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!
Sunday, August 24, 2008
Friday, August 22, 2008
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