Saturday, May 30, 2009


I would love to share every detail of our amazing last few days, but that will have to wait! As I sit here on my very own couch, pumping, I'm eagerly waiting for my next turn to snuggle with our amazing little miracle, Lawson. Yes friends, that's right . . . Lawson is home! We were surpised by that news when we arrived to spend the evening with Lawson in the Care By Parent Room yesterday! We had no idea until then. I think they wanted to make sure everything was certain before they told us.

As much as I would LOVE to invite everyone over to love on our little man and of course to show him off, we have to set some ground rules per doctor's orders. We have just spent 11 weeks in the Neonatal Intensive Care Unit with a VERY sick boy and do NOT want to go back. A simple cold may be annoying for us grown ups, but it could send Lawson straight back to the place we've been waiting so long to leave. Remember Lawson has only 1 and 1/2 lungs. He is also still 'working' at eating and using lots of calories to do so. So he needs all the rest he can get to continue growing. Please know we will have the biggest, happiest party to thank all of Lawson's 'fans' as soon as we feel he's healthy enough!
On to the ground rules (Andy and Beth, does this sound familiar?):

*Absolutely NO visitors for at least 3 weeks.
*I know that most of our friends have young children, but unfortunately the main thing the doctor said was ABSOLUTELY no young children for several months, except, of course, Lacey, since we can't really kick her out! lol (We have pulled her out of daycare so she doesn't bring home any germs from there.)
*We will not be leaving the house with Lawson for a while. We haven't decided for how long yet. We will probably not be going to church, birthday parties, or other large gatherings as a family for quite some time.
*When we begin to accept visitors, we will expect everyone to wash your hands, whether or not you touch him.
*If you or anyone in your family have shown any symptoms of illness, please DO NOT visit until all symptoms are gone.
*Please call before visiting, so we can let you know if it is a good time.

Please understand we don't want to hurt anyone's feelings. We just have to protect Lawson's health at all costs.

So as I said, I'll fill in all the blanks later. For now, here are some pictures.

Goodbye Intensive Care Nursery!

Wednesday, May 27, 2009

Driving and Crying

Yesterday was an extremely stressfull day for all of us! I didn't feel like blogging about it and thought about leaving it out, but since this is as much MY diary of our experience and opportunity to vent as it is keeping everyone else informed, I've decided to include it. When we arrived at the hospital, Amanda, the speech therapist was at Lawson's bedside. She greeted us and then said, "So I've heard some changes have been made to Lawson's feeding plan. . . " We told her about Dr. Malcom's decision to carry on with breastfeeding. She reiterated that she didn't feel like it was safe for Lawson, but suggested that we try it under her supervision to be sure. While watching Lawson breastfeed, she was convinced that the results of the swallow study were in fact correct and recommended that we stop breastfeeding immediately for Lawson's safety. We then switched to the bottle. He was quite fussy and I was having trouble getting him to take the bottle. With Amanda and a few nurses offering suggestions, we switched positions several times, changed the bottle nipple, burped him, gave him the pacifier, among other well meant suggestions. His nurse piped up to share that the nursing student, who's never fed a baby before, was able to get him to take 45ml that morning. One of the other nurses said, "You're his parents, you know him better than anyone else! You'll know what to do." To be perfectly honest, at that moment, I really didn't feel like I knew him at all and was feeling pretty inept! Not to mention the screaming baby in the bed space next to Lawson adding to the stress. By the time we were finished with the feeding, Brian really wanted to meet with Lawson's newest doctor along with Amanda and the NNP to talk more about why the plans changed. I was sooo finished talking to people at this point and really needed to pump, since I was unable to breastfeed. Plus my mom was patiently waiting in the waiting room for her turn to snuggle with Lawson. I really want my mom to have special time with Lawson and she doesn't come to the hospital that often, so I just wanted that experience to be over so she could come back with me. I finally convinced Brian that we'd had enough talking for the day and he left to pick up Lacey.
As soon as my mom got back there, she and Lawson began their cuddle session, so I was free to pump. As I opened my pump bag, I quickly realized the pump parts weren't there. I remembered the bag had turning upside down in the truck. I always keep the pump parts in a ziploc bag, so I assumed the ziploc had fallen out in the truck. I told my mom what I was doing and set out toward the truck to grab the pump parts; about halfway there I remembered that I needed to renew the parking pass before the office closed at 5pm. So I turned around and quickly began the LONG trek toward the parking office and figured I'd get the pump parts afterward. When I finally made it to the parking office the sign on the door might as well have been a slap in the face; Summer Hours 9 -3. Ugh! I backtracked to the parking deck empty handed to grab the pump parts so I could finally pump and called Danielle for a pep talk/gripe session. After a thorough search of the truck, I realized the ziploc was at home. Double ugh! At that point, I just got in the truck and began driving home after paying my obligatory $6. I figured I could just give mom more snuggle time while I headed home to pump there and then I'd pick her up later. As I drove, the stress of the day finally got to me. I cried all the way home. Brian and Lacey were so sweet when I got home. B offered to drive back to the hospital to get my mom and Lacey was really excited to have me all to herself for a while. :) Spending the evening with Lacey really helped me relax and we had a blast!
Now on to bigger and better things! I am sooooo counting the days at this point! We've been invited to the Care By Parent Room this Friday!!! We get to 'move in' Friday afternoon/evening and stay all by ourselves with Lawson until Saturday afternoon! We'll be in complete control of his care the entire time, without all the well meaning suggestions and observers. He will still be wearing the monitors and the nurses will be keeping an eye on his vitals remotely at all times, but he'll be all ours! I'm super excited! Of course, no one will give us an exact discharge date yet, but from the way people have been talking, it won't be long now.

