kisses from mommy
asleep on the couch w/ daddy
wide awake
Tuesday, November 11, 2008
Going Home
We left our mark on the fridge at the Ronald McDonald House.
Checking out of the hospital - at last!!!
Welcome Home!!
the "motherlode"
Wednesday, October 1, 2008
Coming Home!!!
We made it! No spells for 5 days! We've got the discharge orders, and we're taking our little baby home tonight. Just writing that started the tears of joy and relief flowing. I'm a little suprised - I'm not usually a happy crier. :)
After 71 days in the NICU Samuel Walter Johnson is coming home!
Birth Stats: 2lb 7oz, 15.25in, 27wks 3days gestation
Discharge Stats: 10 wks 1 day old, 5lb 14oz, 18.75in, 37wks 4days gestation
After 71 days in the NICU Samuel Walter Johnson is coming home!
Birth Stats: 2lb 7oz, 15.25in, 27wks 3days gestation
Discharge Stats: 10 wks 1 day old, 5lb 14oz, 18.75in, 37wks 4days gestation
pics from late September 08
family portrait
Taking after his father, Samuel is quite the connoisseur of the finest pacifiers the Mercy NICU has to offer.
Baby and Daddy
Monday, September 29, 2008
The Wait Game and Weight Gain
We're holding our breath waiting and hoping Samuel won't hold his so we can still come home on Wednesday. So far so good. We'll spend the night at the hospital tomorrow night to get used to practice using the equipment we'll have at home.
Our little baby is growing like a weed. Breaking out of his steady ounce a day gain, the last three days he's put on a total of 7oz! He now weighs 5lb 14oz. I think he's going for 6lb before he goes home! He is now 18.75 inches long.
Our little baby is growing like a weed. Breaking out of his steady ounce a day gain, the last three days he's put on a total of 7oz! He now weighs 5lb 14oz. I think he's going for 6lb before he goes home! He is now 18.75 inches long.
Friday, September 26, 2008
Restart the Clock
Samuel had a spell this morning. :( Apparently he hasn't grown out of them yet. So we'll be here for at least another five days. That means Wednesday is homecoming day - if he stays spell-free until then.
He's still growing (5lb 7oz now) and getting cuter by the minute. This morning when I got to the hospital he was wide awake and contentedly looking around. Being greeted by those big eyes and sweet little face was such a wonderful way to start the day!
We still got to learn all about the oxygen and the apnea monitor we'll be bringing home. They even went up to Ames and installed the oxygen concentrator in the house, so it will be all ready for us whenever we end up coming home.
In His time, in His time
He makes all things beautiful in His time.
Lord, please show me every day
As you're teaching me your way
That you'll do just what you say in your time.
It's not quite the same without the music, but this little chorus always helps me keep things in perspective. We'll get there. Sooner or later, but we'll get there. :)
He's still growing (5lb 7oz now) and getting cuter by the minute. This morning when I got to the hospital he was wide awake and contentedly looking around. Being greeted by those big eyes and sweet little face was such a wonderful way to start the day!
We still got to learn all about the oxygen and the apnea monitor we'll be bringing home. They even went up to Ames and installed the oxygen concentrator in the house, so it will be all ready for us whenever we end up coming home.
In His time, in His time
He makes all things beautiful in His time.
Lord, please show me every day
As you're teaching me your way
That you'll do just what you say in your time.
It's not quite the same without the music, but this little chorus always helps me keep things in perspective. We'll get there. Sooner or later, but we'll get there. :)
Thursday, September 25, 2008
Well, the nurses were telling me Saturday, but the doctor said Sunday will be when we get to go home. That makes it "official." We still have to be spell free until then, though. Samuel passed his car seat test this morning. He had to sit in his car seat for as long as it takes to get home or a minimum of 30 minutes with the monitors on him to make sure he wouldn't have a spell. They actually left him in the car seat for over three hours. Now I know that he can make it all the way to Grandma and Grandpa Law's house! :) I don't know that we'll be allowed to travel anytime soon, but at least we know he could make it.
Samuel will be going home on oxygen and a monitor, so tomorrow we get to learn how to use all the equipment. Should be interesting. I've talked to a couple moms whose babies have gone home on oxygen, and they said it's not so bad. You get used to the "leash," and you can still carry baby around the house with you.
My little boy is still eating like a champ. They had me start weighing him again. I think the nurses just get nervous when they don't have numbers to write down. He took a whole three ounces nursing this morning, which is more that he ever took at one time even from a bottle! That should show 'em! ;)
Samuel will be going home on oxygen and a monitor, so tomorrow we get to learn how to use all the equipment. Should be interesting. I've talked to a couple moms whose babies have gone home on oxygen, and they said it's not so bad. You get used to the "leash," and you can still carry baby around the house with you.
