The day we've been waiting for!

Today's visit to Duke was quite eventful! We were told to expect to be there a good part of the day, so we arranged for Lacey to have a play date with friends. It's a good thing, since our appointment was at 10am and we didn't finish until after 2pm. We met with the speech therapist, physical therapist, the neonatologist fellow, the attending physician, and a few other Lawson fans.

As we checked in, Lawson began working his smiley magic on the receptionist and continued throughout the day. We had been in the waiting area for quite a while, when one of our favorite fellows who was there when he was born, through it all, and there when he left, walked by. She smiled and waved but kept walking. Brian and I puzzled over why she wouldn't even stop to get a look at him. A few moments later, she reappeared, stopping to chat and oogle over Lawson. Every time we'd ever seen her, which was only in the NICU, she had been wearing scrubs. Since she was dressed in street clothes today, I asked, "So are you just hanging out at Duke today?" Her reply surprised and delighted me! "I actually wanted to see if I could get in on Lawson's appointment. If they can get you guys into a room soon, I'm going to stay."

The nurse came soon after to get his weight and height. They didn't have a room yet, so she asked us to leave the stroller and our stuff and just carry him to the scale. As I undressed him, I unwrapped an unexpected surprise! Lawson had blown out his diaper and had poop from his underarm all the way down his outfit to his toes!!!! I didn't notice at first, so it got all over the exam table! Since I had just carried him in there, I didn't have the diaper bag with me! I was mortified, yet cracking up at the same time! I left Lawson with the nurse and went back for the diaper bag. By the time we got him cleaned up and dressed in his third outfit for the day (he spit up on the 'special outfit' before we even left the house this morning), a room was ready for us.

One of the first people we met with today was Amanda, the speech therapist who nixed breastfeeding after the swallow study showed breastmilk that had not been thickened would aspirate into his lungs. So since we've had Lawson home, we've had to add Simply Thick to all of Lawson's bottles to protect his lungs. If you've read my earlier posts, you know how devistating it was to me that I would not be able to breastfeed. Well, we had our big test today. It just happened to be time for Lawson to feed while Amanda was there. She asked if I felt comfortable trying to breastfeed in front of her so she could see if Lawson seemed to be ready. Within a few seconds, Lawson was coughing. Oh no! Coughing is a sign of aspiration! My heart raced and spirits dropped! I know Amanda could see it on my face because she said, "Don't worry, he's just getting warmed up!" It didn't take long before got himself together and nursed like a champ! So the very best news we got today was that we don't have to use Simply Thick in his bottles any more and WE CAN BREASTFEED!!!!!

Other highlights of the day . . . Lawson now weighs 10lbs 9oz, still below the 5th percentile for his chronological age (actual age since his birth), but 25th percentile for his adjusted age (age since his due date). His is 22 inches long, 10th percentile for his adjusted age. He smiled at EVERYBODY who looked at him, charmed all the ladies, and managed to keep his good mood most of the day. He is on track for his chronological age in his social skills and on track for his adjusted age in physical development. We still have to be very careful to protect him from colds, illnesses, germs, etc due to his lungs still not being healed. He will continue the daily nebulizer and the current meds at higher doses based on his new weight. His feeding schedule will be to breastfeed whenever he is hungry and supplement with a bottle of breastmilk mixed with formula occasionally for the extra calories. I will continue to pump after feedings to keep up my milk supply. His next appointment is next Monday with our regular pediatrician. I can't imagine we'll have anything but good news to share from here on out, but there's no way anything can top the news we got today! :)

In the blink of an eye

Yesterday was my original due date. Instead Lawson came six weeks, one day early and has been fighting for his life ever since. We've had ups and downs, happy tears and sad ones. The news seems to go from bad to good and back again. This time he made it 22 hours off the ventilator. (for the quick update, scroll to the bottom)

The original 'problem' that caused the team of doctors at Duke to induce labor six weeks early was the fluid found in his lungs at my 33 week check-up. Since then he:

had chest tubes in both lungs to remove the fluid that was there inutero

spent 44 days on a ventilator (minus the 16 hours and then 22 hours he was extubated)

developed an abundance of blebs (air filled blisters) throughout his left lung

developed Pulmonary Interstitial Emphysema, PIE (caused by the ventilator).