In order for us to take him home, we have to complete a series of trainings and procedures, which began today. We had to watch a training video on Infant CPR/Choking. We've already been checked off on the ability to change his diaper, give him a bath, mix up and feed him the bottle, and swaddle him. Lawson was given and passed his hearing test, which is often a problem in babies who've had Persistent Pulminary Hypertension. Tomorrow we are to bring in his car seat for Lawson to take the car seat test. He will have to be able to sit in the car seat for one hour and keep consistent vital signs. The test stops immediately if his health is in danger; it does not, however, stop for crying. From what we've heard, there aren't many babies who enjoy the car seat test and many cry the whole time! Hopefully he'll fare better than I did in the car yesterday. We'll see . . .

Monday, May 25, 2009

Exciting Updates

Over the weekend we've had some really exciting changes! Lawson has yet another Attending Physician, Dr. Malcom, whose specialty is transitioning infants to home. He's also a big supporter of breastfeeding. He feels that the swallow study is an 'unnatural' way to check to see if breastfeeding is safe, since it is done in the lab and not actually at the breast. He believes that the best way to know things are going well is to watch the baby's stats- respiratory rate, heart rate, and oxygenation. Since all of Lawson's stats have been perfect during our previous breastfeeding sessions, Dr. Malcom has encouraged me to begin breastfeeding again! So that was some pretty exciting news for me! Because they're trying to help Lawson gain weight, they have been supplementing my breastmilk with 1/2 teaspoon of Infamil formula to add extra calories at each feed when they put it through the feeding tube. Now that he has begun taking bottles, they are still supplementing with the formula, so at least for a while, Lawson will need to take some of his nutrition from bottles but we can also breastfeed!

On Saturday, Brian and I split our day, so we could cover more time with Lawson. I went in for the 9am and 12pm feedings and Brian did the 3pm and 6pm. He took between 20 and 50mls each time! To save his strength, they gave him the rest of his feedings through the tube overnight. Then when I arrived at the hospital Sunday for his 12pm feeding, I noticed that Lawson's feeding tube was gone. His nurse said that Lawson pulled it out himself that morning after the 9am feeding. I guess he's ready to prove himself! :) They decided to let him keep it out and try taking all of his feeds by mouth today. They increased the formula additive in the breastmilk so that he can take less total volume and still get enough calories. As long as he drinks at least 40ml from the bottle or breast or a combination of both they consider it a success. He did great again today with Brian and me, taking every feed successfully!! I just got off the phone with his nurse (at 3:18am) and she said she put the tube in for his 3am feeding just to give him a break. She said he had been GREAT for her all evening! It's only a matter of time! :)

Friday, May 22, 2009

The 'H' Word

Today we met with Lawson's new Attending Physician. We hadn't met with any Attendings since Lawson moved from Room 4 about 2 weeks ago, so it was nice to finally speak with someone 'in charge'. Apparently, when your child is doing well, you get no love! lol Her arrival was actually a surprise. Brian was feeding Lawson his bottle and I was pumping, so we had the curtain pulled around the 'penthouse'. She peeked her head in and began talking with Brian about Lawson's bottle feeding. They chatted for a few minutes before she said, "I'll let you guys finish and I'll be back." As she was leaving, Brian asked if she was with lactation or a nurse . . . since she never introduced herself, we were a little confused.

When she returned she formally introduced herself and said, "OK, let's start by having you tell me about Lawson. You're his parents so you know him better than I do." We chatted briefly about how far he has come and the most recent ongoings. We told her about our desire to breastfeed and the findings of the swallow study. We spoke about the thickened milk and his progress in taking the required volumes. After we talked for a while, she said that within the next week we are invited to stay with Lawson in the Care By Parent room to 'prove' our ability to get him to take his milk by bottle. And then she said it, that word that we've been waiting to hear. She said that within the next two weeks, she thinks Lawson will be ready to go . . . home!! We're trying to digest that information slowly and realize that for that to actually happen, he will need to eat by bottle every time for several days in a row. At the same time, we must do this without forcing him to use more calories eating than he gets from the milk. Please pray for his strength and endurance. By the way, he's up to 6 lbs 13 oz today!!
Sleepy boy!