My little boy is still eating like a champ. They had me start weighing him again. I think the nurses just get nervous when they don't have numbers to write down. He took a whole three ounces nursing this morning, which is more that he ever took at one time even from a bottle! That should show 'em! ;)
Tuesday, September 23, 2008
Spell Count
The count is on. Samuel has to go five days without having an apnea spell (stops breathing, oxygen levels and heartrate drop) before he can go home. He's supposed to be growing out them anytime now. His last one was on Monday the 22nd (his two month bday!!), so that means as of now we'll be coming home on Saturday! It doesn't sound like they're considering trying to get him off of oxygen before we come home (we can still pray for one more miracle, though!), so we'll probably get to bring a little extra equipment with us. They did turn his flow back down to 1/4L, and I've heard he shouldn't need the O2 for more than a month or two.
On Sunday, he passed his hearing screen. Tuesday he was circumcised. He continues to do excellent with eating. I don't have to weigh him before and after nursing anymore because he's established the fact that he can take as make as he needs. :) It's so much nicer - he doesn't usually wake back up when I try to put him in his bed now. He's gaining about an ounce a day - currently at 5lb 4oz. I'm hoping to spend the next few nights here and feed him around the clock. I want to take him home exclusively breastfeeding, which I'm told almost never happens. That just motivates me more as my MAP would tell you. :)
We're looking forward to being home!
On Sunday, he passed his hearing screen. Tuesday he was circumcised. He continues to do excellent with eating. I don't have to weigh him before and after nursing anymore because he's established the fact that he can take as make as he needs. :) It's so much nicer - he doesn't usually wake back up when I try to put him in his bed now. He's gaining about an ounce a day - currently at 5lb 4oz. I'm hoping to spend the next few nights here and feed him around the clock. I want to take him home exclusively breastfeeding, which I'm told almost never happens. That just motivates me more as my MAP would tell you. :)
We're looking forward to being home!
Saturday, September 20, 2008
Coming Home Soon?!
Samuel loves to eat! He really took off on breastfeeding this week. He has consistently taken at least half of the amount that he needed at each feeding. Then he'd get the rest through his tube. However, he was waking up over an hour before it was time for his feedings, so yesterday (Friday) I asked the nurse what it would take to get him on an "ad lib" schedule where he could he when and how much he wants to. The requirement is that he has to be taking all of his food by mouth, so last night after I fed him, instead of putting the rest in his tube, I gave the rest to him in a bottle (it's a lot less work for him) and he took it all. The nurse gave him a bottle at 2am, and he took it all again. She then convinced that doctor to put him on an ad lib schedule, and at 5am, he took one and 1/2 times (60ml instead of 40ml) as much milk as he'd been getting each feeding! The nurses thought he wouldn't be hungry again until 9am since he took so much, but he was ready to eat again shortly after 8am. He took 60ml again! The rest of the day, I got to nurse him whenever he wanted to eat. I weigh him before and after feeding to see how much he ate, and he met his requirement for the day. :)
Since he's eating so well, the nurses started saying we could be going home in a few days! Yikes! I've been asking everybody this week how long it would be so I could try to have some idea, and everyone was saying 2-3 weeks. Now it sounds like it will be less than a week! The doctor will make an official plan on Monday.
On Tuesday, Samuel was 8 weeks old, and exactly double his birth weight at 4lb 14oz. He hit 5lbs on Friday, and is now 5lb 1oz.
Thursday he had another eye exam; his ROP is better, but not gone yet. He gets another exam in 2 weeks.
Yesterday he had a head ultrasound again. It came back negative, which means everything is normal. :) They also did an official room air test. He didn't quite pass it, but he didn't blatantly flunk it either. They may try again after a few days, but he may end up going home on oxygen.
Today Samuel got his first round of immunization shots. He is also getting eye drops because he has an infection in his right eye. Samuel is anemic (low on red blood cells) right now, which could play into why he failed the room air challenge yesterday. They're holding off on giving him another blood transfusion, though, because his body is working very well at making new red blood cells. If they give him a transfusion, the body could decide it doesn't have to keep working on making red blood cells, so it's better to wait and see if he'll catch up on his own.
Since he's eating so well, the nurses started saying we could be going home in a few days! Yikes! I've been asking everybody this week how long it would be so I could try to have some idea, and everyone was saying 2-3 weeks. Now it sounds like it will be less than a week! The doctor will make an official plan on Monday.
On Tuesday, Samuel was 8 weeks old, and exactly double his birth weight at 4lb 14oz. He hit 5lbs on Friday, and is now 5lb 1oz.
Thursday he had another eye exam; his ROP is better, but not gone yet. He gets another exam in 2 weeks.
Yesterday he had a head ultrasound again. It came back negative, which means everything is normal. :) They also did an official room air test. He didn't quite pass it, but he didn't blatantly flunk it either. They may try again after a few days, but he may end up going home on oxygen.
Today Samuel got his first round of immunization shots. He is also getting eye drops because he has an infection in his right eye. Samuel is anemic (low on red blood cells) right now, which could play into why he failed the room air challenge yesterday. They're holding off on giving him another blood transfusion, though, because his body is working very well at making new red blood cells. If they give him a transfusion, the body could decide it doesn't have to keep working on making red blood cells, so it's better to wait and see if he'll catch up on his own.
Monday, September 15, 2008
September 14
This morning they tried Samuel on room air (i.e. no breathing support at all) a couple times. He did well for 5-10 minutes. That's a start. They won't try again for several days. He just needs more time to build up lung capacity.
