ryan. He keeps having his feedings increased. Today, the feedings seemed to be responsible for his blood oxygenation dropping. While we were there, he was getting a feeding, and his blood oxygenation was dropping below 90%. Therefore, we chose not to try to hold him today. We will wait until he is more stable. His FiO2 is still at 21%, and he seems to be doing well.


A big thank you to my sister, Karen, and her daughter, Natalie. They came to the Ronald McDonald house to babysit Racheal while we went to the NICU to visit the babies (Karen helped take care of Racheal all weekend long). Also, another big thank you to Karen; yesterday, Karen brought the makings for homemade burritos. We ate that tonight for supper, and it was excellent.

Jan Johnson came to see us yesterday. She and my father are cousins. We want a big thank you to go out to her and Aunt Lib; they brought a present that had something for the babies, something for Racheal, and something for us. They were very happy that we were able to get them into the NICU so that they could see the babies. Jan lives in Colleyville, and has told us to call her if we need anything.

We leave the Ronald McDonald house tomorrow and travel back home. We want to be able to give Racheal as stable a home-life as is possible; we are going back home so that she can go to school on Tuesday, and Faith Weavers on Wednesday. We plan to return to Fort Worth next weekend.

The Ronald McDonald house is a wonderful place. We are very thankful that we have been allowed to stay here.

Please keep praying for us all. The babies continue to improve, but still have a long way to go. Please pray that Shelley and Racheal and myself will continue to be safe while we travel between Fort Worth and home.

March 8,2008

Below is a picture of Rylie. The nurse is getting a blood sample to send to the lab for analysis.

Rylie did not like getting his blood drawn. After the blood draw, Shelley changed his diaper, and that made him even angrier. You can see in the picture below that he pitched quite a fit.


The next picture is Reese. She is off of her CPAP in this picture. She was very active and was scooting down to the end of the warmer.

You can see that from the picture above, to the time of the second picture below (which was maybe 15 seconds), she has completely scooted off of the pillow.

Reese has started being cycled off of her CPAP. She can be off for as long as 6 hours, if she tolerates it; then she will be back on the CPAP for 6 hours. Thus far, she has only tolerated being off of the CPAP for about 4 hours; then she gets tired and her blood oxygen saturation starts to drop. We were hoping that we would get to hold her today while she was off the CPAP, but another baby in the room needed emergent placement of a chest tube, and the room was closed while that procedure was being performed. By the time that the room had re-opened, Reese was having apneic episodes and had to be put back on the CPAP. Once she was back on her CPAP, we were not able to hold her, so we missed that opportunity today. As soon as she was back on her CPAP, her blood saturation went back up above 95%. Without all the tubing, she appeared to be quite peaceful and was resting easily in her warmer.


Shelley got to hold Ryan today for about 15 minutes (see the picture below).

After Ryan was put back into his warmer, Randall got to change his diaper.


Rylie and Reese were getting the last dose of Indocin while we were visiting today. We will have to wait to see if it was effective in closing the Patent Ductus Arteriosis. They were getting reduced feeds, and had to have an IV restarted for fluid support.

Ryan is tolerating his feeds well. Without the tube in his throat, he is better able to protect his airway; so, even if he does spit up, he is better able to prevent aspiration of the spit up. Because the tube goes between the vocal cords, he had a very coarse cry today. He did well while Shelley was holding him. He was opening his eyes quite a bit today. He seemed to be taking a good look around.

Karen, Randall's sister, came to the Ronald McDonald House today and stayed with Racheal while Randall and Shelley went to see the babies.

March 7, 2008

We traveled back to Fort Worth today. We are staying in the Ronald McDonald House, which is a few blocks from the hospital. A big thank you goes out to my sister, Karen, and her husband, Steve, and their daughter, Natalie, for coming to the hospital to babysit Racheal while we went into the NICU.

Rylie and Reese both had echocardiograms and it showed that both of them have a Patent Ductus Ateriosis (PDA). See yesterday's post for descriptions of PDA and its problems. They are going to be started on IV Indocin, which will hopefully cause the Ductus Arteriosis to close. The Indocin causes a decrease in prostaglandin production, which is resposible for keeping the ductus arteriosis patent. Hopefully, the decrease in the prostaglandin production will cause the ductus to close. If the Indocin does not work, they can repeat the dosing, but there is little hope that a second dose will be any more effective than the first dose.

