Now that my breathing is stabilized and the possibility of surgery behind me, I need to grow. I haven't gained any real weight in 4 days. The hydrocortisone that was so good for my lungs can inhibit weight gain so the doctor will slowly start weaning me off it. She increased my feedings to 23 cc and might add some additional fat if I don't gain weight tonight. I had one Apnea and Brady this morning, but the doctor isn't concerned.
Clinically insignificant. Mom said those were the two most beautiful words she has heard in a long time because that is how the doctor described my PDA after my echocardiogram. The echo showed that the PDA is smaller and restrictive with normal heart functions. It is still open but there is no longer a flow reversal and the left side of the heart is not enlarged (which sometimes happens with PDAs). That means unless I start having respiratory problems again, there are no indications for surgery at this time. Yippee!!!!!
The hydrocortisone has really made a big difference. They have dropped my pressure again from 5 to 4 and I got the small RAM prongs back. These are much more comfortable and I don't have to wear all the bulky head gear anymore.
Only rough part of the day was the dreaded eye exam. All the preemies hate it, but we need it. There used to be a high rate of blindness in preemies, especially micro preemies like me (born before 26 weeks gestation or under 800 grams or about 1 pound 12 ounces). Now they can catch eye problems early and correct them before they lead to blindness. The eye doctor has to prop our eyelids open with a speculum. Even though it is only for a few seconds, most preemies drop their heart rate during the exam. That happened to me and they had to give me a break in the middle of the exam to let my heart rate come back up. The nurse had to turn my oxygen up to 35% but an hour later I made it back to 21%. The good news is that my eyes are ok, the bummer is that I have to have this exam repeated every 2 weeks until I go home.
Mom and Dad get a kick out of the faces I make when I sleep. Today I was blowing them kisses. Sometimes I pull out my feeding tube, so the nurses have to tape it to my chin. It's amazing how much trouble I can get into. Just wait till I start walking.
I have been tolerating the pressure of 5 and stayed between 21-25% oxygen which is really good. They have increased my feedings to 22 cc. Mom told me she spent the day putting curtains up in my room. She said the dogs were helping and trying to sneak off with my stuffed animals.
I think I would be a good magician because I am good at escape tricks. First the womb and now my nest. No matter how much the nurses tuck in my legs (extra straps and all), one always ends up like this.
Things are continuing to get better. The doctor has reduced the pressure in the bubble CPAP from 6 to 5 and I have been on room air (21%) for mosr of the day. I am getting 21 cc of breast milk with 30 calories and weigh 3 pounds! Even though I am a massive 3 pounds, this preemie hospital shirt is kind of swallowing me up. My smurf shoes are pretty cool though.
The hydrocortisone is working! D-sats are fewer and I have stayed on less oxygen so the doctor has postponed the echo to Wednesday. She said she doesn't want to rush surgery since I am responding to the steroids and wants to give them a few more days to do their magic.
Since I have been breathing like a big boy, they moved me to a big boy bed. Actually, they moved me because I was getting too hot, even inside the incubator with single plastic walls. The nurses tried turning off the air mode, but the moist air from the bubble CPAP made the incubator walls fill up with condensation. They called this "rain out". Usually they don't put preemies less than 1500 grams into an open crib and I am only 1300. After a few days of struggling to keep my temperature low enough, the doctor decided to give the open crib a shot.
So far so good. I am regulating my temperature all by myself. Mom and Dad feel a lot closer to me in the open crib because they can look over me and watch me sleep.
I am 5 weeks old today and have gained a full pound since I was born. Now I weigh 2 lbs, 14 ounces. The doctor told my parents that my PDA is now in the moderate category and is showing some blood flow reversal. Fingers crossed that the hydrocortisone makes a difference quickly. If my dips in oxygen saturation (d-sats) aren't improving by Monday, I will likely have surgery on Wednesday.
Bad news today. My PDA has opened up larger again. I have been desaturating a lot so most likely I will have the ligation surgery soon. My family is very scared about me having to have surgery. The doctor is going to start me on another steroid (hydrocortisone) that is supposed to strengthen my lungs. They will also increase me to a daily dose of lasix that will draw fluid away from my lungs. Mom and Dad have been worried for so long about this surgery. Since I am not improving and starting to have respiratory problems again, they just want it done so I can continue to progress. If I do have surgery I would be checked into the Children's Hospital across the street. I wonder if I would have my first ambulance ride.
On Wednesday Mom held me for 2 hours. Before yesterday I would get uncomfortable after 45 minutes and have to back in my isolette (incubator). Today we broke our record and I slept in her arms for 3 whole hours! It was awesome.
Since I am eating so much now (21 cc) the doctors have spread the feeds over 2 hours to help with reflux. I am gaining weight steadily and now weigh 2 pounds, 12.4 ounces. Mom and Dad can't wait till I am 3 pounds.