has gone through 13 days of a ‘controversial’ steroid, Decadron, which actually seemed to help

has been exposed to the radiation of x-rays every 12 hours, sometimes more often since his birth

had a bronchoscopy (a tiny camera on a tube down his trachea)

was born with tracheomalacia (a weak trachea which closes when he tries to exhale unless stinted open by the breathing tube), which wasn’t found until the bronchoscopy

still has a large pulmonary sequestration, the mass of unhealthy tissue at the bottom of the left lung

had a pneumopericardium (air in the space between the heart and the pericardium, the membrane surrounding the heart) and a tube to remove the air

had a pneumothorax (air in the pleural space around the lungs) and a tube to remove that

has gone through two EEG scans (electroencephalogram- a test that measures and records the electrical activity of the brain)

has been through one CT scan so far and another scheduled for Monday

had a patch of his hair shaved and an IV placed in his head for a CT scan that never happened because radiology didn’t like the IV in his head

suffered a very serious IV infiltration (when the vein that the IV was going though ruptures and the fluid infiltrates the surrounding tissues) over a month ago on his left foot which almost cost him the feeling in his foot; it is slowly getting better

I’m sure there are more things, but those are the ones that come to mind right now. Most of them I have blogged about before, some I have not. It just seemed like time to recap our unbelievable journey. The hardest part is that the wonderfully trained, amazingly intelligent, and extensively experienced Duke doctors admit to having never seen a case like Lawson’s.

The extreme high that we were on Friday came crashing down Saturday morning when they called to tell us he would need to be reintubated and that his x-ray was concerning. His x-ray was considerably worse showing that he has developed a huge bleb and what seems to be atelectasis (several of the alveoli, little sacs that exchange oxygen/carbon dioxide, are collapsed). He is scheduled for a CT scan in the morning, we’re meeting with his team of doctors tomorrow afternoon, and he is on the surgery calendar for Wednesday. The fact that things looked so great on Friday makes it so much harder to accept the huge turnaround on Saturday. It’s becoming harder and harder to stay positive right now, so please say an extra prayer for me!

Here we go again

Lawson's doctor called us today to say that one of the blebs had burst and caused a pneumothorax, air in the space outside the lung in the pleural space. They just happened to see it on a routine chest x-ray. Normally this would be a very serious condition that causes the lung to collapse. Since Lawson's left lung is so filled with blebs, (apparently there are hundreds) the lung was inflated by them and did not collapse. So although they're not supposed to be there, they helped him make it through the pneumothorax without having a collapsed lung. His team of doctors was able to go in with a needle and release the trapped air. Unfortunately, it reaccumulated in about 5 minutes. So they have decided to reinstall the left chest tube. This time it will be removing the trapped air instead of fluid. They are not sure if the air that is reaccumulating is air that is being pushed in through the breathing tube or if the other blebs are also bursting. Either way, the chest tube is necessary to deal with the excess air. Dr. Tanaka also pointed out that he was worried that there might be very little 'healthy' lung tissue in the left lung, due to all the blebs. We will have to wait until the blebs have been dealt with before we'll know the answer to that question. They are expecting to have more answers by early next week.

Really Yucky Day!

So it is mastitis- double mastitis actually (both breasts)! Of course this is both good and bad. It's great because I'm not contagious and can go to see Lawson. It's bad because I truly feel terrible and didn't have it in me to make it to the hospital today! I was able to get in with my OB and they've given me an antibiotic. My doctor said I should start to feel better by tomorrow; let's hope he's right! :(

Brian did go by the hospital after work and today's visit really upset him. He said that most of the nurses were new so he didn't recognize many of them and he felt a little uncomfortable. He got some news that he wasn't expecting. He was functioning on only a few hours sleep because my uncontrollable shaking/teeth chattering and pumping every 3 hours kept him awake. Not to mention me asking him to bring me ibuprofen and water and extra blankets and bring the milk down to the freezer. Needless to say, he was feeling pretty rough this evening.

Apparently, Lawson's lungs are much 'sicker' than they had thought and he had to be put back on the jet ventilator. We were able to have a lengthy conversation with one of his doctors over the phone this evening. Although Dr. Goldstein assured us that going back to the jet is NOT 'going backwards', it sure feels like it! She said that it is not uncommon and this is what he needs right now. It's just a really hard pill to swallow when he seemed to be making so much progress so quickly. Dr. Goldstein even commented that all the doctors and nurses were amazed with how rapidly he was progressing. She pointed out that the only way they would have known whether or not he was ready to breathe on his own was to try it. I'm just thankful that he got to try it and we got to see his beautiful face, if only for a day. Soon enough we'll see it every day! :) The settings on the jet are set very low and they are currently giving him a diuretic to try and 'dry out' his body. She mentioned that this could be something that he will need to continue for quite some time, even when he comes home from the hospital. We're definitely prepared to give him medicine every day if that's what he needs!

