Emily Gets Off of the Jet!

Emily had a surprisingly good day today. When we went into the hospital this morning, we she wasn't in her usual spot. After a brief panic, we found that she had been moved to a small private room just off of the East Nursery. When we went in to see her, the nurse and respiratory therapist were working on her. She had just been relocated because she was so stable. Now for our second surprise; she was on the regular ventilator! The jet ventilator and nitric oxide machines were sitting to the side, turned off and Emily had very good O2 saturation levels. Apparently while she was being moved, she did really well with being hand bagged, so they just hooked her up to the regular ventilator while they got her settled. Then the respiratory therapist decided to hook up a monitor to the ventilator to check the pressure-volume curves. To her surprise, they showed nice big loops, and she got the doctor who decided to leave her on the regular ventilator until they took the next blood gas. She continued to tolerate the nurse and respiratory therapist suctioning her lungs, retaping her tube, changing her diaper, pricking her heel for a blood gas, feeding her, etc. all at once. Two blood gases taken this morning showed low CO2 levels. Emily was stable for us pretty much all day except for about an hour when they had her on her belly. She got extremely upset and her heart rate went up to 200 beats per minute and her saturation levels dropped. She also had a bad blood gas result, with a CO2 of 96. The next gas taken 90 minutes later when she was on her back showed a CO2 of 66. I just called the hospital, and it unfortunately went up again to 78. These blood CO2 levels seem to be the one thing confusing the doctors and respiratory therapists. Emily has been very active all day and all of her vitals signs are good, her oxygen saturation levels are high, and the respirator seems to be working well, but her CO2 levels seem to move wildly from very good to very bad within a few hours. The doctors have teaked the pressure settings on her ventilator, so we are hoping that there will be more good news tomorrow.

Emily Gives Mommy and Daddy a Scare

Tuesday, Emily had a new "long line" installed. When that procedure was finished Tony noted that she didn't seem to be responding to her enviroment like she normally does. After getting her doctor to look at her and checking her blood gases it was deterimined that she had high CO2 levels in her blood. So the tried giving her a new breathing tube figuring that it was clogged. It wasn't. Her next blood gas showed that the levels were still on the rise. So this time they tried suctioning her using her tube as the suction device before giving her a new tube (normally they use a smaller tube inside her tube to do this). The doctor was able to get up some nice chunks of mucus but later she was still having problems. So another doctor decided to do this again! He too got more chunks of mucus up. After that she seemed to stablize. They checked the mucus and there seems to be no sign of infection so we are hopeful that this was just caused by her premature lungs and the inability to get these large chunks of mucus up her little suction tube.

Yesterday, Wednesday, the doctor put a new larger tube in her even though she was stable. He wanted to make sure he stays ahead of the problem. Also they can't keep doing what they did on Tuesday. She has grown since she was born and there was definately air getting around the old tube. This has made suction a lot easier on the nurses and they are able to get up things now. They have also be able to improve her gasses and have her on around 40 % O2 as of yesterday. She has been much like her normal self since the CO2 levels are down. Yesterday she was kicking and moving about constantly!

Jennifer

Little Miss Emily Gets a Big Head

Well, Emily got measured yesterday. She is now 1 lb, 8 oz. That's a 50% weight gain over the past three weeks! She's also a bit longer; 12 1/4 " compared to 11 1/2 " at birth. Her head circumferance has also increased by 1 cm in the past week. Yesterday she needed a new breathing tube put in, and she fought the doctors and nurses every step of the way. The doctor commented on how feisty she was and says they like it when the tiny babies are like that. We also figured out she can wiggle her ears, a trait neither of her parents shows. The past few days we've seen them move up and down and side to side.