My breathing has been pretty stable the past few days, but my oxygen saturation levels still bounce all over the place. I got a chest x-ray today and the doctor said it was foggy which means there is some extra fluid around my lungs. Some of that is due to the moisture from the Bubble CPAP, but it also could be from increased blood flow from the PDA. I am going to start getting lasix every other day to dry me out. I will get an echo tomorrow to see how the PDA looks.
I have a new game that I play with the nurses. It's called the D-sat Disco. I can get the nurses to dance into my room anytime I want. All I have to do is let my oxygen saturation drop and they will glide over from the nurses station. The minute they step next to my bed I bring my saturation back up and they turn around and waltz back out the door. Round and round we went all day long.
I had a Brady episode last night that was bad enough that the nurse had to stimulate me to bring my heart rate back up. I wasn't very hungry through the night and had 3-4 cc of breast milk left over at a few of my feedings. They have decided to slow down my feedings to help with reflux. Now it is spread over 2 hours so I don't have as much milk in my tummy at one time. The doctor has also increased the amount of caffeine that I get each night since I am a little bigger now. All those months of Mom not drinking coffee and they actually give me caffeine.
Moved to a new incubator today. It is a much older model that only has single panes of plastic walls, so it stays a little cooler than they first one I was in. The first kind I was in was a Caleo. The nurses called it the "Rolls-Royce" of incubators because it had double plastic walls, a built-in scale, humidity, and raised and lowered. The NICU uses the Caleos for new admissions and preemies that need the most help. Even though my new house isn't as fancy, Mom and Dad like it because it means I am getting better.
The nurse said she wanted to be able to see my chest to be able to monitor my breathing, so I am back to just a diaper. Mom and Dad were bummed that I couldn't wear the clothes they brought for me.
I had some nutritional labs done and everything looked good. I had lost a few grams two nights in a row, but have finally gained that back and am up to 2 pounds 10 ounces. I am getting 20 cc of breast milk and 30 extra calories.
Today is St. Patrick's Day. I was expecting green milk, but instead I got a green blanket. Today is also my cousin Miles' 7th birthday. I can't wait to get out of here to play with him, Mason, and my other cousin that is on the way. Grandma and Grandpa Thurman's house is going to be so fun (and very loud) with 4 boys running around during the Holidays.
The nurses are having trouble keeping my incubator a good temperature because I am so hot. I can't help it. Have you seen how handsome my Daddy is? They have turned off the heat in the incubator and just have it on air mode, so a nurse dressed me up in this outfit. Mom and Dad were so surprised to see me in clothes for the first time.
I was measured at night. I have grown a full inch from 13.5 to 14.5. My head grew from 9 to 9.8 inches. Check out how big my foot is.
I am a 1 month old today! No cake for me, but they did increase my food to 19 cc and 30 calories since I weigh 2 pounds 9 ounces now. I am having a pretty good day with only a few episodes at the end of my feedings. Mom held me for a long time. She was surprised that I could pick up my head to try to turn it to the other side.
I have been having problems with the seal on the nasal canula staying tight.. The respiratory therapists have had to change it out 3 times already, which you all know is not my favorite. I am having it changed AGAIN at midnight and Mom and Dad are staying to watch over me. They are worried because when the seal isn't tight enough, the bubbles in the Bubble CPAP stop ( = no pressure). I have been keeping my saturation high even when the bubbles stop, but the nurse has had to turn my oxygen up to 30%. Mom is paranoid that the nurses won't notice that there aren't any bubbles if they are only watching me on the monitor in another room (since my saturation level stays in range).
At midnight the respiratory therapist showed Mom and Dad how I get the Flovent inhaled steroid treatments. He also let them listen to the bubbling sounds in my lungs with a stethoscope.
I am getting better little by little. Only a few A & B episodes since I got my old Trooper gear back on. I stayed at 25% oxygen for most of the afternoon. I am most comfortable when I am on my tummy. It is easier for me to digest my food that way. Now I am up to 18 cc with 28 calories added. I am getting the Lasix medication again to draw fluid away from my lungs.
I had fun sucking on a pacifier for awhile. It made Mom and Dad feel good to see me so calm and alert.
Another hard day today. Doctor said I have to go back to the large nose prongs that I had before. This made Mom and Dad really sad. I told them sometimes Storm Troopers have to go back and re-train every so often. I have had slightly less apnea today with the increase in pressure and the drops in oxygen saturation haven't been as severe. The doctor is starting me on Flovent which is an inhaled steroid to reduce the inflammation in my lungs. I get treatments twice a day. It will take about 3 days to see any effects.
A really pretty physical therapist came to see me today. She taught Mom how to read my stress signals and some calming techniques. It made Mom feel really good to know more ways to help me. The physical therapist showed her how to make better boundaries with the Z flow which is the malleable cushion that creates the nest I sleep in. The therapist also put up signs reminding nurses and visitors that I like my room quiet, dark, and free of heavy smells like food and perfume.
I am eating 17 cc of breast milk every 3 hours and they are adding 26 calories to each feed to beef me up. I love to eat and am up to 2 pounds 8 ounces. Sometimes I get hungry in between feeding times. This is a video of me from yesterday when the nurse took out my feeding tube to change it for a new one. Even though I get milk through a feeding tube, I am practicing how to suck. Mom and Dad get so happy when they see me do normal baby things.