If the Indocin does not work, there are two options. The first option is to do nothing, and wait to see what happens. The second option is to do surgery to manually close the ductus arteriosis. The doctor feels that as long as the babies are stable there is no need to do the surgery; he prefers to provide whatever oxygen support is necessary for the babies to be stable, and just wait for the ductus to close itself. This could take days; it could take weeks; or, it can even take months. As long as the babies are stable, there is no reason to do the surgery.

There is a down side to giving the babies Indocin. Prostaglandin production is necessary in order to maintain adequate blood flow to the stomach and intestines; prostaglandin production affects blood flow to the kidneys. Indocin decreases prostaglandin production and therefore, it alters the blood flow to the gut and the kidneys. As a result, Rylie and Reese have had their feedings decreased to a minimal amount, and an IV has been restarted for fluid support.

I spoke with Dr. Riley and asked about a PICC line for Rylie and Reese. Dr. Riley prefers to use regular IVs unless the PICC line is absolutely necessary. PICC lines come with a greatly increased risk of infection in newborns, and especially in premature newborns. Babies have very little reserve capacity, and any infection can take a baby from stable to unstable in a very short period of time. Another problem with a PICC line, is any insertion site for a PICC line would mean that the site could not be used for any other IV or other line. So, if the babies needed a surgery, in say 2 or 3 weeks, that would be one IV site that would not be available for the surgery.

Now for some specifics; Rylie is doing well. He is still on CPAP at 21% FiO2, and maintains blood oxygenation above 94% all the time. He is able to tolerate being off of his CPAP for short periods of time, but still needs CPAP for now. Hopefully, the Indocin will cause closure of the PDA and his ability to oxygenate will improve and he will no longer need the CPAP.

Reese was attempted to be weaned off the CPAP last night. The plan was for her to be off the CPAP for 6 hours and then back on the CPAP for 6 hours, and cycle in that fashion. When she was taken off the CPAP, she did well for about 3 hours, and then she started to have problems with a low heart rate and low blood oxygenation. They put her back on the CPAP and everything was okay. Because of her inability to stay off the CPAP, Dr. Riley listened to her heart again and he heard a murmur, and that prompted him to get the echocardiogram that showed the PDA.

Ryan has been extubated (he has been taken off of the ventilator and his breathing tube has been remove), and he is back on CPAP. I asked Dr. Riley what he thought about the thick material that was being suctioned from his tube. Dr. Riley seems to think that this represents gastric reflux and aspiration. Even though Ryan had a tube down his throat and into his trachea, the tube did not have a cuff on it, so it was possible for any reflux, or spit up, to seep around the edge of the tube and get into the lungs. So his feedings have been changed so that he gets his feedings over several hours, instead of as a single bolus. This seems to have stopped the spitting up, and hopefully, will prevent further aspiration, and allow him to heal. Dr. Riley says that he heard a soft murmur on Ryan a few days ago, but was unable to hear any murmur today, so he does not think that Ryan has a PDA. Ryan in now back on CPAP and is doing well. Most of the time his FiO2 is at 21% (the same as room air), but whenever he gets active or needs care from the nurses, his blood oxygenation starts to drop and his FiO2 has to be increased for a short period of time. If he does not have a PDA, and if he can gets his feedings without further aspirations, he should get better.

March 6, 2008

There is not much change today. All of the babies have a heart murmur, but is seems that Rylie has the loudest murmur. Rylie had an Echocardiogram today to evaluate the murmur. An echocardiogram is a method of using ultrasound to evaluate the structures of the heart and surrounding tissue. Rylie's echocardiogram showed that he has a Patent Ductus Arteriosis (often abbreviated PDA) . The Ductus Arteriosis is structure that allows shunting of blood between the pulmonary artery and the aorta; this is necessary during fetal development, but it should close after birth. If it fails to close, or if it fails to close completely, it is considered to be "patent" and therefore a Patent Ductus Arteriosis. There is a fairly decent explanation of ductus arteriosis function at:

http://en.wikipedia.org/wiki/Ductus_arteriosis

This site also explains some of the problems associated with a patent ductus arteriosis. A more complete explanation can be found at:

http://en.wikipedia.org/wiki/Patent_ductus_arteriosus

There are several treatment options. Nothing can be done, and the PDA should close on its own; but it may take a little time. It can be treated with Non-Steroidal Anti-Inflammatory Drugs (often abbreviated NSAIDs); the most common NSAID used is Indocin. NSAID's work by reducing prostaglandin synthesis. Prostaglandins are needed to keep the Ductus Arteriosis patent. This is why NSAIDs are not used in the third trimester of pregnancy, since it can cause premature closure of the Ductus Arteriosis. Right now we are waiting on the doctor to decide what treatment, if any needs to be done right now.