This evening we gave him his first tub bath! We wrapped him in warm blankets and put him in the tub wrapped up. Then we just unwrapped the parts we were washing. This way he stays warmer. He absolutely loved it! Since he was so calm and content, it was much easier to bathe him as well. :) He sure squealed when we took him out, though!
Samuel likes to play a pooping game. He'll have a dirty diaper, so I'll change it. As soon as I get him wiped off, he'll go again. Even if I wait a bit, he seems to like to save it for a new diaper. Generally he'll repeat this pattern 3 or 4 times! Fortunately, this happens only every few days, not several times a day, so I still think it's hilarious! :)
September 13
This morning they turned his air flow down to 1/4L. Also, since he's gaining weight so well, they decreased the amount of high calorie formula he's been getting mixed in with his breastmilk. Today's weight - 4lb 110z. He should be double his birth weight within a few days! :)
September 12
Today they increased Samuel's feedings again. He's also been working on learning to nurse. We're told it can be a slow process with a preemie. He seems to be doing pretty well, but he's not getting enough to measure yet. Samuel weighs 4lb 10oz today.
September 11
Samuel decided to freak Mommy out tonight. Around 8pm, his breathing was sounding rattly, so the nurse suctioned out his nose a little bit. I guess since he's not on the heated Vapotherm anymore, the airflow can dry him out. Then we started Kangarooing, but he still sounded really rattly to me. He also seemed like he was working really hard to breathe. Usually when we Kangaroo, he settles in and sleeps like a rock. This time after an hour, he was still awake and restless. I put him in his bed and went to find a nurse. Of course it was a really busy night, so it was another 15 minutes before anyone came in. By then, I was miserable, just holding him and crying and praying. After listening to his lungs, our nurse went and got the charge nurse. She said before they got the doctor they should suction him out again. Good call - they got a couple huge buggers out! He immediately started breathing better. :) If only I had known that's all it was!
He also had another eye exam today. They found the mildest possible signs of Retinopathy of Prematurity (ROP), which is when the blood vessels in the eye grown abnormally. They will check again in a week to see how things are progressing. It will probably go away on its own, but unless it gets a lot worse, the only effect would be needing glasses at a young age.
This morning they tried Samuel on room air (i.e. no breathing support at all) a couple times. He did well for 5-10 minutes. That's a start. They won't try again for several days. He just needs more time to build up lung capacity.
This evening we gave him his first tub bath! We wrapped him in warm blankets and put him in the tub wrapped up. Then we just unwrapped the parts we were washing. This way he stays warmer. He absolutely loved it! Since he was so calm and content, it was much easier to bathe him as well. :) He sure squealed when we took him out, though!
Samuel likes to play a pooping game. He'll have a dirty diaper, so I'll change it. As soon as I get him wiped off, he'll go again. Even if I wait a bit, he seems to like to save it for a new diaper. Generally he'll repeat this pattern 3 or 4 times! Fortunately, this happens only every few days, not several times a day, so I still think it's hilarious! :)
September 13
This morning they turned his air flow down to 1/4L. Also, since he's gaining weight so well, they decreased the amount of high calorie formula he's been getting mixed in with his breastmilk. Today's weight - 4lb 110z. He should be double his birth weight within a few days! :)
September 12
Today they increased Samuel's feedings again. He's also been working on learning to nurse. We're told it can be a slow process with a preemie. He seems to be doing pretty well, but he's not getting enough to measure yet. Samuel weighs 4lb 10oz today.
September 11
Samuel decided to freak Mommy out tonight. Around 8pm, his breathing was sounding rattly, so the nurse suctioned out his nose a little bit. I guess since he's not on the heated Vapotherm anymore, the airflow can dry him out. Then we started Kangarooing, but he still sounded really rattly to me. He also seemed like he was working really hard to breathe. Usually when we Kangaroo, he settles in and sleeps like a rock. This time after an hour, he was still awake and restless. I put him in his bed and went to find a nurse. Of course it was a really busy night, so it was another 15 minutes before anyone came in. By then, I was miserable, just holding him and crying and praying. After listening to his lungs, our nurse went and got the charge nurse. She said before they got the doctor they should suction him out again. Good call - they got a couple huge buggers out! He immediately started breathing better. :) If only I had known that's all it was!
He also had another eye exam today. They found the mildest possible signs of Retinopathy of Prematurity (ROP), which is when the blood vessels in the eye grown abnormally. They will check again in a week to see how things are progressing. It will probably go away on its own, but unless it gets a lot worse, the only effect would be needing glasses at a young age.
Friday, September 12, 2008
The Second Month (so far)
The first few weeks of Samuel's second month of life were characterized by steadily gaining about an ounce a day, increasing his feedings every few days, and working on weaning him from the Vapotherm. Weaning followed a pattern of turning him down, turning him back up after two days or so, then turning him back down - repeat cycle with the next level. We continued to do Kangaroo care once or twice a day depending on how he was doing. He had an eye exam which showed that his eyes, though still premature, were developing well.