Tony

Three Weeks Old

Emily had a big day yesterday. Emily hadn't had a bowel movement since she was born. She has been tolerating her feeds well (She's on day six of a fifteen day feeding schedule to get her digestive system used to food.), and her abdomen has been distended. Yesterday afternoon the nurses gave her a suppository as a 'tactial maneuver'. Usually they don't stay in the babies long enough to work because the babies don't like it when they get inserted so they bear down really hard to get it out. (So it ends up working in the end, just not the way it usually does.) The bottom line is that Emily finally had her first BM in three weeks. Last night before we left Jennifer went to change Emily's diaper, which was full again. While Jennifer was changing, more poo came out. The nurse took over and put another diaper under her (Emily, not Jennifer), after the first one was filled up. She wiped Emily and even more came out! In total, Emily used up five diapers at once. When the nurse weighed her stool, she found that Emily had an 18 gram BM and after measuring her abdomen found that she had lost 1.5 cm from her overall circumferance. To give you an idea, this would be like you or me going to the bathroom and losing two pants sizes!

Afterwards, her eyes were wide open so that we finally saw her whites for teh first time. We were also able to determine that Emily has brown eyes. When we left, she was breathing 33% oxygen mixture and they had weaned her ventilator pressure settings down a little. We just talked to the nurse at the hospital (we are heading to Philadelphia soon), and were told that she had a good night; her blood gases have been 'excellent' and they plan to reduce the ventilator pressure some more. Yesterday's chest x-ray was also good and showed that one section of hyper-inflated lung is starting to shrink back to normal size. The nurses have set her up with a tiny pacifier which would be a choking hazard for a full-term infant, which they taped to the end of a rolled-up baby hat to use as a handle. Emily has started sucking on her pacifier, but she also likes to bite it, which shoves it out of her mouth. Yesterday she worked out that by putting her hand behing the pacifier she could give it a good shove and put it back in her mouth. We had a scary moment before we left last night when Emily decided to reposition herself. She was lying on her belly with her facing to her left when she decided to lift her head and rotate it so that she was facing down. This is very bad if you're hooked up to a ventilator and is generally not recommended. Fortunatley a nurse heard us and repositioned her, this time with a bean bag on her head so that she couldn't move her head with those strong little neck and arm muscles of hers.

Tony

Nineteen Days Old

More pictures of Emily. The one one the upper left was taken yesterday with the top of her isolette off. She is difficult to photograph with both eyes open! The one above was taken today when Jennifer was trying to comfort her. Emily had a good day but a rough evening. We've started to notice that just before we leave, things start to go downhill. We have to stay and comfort her until she goes to sleep, then she usually has a good night. I think that she can tell when we are leaving because we go at the same time every night and she doesn't like it.

Today they decreased the pressure on some of her ventilator settings. Emily is now breathing 45% oxygen and is pretty stable. She continues to have good blood gases, suggesting that her lungs are getting better at the oxygen/carbon dioxide exchange. X-rays show that her lungs continue to improve and that her partially collapsed lung has started to reopen. The swelling around her abdomen has abated and has been stable the past day or so; we are still waiting on that bowel movement.

Today while she was holding Jennifer's finger, her nurse came over to feel Emily's chest to make sure that the jet ventilator was vibrating her properly. Emily let go of Mom's finger and shoved the nurse away before grabbing Jennifer's finger again. She definitely seems to know the difference between Mom and Dad and the nurses.

Emily Seventeen Days Old

Emily continues to require large amounts of respiratory support but has been improving slowly. Today her oxygen mixture was reduced to ~65% and she continues to have good blood oxygen saturation levels. The respiratory therapist once again slightly reduced the pressure from the jet ventilator she is on. She has a partially collapsed lung, but the doctors consider this par for the course at this point and aren't too concerned. There continues to be no sign of infection. Today they removed her umbilical arterial and venal catheters which were interfering with circulation in her foot and put in a long line for access. The results of her head ultrasound show a normal brain, which has the doctors encouraged; most cases of cerebral hemmorage in preemies occur within the first week of life. Last night she got to sleep on her stomach for the first time and she really seemed to enjoy it. Today we got to see her with the top of her isolette off. Both eyes are wide open now and she moves her head, so she was actively looking around and exploring her new world.