Here's our view from the 'penthouse'.

Wednesday, May 20, 2009


Lawson's surgery was 3 weeks ago today. He has made an amazing recovery and is right on track for his gestational age, which is about 3 weeks. His scars have healed enough that he was able to get the very first bath of his life today! I'm talking REAL bath, sitting in the tub with soap and water!! Of course he wasn't a big fan, but it was totally teriffic for me! He was actually really relaxed when we were finished. My mom and I dressed him in a new outfit and changed his linens too. He smelled so wonderful that I just couldn't stop sniffing him, especially his head! Not that I minded snuggling up with a stinky baby before, but it's just much nicer when he's REALLY clean, not just 'spit shined'. ;)

Yesterday, my mom and I both got our first chance to feed Lawson his bottle. I've had time to work through my disappointment of not being able to breastfeed and really enjoyed feeding him the bottle. I've also had time to come up with some 'pros' for bottle feeding. 1)He's still getting my breastmilk, just through a bottle. 2)We know exactly how much he's eating. 3)Anyone can feed him, not just me, so daddy and mamaw can bond with him too-and very soon Lacey! 4)When he wakes up in the middle of the night, Brian can be the one to get up with him!! LOL ;)

Since Lawson moved into his 'big boy bed' his nurses have been looking for a mobile. Apparently there are several around the NICU that babies can use during their stay. Since all of the ones they have were in use, my mom and I went and bought him one and he loved it! So Lawson got his first mobile yesterday.

As I mentioned in an earlier post, the TCN is a large room with about 14 bed spaces. Pretty much every space in the whole place is directly beside another space, except one, which we call the 'penthouse'. It's in a corner with lots of room. Another little baby, whose parents we've gotten to know over the past few weeks had been in Lawson's room when he was in the Intensive Care Nursery. She got moved to TCN before we did and was in the 'penthouse' when we got there. We were next door neighbors until today . . . Little Ms. Katie got to go home today! So Lawson got upgraded to the penthouse.
Hopefully Lawson will be inspired by Katie's progress and start taking more from his bottles. The nurse who had been taking care of her today before she left said, "Oh Lawson took 25ml this time? That's what Katie did just a week ago and she's headed home today!!" Keep praying!! Here's a pic of my clean boy!

Monday, May 18, 2009


We got a call this morning letting us know that the speech therapist was concerned that Lawson wasn't progressing like she would like to see and felt that he needed to go ahead with the swallow study. Brian and I met at the hosptial around 2pm to get the results. I knew I needed to pump a little before we tried breastfeeding for his 3pm feeding, but I wanted to get a little Lawson lovin' first. So I was snuggling with Lawson when the speech therapist arrived. She started by saying, "Well, everything's O.K. but I have good news and bad news." To be perfectly honest, I didn't hear exactly what else she said besides, "It's not going to be safe for Lawson to breastfeed." I'm sure there aren't a lot of people who can truly understand how devistating those ten words were for me.

To me it's the ultimate bond between a mother and child, a special connection that no one else can duplicate. I breastfed Lacey for 14 months and loved every second of it. When she was an infant, I loved the way she would grunt and snort as her eyes rolled back in her head in pure delight. As she grew and learned the sign language for milk, she would look longingly at me squeezing her fat little fingers in perfect form, looking to fill her hunger for our special time as much as the hunger in her tummy. Not to mention the ease of delivery, no bottles to make, nothing to measure or wash, nothing to remember. I've joked that if I had to remember to pack bottles in my diaper bag for Lacey she would have starved!

As she noticed the tears welling up in my eyes, Amanda, the speech therapist, apologized for being the bearer of the news. Since I was crying, we pulled the curtains around us. One of the other nurses assumed we were breastfeeding and called across the curtain to see if we needed the scale. "Mrs. Levering, are you breastfeeding? Do you need the scale?" I choked back the tears to answer and have been sniffling ever since every time it comes to mind. Pat, the lactation consultant, came by soon after and obviously hadn't heard the news. After we filled her in, she assured me that we can continue to 'lick and learn' with an empty breast to continue our bonding and help him remember the skill in case he can grow out of it.

Amanda, the speech therapist, drew us a picture of the esophagus and trachea and showed us what was happening when Lawson swallows. The epiglottis is supposed to cover the trachea when we eat or drink. It seems that when Lawson takes breastmilk, both from the breast and a bottle nipple, the epiglottis doesn't cover adequately and some of it goes into his lungs. Since the respritory system has been Lawson's main problem, we must protect his lungs.