Reese continues to do well with her CPAP and feeds. Her bilirubin level continues to drop and she no longer needs to be under a blue light.

Ryan is still on a ventilator. He is still having thick lung secretions that need to be suctioned periodically. He is tolerating feeds well, and he is no longer getting phototherapy.

March 5, 2008

The babies are doing well today.

Rylie had a little trouble last night. He started having apneic episodes and needed to be put back on the CPAP. He is doing well with the CPAP; he is on 21% FiO2 (the same as room air), and his blood oxygenation is staying above 98%. We do not know when the doctor may try to take him off of the CPAP again. He is no longer getting phototherapy. He has had his feedings increased again, and he is doing well with his feedings.

Reese is maintaining her blood oxygenation with her FiO2 of 21% on the CPAP. If she continues to do this well, the doctor may try to take her off of the CPAP sometime in the next day or two. She is doing well with her feedings, and no longer needs IV fluid support. She did lose some weight yesterday. Overall she is doing well. She is no longer getting phototherapy. She is stooling regularly, and her bilirubin level continues to come down.

Ryan has been intubated again. He does well when he is intubated, but he just is not doing well with CPAP. He is on low settings on the ventilator; he just seems to need some extra help breathing right now. He is tolerating feeds well. His bilirubin went up a little overnight, but he has not been started back on phototherapy at this time.

March 4, 2008

We received good news today.

Rylie has been keeping his blood oxygen level up with the CPAP with an FiO2 of 21%, which is the same as room air. Today, the CPAP was removed; he seemed to struggle a little at first, but then he settled down and is doing fine. He is maintaining a blood oxygen saturation of more than 95% on room air and he is no longer on CPAP. He had his feedings increased again today, and he is doing well with that. His bilirubin went back up some, but he has not yet been put back on phototherapy. Rylie seems to be having problems keeping an IV. There has been some discussion of giving him a PICC line. PICC stands for Peripherally Inserted Central Catheter; it is inserted in the arm and then fed up through the venous system until it is close to the heart. PICC line in adults is done regularly and is a very low risk procedure. The doctor seems reluctant to give Rylie a PICC line, so I am assuming that it has a higher risk in babies. The doctor thinks that if Rylie can keep tolerating his feeds, he will not need an IV any longer.

Reese is doing better. She is still getting phototherapy, but her bilirubin has been coming down. She is tolerating her feeds and she gained a little weight today. She is still on CPAP, but her FiO2 is less than 25%. Her doctor says that if she can get down to 21% for 2-3 days, they will try to take her off of the CPAP. She has had a few apneic episodes, but only one of those required stimulation by the nurse.

Ryan is doing better. His FiO2 on the ventilator was 21%, so they extubated him (they removed the breathing tube). He is back on CPAP, but his FiO2 is still high. The doctor says that his blood gases are borderline; they are not good, but they are not bad. If his blood gases do not improve, they may need to intubate him again. He is having thick secretions from his lungs, so they are giving him breathing treatments (similar to what is used for asthma patients). Ryan is tolerating his feedings well. He has not gained any weight yet, but last night he had his first stool; he has been stooling regularly since then. His bilirubin level has come down.

People have been asking when the babies will get to come home. There is no easy answer to that question. There are several milestones that the babies have to pass before they can come home.

The first milestone is that they need to be able to breath room-air, unassisted, and maintain their blood oxygenation levels. Thus far, Rylie is the only one who has passed this milestone. Reese seems to be getting closer, but Ryan still has a way to go.

The next milestone will be the ability to maintain their body temperature without needing an external heat source. Until they can do that, they will need to be kept in warmers. Part of being able to maintain body temperature is dependent on having adequate amount of calorie intake. Right now they are tolerating feedings enough that they are getting close to the point of no longer needing an IV for fluid support, but the nutrition is not yet adequate for them to maintain body temperature.

Another milestone will be the ability to nurse adequately. Right now they are being fed through a tube. They have not yet developed the ability to nurse. When they get to the point that they start to nurse, it often takes a while for the coordination to be adequate. During that time, they will nurse and get some nutrition; but nursing will tire them out, and they will only nurse a small amount each time. During this time, they will continue to need to get feedings through a stomach tube in order to supplement their nutritional needs.

