Monday, March 30, 2009
Coasting
Sunday, March 29, 2009
Learning to expect the unexpected
By the time I got back there, his CO2 level was through the roof. His body was unable to effectively remove the carbon dioxide. His blood pressure was skyrocketing. There were doctors and nurses buzzing around everywhere, moving things, changing things, pushing buttons, with that nervous look in their eyes. At one point the attending physician stopped to introduce himself to me and try and fill me in. To be perfectly honest, I barely remember anything he said, except the words 'dangerous' and 'serious', which he used more than once. Brian wasn't with me, since he was planning to go watch the Carolina game at a friends house and then join me at the hospital. So there I was frozen, crying, scared to death, feeling like I was watching it all in a movie, until my phone rang. It was Brian looking for a quick update at halftime. I was crying so hard that I couldn't even explain to him what was happening. He immediately came to the hospital to join me.
By the time Brian got there, I had to pump. (It is a must to stay on schedule emptying the breasts with mastitis so I don't get an absess.) Brian went back to Lawson's room and got caught up on what was going on. When I was finished, Brian and I, the nurse practioner, and Dr. Goldberg, the chief of neonatology, sat down in the conference room to chat. We basically revisited the events of today, talked about what to expect in the next few days, and their ongoing plan of action. We were told to expect ups and downs and they will continue to manage each problem as it comes.
We went in to visit with Lawson before we left tonight. He had on the noise cancelling headphones and light blocking 'glasses', since he seems to be having negative reactions to stimulation again. It's really, really hard to see him that way, since I thought we'd crossed that bridge and were on to bigger and better things! By the time we left, his CO2 level was almost back to normal and his blood pressure was fine. They were planning to do another xray at 10pm. We're going to call for results. The one thing I have learned so far is to expect the unexpected and keep expectations low. :(
Saturday, March 28, 2009
Better than expected
Quick Update
According to our last phone conversation, here's the latest Lawson report . . . He is doing well on the jet ventilator, but his lungs still need more time to heal, so he'll be on it for a while. He has had a replogle tube in his stomach to drain some of the icky stuff still in his stomach. He has been making more bowel movements and apparently his stomach is now healthy enough to remove the replogle tube. Yippee! This means we're one step closer to starting him on breastmilk through the feeding tube! :) Other than that they keep telling us that the best medicine is time.
We're getting ready to leave for the hospital and a good friend is taking Lacey to one of her classmates' birthday party. If there's anymore news to report when we return, I'll blog again . . .
Thursday, March 26, 2009
Really Yucky Day!
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! :)
Lawson Video
At this point I'm not sure if I have the flu or mastitis, an infection of the breast! :( I woke up at 1am with uncontrollable shaking and chills, body aches, and a headache. I was convinced it's the flu, but since Danielle is here, she thought the symptoms sounded like mastitis. Brian called a little while ago and said his boss said the same thing! So I'm waiting to hear back from my OB to see if they can get me in today. I definitely want to know for sure before I go back to the hospital. As much as I would hate to have mastitis, at least I know it's not contagious!
I'll update more on Lawson later . . .
Wednesday, March 25, 2009
16 hours
Brian and I woke up early today and took Lacey to daycare so grandma could take some time to rest and recuperate. Brian dropped me off at the hospital and went to work. I spent some time with Lawson and got an amazing video! He was awake and aware and looking all around! I'm trying to figure out how to post it on here . . . It was seriously awesome!
It was also a GREAT day because my best friend, Danielle, got into town! She met me at the hospital and we had lunch in the hospital cafeteria. We were planning to spend a little more time at the hospital, but I began to feel a little sick, so I wanted to get out of there in case I was contagious. We're planning to play it by ear tomorrow. If I'm still not well, there's no way I'm going to the hosptial! I don't want to spread germs! I love that baby waaay to much to possibly get him sick!
Tuesday, March 24, 2009
Practice makes perfect
After that fabulous experience it was time for 'craft night'. We really had no idea what to expect, so we sat in the conference room chatting with one of the nurses while we waited for someone to come with the key to open the 'craft' cabinet. It turns out that each NICU family receives a Creative Memories scrapbook to work on every Tuesday night. They have tons of scrapbooking paper, stickers, letters and supplies to create pages. Lacey had a great time using stamps and stickers to decorate some pictures for Lawson.