Emily Two Weeks Old

We had some good news today. Emily was stable all of last night and throughout the day. The doctors have been gradually weaning her off of the jet ventilator, and they started weaning her off of her nitric oxide today. She had a chest x-ray which showed improvement in her lungs. They've also started feeding her some of Jennifer's milk, and she tolorated both feedings today. She has also been taken off of the antifungal medication she was on since cultures show no sign of infection, and her platelette counts have been stable. Her biggest problem now is that her neck muscles are strong enough to turn her head, and she wants to look around her environment, which risks dislodging her breathing tube.

Emily was very active today despite the morphine and versed. She opens her eyes quite frequently now and her movements are very deliberate. This evening she kept looking up at a green tube above her which is part of her breathing apparatus. Then she reached out and grabbed it in a single try! We've also noticed her rubbing her hands against different textures in her incubator: the leads of the heart rate monitor, the plastic of the tubing, and her bedding. This afternoon she apparently got quite a fright from Daddy. While Tony was looking at her, she opened one eye slightly, then both eyes suddenly opened wide, then shut tight. Then she took another peek before opening both eyes wide again and jerking her arms as if surprised and shutting her eyes tight again. Either she was expecting Mommy or Daddy is very scary looking to her. Yesterday, she had a tube tangled up in her right foot. Tony untangled it for her, and she immediately flexed her toes open, and stretched out her leg until she found the tube and grabbed ahold of it again.

Emily has also developed and interesting range of habits:
Blowing spit bubbles.
When sleeping, sticking her leg straight up in the air and shaking her foot just like her Daddy. (Apparently this is genetic!)
Picking her ear with her index finger.
Putting her finger in her eye.
Grabbing her bottom eyelids with her hands and pulling on them until you see the whites of her eyes.
Grabbing her bottom lip and pulling her jaw open.

Apparently Emily is a very willfull child who likes to explore her environment. Given her penchant for grabbing and pulling, I think it's safe to say that people with long hair should be careful around our little girl after she comes home!

Comment on our baby registry

Hello,

Words can not describe what I am feeling right now. I am focusing all of my energy on Emily. Therefore I wanted to post a note about our baby registery. I will be removing it soon. Most of the items on there are not apropriate anymore. Tony and I have decided that rather then modifying it, we will create a new one with Emily in mind. However this will be hard for us. So we have decided to take Emily with us and get things just for her after she is released from the hospital. In the meanwhile we have a carseat to get her home and some clothes for her. If you feel the need to get her something in the up coming months until she comes home, we would welcome any wooden toy (see Melissa and Doug toys) LeapFrog products, or developmental toys such as that. She will have a long road ahead of her when she gets home to make sure that she doesn't have long term disabilities because of her prematurity.

Thank you for your understanding.

Jennifer

Day Thirteen; Losing Alexander

Alexander died on Friday, August 11th almost eleven days to the minute after his birth. The yeast infection the doctors thought they had under control suddenly caused him to swell overnight on Wednesday. By Friday morning he was 22 centimeters around in his abdomen. The yeast turned out to be an unusual variety they don't normally see in the ICN and there apparently aren't any effective treatments for it. Alex's little heart couldn't take the strain and eventually gave out. When he was still alive, but could no longer sustain a pulse they disconnected him from the equipment and put him in Jennifer's arms. Jennifer had said that she could tell that all Alex wanted was to be picked up and held. So, for his entire life all he wanted was for someone to hold him, and his mother gave him that gift at the very end. When she told him how much she loved him, he opened his eyes for the last time; the very first and very last things Alex ever saw with his eyes in his short life was his Mommy. Then he closed his eyes and looked just like he'd drifted off to sleep.

Jennifer and I are overwhelmed with his loss. It's far worse than losing Christopher because we had more time with Alex and got to know him. It's also hard to think that we lost him to something so stupid as a yeast infection. But, we have to stay strong for his sister. Emily continues to fight for her life, and has been improving very gradually but still needs a great deal of respiratory support. She has lost circulation to the toes on her right foot and may lose some of them. The doctors are also concerned about long-term brain damage from the lack of oxygen she endured for almost 24 hours on Thursday.