Now on to the good news. As I mentioned before, I'm not sure of all the details, but the good news is that Lawson can safely drink from a bottle if the milk has been thickened with a special gel called Simply Thick. Daddy gave Lawson his 'first' bottle today; Amanda was actually first, but we didn't see it, so it doesn't count! ;) He was able to drink 15ml through the bottle. If he is awake and aware at his feeding times, the nurses have been instructed to try bottle feeding first and then finish with the tube feeding.

And so I continue my relationship with the pump . . .


It's 12:22 am and I just got home from the hospital. Lawson's feeding schedule is every 3 hours at 3, 6, 9, and 12 both am and pm. They want me to try to be there for as many feedings as possible to help him get the hang of it. Both yesterday and today I was able to make it there for the 3pm and 9 pm feedings. I was there for a few others on both days, but he was either asleep or not in the mood.

Lawson has finally surpassed his birth weight of 6lb 2oz (which a lot was the fluid filling his chest cavity anyway). Tonight he weighs 6 pounds 4 ounces!!! The way they figure out how much he is eating each time is to weigh him both before and after the feeding and subtract the difference. On both days at the 3pm feeding he was able to get about 5ml. Last night at 9pm he got 10ml and tonight . . . 16ml!!!! =) It's so nice to be there with him at night; it's much quieter and more private. It seems like he can relax and concentrate better during the night feeding as well.

We still have no idea how long he will continue to be there. Like always, Lawson is calling the shots. When he's able to take his entire feed several times a day from breastfeeding or bottle feeding we'll know we're getting close. They are keeping a close watch to make sure he's not expending too many calories 'working' to feed. Please continue to pray for his strength and endurance.

Friday, May 15, 2009

Slow but promising start

Lawson was able to take almost 4ml during our breastfeeding session today! That's a tiny amount, considering the whole feed is about 54ml, but lactation and speech were very pleased for our first try! The TCN is usually a pretty quiet place, but for some reason just as we were getting started, there was all kinds of commotion, some babies leaving, some babies crying, some babies moving in, and tons of monitors going haywire. So considering the environment we were working with, he did GREAT! He was able to latch on very well. They were impressed that when he swallows, he pauses to ensure that the milk is going to the right place before moving forward. They said this was a self monitoring mechanism that was 'mature' for his age. That's my boy!! :)

As per their suggestion, we tried it again later in the day. For some reason, the stars just weren't aligned for us today, because after a very quiet afternoon, the bedlam ensued again as soon as we started our second session!!! We'll try it again tomorrow! Wish us luck!

Thursday, May 14, 2009

So Close

Lawson had a big day today. He got moved to a more private area of the TCN, since we're there so often, pumping and practicing 'lick and learn'. The spot he was in yesterday was directly in front of the nurses station, so every time we closed the curtains, it took up half of the walking space in front of their desk. So now we have much more room and privacy. This morning we tried 'lick and learn' by ourselves. He did OK, but wasn't really interested, maybe because he wasn't hungry. Then this afternoon, during his meeting with speech, he was able to take 7 ml through the bottle nipple! Both speech and lactation think that he's ready to try breastfeeding for real tomorrow! I'm soooo excited! This evening, Dr. Rice came and removed his broviac!!! Lawson handled it beautifully. So now he doesn't have anything in his body execpt the gavage feeding tube, which goes in his nose, down his throat, and into his stomach. Hopefully it will be gone soon too . . .

Wednesday, May 13, 2009

Busy Day

When I dropped Lacey off at daycare this morning, we saw one of her little friends from class, Tyler and his grandmother, who were just visiting for a few minutes. He's the child who had surgery at Duke to remove what was thought to be a tumor, right around the same time as Lawson's surgery. Both of our families celebrated successful surgeries; it seemed that it wasn't a tumor after all. However, Tyler ended up having to have another surgery and this time it was found to be malignant tumors. He will also need to undergo chemotherapy. His family will need to travel to Mass Gen (I think I remember that correctly.) for the special type of chemo that will help him. His grandmother says that there is a very good chance that the chemo can completely cure him. So tonight I am asking for your prayers for Lacey's friend, Tyler and his family. We have all seen the miracles that can happen when many of us come together in prayer!!

I got to the hospital early today and was stunned to find that Lawson's been moved into the Transitional Care Nursery, TCN!!! They told us a long time ago that when your child gets moved there, he is definitely on his way home!! They still won't tell us how much longer, but this move is HUGE!!! I felt like doing cartwheels down the the long hallway leading to the TCN! :) I now have to pass through two doors labeled "Authorized Personnel Only"; I feel so important! :) I saw his little crib as soon as I walked through the door. Unlike the NICU with a whole bunch of smaller rooms, the TCN is one large room with about 14 beds and 5 or 6 nurses. The TCN has a core set of nurses, so we probably won't be seeing Lawson's Primary Nurses much any more. We love our Primaries bunches, but if this is our ticket home, we'll take it!