August 30
For Darren's birthday, the nurses helped Samuel make an adorable little card with his actual footprints on it! Samuel also got to meet his great-grandma (Carol's mom) that day.
September 3
Samuel graduated to an open crib. Since he was able to maintain his own body temperature, he no longer needed to be in the heated isolette. He also weighed in at exactly 4lbs that night! :)
September 4
The nurse told us that we could pick Samuel up and hold him when ever we wanted! Being able to that helped this feel much more "normal," but that in turn made it even harder to leave at night.
September 6
Oma and Grandpa got to hold Samuel for the first time!
September 7
After a week, they finally turned the Vapotherm back down to 2L. Samuel is now 17 inches long - almost 2 inches longer than when he was born! He weighs 4lb 4oz. Aunt Susan got to hold him today.
September 8
Today they stopped giving him caffine. He was getting it daily to help with breathing. Since he's 34 weeks along now he shouldn't need it anymore. We also started putting a couple drops of milk in Samuel's pacifier while he was being fed. The idea is that it helps him associate the taste of milk with sucking and getting his stomach full.
September 9
They turned the Vapotherm down to 1L already!
September 10
Everything's moving so fast all of sudden! Samuel is off the Vapotherm and on 1/2 liter of Nasal Cannula! He's starting at about 50% oxygen, which seems high since he has been under 30% on the Vapotherm for quite some time. The best part is we finally get to try to breastfeed!
August 30
For Darren's birthday, the nurses helped Samuel make an adorable little card with his actual footprints on it! Samuel also got to meet his great-grandma (Carol's mom) that day.
September 3
Samuel graduated to an open crib. Since he was able to maintain his own body temperature, he no longer needed to be in the heated isolette. He also weighed in at exactly 4lbs that night! :)
September 4
The nurse told us that we could pick Samuel up and hold him when ever we wanted! Being able to that helped this feel much more "normal," but that in turn made it even harder to leave at night.
September 6
Oma and Grandpa got to hold Samuel for the first time!
September 7
After a week, they finally turned the Vapotherm back down to 2L. Samuel is now 17 inches long - almost 2 inches longer than when he was born! He weighs 4lb 4oz. Aunt Susan got to hold him today.
September 8
Today they stopped giving him caffine. He was getting it daily to help with breathing. Since he's 34 weeks along now he shouldn't need it anymore. We also started putting a couple drops of milk in Samuel's pacifier while he was being fed. The idea is that it helps him associate the taste of milk with sucking and getting his stomach full.
September 9
They turned the Vapotherm down to 1L already!
September 10
Everything's moving so fast all of sudden! Samuel is off the Vapotherm and on 1/2 liter of Nasal Cannula! He's starting at about 50% oxygen, which seems high since he has been under 30% on the Vapotherm for quite some time. The best part is we finally get to try to breastfeed!
Saturday, September 6, 2008
Friday, September 5, 2008
Sunday, August 24, 2008
Samuel's First Month
Samuel's first month of life was forever and yet only an instant. Now he's stable and we're just biding time while he grows and develops. In order to have the full story here, I've filled in his day by day progress for his first month.
July 22, 2008
Samuel Walter Johnson was born at 3:05pm. He weighs 2 lb. 7 oz. and is 15 1/4 in. long. He has lots of dark hair! He was taken up to the NICU and put on the ventilator. A few hours later they took him off the ventilator and just had him on Vapotherm, which is kind of like CPAP, for breathing support. Darren went up to see him shortly after he was born, and Sarah went up as soon as the nurses would let her leave!
July 23
Right away yesterday, we learned how to take Samuel's temperature and change his diaper! He's so little, I almost feel like I'm going to break him when I touch him. We are able to reach into his bed and touch him whenever we want. However, because he was born so early, he is at high risk for bleeding on his brain. Therefore, he has to be kept as still as possible and flat on his back for his first three days of life. Unfortunately we have to wait a whole week before they can do the head ultrasound to determine if he does have any bleeding.
Samuel has a little mask on because he's under phototherapy lights to help bring down his high biliruben counts (i.e. prevent jaundice). He also has so many wires on him - patches to monitor his heart and breathing, a little blood pressure cuff, a pulse oximeter on his foot to monitor blood oxygen level (like the thing with the little red light that you would get on your finger), and an IV in his belly button. Right now he's getting all his nutrition throught that IV, but already yesterday, they started giving him 2ml of breastmilk every six hours. This is just enough to coat his stomach and get the digestive enzymes started. He gets his milk through a little tube down his nose that goes all the way into his stomach.
July 24
Samuel was put back on the ventilator this morning. It was rather emotionally shocking and discouraging. I guess they had told us that this usually happens, but with all the barage of information we've gotten, that tidbit hadn't sunk in. Apparently, they don't want to leave babies on the ventilator too long or they become dependent on it, but often they get too tired out being off and need to go back on for awhile to get rested up. They also put in a PICC line (kind of like a long term IV) today. He'll get his nutrients through this now. Today's weight: 2lb. 4oz.
Sarah was discharged for the hospital today. Tonight will be our first night at the Ronald McDonald House.
July 25
Today it's back off the ventilator for little Samuel! They put him on his stomach to give him more support for breathing. Today he's back up to 2lb. 5oz!