The one bright spot of today was having Danielle here. She really has been a lifesaver! She has been able to drive me home from the hospital yesterday, drive me to my hair appointment last night and hang out the whole time, both drop off and pick up Lacey from daycare, get my lunch, go to the grocery store for some essentials, help diagnose my mastitis, take me to my OB appointment, pick up my prescription, clean out and organize my pantry, buy me a spa pedicure gift certificate, and basically be there for me! It will be really hard to let her leave tomorrow, but she's got three boys who need her (husband and two sons). I realize the world doesn't revolve around me, but it sure was fun while it lasted! :)

A mixed bag

During our visit today, we received more positive news sprinkled with some cause for concern. I'll start with the GREAT news . . . Since birth, he has been on the High Frequency Jet Ventilator. Basically what we were told is that the 'jet' gives very fast breaths by vibrating air into the lungs more so than helping him breathe. Lawson was getting 420 breaths per minute. It made a loud rhythmic sound and caused his chest to pulsate in a very unnatural way. Because of the 'jet' they have been unable to use a stethescope to listen to his heart/chest and he was unable to practice breathing, among other drawbacks. Early this morning he was switched over to the conventional ventilator, which is a HUGE step in his road to recovery! He will now be able to practice breathing on his own and receive more normal breaths per minute! Other exciting news is that the right chest tube, which was drawing the fluid off the right side of his chest, has been removed. The tube had not produced any fluid for several days, so they believe that all of the fluid is gone and therefore it is safe to remove the tube!

Now on to the causes for concern. He continues to have the 'episodes' and now neurology is involved. He has been hooked up to the EEG machine since last night and they were continuing to follow it. They wanted to let it go for a while so they would have even more data to compare. You know how we all love data! :) This afternoon when we were leaving the hospital, they were transporting him down for a CT scan. The neurologists felt it was important for him to get this test as soon as possible. This in itself is a little risky because he will be off the ventilator all together. One of the respitory technicians will be at his side 'bagging' him, squeezing the bag attached to his breathing tube at the same rate that the conventional ventilator was. The whole procedure should take about 2 hours. We won't have any results until tomorrow, but we'll hear tonight how he did during the transport. Hopefully we'll have more news soon.

Two steps back

I guess the positive conversation we had with Dr. Goldstein yesterday made me overly optimistic. I guess I failed to hear the 'barring any further complications' part of the conversation. I guess I didn't want to believe that anything else could go wrong.

When we were on our way out the door to the hospital today, we got a call from the Nurse Practitioner. She said that Lawson had had an 'episode' where his blood pressure shot way up and his heart rate shot way down. This combination can sometimes be indicitive of a seizure. The nurse said they had also seen him 'lip smacking' which is another sign of seizure in an infant when coupled with those symptoms. There were a ton of doctors in the room when we arrived because he had just had another episode. Although they could not say for sure it was a seizure, they could not rule it out and wanted to pursue it. They called for an ultrasound of his brain and an EEG, similar to and EKG, but they do a reading of brain activity rather than heart activtiy. The doctor said if the ultrasound showed it was a seizure, then we could know for sure, but if it did not show a seizure, it didn't really prove anything. Just before we left this evening, they had the results and the ultrasound said everything looked normal. This would usually make me feel better, but according to the doctor, it doesn't prove anything; we still don't know what's going on. They were going to do the EEG later this evening and call with results . . .

One week

This time one week ago, I was laying in the hospital bed at Duke wondering what time they would induce labor. We had been told the night before that they would start sometime in the morning. It didn't actually happen until 2pm, but that's neither here nor there at this point.

It's so crazy to look back on everything now. Everyone I know had made some sort of comment about how huge I was. It came to be a joke among friends, a question of strangers, and an awe inspiring thing to the children. We came to find out that it was actually a problem, the problem, which lead us to the ultrasound which ultimately saved his life. When my OB said I was 'measuring big', it never occurred to me that there could be a problem. I just expected them to move up the due date. I remember having the same conversation with everyone I passed at school about my appointment on Wednesday. "There's no way you'll go until April!" "I'm sure they'll change your due date!" "You're just so huge!" "He's going to be a REALLY big boy!" The specialists at Duke said that my uterus, the day they induced labor, was the size of a full term twins pregnancy!! The medical term for this problem is polyhydramnios. My polyhydramnios, coupled with his fluid in the lung cavity and possible CCAM tumors, were the deciding factors in delivering early.

Tonight at 11:09pm Lawson will be one week old! We're on our way to the hospital now and based on what we've heard so far, we'll have nothing but good news to share!