I met with lactation again today and was again amazed at my little champ! If yesterday's session was great, then today went even better! Then later in the day Brian and I both met with the speech pathologist while she was practicing swallowing with Lawson. I made a little video clip of what she does during their session. Tomorrow our hero, Dr. Rice, will be removing his broviac, the last thing poking into Lawson's little body. I can see the light at the end of the tunnel!

Tuesday, May 12, 2009

What a Day!

I finally felt ready to visit with my Kindergarteners and coworkers today. When things were so uncertain with Lawson, I just knew I couldn't put on my teacher face. Today I had some paperwork to deliver to school. I could have mailed it, but now that Lawson is doing so great and my kiddos are tracking out tomorrow, it seemed like the right time. Besides, when Lawson comes home (which I hope is before they track back in -wishful, I know) I don't plan to leave the house with him for quite some time!! :)

It was great to see my class; they were so sweet! I only got to spend about 10 minutes with them, but they were great! It's easy to see that my sub, Mrs. Thomas, has done amazing things with them. She really jumped in and took the reins when I basically left her with nothing. I thought I had 6 more weeks to solidify my maternity sub plans! So thanks to Mrs. Thomas and my amazing Teaching Partner, Mrs. Fernandez, my kids are great! It was also teriffic to see my Brassfield family. They have been so wonderful and supportive to us through this whole ordeal. I know I haven't said 'Thank You' enough to them!

After my Brassfield visit, I met Brian at the hospital for our 'lick and learn' session with Lawson and lactation. He was an absolute CHAMP today! He was interested and engaged for 25 minutes! He latched right on and stayed happy almost the whole time! He even stopped suckling a few times to smile at me! Ahhhhhh! :) The lactation nurse said that it was huge that we've only done this a few times and he's doing so well. She said that the average preemie takes 8 - 10 sessions to even latch on! I reminded her that Lawson isn't the average baby; he's been beating the odds for 8 weeks! :)

Monday, May 11, 2009

Another Day

Brian and I met at the hospital this afternoon for our 'lick and learn' session with lactation. Lawson did an awesome job of latching on and sucking! Yet he is still reacting negatively to swallowing even drops of milk, so the Speech Pathologist is continuing to work with him on that. He is continuing to get his nutrition from my breastmilk through the gavage tube and TPN and lipids intraveniously. He's having several throw ups with his feedings and will start a medication to help with his digestion tonight. His new doctor felt he was ready to be taken off the morphine, but after only a few hours of being off the morphine he was definitely showing signs of withdrawal. He has been on morphine for 2 months, so he has had plenty of time to become addicted. After a while they made the decision to put him back on the mophine and wean him off it at a much slower rate. This means that it will be a few more days before they can remove the broviac catheter since it is delivering the morphine. I'm not sure if I've blogged about it, but the broviac was installed before his surgery in case they needed to quickly give him medications or blood transfusions. It is the only invasive tube left on his body. He has several stickers with leads to measure his heart rate, respitory rate, body temperature, oxygenation and a cuff to measure blood pressure, but no more IVs, no more PIC line!

Here's a quick clip of Lawson sucking on his pacifier. You can hear it, too cute! :)

Sunday, May 10, 2009

Paying Attention

We've had a terrific weekend! Yesterday morning we took Lacey strawberry picking. The whole experience took about 30 minutes but she had a blast! I highly recommend Page farms, behind Kohl's at Brier Creek. When we got home, Lacey made mini strawberry pies all by herself. She's such a sweetie; she made a card and two strawberry pies to welcome our new neighbors to the neighborhood. When that was all done and we got her down for her nap, Brian and I went to the hospital to visit with Lawson. We were surprised at first to find that he had moved to a new room. We found out that that means he's doing VERY well. :) Since lactation isn't there on the weekend, we decided not to try 'lick and learn' without them. Instead I kangarooed with Lawson all afternoon. He was in such a good mood and even smiled at us. :) We got home just in time for a late dinner and Lacey went to bed soon after. My mom is a huge Nascar fan, so we spent the evening watching the race. (Definitely not my thing, but it was great to see her have so much fun.)

My Mother's Day began when I awoke to breakfast in bed from my wonderful husband! When Lacey woke up, she brought me her present, a snowglobe with an angel that plays music. I also got a beautiful bouquet of flowers delivered from my sister and an IOU for teak lounge chairs for the deck.