July 26
I get to hold my baby! They call it Kangaroo Care - he's laid on my chest, skin to skin, and wrapped up in my gown and covered with warm blankets. Lisa, our nurse, made him a cute little hat to wear! Holding him like this is supposed to help him have more stable blood oxygen levels and body temperatures. It also helps him sleep deeper so he can use his energy to grow. It's good for mommy, too. :) What an indescribable feeling to get to finally hold my little baby!
July 27
Darren held Samuel today - Daddy Kangaroo. :)
Samuel has these spells where he stops breathing, then his heart rate drops, and all the monitors start dinging. Appearantly this, too, is "normal." It's called apnea of prematurity, and he will grow out of it before he goes home. A nurse comes and stimulates him so he starts breathing again, and then all is fine. They tell us that if he gets too comfortable, he just forgets to breathe. Yikes!
July 28
Samuel had a blood transfusion today. They have had to draw blood several times a day to check the amounts of oxygen and CO2 in his blood. This helps them to know if he's getting the correct breathing support. They don't take much blood, but he needs more than he's been able to make. Samuel has the same blood type as I do, but they say it's not worth trying to give him my blood because the screening process is so extensive. :( It was a little unnerving signing off on the transfusion, but once again, this is "normal."
Mommy Kangaroo today. :)
July 29
One week old! His head ultrasound was negative - i.e. everthing looks good! Praise God! Still weighs 2 lb. 4 oz. Daddy Kangaroo today.
July 30
Today they increased the frequency of his feedings so he's getting 2ml every 4 hours. He's gaining weight now - back up to 2lb 5oz.
Samuel had 3 apnea spells this afternoon while I was holding him, and we had to put him back in his isolette after half an hour. I know I shouldn't take it personally, but I feel rejected. :(
Darren started work at Cold Stone Creamery today.
July 31
This morning they put Samuel back on the ventilator. I've been reassured that it's very normal to go on and off the ventilator, but it's still hard to take. He has been working really hard to breathe - we could see his little chest cave in and out, so it makes sense that he needs the rest that being on the vent will provide, but it still seems like a step backward. Last night one of the nurses dressed up the teddy bear cousin Isaac gave Samuel. The bear now has a bili mask, feeding tube, and all the monitor wires that Samuel has. Seeing it made me laugh through my tears. :)
To add to the stress, this morning I noticed a rash on the backs of my hands. The nurses think it's probably a reaction to the harsh soap here at the hospital. We noticed it on my collarbone, too. Maybe I touched my neck with soapy hands?? So not really knowing what it is, I'm spending the day at the Ronald McDonald house hoping it will clear up. At least Susan is here to keep me company. :)
August 1
I woke up in the middle of the night, feeling miserable and itchy. The rash was all over my body! After I called First Nurse, Darren went to buy me some benadryll. A trip to my doctor in Ames and then to the dermatologist yeilded the diagnosis of a delayed allergic reaction to the amphicilin I had while in the hospital. I felt a million times better knowing I wasn't contagious!
Because Samuel wasn't blowing off enough CO2, they turned his ventilator setting up to a higher level. By evening, his CO2 levels were better. He's up to 2lb 6oz today.
August 2
This morning they put the ventilator back down to the lower setting. They also increased his feedings to 5ml every 4hrs. This evening I got to shampoo his hair! We used a little syringe to get his head wet. I can't say he liked it, but he didn't hate it too badly! :)
August 3
The day started on a stressful note. They're running a bunch of tests to check for infection because his temps have been all over the place the last few days. At least the nurse told me yesterday that it's pretty much expected that a baby will get at least one infection while in the NICU. But one of the tests involves doing a spinal tap! They started him on antibiotics (not penicilin related!) just in case. And they say he needs another blood transfusion. This time they have to start an IV since he no longer has the line in his belly button, and they can't put blood in through the PICC line. After all the trouble the nurses had starting an IV in my arm, I'm in awe that that they can start one in Samuel's teeny tiny veins!
This afternoon, I finally got to hold Samuel again. With the drama of my rash from the amphicilin and Samuel going back on the ventilator, it's been 4 days since I held him! What a special blessing to feel his little body next to mine again! He seemed to love it, too. :) He weighs 2lb 8oz tonight!
August 4
This morning they took him off phototherapy - no more lights, so his little mask gets to come off! :) He also had an echocardiogram, because often preemies have a duct in their heart that doesn't close at birth like it would in a baby that's born at term. Everything looks good though, so he won't be needing heart surgery! Praise God. :) This afternoon, we got to kangaroo for 2 hours! :)
August 5
Two weeks old! Today, they turned the ventilator down a bit more. One of the tests they did to check for infection showed some bacteria growing. It could be pneumonia. They'll keep giving him antibiotics for 7-10 days. It's so scary to have such a little guy be sick! He doesn't have much to fight it with.
August 6
The ventilator was turned down a bit more. According to the Samuel's blood tests, the infection is getting better. :) However, he had to have another blood transfusion, which meant starting another IV. It took them a couple tries this time. :( Samuel's a good eater! He hasn't had any trouble tolerating his feedings, and today he goes up to 10ml every 3hrs. :) He weighs 2lb 11oz!