The final milestone will be a repeat of the first milestone, and that is the ability to maintain their blood oxygenation level. They will have to pass what is called the "Car Seat Test." The car seat test is performed by placing the baby in the car seat for 90 minutes; during that time, the baby has to be able to keep his head up, and he has to be able to maintain his blood oxygen saturation for the entire period. Until the babies can pass the car seat test, they will not be able to come home.

Many of you may be wondering how long all of that may take. The best estimate for when the babies get to come home is the original due date of May 14th. Is it possible for the babies to progress faster and come home sooner? Yes, it is, but only time will give us that answer.

When the babies do come home, we will have our hands full. We are wanting volunteers that can come help us out. If you are interested, contact Christy Meinecke for further information.

March 3, 2008

The above picture is Ryan. Yesterday Ryan was intubated, and he was so tired that he was letting the ventilator do all the work and he was resting. Today, he is taking breaths between the breaths that the ventilator is giving him. When he was first put on the ventilator his FiO2 was almost 50%; today, his FiO2 was 27% (see previous posts for explanation of FiO2). He is keeping his blood oxygenation levels up very well. The plan is to try to slowly wean him off of the ventilator today and try to extubate him tomorrow. He continues to tolerate his feedings, but he has not yet had stool.
The above picture is Reese. She is doing quite a bit better today. She has been having problems keeping her blood oxygen saturation up, and she has needed FiO2 above 45% most of the time. Today, her FiO2 was 27% and she was maintaining her blood oxygenation above 88%. She is tolerating her feedings, and had her feedings increased again today. She has started having stools. Her bilirubin level has come down from 10.6 to 8.4. Rylie gained weight between yesterday and today. His weight was up 30 grams, which is just a little bit more than one ounce. Ryan and Reese have not yet gained any weight. Babies loose weight after they are born; this is normal. Ryan and Reese have lost weight, but they have not yet gained any weight.

The above picture is of Rylie. He has his FiO2 at 21%, which is the same as room air, and is maintaining his blood oxygenation above 94%. He is still getting CPAP. The nurse says that when he is getting a bath, or some other care that requires removal of the CPAP, his blood oxygenation drops down into the mid 80's; so, he still needs the CPAP for now. He was having some problems with his feedings, so they were stopped for a while and then restarted at a lower rate. His bilirubin level has come down, so he no longer needs phototherapy. His cap was off today, and we finally got a look at his hair; as you can see he has dark hair.

Randall got to hold Rylie today (see pictures below). The whole time that Randall was holding him, his blood oxygenation stayed at, or above 95%. Rylie opened his eyes for a short time while Randall was holding him. Randall did not want to give him up so that he could go back into the warmer.




Today was very emotional for us. Shelley was released from the hospital. We came home; we needed to spend time with Racheal, and we needed time to rest. We were glad that Shelley was doing well enough to be able to come home; but it was very stressing to have to leave the babies.
Please pray that God will help provide financial help. The babies do not have any insurance, and the longer they are in NICU, the bigger the bill will be. We do not qualify for any of the financial assistance that the hospital has, and we do not have the funds to be able to pay the hospital bill. The babies may qualify for SSI since they were born premature, but they might not qualify because their weight is too high.

March 2

The picture above is Randall checking Ryan's temperature.


We got to interact a little more with the babies today. Ryan started having trouble keeping his oxygen level up last night, and it kept getting progressively worse. A chest X-ray, that was done today, showed that his lungs have not improved compared to the chest X-ray that was done at the time of his admission. He had an FiO2 of 60%. After he was intubated, the ventilator settings give him a breath, and then there is a pause for him to be able to take a breath; he is not taking any breaths. It seems that he is so tired out that he is letting the ventilator do the work, and he is resting. After he was intubated, they were able to start decreasing his FiO2. He is down to 47%. With him being intubated, his cap is off and we can finally see that he has quite a bit of dark hair. I got to check his temperature, and Shelley got to change his diaper.

The picture below is Randall checking Reese's temperature.


When we went to see Reese, they were changing her diaper and changing out the CPAP tubing. So, we got to see her without her cap or eye covers, and we just happened to get a picture with her eyes open (see picture below). She responds to our voices and opens her eyes. She had her feedings increased again today, and she has had poopy diapers (see previous post as to why this is important for elevated bilirubin levels). She is still getting phototherapy because she is jaundiced. She is doing better with her oxygenation. While she was off of her CPAP, the nurses were just blowing oxygen toward her face, and her blood oxygen saturation stayed above 85%. This morning, Shelley got to take her temperature; and she got to help change out the bedding. This evening, I got to take her temperature, as you can see in the picture above. Reese had an apneic episode this morning and was started on a caffeine drip.