I've attached a picture of Jennifer holding Alex just after he passed away. I've also added a photo Jennifer took of Emily opening her eyes taken just yesterday.

Tony

Eleven Days Old

Alexander and Emily both took a turn for the worst yesterday. Both have breathing difficulties because their lungs are so immature. Emily is doing a little better than her brother and seems to be responding to the steroids to help her lungs. Alexander is in serious trouble. His yeast infection seems to have set up in his bowels and he is now extremely bloated. The doctors don't dare put him on steroids for his lungs because it will make the infection worse. Both babies need 100 % oxygen and the special 'puffer' ventilators now. Yesterday the doctor told Jennifer that Alex wouldn't survive another day, and his oxygen saturation levels were in the low 20 %'s. Jennifer asked that he be put on NO like his sister, and the doctor was initially reluctant to do so because he thinks it will at best be a temporary reprieve. However, shortly after being put on the NO, Alex's saturation levels went up and his blood gases got better. His blood pH is good, and his CO2 levels have come down. Yesterday afternoon we were told that his oxygen levels were still lower than the doctors would like (he was pretty much staying in the 70 % range), but it was a definite improvement over the morning and that as long as his blood gases continued to look good, there should be no long-term problems. We made the difficult decision to go home to try to get some sleep last night. When we left, his gases were still good and his saturation levels were slowly moving up into the 80% range. We're about to leave for the hospital. I called the doctor this morning and found out that Alex had an 'event' at 4 AM requiring recussitation, but that he's been pretty stable since. As of now, his oxygen saturation levels have climbed up into the 90% range.

We are hoping that the medications will keep the yeast infection in check and that his respiratory situation will stabilize. If he requires less respiratory support, the doctors say that they can intervene surgically to remove some of the yeast causing his bloating. After the infection is under control, then they can start him on the steroids for his lungs.

Keep Praying,

Tony

Nine Days Old

Alex and Emily have started having some breathing troubles. Yesterday they had to be put on 100% oxygen. This morning however, things seemed to settle down. Emily was started on dexamethasone, which should help with her lung development. Alexander however, has been battling a yeast infection, so the doctors want to wait until he gets stronger before starting him on the drug. The news from yesterday's cultures was good, however. They did a spinal and took some blood from his arm and no yeast showed up in either culture. They also couldn't find any white blood cells in his cerebral spinal fluid, which also suggests a lack of infection. They also examined his heart and saw no evidence of yeast on his valves. He is still at 92 % oxygen but was taken off of the puffer and placed back on the regular ventilator; his sister was weaned down to 75% oxygen when we left tonight, so it seems that she is doing better on the medication for her lungs. We hope that Alexander's ultrasound for the brain and kidneys will be clear and he can start the medication tomorrow. Both Jennifer and I noted that he is much more lively now than he was yesterday. Since an infection in the blood tends to make babies very lethargic, this tells us, in our naive opinion, that he is improving. I'm posting pictures of the babies taken today. Jennifer took a wonderful picture of Alex with both of his eyes open. I took a picture of Emily with her eyes closed. One of them is already opened, and she's working on eye number two.

Tony

One Week Old

Alexander and Emily have had a big week. Both are doing well. Babies are born with PDA, which is a hole in the heart which closes on its own in full term babies. They gave Alex and Emily a drug to help close the PDA, but told us that it usually doesn't work on preemies this young. On Wednesday, the doctor told us that they would need surguryto close their PDA, which would take place the following day. On Thursday however, the doctors never came to Jennifer's room in the hospital so we finally went down to the ICN after she was finished with the resident, nurse, lactation consultant, etc. The doctor caught up with us and said that they took another ECH and saw no sign of the PDA, so it closed up overnight in both babies!

