June 30, 2005

Thank you everyone for your positive thoughts, prayers, and notes of encouragement. Alex's surgery went well this morning. The surgeon says his prognosis is very good. He is recovering now, and his bed is in Spencer's old spot in nursery three (good karma in that spot!).

Spencer has taken all of his feeds by bottle for over 24 hours now, and he is out of heat. He is at the moment undergoing his hearing test and car seat test. He may be coming home tomorrow! We're all shocked, including the nurses, and excited. I have so much to do!!!

Life is so good!

Alex Has ROP

I just got back from the hospital. Alex has Retinopathy of Prematurity, abnormal growth of the blood vessels that bring blood to the retina. If this abnormal growth continues the retinas could detach, which means he would go blind. Bleeds and the formation of scar tissue are also concerns. He will have laser surgery tomorrow morning to try to stop the growth. The doctors will know in a few weeks if it was successful. His eyes will be watched very closely over the years. There is always a chance of retinal detachment later in life. His vision could be affected even if the laser surgery successfully stops the growth.

Alex has been through so much, and overcome so much. I'm just trying to believe that he is going to be fine. His reinastimosis surgery is on hold at the moment. We need a lot of prayer, positive energy, and good thoughts.

Another Milestone

Today, for the first time in my life, I had spit-up in my shoes. Thank you, Spencer!

Time Together

Last Friday, June 17th, Alex was moved to the intermediate nursery where Spencer is. By Sunday they were close enough together for me to get them both in my arms at once. After over 11 weeks of being separated the boys finally got to see each other. I sobbed when the nurse placed both my babies in my embrace. What a beautiful moment it was for me. Being together is the best thing for the babies.

Spencer was his usual sleepy self, but Alex was wide awake. The next day I held them both again and it was the reverse. Spencer just stared, so wide-eyed and focused, at his brother. I love watching them together.

Yesterday Spencer became my Sack O' Sugah. Yes, that's right: he now weighs five pounds! When I look at him it's hard to believe he was ever a 1 1/2 pound baby. Alex is now 4 pounds 10 ounces. They are both taking bottles for every other feeding, so that's four times in 24 hours. Spencer is back off oxygen and Alex is on the lowest setting possible. We're really in the home stretch here. Pretty soon I'll be able to cuddle them both any time I want to.

Alex's Surgery

I just got off the phone with Alex's nurse. They're not going to be able to do his surgery until June 29th. The surgeon just doesn't have the time. I'm so disappointed. He's practically ready to come home; now we're just going to be hanging out and waiting for this. I was hoping that since it's going to be awhile they would move him down to intermediate to be with his brother. He's on oxygen on the lowest setting, is bottle feeding, and is almost out of heat; he doesn't require any special support. His nurse said that they probably won't want to move Alex and then have to move him back after his surgery. I'm in tears about all this, but there's nothing I can do, so I just have to accept it and try to let go.

Muscle Mouth

I put Alex to breast for the first time this morning and he took to it like a bee to honey. When I held him to my breast he opened his mouth and latched right on - oh yes, I felt it! I just knew he would be a natural at breast feeding. He's always opening his mouth really wide and sticking his tongue out. When I took him off and held him up to look at him a couple of times this morning he just started wailing: "Give it back!" I'm very thankful he's doing so well.

More Good News for Alex

Alex was taken off Vapo-Therm this morning. He is now on oxygen only, on the lowest setting. He also took another whole feeding by bottle this morning. This boy is flying! The only thing holding him back now is that he's waiting for his reinastomosis (the surgery to reconnect his intestines). They have been talking about scheduling it for the last two weeks. Last week it was supposed to be last week or this; this week it's supposed to be next week. I have a call in to the surgeon. Maybe a little extra prodding from me will help get a date pinned down so we can get this done and Alex can be on the road to coming home.

Alex is now on a Vapo-Therm of 3 liters and took a whole bottle for his 8:00 AM feed this morning! He weighs 4 lbs. 2.8 oz. I was talking to him this morning while I was holding him and he was smiling so big.