No longer on the bench

The nurses show up to work every day and tend to whomever is there unless they have a primary patient. They have the option to choose a primary patient, so that any time they work, that is the baby in their care. We've been waiting for Lawson to have a 'primary nurse' since he arrived in the NICU. All of the nurses we've met so far already had primary patients or were night or weekend only nurses. Eventually we just stopped asking. We had a funny conversation with one of them about how it all works. We joked that Lawson was still sitting on the bench. So he's finally in the game. We found out the Cheri, one of the nurses we LOVE, has chosen Lawson to be her primary patient and we're super excited about it!

We had a wonderfully positive experience at the hospital today. We got a chance to talk with Dr. Goldstein, the attending physician. It's great to talk to the nurses, but really nice to talk to the 'big guy/gal'. She was very upbeat and encouraging. She basically confirmed everything the nurses have said so far and spoke of what a fighter Lawson is. The chest tubes and heart catheter will likely be removed soon. His chest x-rays continue to look good. They are able to pull back on many of the medicines and are continuing the slow process of weaning him off the breathing machine. She brought me to happy tears when she said she thinks he COULD be off the breathing machine in one or two more weeks! That is the first step in making real progress!! At that point they will be able to do more tests, begin to make a diagnosis, and depending on a few other factors, maybe even begin feeding him my breastmilk through a tube into his stomach. Baby steps . . .

No news is good news

We're on our way to the hospital in a few minutes. We wanted to spend a little time with my dad before he headed back home today. My mom is staying until, as she puts it, we kick her out. :) By the way, my dad was given a clean bill of health from his doctor and released with no restrictions. It still makes me nervous for him to drive all by himself, but he refused to let anyone come with him. He says that since he went to the hospital and the doctor said he was fine, he's now more capable than ever to 'handle the trip' since he knows it's not his heart! Hopefully Lawson will be as stubborn as his grandpa!


We called the hospital last night and Lawson's nurse, Lindsey, said everything was stable. They hadn't made any changes in his medications or machines. They were going to do another chest x-ray to check and see if there was any more air around his heart. The catheter hadn't produced any air in a while, so they thought either the air was gone, or the tube was in the wrong place.

When Brian called this morning the nurse said that the morphine seemed to be making him sick, so they've pulled back on the morphine and have moved him to his side. The left chest tube hasn't produced any fluid in several days, so they're planning to remove it today. To us, this is the best news of all because it gets him closer to being able to endure the next level of tests. They have to know what's wrong with him to make him better, but they have to get him stable enough for the tests to find out what's wrong with him. We haven't heard anything about them moving the heart catheter, so according to the nurse, that's good news.

Snooze Button

It's 2:58 am and I'm wide awake! It's not that I can't sleep; I could, I was - very well actually. I'm instead doing the one thing I can actively do to help Lawson's recovery. One day, when he's well enough, he will need to eat to survive, so I'm pumping my breastmilk for the nurses to freeze until he is ready for it. (He is currently getting everything he needs through an IV.) All of the mothers of babies in the NICU are strongly encouraged to pump for the health of their babies. So in order to 'train' your body to produce the milk that is needed, you must pump every 3 hours, just as if he were actually feeding. As I sit here listening to the rhythmic sound of the breastpump, I'm thinking about something Brian said to 'lighten' the mood yesterday morning when my alarm was going off at 5:30 am. He said, "Hey, at least you can hit snooze! You can't snooze a real baby!" Oh that Brian has a way with words! :) I'd trade that baby in my arms for a snooze button any day! Soon enough . . .

Reinforcements arrive!

It's 8:44 on Wednesday, March 18, exactly one week since this wild rollercoaster began. This is the first day I've been able to go without crying hysterically at the drop of a hat (so far). My parents arrived today and joined us at the hospital. I don't care how old you are, a gal still needs her mommy!!!

We got a call at 3am that the air had reaccumulated in the pocket around Lawson's heart (pneumopericardium) and they would have to install a more permanent catheter to help with draining the air. They called again this morning to let us know that it had been installed and he came through just fine. That boy is definitely a fighter! :) We waited at home until my parents arrived and then got Lacey all settled with some very good friends, before we went to the hospital today.

We went in to see him in pairs; my mom and I went first, then my dad and Brian. To me, he looked great today, but it was a shock to my mom, who had only seen pictures of our little man. Seeing him surrounded by all those machines and attached to them with dozens of wires and tubes is a little overwhelming at first. We arrived just in time to watch the nurse do a 'work up', which is when she checks all his tubes, moves some of the monitors around, changes his diaper, and basically checks that everything is as it should be. She let me help her change his bedding today and I got to kiss his perfect little toes when she was changing the blood pressure monitor on his foot! Aaaah, what an amazing moment! :) (Since he's on 'minimum stimulation' we're not really supposed to touch him.) He was off the paralytic, so he was much more awake and aware than usual. He opened his eyes several times and even moved his right arm and his feet a little. It felt so amazing to see him actually moving! I realize that it's safest and easiest for them to care for him when he's paralized, but I just can't stand to see him that way!