Reese with eyes open.

The picture below is of Ryan. This was taken this morning before he was intubated. Ryan has still not had a bowel movement. He is having some problems with swelling in his hands and feet, but that started to improve after he was intubated.

Rylie is doing well. He has his feedings increased again today. Last night the milk was not emptying from his stomach. He had not yet had a bowel movement, so they gave him a suppository. He had a bowel movement, and his stomach started emptying again. He is only on 21% inspired oxygen, which is the same as room air.

This picture is of Rylie. He is still getting CPAP.
Shelley continues to improve. She is becoming more active with less pain.

Mee-maw and D-dad came to visit today, and they brought Racheal. Racheal did not get to see the babies, because siblings are not allowed in the NICU until RSV season is over. We took Polaroid pictures of her, and the nurses taped the pictures to the incubators so the babies can see them. Mee-Maw did not get to see the babies because she is getting over a cold. D-dad got to see and interact with the babies.

March 1, 2008

We have some mixed results today.

Lets start with Ryan. He is still on his CPAP, but they have needed to increase the oxygen concentration (oxygen concentration is expressed as Fixed inspired O2, which is abbreviated FiO2, where the O2 represents elemental oxygen). He was 35% FiO2 last night, and today he is close to 40% FiO2. He tolerated his feedings well, yesterday, and today they will increase the amount of his feedings. Whenever one of the babies is able to increase the food intake, there is a decreased need for the IV nutrition; so more food means less IV support; less IV support translates to a point and time (hopefully) when the IV can be discontinued.

Reese was continued to be weaned from the ventilator last night, and early this morning she was extubated (they removed the breathing tube). She is now on CPAP, just like her brothers, but her FiO2 is almost 50% right now. She tolerated her feedings, yesterday, and is going to have her feedings increased today, as well. Reese's bilirubin level was elevated today, and she has been started on phototherapy (blue light therapy).

Phototherapy uses a blue light shining on the skin. The bilirubin gets to the skin, via the blood supply, and it absorbs a specific wavelength of light; this causes the bilirubin to become partially oxidized, which makes it more water soluble. Once it reaches a point of oxidation that is easily water soluble, it can be eliminated by the kidneys. Usually bilirubin is removed by the liver, but the liver depends upon stool formation in order to be able to dump the bilirubin; babies sometimes take several days to produce stool; this is especially true of premature babies; because they are getting fed slowly, they have not yet produced any stool, so their livers cannot dump the bilirubin. I will attempt to explain this more a little bit later.

Rylie had an apneic episode last night (he quit breathing); this is not uncommon in premature infants, but this was the first problem that he has had. He had to be stimulated by the nurses last night in order to get him breathing again. He has had a few more apneic episodes this morning, but he has not needed any further stimulation in order to start breathing again. Yesterday his FiO2 was 21% (the same as room air), but during the night it was necessary to increase his FiO2 to 35%. His bilirubin level is elevated, so he is now getting phototherapy.

When we went to the NICU this morning, part of it was closed because of an admission, so we only got to see Rylie.

We went back this afternoon, and we got to see all the babies.

Rylie is doing well with his increased feedings, but his FiO2 has been increased again to almost 40%. The nurse said that he has not had any more apneic episodes since this morning.

Reese is tolerating her CPAP and feedings. Her FiO2 is now down to 40%.

Ryan has the amount of his feedings doubled today and seems to be having some trouble with that. Whenever the body digests food, it has to shunt blood away from other body areas and shunt blood to the bowel. This puts an increased burden on the heart and requires increased oxygen demand. Ryan is now close to 50% FiO2. If he gets to 60% FiO2, they may need to intubate him. Part of the problem centers around the CPAP. Because the CPAP constantly blows pressure into the back of the nose and throat, it tends to blow air down into the stomach. This causes stomach distention. Stomach distention pushes up on the diaphragm and that limits how much the lungs can expand. Limited lung expansion means that the lungs are not functioning at their full capacity, but the CPAP helps to offset this by making it easier for the baby to take a breath. So, the CPAP is a mixed blessing.