Just as we were leaving, we were told that it is a very good possibility that he will need to have the breathing tube put back in because he was breathing pretty hard. The Nurse Practitioner said that it's normal for babies like Lawson to come off the ventilator, get some practice using their lungs, wear themselves out, and then go back on the ventilator. It definitely wasn't the news I wanted to hear, but whatever it takes to get him better!!! I'd much rather have him getting some practice using his lungs than not!
Monday, March 23, 2009
Another good day
The UAC, Umbilical Arterial Catheter, has been in since birth and is used to take regular blood samples. It goes in through the umbilical cord into an artery and gives an easy blood sample without sticking him. Since his umbilical cord is doing what it's supposed to do, which is dry up and fall off, it was time to remove his UAC today. It is both good and bad. Good because now he has one less 'tube' coming out of his body. Bad because now when they need a blood sample, they have to prick his heel.
He's still on the conventional ventilator. It is set to 20 breaths per minute. He has been breathing around 45 - 55 breaths per minute. What's great about that is that every number over 20 is a breath that he's taking on his own!!!
Other exiting news, that only a child's mother can appreciate . . . he had his first poop!! And I got to change it! :) According to the neonatologist, the stomach and it's functions are pretty low on the totem pole for oxygenation, meaning that his body has a way of getting oxygen to the 'important' organs, like the brain and heart first. Now that he's breathing much better, we're moving toward removing the breathing tube and possibly beginning to give him breastmilk through the feeding tube, so we needed to clear out the meconium that's been sitting in his intestines for 10 days. Unfortunately, in order to get things moving, he had to have a little help with a glycerine 'chip'. Poor guy!
We're all excited about tomorrow. Brian is going to work early so he can leave early. I'm going to stay home with Lacey and grandma. Then we're all going to the hospital for 'Family Craft Night' at the NICU. When I explained it all to Lacey this evening, she was running around the kitchen yelling, "Yeah!!! I get to make a craft!!! I love CRAFTS!!!" She'll be able to play and have fun making crafts in the waiting room with grandma and other NICU siblings while we visit with Lawson. What a perfect day!
Sunday, March 22, 2009
Things for which we are thankful today
- First and foremost, I'm thankful for the ultrasound that let us know there was a problem. If we would have never gotten that ultrasound and had been delivered at Rex, like we'd planned, he would have either not made it to full term or they would have had no idea what was wrong with him when he came out limp and lifeless and been ill equiped to care for him.
- He is at one of the best hospitals in the Southeast for neonatal care and the only Level IV NICU nearby.
- The original possible diagnosis of hydrops fetalis was incorrect. He would have had a much lower chance of survival if this would have been the case.
- The question of whether or not the entire chest cavity filled with fluid was squashing the lung or the lung was not developed has been answered. He has 2 lungs and they were just squashed by all that fluid.
- All the fluid has been drained from the right chest cavity and so the right chest tube has been removed.
- The catheter drawing air from around the heart has been taken out because the air has not reaccumulated.
- He has been switched from the jet ventilator to the conventional ventilator.
- Both the brain ultrasound and CT scan showed no signs of seizure.
- He is beginning to tolerate more stimulation.
- He continues to fight through each battle.
- We have each other; so many of the NICU mothers don't have a partner for support.
- We have innumerable friends, family, coworkers, business associates, supporters, prayer warriors, and complete strangers on our side.
Needless to say, today was a good day. Overall every report we got was positive. His morphine was turned way down, so he was more awake than usual. He never opened his eyes, but he did move his arms and legs quite a bit. We were allowed to briefly hold his hand and he grasped on tight to his grandma's finger! Yet another reason for happy tears! The only other thing to report is that they're doing a spinal tap tonight to check for any other neurological problems that the first two tests may have missed.
We really want to say thanks to everyone who's reading this blog and cheering us on! Since the majority of my day is spent at the NICU with Lawson or taking care of Lacey, it would be overwhelming to personally thank each person who has stopped by or sent food, money, cards, prayers, gift cards, gifts and well wishes, so hopefully you'll pardon my lapse in manners, and accept my sincerest gratitude for everything everyone has done for us. You will never be forgotten!
Saturday, March 21, 2009
A mixed bag
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.
Friday, March 20, 2009
Two steps back
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
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!
Thursday, March 19, 2009
No longer on the bench
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 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
Reinforcements arrive!
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!
Wednesday, March 18, 2009
Catching up
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!
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 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!