Spencer also took his full feed by bottle again this morning. He is up to 4 lbs. 5 oz. He's going to be home in no time! I love my chubby cherub.

The Latest News

Alexander's Vapo-Therm has been reduced to four liters. He is still on 25% oxygen and doing really well. Normally when the liters are lowered on Vapo-Therm the oxygen needs to be increased while the baby adjusts, but Alex is holding his own. Because his respiratory status is stable I am going to be able to give him his first bottle at 5:00 today. I'm so excited! Alexander's weight is now 4 lbs. 1 oz.

Spencer has being doing well with his bottle feedings. He is now up to once per shift, which is three bottle feedings each day (he started with two per day last week). His weight is now 4 lbs. 2 oz. He will be coming home as soon as he can take all of his feedings by mouth. It could be any day now!

I had my baby shower on Saturday. It was a beautiful shower...really perfect. I was impressed by the creative ideas my friends and family came up with. We had a lot of fun, the food was delicious, I was surrounded by people I love....and I got just about everything the boys and I need, plus some! Yesterday Mom and I took the Target and Babies R Us gift cards and got a few more things. We worked on getting the nursery organized and I washed all the new clothes and blankets. I feel ready for the boys to come home, so now I'm getting anxious. I can't wait to bring them home so I can shower them with love 24/7.

Spencer's Big News

Today, at 71 days of age (34 4/7 weeks gestationally), Spencer took his entire 6:00 AM feeding by bottle!!!

Alex's Respiratory Progress

When I called the hospital shortly after 4:00 this morning Alex was being switched to Vapo-Therm. I visited at 5:00 and he was on 6 liters and 25% oxygen (21% is room air), and he was satting in the 90's (the oxygen saturation level in his blood was between 90 & 100%). He was wide awake for me as I sang and talked to him. I am thrilled with the progress he's making. His nurse mentioned that if he continues to do well he can start bottle feeding. I'm hoping to do kangaroo care with him tonight, at last.

I thank God for the miracles that have been given to me.

An Early Morning

I went to bed just after 9:00 last night. I had planned on getting up at 5:00 AM so I could be at the hospital for Spencer's 6:00 feed. I woke up at 3:45 and was totally engorged. By the time I finished pumping and all it was 4:15. There was no point in going back to bed, so I got ready and went to the hospital to spend some time with Alex before Spencer's feeding. Alicia, Alex's nurse last night, was pushing for Vapo-Therm, and she said the doctors are right on the edge of switching him over. Spencer was a little more alert this morning when I put him to breast. After awhile he actually sucked and swallowed a few times. Then he pulled away, looked up at me, and gave me the biggest smile: "Ohhhhh, I see how this works now!" He didn't last much longer, but each time we do this he gets a little better at it.

Sunday, June 5th

Time is dragging on. I don't think I'm getting enough sleep. I'm usually able to keep my chin up, but boy am I feeling grouchy and sad. I didn't even get to hold Spencer today. He's having a lot of A's & B's*. The nurses think they're being caused by his reflux (they appear to be occurring during and immediately after feedings), but they want him to rest today so they can observe him and make sure. I had him out yesterday for an hour and afterward his temperature was low. It's possible that his temperature may also be playing a role in the A's & B's. Spencer's nurse was upset with me yesterday for keeping him out of his isolette for an hour. Apparently, he burns a lot more calories when he's out of his isolette; it's a lot more work for his little body. This makes sense, but why hasn't anyone told me this before? I've been holding Spencer for an hour every day for the last three weeks. If I had known it wasn't good for him I wouldn't have done it. I was in tears because of this yesterday and again today. I felt like Spencer's nurse yesterday thought I was being a bad mother, but I'm trying to keep in mind that I'm hyper-sensitive right now and probably reading more into it than there is.