Because the babies are getting phototherapy, they have special eye coverings. Then the CPAP covers most of the rest of their faces so it is hard to see much of anything today. That, combined with the fact that we forgot to take the camera with us today, means we did not get any pictures today (sorry about that).

Ryan did not have eye coverings because he is scheduled to start phototherapy, but it has not been instituted yet. He opened his eyes for us today. He did not open them enough that we could tell anything about eye color, but he was looking at us and his eye tracked us when we moved (that is a good sign of higher brain function and cranial nerve function).

Okay, lets get into bilirubin and a few other things, shall we. Prepare yourselves; I am never one to give a simple answer (a fact to which Shelley will attest). I want to suggest that you go to www.m-w.com. There you can enter a word, click the box for the Medical Dictionary, and it will give you definitions for most of the terms that you will encounter in this post.

Before babies are born, they produce fetal hemoglobin which, is composed of 2-alpha units and 2-F units (the F stands for Fetal). This is very important because the fetal hemoglobin binds oxygen more tightly than adult hemoglobin does; therefore, the oxygen from the mother's system (adult hemoglobin) will release oxygen at the placenta, and the baby's system (fetal hemoglobin) binds the oxygen, and the oxygen is then transported to the rest of the baby's system. Fetal hemoglobin also releases oxygen better when it gets to a high Carbon Dioxide environment (Carbon dioxide is CO2, and is the waste product of normal cell function). So, when the oxygenated fetal hemoglobin gets to an area that has elevated CO2 levels (at the capillaries), it releases its oxygen to the cells in that area. This is all very important for the baby to be able to get the oxygen that he, or she, needs.

Once the baby is born, and begins to breath, things change considerably. Now the baby is breathing air and getting a higher concentration of oxygen than what was available from the mother's circulation. The fetal hemoglobin continues to bind the oxygen tightly, as it did before birth. However, the CO2 content at the capillary level is less than before the baby was born. The main reason for this is because the CO2 is easily dissolved in the fluid portion of the blood (the hemoglobin does bind CO2 weakly, but it is not a major factor in the transportation of CO2 throughout the body). Because the baby is breathing and blowing off CO2, CO2 levels are diminished throughout the baby's entire system. This means that there is less CO2 levels at the capillaries; and less CO2 means that the fetal hemoglobin does not release the oxygen as well in the area where the cells need it. The cells are not starved for oxygen, but as you can see, fetal hemoglobin is not the best hemoglobin for a breathing baby. Shortly after the baby is born, the baby's system recognizes the change, and stops producing fetal hemoglobin, and starts producing adult hemoglobin (adult hemoglobin has 2-alpha subunits and 2-beta subunits).

As the adult hemoglobin is produced, the fetal hemoglobin starts to break down. When the hemoglobin breaks down, it binds with a protein in the blood stream (Haptoglobin), which transports it to the liver (haptoglobin bound hemoglobin is a short term storage solution). The liver metabolizes the hemoglobin to bilirubin (this is unconjugated bilirubin at this point; conjugated bilirubin will be discussed a short while later) and releases it back into the blood stream. Unconjugated bilirubin is not water soluble, so it is bound up by a different protein that is called Albumin. The albumin bound bilirubin is a medium term storage option; it keeps the bilirubin suspended until such time as the liver gets an opportunity to metabolize it further. The liver will take up the bilirubin and attach a modified glucose molecule to it, at which point it becomes conjugated bilirubin. Conjugated bilirubin is water soluble and can be transported in the blood without needing to be bound to any protein molecules. Once it reaches the kidneys, conjugated bilirubin can be acted upon by a specific enzyme that turns it into Urobilinogin, which is even more water soluble, and this can be secreted by the kidneys. However, this is a minor route of elimination of bilirubin. Most of the conjugated bilirubin gets excreted by the liver into the bile and passed into the duodenum (the very first part of the small bowel). Then the bilirubin passes down througn the small bowel. As the bilirubin passes through the small bowel, the modified glucose molecule gets digested off, and we once again have unconjugated bilirubin. When it gets to the lower end of the small bowel (the area knows as the ileum) the bilirubin gets reabsorbed into the blood stream. Bilirubin has an iron atom at its core, and the reabsorption of the bilirubin represents one of the body's mechanisms to conserve iron, and allow the liver to process it to a slightly different form that can once again be utilized by the body for blood formation (and other uses).