Overall, I would say it has been an amazing day! My mommy's here to take care of me, Lacey had a fun filled day with friends, and we've come one day closer to bringing our amazing little miracle home!

Catching up

Here's the email I sent to Brassfield Staff on Tuesday, March 17:

Since his arrival into this world on Friday, they have installed chest tubes to drain the fluid from his chest cavity and put him on a breathing machine as well as a blood pressure regulator medicine and pain medication. Initally he was trying to breathe on his own, but it was counter productive to the breathing machine. So they put him on a paralytic so that they could have better control. He is also extremely succeptible to stimulation, such as noise, light, temperature, etc. His blood pressure drops suddenly and rapidly when he has been 'stimulated'. They are trying to prevent any type of stimulation. The machines have been keeping him alive up to this point. They are trying to slowly wean him off the machines/medicines. He is getting chest x-rays every 12 hours to see if any progress has been made. His x-rays have shown that most of the fluid in his lungs is gone; this is the wonderful news! Unfortunately, they have also shown a pocket of air around his heart and a possible mass in his lungs. Tuesday he had a very risky procedure to release the trapped air (sticking a needle into the sack of air to release it) that he came through like a champ! The unfortunate part is that since then, the air has recollected and so the procedure will need to be performed again. They are trying to get him stable enough to endure more tests, such as an MRI and CATSCAN. :( It really feels like we've been on an emotional roller coaster since Friday night. We get good news, then not so good news . . . Ugh!

This picture shows Lawson one day old. The glowing light on his hand is the pulse oximeter measuring the oxygen saturation in his blood. The orange circle does the same thing; one is a premeasurement and the other is post. On his left arm is the PICC line leading through his vein and to a large vein near his heart.

Welcome to the world, Lawson!

Here's the email I sent to announce his arrival:

We are pleased to announce the arrival of our beautiful baby boy, Lawson Rhett Levering, named after my grandfather, Everett, which means 'strength'. He arrived last night at 11:09pm after a fairly easy labor. As we had expected, he was rushed away to the NICU, but we did get a quick glimpse of him and he is absolutely gorgeous; dirty blond hair like daddy! :) He was 6lbs 2oz and 19 1/2 inches long. The preliminary reports were positive, better than we had expected. Yet he will still require a lot of intensive care over the next several weeks. Keep us in your thoughts and prayers!

This picture was taken just a few hours after he was born. He's very swollen. The tube in his mouth is the jet ventilator, which is breathing for him. The white squares with pink circles are the leads for the monitors showing us his heart rate, respiratory rate, and temperature. There are tubes going into his chest on both sides to extract the fluid from his lungs. The tube coming from his umbilical cord is the arterial line. The nurses can check his blood pressure and take blood from this line.

From the Beginning . . .

I guess I'll begin this blog with the emails that I sent as the whole thing got underway and then update from there. Here's the email I first sent out after the initial test results and before he arrived. . .

I know some of you have heard some of our story, but I wanted to catch everyone up with the whole story so far. . . (As of March 13 at 10:10 am)

Basically, two weeks ago at my regular OB appt, they said I was measuring big and ordered an ultrasound for my next appt. That appt was this Wednesday at my 33 week check up. During the ultrasound, they found an excess of fluid in the baby's chest. This got us an immediate transfer to Duke University Medical Center. We were admitted to Duke on Wednesday night and have been here ever since. We had a ton of tests done and bascially here's what they've found. . . Almost his entire left chest cavity is filled with fluid a condition called hydrops fetalis. They believe it to be caused by CCAM tumors that were also found on the lungs through the ultrasound. The fluid is either compressing his left lung OR it has been squished by the fluid and the lung has not fully developed. They will not know for sure until he is delivered. It has also pushed his heart over into the right chest cavity, not where it should be. Because of this, they have decided it best to induce labor today. We've been told to expect for him to be whisked away to the NICU as soon as he arrives. He will be put on a breathing machine, chest tubes, and have the fluid extracted from his chest. From there, he will remain in the NICU for 1 -2 months. We've basically been told that ' he is a very sick boy'. :(

Lacey was lucky enough to be in Virginia visiting my parents while all of this has been going on so she has been in very good hands and unaware of the situation! However, my father has been admitted to the hospital with chest pains and what could have been another heart attack! When it rains it pours! Many of you have asked what you can do to help. At this point we just need everyone to keep us in your thoughts and prayers!