Alex was taken off of dopamine, which they are using to control their blood pressure, on Saturday and has been stable ever since. Emily is also being weaned off of the dopamine. Emily is on very low levels of NO and the oscillator is set to very low settings, so they are going to try to take her off the NO and put her on a regular ventilator. We found out that Emily has quite the temper. While her nurse was working with her last night, we could see her crying, though she can't make any sound yet. While the nurse was adjusting her pulse ox sensor, Emily very deliberately smacked the nurse's hand with hers. The nurse was surprised for a moment and said "She hit me!". Alex wasn't having such a great time being poked and prodded either. He was crying while the nurse was taking samples and Jennifer was trying to comfort him. While his Mommy was talking to him, she put her finger in his little hand, and he opened his eye for the first time! (We couldn't see the other one from our angle; we assume it's either open or close.) It was clear that he was trying really hard to open his eyes so that he could see his Mommy. When I tried this trick however, he took one look at Daddy, shut his eye really quick, and squeezed my finger for dear life! I guess I should have shaved yesterday . . .

Tony

Christopher Matthew

I've been thinking about our little boy and what his life must have been like. Some of you might think this is kind of silly, but I think an autobiography of his life might go something like this:

July 31st, (The Feast Day of Saint Ignacias Loyolla), I am born at 11:08 AM! My sister Emily follows at 11:09 AM and my brother Alexander at 11:10 AM. I have some trouble breathing. The doctors try really, really hard, but they can't help me.

I get to meet Mommy and Daddy! Most babies born at 24 weeks have their eyes still fused shut, but mine are open, so I get to see them before Alex and Emily. Mom and Dad tell me how much they love me and how proud they are of me for being so strong. I got really squished by Alex and Emily inside Mommy, but it wasn't their fault. I was able to hang on for four more weeks. Mom and Dad said thank you and that now Alex and Emily have a chance.

I have to say goodbye to Mommy and Daddy. The last thing I remember seeing is Daddy's face. They bring a priest in to baptize me. Daddy says that Jesus loves little children and that he will be waiting for me when I get to heaven. Mommy says that I have to remember to look after my younger brother and sister. After I'm gone, the hospital takes a picture of me in my nifty new hospital-issue outfit. My very own set of clothes! I'm sorry I never got to see the rubber ducky that Mommy picked out for me, but I'm sure I would have liked it; Daddy says that it was really cool.

Love,

Christopher

Good News and Bad - A Long Overdue Update

I'm sorry to everyone for not updating this blog regularly, but just haven't found the time or energy. As most of you know, Jennifer had some serious complications with the pregnancy. On June 30, she started bleeding. We went to the hospital, and she was held overnight. She got sent home with a prescription for an iron supplement and bed rest. Late on July 3rd, she started leaking fluid. I took her to the hospital, and she was admitted on July 4th. An ultrasound the following day showed that all four babies had low fluid levels in their amniotic sacs. On Saturday, July 8th, another ultrasound showed no fluid around Christopher at all, confirming that there had been premature rupture of membrane (PROM). Jennifer continued to have bleeding on and off all through July, but we really thought that things were getting better.

Last week, our doctor told us that at Pennsylvania Hosptial, 23 weeks is considered a viable pregnancy, and he gave Jennifer an injection of steroids on Thursday and Friday which would help the babies' lungs develop faster if they were born within the next week. On Saturday, Jennifer started having contractions. They have her an IV, and they seemed to go away. They reappeared on Sunday alone with a bladder infection, but were sporadic and infrequent. By Monday morning, they were regular and coming every few minutes. Jennifer's belly was also tender and painful to the touch, so the doctors diagnosed an infection around the babies which they can't treat in utero. This is one of the things the amniotic sac protects the babies against, but with Christopher's ruptured, they think he got an infection, which could also progress to Alexander and Emily once it got established.

All three babies were born alive on July 31st at exactly 24 weeks and delivered via emergency C-section. Christopher, Emily, and Alexander were born at 11:08 AM, 11:09 AM, and 11:10 AM respectively, weighing in at around one pound each.