Today we decided to try out a new church. I've been a believer for years, but haven't found a church I like since I left Jacksonville. This whole experience has given Brian renewed faith and it just felt like time to start our search for a home church. After a little research, we decided to go to The Summit just off Alexander Dr. It was really a great experience, very welcoming and comfortable. As we arrived, there was a table to help visitors find their way around. They told Lacey all about the awsome children's church called kidslife. She was feeling a little shy today, so she chose to stay with us. She was fairly engaged for about 15 minutes, long enough to hear the praise and worship songs and the beginning of the sermon. We were able to quietly entertain her for most of the service with a very long potty break in the middle. We honestly felt like the sermon was geared to us. It was all about how it's hard to believe in the goodness of God when things in your life are so bad. He even used two examples that spoke directly to Brian- a young girl with MS (Brian's mom died at a young age of MS) and a baby being born very sick. We'll definitley check it out again!

After church Mom and I headed to the hospital to visit with Lawson, Lacey and daddy spent the day together. Lawson was an absolute dream today! He even let us give him a sponge bath without crying! It really seems like he's going to be a good baby. How can one mom be so lucky? Two amazing kids!

Our evening ended with special hot fudge cakes topped with vanilla ice cream and sprinkles, made by Ms. Lacey. We got the Duncan Hines Warm Delights Minis, which are basically the microwave version of Easy Bake Oven cakes. Lacey did almost everything herself until we got the the ice cream and sprinkles. Just to make things go a little more quickly I did those. To my surprise, Lacey stomped her foot and said, "Damn it Mommy! I wanted to do the sprinkles!" When I inquired as to where she'd heard that (truly expecting to hear 'Daddy') she said, "On the stage". I was quickly reminded of an anecdote the preacher told this morning. He was telling about a new Christian who was just learning to pray. According to his story, the new Christian was, of course, a little awkard and uncomfortable praying out loud in a small group prayer circle. The preacher said, "Please give me a little grace here, as I'm just quoting exactly what the guy said. So the guy says, "Oh Lord, Oh God, Oh Great Spirit . . . No wait, wait. . . no. Damn it!" Now all you kids, I'm not approving of you saying that word, I'm just telling what the guy said!" Wow! You take your child to church to learn more about Godliness and she comes home cursing! And we thought she wasn't paying attention! LOL I truly can't stop laughing!!

Friday, May 8, 2009

My new job

From what we've learned, the road to teaching a preemie to breastfeed is complicated. The natural reflex that helps a newborn feed, coordinating sucking, swallowing and breathing, is not yet developed in a preemie. If he doesn't use that reflex when the gestational age to do so is finally reached, it goes away. Plus if the baby has been intubated, especially for an extended period of time, he can develop an oral aversion, associating anything in the mouth with discomfort. So the process must be carefully executed.

The speech therapist is involved to make sure the baby is correctly using his mouth, tongue, lips, and jaw. She's also making sure he is safe, only swallowing milk when he is ready. So the entire process is broken down into steps. The first step is what the hospital calls 'lick and learn'. For this, the mother will pump first so that the breast is empty. She then introduces the empty breast so the baby can practice latching on and suckling without the stress of swallowing, as the lactation consultant and speech therapist watch. During the same time frame the speech therapist will be working with him on his ability to swallow. She uses an empty bottle nipple, putting a few drops of breastmilk in at a time, watching how he reacts to swallowing. When both of these are mastered, the mother will try feeding, under the supervision of lactation and speech therapy. Since preemies can lack the strength to suck for extended period of time, they often need some supplemental form of feeding until they gain more strength.

When a baby is in utero, he gets plenty of practice swallowing, because he regularly swallows amniotic fluid. One of the things we have learned about Lawson is that his original problem of having a fluid filled chest cavity was probably caused by swallowing difficulty, possibly causing the polyhydramnios (too much amniotic fluid). So the speech therapist is taking extra care to ensure that Lawson can safely swallow before we introduce any breastmilk orally. After she spent some time working with him, she realized he is not yet ready to safely do the 'swallow test' I mentioned in an earlier post. She will instead be working with him to help him develop his swallowing ability.

We had our second meeting with Lactation today. She said Lawson was a pro at latching on! He is currently able to do a series of about 4 'non-nutritive sucks' (not receiving any milk) followed by a swallowing action. She said this was a great start. We will be trying this each day for about 5 - 10 minutes at a time until he is able to do several suck/swallow series. The special time and closeness we share during this activity makes it something I look forward to with great anticipation! The lactation consultant said that if breastfeeding is my goal, it's their goal too. So I'm considering this my JOB until we're both pros at getting him fed and getting him home!!!

Thursday, May 7, 2009

Three Things

Eight weeks ago we asked the doctors when we would be able to bring Lawson home. They told us there was no way to know, but that most preemies stay at least until they have reached their gestational 'birthday'; Lawson's was April 25. In order for any baby to leave the NICU, they must do 3 things: 1) Breathe on their own 2) Regulate their own temperature and 3) Breast or bottle feed (apparently this one takes the longest). They also told us that Lawson was not like 'most' preemies. Before we could even begin to check off any of those 3 things we had to fix his lung. After 7 weeks of trying with medications, ventilator settings, and controversial steroids, Dr. Rice did just that with what was considered the 'last ditch effort'.