In order for the bilirubin to be eliminated from the body, there has to be enough material moving through the bowel so that the bilirubin gets carried past the small bowel without getting reabsorbed. Since the babies are only getting small feedings, there is not yet a sufficient quantity of material to move the bilirubin through the bowel quickly enough to prevent reabsorption, and so a large quantity of the bilirubin gets reabsorbed into the blood stream. This is the beginning of the problem.

There is a limited amount of albumin, therefore there is limited ability for the unconjugated bilirubin to remain suspended in the blood stream. The liver has a limited ability to conjugate the bilirubin; this is due to a number of reasons. Part of it has to do with the change in blood flow as the baby converts from fetal circulation to adult circulation. Part of this has to do with the fact that, since there is a high demand for new adult hemoglobin (and therefore, new Red Blood Cells [RBC's]), the liver, for a short time after birth, actually spends a good deal of time and energy producing new RBC's (the spleen also acts as an area of new RBC production during this time). As a result, the bilirubin starts being deposited anywhere that it can go. The unconjugated bilirubin is not water soluble, but it is lipid soluble (it can be dissolved in oil and fat). So, the bilirubin starts to collect anywhere there is a high concentration of lipids. This is not a problem for a typical fat cell (adipocyte or adipose tissue), but it is a problem for the brain.

The insulation around the neurons of the nervous system is composed of a highly specialize cells; in the central nervous system, CNS, which is the brain and spinal cord, these cells are oligodendrocytes; in the peripheral nervous system, those cells are Schwann Cells. These cells provide an insulating wrapping that lets the nerves function properly. The wrapping around the nerves is called Myelin, and the major component of myelin is Sphingomyelin. Sphingomyelin is compose of a modified lipid (0il).

Because the unconjugated bilirubin can dissolve in lipids (which are fats and oils), it can dissolve into the brain tissue. This can lead to a problem know as Kernicterus. Kernicterus is best known to occur with erythroblastosis fetalis, which is something that occurs as a result of ABO incompatibility between the mother and the baby; but erythroblastalis fetalis is not the only thing that can cause a high enough bilirubin level that can lead to kernicterus. Thankfully, phototherapy has been available for many years and is a very effective means of making the bilirubin more water soluble, so that it can be more easily eliminated from the baby's system. I will not bore you the details of the biochemistry involved in the photo-oxidation conversion reactions of bilirubin; you can look that up on the internet if you are so inclined.

Okay, the physiology and biochemistry lesson is complete for now.

I can convey many things to you in my words, but I have yet to find a means to be able to communicate just how much I love these little ones. It sometimes makes me cry when I see them and know that they are isolated, and that all I can do is touch them occasionally. Even touching them has to be soft because their skin is so sensitive, that anything more than light touch can be painful. I know that everyone is praying for angels be around them and to hold them and to comfort them, but it still hurts to not be the person that is able to do that.

I will go ahead and post this today so that you will be able to get some new information.

The babies are here!

Shelley got to hold Rylie today.

Reese is still intubated.
Ryan on his CPAP.
Rylie last night. He has a pink hat because that was the only one they could find that would fit.

Reese last night.

Ryan last night.

Shelley started having more bleeding yesterday, to the point that she needed blood transfusion. For the sake of her health, the decision was made to go ahead and do the C-section and deliver the babies. We have 2 boys and one girl; their information is as follows:

Rylie Mark Barron was born at 6:32 PM; he weighs 3 pounds and 2 ounces, and is 16 inches long.

Reese Mackenzie was born at 6:34 PM; she weighs 2 pounds and 11 ounces, and is 15 inches long.

Ryan Matthew was born at 6:35 PM; he weighs 3 pounds 5 ounces, and is 14½ inches long.

Rylie is doing the best. He was crying in the delivery room. He is on CPAP (Continuous Positive Airway Pressure), which helps him breath. He is on 21% oxygen content, which is the same as room air oxygen concentration. He is getting nutrition through his IV, and they are going to start feeding him through a tube today.

Reese aspirated blood during the delivery and was unable to breath on her own. She was intubated in the delivery room. She remains intubated today. When she is resting, she only needs 28% oxygen; but, anytime she gets active, or the nurse has to change her diaper, or perform any other care, her oxygen levels start to fall, and she needs to have her oxygen increased to 40% in order to keep her oxygen saturation levels in the 90's. She is getting nutrition through her IV and she is going to start getting feedings today, as well. Reese has had 2 doses of surfactant (the surfactant is what the lungs need to work properly).