August 7
This morning they turned the ventilator down again, and at noon they took him off of it! :) He's back on the Vapotherm at 3L of pressure. Again, labs showed his infection getting better. Thankfully, he really never acted too sick! God has been very gracious to us - so many potential bumps in the road that he has spared us! :)
August 8
Today was a big day. He now gets 13ml of milk every 3hrs, which is as much as he needs for nutrition at his weight so they're stopping the nutrients he was getting through IV! We also gave him a "bath" in his bed and put clothes on him! He's up to 2lb 12oz.
August 9
Today they started fortifying his milk with high calorie formula to help him gain weight faster. I guess it's something they always do, but I'm kinda bummed because I was really excited that he was getting all his nutrition from my milk. His blood CO2 levels are still high, so they turned the Vapotherm up to 5L. Also, his lungs have been sounding/looking (in x-rays) like there's some fluid on them, so they gave him something to help him excrete that. Now he's back down to 2lb 10oz.
August 10
Today he's done with his antibiotics, so they took out his PICC line! It had been mainly used to give him his nutrients, but he hasn't needed those for a couple days. :) Today he wore his own clothes for the first time (instead of NICU clothes). Thanks Kemps and Bergs - they're the perfect size!
August 11
Samuel doesn't like his diapers changed, and he lets us know it with a cute little squeaky cry. While it's so sad to see him upset, it's nice to hear his cry. When he was on the ventilator, you could see that he was "crying," but he couldn't make a sound. That was heartwrenching.
August 12
Three weeks old today! :) He's up to "eating" 20ml every 3 hours, and his weight is back up to 2lb 11oz. :)
August 13
Vapotherm was turned back down to 4L - making progress. :) I tried to hold Samuel cradled in my arms this afternoon. It was fun to be able to see his face while I held him. Unfortunately, he didn't tolerate it very well. He kept dropping his oxygen levels. We switched to having him laying on my chest like when we kangaroo, and he was much happier. Today's weight - 2lb 12oz.
August 14
Today we kangarooed for 3 hours! Straight from one feeding until time for the next one. :) On the down side, he's had quite a few spells today. Some he pulled out of on his own without having to be stimulated to breathe. That's a good sign, but having lots of spells is not. :(
August 15
Because of all his spells yesterday, the Vapotherm is back up to 5L today. Seems like a step backward, but the nurses tell me it's just part of the "game." Try the next level to see if he's ready, if not - go back up.
August 16
Samuel got to see all his grandparents today. :) He's up to 2lb 14oz. Three pounds here we come!
August 17
It's amazing to see how much Samuel has grown and changed. Seeing him everyday, I didn't fully realize the difference until last night when we were looking through all of the pictures we'd taken of him. The change is incredible! At first his skin was so dark and reddish and just kind of hung on his little bones. Now he's so filled out and his skin color looks normal. His face is so much more defined. He's always been the cutest baby ever (wink), but now in pictures that just show his face, you can't even tell he's so tiny. He just looks like an adorable little baby. :)
August 18
Daddy Kangaroo for 2 hours today. Samuel's already a little heater, getting Daddy all toasty. :)
August 19
At four weeks old, Samuel weighs 3 pounds - he's a big boy now! ;) Vapotherm is back down to 4L. Hopefully it will stick this time. We got to get him out to hold twice today, so Daddy and Mommy each got a turn!
August 20
A bigger boy needs more food - he's now getting 24ml at each feeding (every three hours).
August 21
Samuel did well on 4L of Vapotherm, so now he's going down to 3L. He weighs 3lb 2oz.
August 22
One month old today! It seems impossible that I have a one month old baby. Wierd. I think maybe it will feel a little more real when I can nurse him and pick him up to hold him whenever I want, rather than at one (or maybe two) scheduled times a day. He still sleeps most of the time between his feedings. He wakes a little right before, though. It's so fun to see him open his eyes and look at around! I love it when he looks at me. He does these adorable little smiles, too!
July 22, 2008
Samuel Walter Johnson was born at 3:05pm. He weighs 2 lb. 7 oz. and is 15 1/4 in. long. He has lots of dark hair! He was taken up to the NICU and put on the ventilator. A few hours later they took him off the ventilator and just had him on Vapotherm, which is kind of like CPAP, for breathing support. Darren went up to see him shortly after he was born, and Sarah went up as soon as the nurses would let her leave!
July 23
Right away yesterday, we learned how to take Samuel's temperature and change his diaper! He's so little, I almost feel like I'm going to break him when I touch him. We are able to reach into his bed and touch him whenever we want. However, because he was born so early, he is at high risk for bleeding on his brain. Therefore, he has to be kept as still as possible and flat on his back for his first three days of life. Unfortunately we have to wait a whole week before they can do the head ultrasound to determine if he does have any bleeding.