Yesterday his nasal cannula was removed and he has proven that he can breathe on his own with no support!! One check!

Today he was moved to a 'big boy' bed, a crib with no heater!! (And he got to wear his first outfit!) Two checks!

This afternoon we had our first meeting with Lactation/Speech Therapy to prepare for teaching Lawson to breastfeed! The road is long from here, but at least there's an end in sight! As soon as we can teach Lawson to breastfeed, we'll be bringing him home!

Another incredible milestone was reached today . . . we heard Lawson cry! We have waited 9 weeks, fearing it would never happen at all, for this moment. I never thought I would say this, but hearing this baby cry was one of the most beautiful sounds I've ever heard!

Wednesday, May 6, 2009

Mom of 2

I went to the hospital early today so I could 'kangaroo' with Lawson. This is what the NICU considers a special way of holding your baby. You wear a button front blouse and unbutton it, then hold your baby, skin to skin, to encourage closeness and bonding. I wish I could find the words to describe that experience today! I sat with Lawson on my chest for about 2 hours today. Just before I left the hospital, they removed his nasal cannula. He was breathing beautifully and his oxygen saturation was between 98 - 100% (that's really good) with no support. So at this point the only tube he has left is the gavage feeding tube. It will remain until he learns to feed, which hopefully will be very soon!!

As I was leaving the hospital, Brian was arriving for his turn to visit with Lawson. I planned my day so that I could leave the hospital early enough to pick up Lacey from daycare. Her class is creating a vegetable garden and her teachers have asked us to donate some plants. Lacey was SUPER excited about it, so we went to Lowe's for Lacey to pick out some vegetable plants and flowers. She was just adorable, carefully picking each plant- watermelon, cantelope, sweet banana peppers, tomatoes, rutabaga, yellow bell peppers. She's actually excited to eat what they're growing. We'll see how that works out. lol

It was a great day with both of my children. Hopefully it won't be much longer before I can have a great day with both of my children at the same time!

Tuesday, May 5, 2009

Steady Progress

It is unbelievable how wonderful Lawson continues to do! He was so sweet today. He got a little bit of a bath, so it was even sweeter to hold him! Honestly, it was wonderful to finally get to hold him, but he really did stink! Daddy held him for about 30 minutes and he was just wide awake and happy the whole time! For a while, they were having a staring contest! :) It was great to see Lawson with Brian and for both of them to be happy. This whole experience has taken quite a toll on us all, especially Brian. So having good news is good for all of us. One of the Nurse Practitioners stopped by to say, "I'm not his NP today, but I just had to stop by and say WOW!!! I just can't believe how well he's doing!"

We had a long chat with Dr. Lenfestey, the attending, today. He was VERY impressed with Lawson's progress. Today is the first day we've seen Dr. Lenfestey since very early in Lawson's life. He said more than once, and in more than one way that Lawson was a very 'unique' and 'special' baby and that they really hadn't dealt with a case like this before. We talked about how the surgery had been the very last resort and ended up being the turning point to success. The doctor pointed out that ALL of the previous surgeries they had done to remove all or part of babies lungs had not turned out as well as Lawson's did. So in that way, he really is unique!

He is continuing to make steady progress. They started his feeds last night and will be steadily increasing them over the next few weeks. Tomorrow Lawson will undergo a 'swallow test' to see if he is ready to begin 'real' feeding. During the test they will give him something to swallow while under the x-ray to check and see if the fluid goes to the right place. If he is ready to swallow, we can begin teaching him to breastfeed tomorrow. I'm sooooooooooooo excited about that! One of the things he has to learn before they can send him home is feeding, so the sooner we start, the sooner he can go home!!

They are weaning him from the pain medications very slowly to prevent withdrawal. He has been on them for so long at such a high dose that he really is addicted to them. There is a scale that the nurses keep to measure his level of withdrawal symptoms. Hopefully he will be able to give them up without too much of a fight.

He is still depending on the nasal cannula for breathing support. We got evidence of that this evening when the tube accidentally pulled loose. As we were transferring him from my arms back to his bed, the tube that carries the air to his nasal cannula pulled loose from the machine. His oxygenation dropped as we were trying to hook it back up and then went back to normal soon after replacing it. Cheri says that's fine since he just had surgery and is showing amazing progress to even have his breathing tube out. She said he'll continue to make progress and soon will not need any support to breathe.

I couldn't get the video to upload, so I'll try the youtube option next, which also takes a while. Stay tuned. I didn't get any videos today, because I was too busy snuggling with my sweet smelling sweetie! I do have a few pics to share though . . .