Ryan is also on CPAP, but he needs 27% oxygen. He started on CPAP last night, after the delivery. However, during the night, his oxygen levels started to fall and he had to be intubated. He was given a dose of surfactant, and a short time later, they were able to remove the breathing tube and put him back on CPAP. He is getting IV nutrition and will start feedings today, also.

Shelley got to hold Rylie for about 10 minutes today. We did not get to hold Reese or Ryan, because they were not stable enough. The nurses tell us that each baby has quite a personality, so we are likely to have our hands full.

Shelley is doing well. She able to control her pain with oral medication, and no longer needs IV pain medication. She is eating a full liquid diet without problems. She is able to get to the Neonatal ICU (NICU) in a wheelchair. She is able to walk around in the room with minimal assistance. She still gets very tired very easily. We appreciate all of your concerns, but please keep the telephone calls to a minimum.

I want to repeat a prior request. It is stressing to not be able to be near the babies all the time. We would like for everyone to pray for angels to hold and protect the babies when we are not there.

I had a little trouble loading the images so they are out of order. The bottom set of images are from last night, and the upper images are from today.

In the hospital

I woke up around 3 this morning & was leaking fluid. We threw things in bags since I was waiting until after the shower this Saturday to finish packing & put it into the van. Thank you so much to Christy Meinecke for coming over & staying with Racheal until Meema could get there. You are a life saver!!! We went to Stephenville hospital & they said it was amniotic fluid & I was having contractions. They did a sono & the babies all still looked good & had fluid around them. So then we headed for Ft Worth. They said the fluid was coming from Baby A which is on the bottom. They gave me a Toradol injection & that stopped the contractions. I am on IV antibiotics. So looks like I am now a resident of Ft Worth for a while. Hopefully the fluid will stop leaking. As long as there is enough fluid they are staying put. The dr said our goal is to make it to 32 weeks (Iam 29 today), then if we make it that far, then we will shoot for 34 weeks. Please pray for us that I can keep them in there as long as possible. Also please pray for Racheal during this time. She is confused because this was not the plan.

Also for those of you in Comanche, the shower is still on. Racheal is going to open the presents & they are working on setting up a web cam so I can watch.

Thanks for your prayers!!

We have a date!!

I had another dr's appointment today. The babies are getting big & crowded. Baby A weighed 2 lb 14 oz, B 2 lb 9 oz, C 2 lb 12 oz. The dr was amazed that I am still able to walk. I am carrying almost 9 lbs of baby & about 10 lbs of fluid & 3 placentas. It feels like a lot more. The c-section is scheduled for April 14th (2 days after Racheal's birthday). I have gained 40 lbs now. They did all the 28 week labs (I don't know exactly what that is), I also did the glucose test again & I got my Rhogam injection yesterday. That is because my blood type is negative. I go back to the dr March 3 & they will check my cervix to see if anything is happening yet. Only 8 more weeks!

3D Sonogram Pictures

They were able to get pictures of Baby A & C's face, but baby B did not cooperate. In the picture above of baby A, it has it's hand in front of it's mouth & then there is another babies head up against it. I am 25 weeks today. Only 11 more to go!!!!

Test results

The nurse called & no gestational diabetes. The results were 120. I will have to do the test again when I go back next month. I guess they do the test twice on multiples.

Only 12 more weeks to go!!!!

I am 24 weeks today! I had a great dr's appointment. The babies all looked great. Baby A which is on the bottom weighs 1 lb 9 oz, Baby B on the left weighs 1 lb 6 oz & Baby C on the right weighs 1 lb 5 oz. I will get the results of my diabetes test tomorrow. We also toured labor & delivery at the hospital today. It was really nice. I don't have to go back to the dr until Feb 18.

Thanks to everyone that has been helping us by cooking & taking Racheal to her activities!

Test results

My fibronectin test results were negative. Yeah!!! So that means no labor anytime soon.

Cervix of Steel!!!

We saw the dr yesterday. He said I had the cervix of steel. He said he had never seen a cervix this good ever in a triplet pregnancy. They also did the fibronectin test & we should have the results later today. I gained 3 1/2 lbs (I think) for a total of 25 1/2 lbs so far. I go back on the 23rd for the diabetes test. They will also do another sono & measure them. Yeah!!! Only 14 weeks to go!

Shelley

21 weeks!!!!!

Only 15 more weeks to go. I had a dr's appointment today. My cervix still looked good. I go back next Thursday for another cervix check & a fibronectin test. The test will tell him if I am at risk for preterm labor. I gained 4 lbs for a total of 22 lbs.