Samuel has a little mask on because he's under phototherapy lights to help bring down his high biliruben counts (i.e. prevent jaundice). He also has so many wires on him - patches to monitor his heart and breathing, a little blood pressure cuff, a pulse oximeter on his foot to monitor blood oxygen level (like the thing with the little red light that you would get on your finger), and an IV in his belly button. Right now he's getting all his nutrition throught that IV, but already yesterday, they started giving him 2ml of breastmilk every six hours. This is just enough to coat his stomach and get the digestive enzymes started. He gets his milk through a little tube down his nose that goes all the way into his stomach.
July 24
Samuel was put back on the ventilator this morning. It was rather emotionally shocking and discouraging. I guess they had told us that this usually happens, but with all the barage of information we've gotten, that tidbit hadn't sunk in. Apparently, they don't want to leave babies on the ventilator too long or they become dependent on it, but often they get too tired out being off and need to go back on for awhile to get rested up. They also put in a PICC line (kind of like a long term IV) today. He'll get his nutrients through this now. Today's weight: 2lb. 4oz.
Sarah was discharged for the hospital today. Tonight will be our first night at the Ronald McDonald House.
July 25
Today it's back off the ventilator for little Samuel! They put him on his stomach to give him more support for breathing. Today he's back up to 2lb. 5oz!
July 26
I get to hold my baby! They call it Kangaroo Care - he's laid on my chest, skin to skin, and wrapped up in my gown and covered with warm blankets. Lisa, our nurse, made him a cute little hat to wear! Holding him like this is supposed to help him have more stable blood oxygen levels and body temperatures. It also helps him sleep deeper so he can use his energy to grow. It's good for mommy, too. :) What an indescribable feeling to get to finally hold my little baby!
July 27
Darren held Samuel today - Daddy Kangaroo. :)
Samuel has these spells where he stops breathing, then his heart rate drops, and all the monitors start dinging. Appearantly this, too, is "normal." It's called apnea of prematurity, and he will grow out of it before he goes home. A nurse comes and stimulates him so he starts breathing again, and then all is fine. They tell us that if he gets too comfortable, he just forgets to breathe. Yikes!
July 28
Samuel had a blood transfusion today. They have had to draw blood several times a day to check the amounts of oxygen and CO2 in his blood. This helps them to know if he's getting the correct breathing support. They don't take much blood, but he needs more than he's been able to make. Samuel has the same blood type as I do, but they say it's not worth trying to give him my blood because the screening process is so extensive. :( It was a little unnerving signing off on the transfusion, but once again, this is "normal."
Mommy Kangaroo today. :)
July 29
One week old! His head ultrasound was negative - i.e. everthing looks good! Praise God! Still weighs 2 lb. 4 oz. Daddy Kangaroo today.
July 30
Today they increased the frequency of his feedings so he's getting 2ml every 4 hours. He's gaining weight now - back up to 2lb 5oz.
Samuel had 3 apnea spells this afternoon while I was holding him, and we had to put him back in his isolette after half an hour. I know I shouldn't take it personally, but I feel rejected. :(
Darren started work at Cold Stone Creamery today.
July 31
This morning they put Samuel back on the ventilator. I've been reassured that it's very normal to go on and off the ventilator, but it's still hard to take. He has been working really hard to breathe - we could see his little chest cave in and out, so it makes sense that he needs the rest that being on the vent will provide, but it still seems like a step backward. Last night one of the nurses dressed up the teddy bear cousin Isaac gave Samuel. The bear now has a bili mask, feeding tube, and all the monitor wires that Samuel has. Seeing it made me laugh through my tears. :)
To add to the stress, this morning I noticed a rash on the backs of my hands. The nurses think it's probably a reaction to the harsh soap here at the hospital. We noticed it on my collarbone, too. Maybe I touched my neck with soapy hands?? So not really knowing what it is, I'm spending the day at the Ronald McDonald house hoping it will clear up. At least Susan is here to keep me company. :)
August 1
I woke up in the middle of the night, feeling miserable and itchy. The rash was all over my body! After I called First Nurse, Darren went to buy me some benadryll. A trip to my doctor in Ames and then to the dermatologist yeilded the diagnosis of a delayed allergic reaction to the amphicilin I had while in the hospital. I felt a million times better knowing I wasn't contagious!
Because Samuel wasn't blowing off enough CO2, they turned his ventilator setting up to a higher level. By evening, his CO2 levels were better. He's up to 2lb 6oz today.
August 2
This morning they put the ventilator back down to the lower setting. They also increased his feedings to 5ml every 4hrs. This evening I got to shampoo his hair! We used a little syringe to get his head wet. I can't say he liked it, but he didn't hate it too badly! :)
August 3
The day started on a stressful note. They're running a bunch of tests to check for infection because his temps have been all over the place the last few days. At least the nurse told me yesterday that it's pretty much expected that a baby will get at least one infection while in the NICU. But one of the tests involves doing a spinal tap! They started him on antibiotics (not penicilin related!) just in case. And they say he needs another blood transfusion. This time they have to start an IV since he no longer has the line in his belly button, and they can't put blood in through the PICC line. After all the trouble the nurses had starting an IV in my arm, I'm in awe that that they can start one in Samuel's teeny tiny veins!