I was so exhausted yesterday evening that as soon as we got home from the hospital, I laid down on the couch and fell asleep until midnight! I pumped and went straight to bed! So this is my first opportunity to catch everyone up on our wonderful day yesterday! Lawson's nurse called early to let us know they would be taking him off the ventilator at noon. When my mom and I arrived at the hospital, he was already off the ventilator! They were using a nasal cannula to give him just a little bit of support. He looked absolutely amazing! The awesome suprise came soon after we returned from lunch. I got to hold him!!! He was a little upset at first, but we were able to calm him down with sugar. Seriously, they have these little containers of sugar water made just for calming down upset babies! We got a video clip of how it works- too funny! I'm going to upload it, but it takes forever, so if you don't see the video, check back later. So I ended up staying there holding him until almost 6pm. Needless to say, it was a great day. :)

Keep up the prayers! They're working!

Sunday, May 3, 2009

Moving along

My sister and her family left this evening and I went to the hospital by myself after that. When I got there, there were tons of doctors, nurses, and the RT standing around Lawson's bed. Apparently, he had been switched to the conventional ventilator and wasn't happy about it. His heart rate had skyrocketed and his oxygenation was down. By the time I got there, they had gotten him settled down by adjusting his ventilator settings and giving him more medicine. While I was there, his stats were pretty stable with a few ups and downs, but he did cry quite a bit. I was able to settle him down by giving him his pacifier. The video clip shows him sucking on his pacifier while holding onto my hand. His nurse said that he may be crying because the conventional ventilator gives him breaths in a different way. While the jet ventilator vibrates the air into the airways, the conventional ventilator forces air into his lungs. She said this could possibly be painful since he had stitches throughout the remaining part of his left lung. I asked why they couldn't just take him off the ventilator all together to prevent this. She said they have to make sure he's ready first and they will be giving him pain medication to ensure his comfort in the interim. She said if he does OK tonight, they will be extubating him tomorrow. Pray for his comfort and success tonight! We'll keep you posted!

Saturday, May 2, 2009

Another great day

My sister and her family came to visit today. She and I went to the hospital shortly after they arrived. Lawson was awake and happy for quite a while when we first got there and slept peacefully after that. He was also sucking on his pacifier! (Sorry, no pics; I was too caught up in watching him to get the camera!) That was great to see, since he'll need to practice sucking in order to learn to feed. His nurse said he'd had a great morning and she thinks he'll be a 'very good baby' when we get him home. :) She said he didn't 'cry' often and when he did, she was able to calm him down by putting her hand on him. When he cries, it doesn't make any sound yet, since the breathing tube is splitting his vocal cords. Lawson is 7 weeks old and I've never heard him cry. Dr. Rice mentioned that there could be some semi-permanent/permanent paralyzation of his vocal cords, since he has been on the ventilator for such an extended period of time. Only time will tell this. We'll cross that bridge when we get there.

They were planning to move Lawson to the conventional ventilator today, but a new baby arrived in his room today that required A LOT of extra attention. They want to wait until the Respiratory Therapist can focus all his attention on Lawson to make sure everything is going smoothly. Hopefully tomorrow will be the day. We'll keep you posted.

Friday, May 1, 2009

On the upswing

By the time we made it to the hospital today, it was late afternoon, but Lawson was wide awake and happy, happy, happy! Danielle left this morning, so it was just Brian, Mom and myself. Brian and I got a chance to speak with Dr. Auten, our current Attending Physician, for quite some time. He was really pleased with Lawson's progress and reviewed the plan for the weekend, with one minor change. He let us know that they would like to wait until Lawson is off the morphine and extubated before beginning feeds this time, just to make sure he doesn't get stressed out and throw up with the tube still in. We also found out that it's time to get a new doctor; Dr. Izatt will be Lawson's new doctor starting tomorrow. We've both met her briefly, but haven't had a chance to talk at length with her about Lawson yet. She has, however, been following Lawson's case, so she's caught up and ready to begin.

Lawson was awake for at least an hour while we were there today. Everyone who came by,-nurses, doctors, even other mom's we've met, commented on how 'content and comfortable' he looked today. You can hear us chatting with the nurse in the video about how well he is doing. It really seems like getting the unhealthy part of the lung out of his little body has literally given him new life! He is breathing better, seems more comfortable, is crying less, and overall just seems happier. His x-ray is also showing progress; the portion of the left lung that remains has already begun expanding to compensate! I truly believe we're on the upswing here!

Just before we left today, I had been at Lawson's bedside and just finished pumping. So I was by myself when Dr. Rice came by. He was all smiles and came right over to hug me. I just had to tell him about the blog and Lauri's comment about wanting to give him hugs and kisses. He was blushing and laughing when he said, "Aww, that's sweet, but completely unnecessary. We're just doing our job here." He's not only an amazing surgeon with excellent bedside manner, but he's modest as well. :)