Christopher was our first born, but he was badly squished from the lack of fluid combined with the weight of Alexander and Emily on top of him. The doctors tried to insert a breathing tube, but his lungs were too small for even ther smallest tube. We did get to hold him his last few minutes. As you know, babies at 24 weeks haven't opened their eyes yet, but Christopher had both eyes open, and we know from the ultrasound that he had lenses in each eye. We like to think that he at least got a glimpse of mom and dad before he passed on. We were able to get a priest to do what the Catholic Church calls a 'conditional baptism' on him, which essentially means that even though there wasn't any sign of life by the time the priest arrive, we acknowledge that God's conception of life does not necessarily correspond to ours, and that in baptising him we are giving him to God. I was thinking about Mark10:13-16 while this was happening, and the though of Jesus blessing the children gave us great comfort. We also thanked him for being so strong and brave and holding on for four weeks to give his brother and sister a fighting chance. We will tell them all about their brave older brother when they get older.

Alexander and Emily are, according to the doctors, 'pink and lively'. According to the nurses, this means that Alexander kicked the doctors after the got oxygen in him and them peed all over them. As they were being wheeled out, I saw Emily struggling with the doctor; apparently she didn't like her breathing tube and was trying to pull it out already. Alexander has been doing excellent since they brought him out. He looks nice and pink and all of his vitals have been stable since birth. Last night they moved him into an incubator. (He was under a Saran-Wrap blanket to keep him from drying out while they were working on him.) He grabs our fingers in his little hands when offered, and gives the nurses trouble because he kicks them whenever they need to change his fluids or take samples. Other than that, they say that he's a good boy and doing well.

Emily had some trouble the first night. Here lungs don't appear to be as mature as Alex's are. Her blood oxygen levels were too low, so they tried a puffer, which gives her 360 breathes per minute. She's trying to breathe on her own, but this was interfering with the ventilator so they had to sedate her. (The doctors say they almost never have to sedate 24-weekers.) She started doing better, but around 3 AM on August 1at, a doctor told us that her breathing and heart rate had crashed and she didn't think Emily would survive, but that they weren't going to give up yet. They added NO gas to her mixture, and two hours later, she had good oxygen levels in her blood. Her heart rate was a little high, but every time we see her she looks a little better. Right now she's on a 30-40% oxygen mixture and is looking much pinker. She had some problems with her lower legs, which looked like there wasn't good gas exchange, but they've gone from purple to dark red to red to almost pink now. Her heart rate has also come down. Yesterday, they struggled with her blood pressure, but gave her some dopamine and have been gradually weaning her off so they can give her some morphine to lower her heart rate a little. The good news is that she has been stable for the past day or so.

The doctor says that both of them have plenty of fight in them and that they are very vigorous, almost too vigorous! Alex and Emily are in good hands. The NICU currently has six preemies which were born at 23 weeks and are doing well. They've each got a nurse hovering over them almost 24 hours a day, who is constantly monitoring their vitals and making adjustments in their treatment regimen. The doctors all seem to be optimistic and stubborn individuals with a can-do attitude that aren't going to give up on a baby just because things look really bad.

Jennifer will be discharged from the hospital on Friday. I'm going to meet with a funeral home recommended by the pastoral associate at our church today. We are planning to have Christopher's remains cremated until we make a final decision on whether to have a funeral service and where to lay him to rest. This makes the most sense for us since neither of us have family which lives in the immediate area.

Alex and Emily have been peeing and pooping, so things seem to be working there. Making messes already! Alex's favorite pass-times include; grabbing Mommy and Daddy by the finger, kicking the nurses, and sleeping. Emily's favorite pass-times include; grabbing Mommy and Daddy by the finger, grabbing and pulling ANYTHING with her right hand, and fighting with Daddy and the nurses who keep trying to cover her with her space blanket. (Jennifer's Dad says he understands how she feels - The last time he slept in Saran-Wrap it wasn't comfortable for him, either!)

Tony