This afternoon, I finally got to hold Samuel again. With the drama of my rash from the amphicilin and Samuel going back on the ventilator, it's been 4 days since I held him! What a special blessing to feel his little body next to mine again! He seemed to love it, too. :) He weighs 2lb 8oz tonight!
August 4
This morning they took him off phototherapy - no more lights, so his little mask gets to come off! :) He also had an echocardiogram, because often preemies have a duct in their heart that doesn't close at birth like it would in a baby that's born at term. Everything looks good though, so he won't be needing heart surgery! Praise God. :) This afternoon, we got to kangaroo for 2 hours! :)
August 5
Two weeks old! Today, they turned the ventilator down a bit more. One of the tests they did to check for infection showed some bacteria growing. It could be pneumonia. They'll keep giving him antibiotics for 7-10 days. It's so scary to have such a little guy be sick! He doesn't have much to fight it with.
August 6
The ventilator was turned down a bit more. According to the Samuel's blood tests, the infection is getting better. :) However, he had to have another blood transfusion, which meant starting another IV. It took them a couple tries this time. :( Samuel's a good eater! He hasn't had any trouble tolerating his feedings, and today he goes up to 10ml every 3hrs. :) He weighs 2lb 11oz!
August 7
This morning they turned the ventilator down again, and at noon they took him off of it! :) He's back on the Vapotherm at 3L of pressure. Again, labs showed his infection getting better. Thankfully, he really never acted too sick! God has been very gracious to us - so many potential bumps in the road that he has spared us! :)
August 8
Today was a big day. He now gets 13ml of milk every 3hrs, which is as much as he needs for nutrition at his weight so they're stopping the nutrients he was getting through IV! We also gave him a "bath" in his bed and put clothes on him! He's up to 2lb 12oz.
August 9
Today they started fortifying his milk with high calorie formula to help him gain weight faster. I guess it's something they always do, but I'm kinda bummed because I was really excited that he was getting all his nutrition from my milk. His blood CO2 levels are still high, so they turned the Vapotherm up to 5L. Also, his lungs have been sounding/looking (in x-rays) like there's some fluid on them, so they gave him something to help him excrete that. Now he's back down to 2lb 10oz.
August 10
Today he's done with his antibiotics, so they took out his PICC line! It had been mainly used to give him his nutrients, but he hasn't needed those for a couple days. :) Today he wore his own clothes for the first time (instead of NICU clothes). Thanks Kemps and Bergs - they're the perfect size!
August 11
Samuel doesn't like his diapers changed, and he lets us know it with a cute little squeaky cry. While it's so sad to see him upset, it's nice to hear his cry. When he was on the ventilator, you could see that he was "crying," but he couldn't make a sound. That was heartwrenching.
August 12
Three weeks old today! :) He's up to "eating" 20ml every 3 hours, and his weight is back up to 2lb 11oz. :)
August 13
Vapotherm was turned back down to 4L - making progress. :) I tried to hold Samuel cradled in my arms this afternoon. It was fun to be able to see his face while I held him. Unfortunately, he didn't tolerate it very well. He kept dropping his oxygen levels. We switched to having him laying on my chest like when we kangaroo, and he was much happier. Today's weight - 2lb 12oz.
August 14
Today we kangarooed for 3 hours! Straight from one feeding until time for the next one. :) On the down side, he's had quite a few spells today. Some he pulled out of on his own without having to be stimulated to breathe. That's a good sign, but having lots of spells is not. :(
August 15
Because of all his spells yesterday, the Vapotherm is back up to 5L today. Seems like a step backward, but the nurses tell me it's just part of the "game." Try the next level to see if he's ready, if not - go back up.
August 16
Samuel got to see all his grandparents today. :) He's up to 2lb 14oz. Three pounds here we come!
August 17
It's amazing to see how much Samuel has grown and changed. Seeing him everyday, I didn't fully realize the difference until last night when we were looking through all of the pictures we'd taken of him. The change is incredible! At first his skin was so dark and reddish and just kind of hung on his little bones. Now he's so filled out and his skin color looks normal. His face is so much more defined. He's always been the cutest baby ever (wink), but now in pictures that just show his face, you can't even tell he's so tiny. He just looks like an adorable little baby. :)
August 18
Daddy Kangaroo for 2 hours today. Samuel's already a little heater, getting Daddy all toasty. :)
August 19
At four weeks old, Samuel weighs 3 pounds - he's a big boy now! ;) Vapotherm is back down to 4L. Hopefully it will stick this time. We got to get him out to hold twice today, so Daddy and Mommy each got a turn!
August 20
A bigger boy needs more food - he's now getting 24ml at each feeding (every three hours).
August 21
Samuel did well on 4L of Vapotherm, so now he's going down to 3L. He weighs 3lb 2oz.
August 22
One month old today! It seems impossible that I have a one month old baby. Wierd. I think maybe it will feel a little more real when I can nurse him and pick him up to hold him whenever I want, rather than at one (or maybe two) scheduled times a day. He still sleeps most of the time between his feedings. He wakes a little right before, though. It's so fun to see him open his eyes and look at around! I love it when he looks at me. He does these adorable little smiles, too!
Friday, August 22, 2008
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