Today has not been a good day and Mom and Dad are really nervous. I have had several episodes where the nurses have had to stimulate me to breathe and bring my heart rate back up. The doctor ordered the pressure on the Bubble CPAP back up to 6. I only lasted two and a half days with it at 5. My nasal canula was so crooked that my whole nose was pulled over to the left side of my face. They have started to give me vitamins which taste yukky. I spit the iron back up. Mom only held me for 15 minutes because my oxygen saturation kept dropping really low. I tried showing them my muscles to prove how strong I am, but Mom and Dad are still very worried.
I had a room full of visitors today. Mom tried holding me again, but I got tired really quickly. Preemies like it to be quiet and too many sounds all at once can be stressful. I was feeling a little mischievous and decided to kick my legs around when Mom was changing my diaper. She wasn't ready for how fast my chicken legs could move and I stuck my foot in the dirty diaper before she could pull it out of the way. Mom and Dad are really going to have to get better at this diaper changing thing or I am going to have lots and lots of baths.
One of my least favorite things is to have my nasal canula changed. I don't like having the tape pulled off my face, getting suctioned out, and having the tubes jammed up my nose. Normally it happens twice a day, but when my parents came in the evening it was all gunky and lopsided, so I had to have it changed again. I don't know any words yet so I just cried really loud to let everyone know that I was NOT a happy camper. My septum is red and thin and the doctors and nurses are worried about it breaking down. I wish they would just leave it alone, but if there is not a good seal with my nasal canula then I don't get enough oxygen. This is my cranky face.
Today was super awesome because Mom held me for 45 minutes. She loved feeling my soft hair and tiny fingers move across her chest. I felt so good that my oxygen saturation got down to 21% for awhile, which is the same amount as the room air that big people breathe. I have only had a few A & B episodes. The nurses think that they are linked to reflux because they seem to be happening at the end of feedings. I have been eating lots and am up to 2 pounds 6 ounces.
Another reason today is super awesome is that the cardiologist said my PDA is smaller. Even though it isn't closed it is restrictive so not as much blood is flowing through it. The doctor said they will monitor it and re-echo in a week. The best part is that my feeds will increase to 15 cc and that they are taking out my PICC line! You can see my left arm without the PICC line in the photo below. Mom and Dad love seeing me without so many tubes and wires. They are kind of obsessed and take photos of me even when I am sleeping.
It is hard for Mom when I cry out in discomfort and she can't do anything to make me feel better. She has to surrender her instinct and step aside while doctors and nurses adjust me or just sit there and listen to me wail. She can't wait for the day she can just scoop me up and hold me close.
I have only had a few A and B's today. One was right after a feeding and the nurse thinks it might have been caused by reflux. Sometimes I build up a lot of spit around my mouth and in the back of my throat and they have to suction it out to clear my airway. I hate to have my nose prongs adjusted, but if there is not a good seal I don't get enough air pressure. The doctor thinks I am doing well enough that he has ordered another reduction in pressure from 6 to 5. They are doubling my feeds from 6 to 12 cc of breast milk and reducing the IV fluids to a minimum.
Grandma and Grandpa's oldest friends Tepa and Randall came to celebrate my 3 week birthday with me today. Grandma made me a new Winnie the Pooh incubator blanket. Instead of cake I am going to get 6 cc of breast milk. It feels like a lot after 6 days of only 2 cc.
My oxygen saturation was in the low 30's today and I am doing so well on the Bubble CPAP that they are lowing the amount of pressure from 7 to 6. I haven't gone number 2 for awhile but that is to be expected with the trophic feeds and lasix (a diuretic to draw fluid away from my lungs). I gained a little weight and am up to 2 pounds 5 ounces!
Today I got a whole new breathing system called a Bubble CPAP. The bubbles maintain a constant amount of pressure to help keep my airs sacs inflated, but I am doing all the breathing on my own. The old breathing system I had was called a NIPPV (non-invasive positive pressure ventilation). It gave me the constant pressure to keep my air sacs inflated, but also forced a certain number of breaths per minute into my lungs. The Bubble CPAP is less support so that means I am doing better. I like the bubble sounds it makes.
The cardiologist came to see if my PDA was closed today. Unfortunately the valve is still open, but at least it is smaller. They are going to ahead and give me one last dose, which will make 6 nights in a row this time (I was treated for 3 nights during my first week in the NICU). This is the last dose I can have because the doctor said we are losing ground on nutrition. I can only have a tiny bit of breast milk to keep the digestive system working while on the medication and it is making me cranky. I hope it works. I am looking forward to having a full belly again.
Mom and Dad got to watch the nurse give me a bath tonight. I was so tuckered out that I didn't even put up a fight. My nose prongs kept falling out and for a second or two Mom and Dad got to see my whole face without any equipment. The nose prongs are irritating my septum and the doctors are worried about it getting too thin.