On to more positive news: Alex was extubated again at 1:00 AM Friday, June 3rd. He was on a C-PAP of 8 (the highest setting) and oxygen of about 35%. He has been doing well and was lowered to 7 last night. Five minutes after I walked into Alex's nursery yesterday his weekend nurse, Debbie (who I adore, by the way) asked me if I wanted to hold him. He did GREAT and I got to hold him again today. I am so incredibly thankful that he is tolerating my holding him again. He makes me so proud and happy. Alex dipped back below the 4 pound mark, but this is because he was retaining a lot of fluids while he was sick. He is no longer puffy looking and is doing great with his feeds of 38 ml (about 1.3 oz.) every three hours. He should be having the surgery to reconnect his intestines this week. He will need to be reintubated for that, but after he recovers he'll be taken off the ventilator again. I just know my blondie bear is going to fly once he's past this surgery.

Spencer was taken off of Vapo-Therm on Thursday, June 2nd. He is now on room air, and not receiving any respiratory support. Aside from his episodes of A's & B's* he is doing really well. He now weighs about 3 lbs. 7.5 oz. He was given his two month immunizations on May 31st. Thankfully I was able to be there to comfort him. He has been exploring my breasts (something we're putting on hold awhile until he gets a little bigger) and he actually latched on and fed a little on Thursday. I cried. My mom was there with me. It was a beautiful moment. I think breastfeeding is the most maternal thing I can possibly do, aside from actually carrying the babies in my womb.

*A's & B's - apneas: cessation of breathing; and bradycardias: abnormally slow heartbeat

Lots of News

So many things have happened since my last update. I'm not even sure where to begin. Spencer finally hit the three pound mark on Friday and, as of this morning, is 1400 grams (3 lbs. 1.2 oz.). Aunt Gali held him for the first time this week. It's very meaningful that my sister is so involved in my babies' lives; I have always admired her as a mother. But my brother-in-law was the one to coax smiles out of Spencer; I just know my boys are going to adore their Uncle Steve, the "gentle giant."

Alex finally got a "house" (that's what I like to call their isolettes) this week. I've been pushing for this for awhile, because he's so sensitive to light and sound. The isolette really helps. His primary nurse, Ruby, is back after a long vacation. We really missed her. She surprised me tonight by putting clothes on him for the very first time. Alex looked so cute and the outfit fit him just right. He's my chunky monkey now.

The surgeon is going to look at Alex on Tuesday to evaluate him for the surgery to remove his ostomy and reconnect his bowels. Unfortunately, Alex has developed an infection in his lungs, and they won't do surgery while he is sick. He is being given antibiotics and seems to be feeling a little better today than he was yesterday. He is on full feeds and off IV support, finally, but they will wait to remove his IV until after the surgery. He will also stay on the ventilator until after his surgery. Hopefully I'll know more this week about when that will be. I know he's going to get better quickly; because he's a little fighter who consistently surprises everyone with his speedy progress.

Spencer will be 33 weeks tomorrow. Tonight the nurse allowed me to let him explore my breast. I expressed a few drops of milk for him. He licked and sucked a little, not enough to actually nurse, of course, but it was a good "introduction" to the breast. And it was so exciting for me!

Tuesday, May 24th

This past week was a little rough with Alex. Over the weekend he went from being on C-PAP to being reintubated and back on the conventional ventilator, and then took a further step backward to the jet ventilator. What a roller coaster ride we've been on in the last week and a half. He's now back on the conventional ventilator and is doing just fine. I tried to hold him on twice last week but he just wouldn't tolerate it. He is so sensitive and doesn't like to be moved around or touched a lot. He doesn't seem to enjoy my singing much, either, but he does love to be talked and read to. I was pretty disappointed that I couldn't hold him, and was very upset that, when he was still on C-PAP and crying, I couldn't pick him up and comfort him. It's hard for me to give Alex what he really seems to need right now, which is a little space. Last night I didn't go to visit him; I went to bed and got a good night's rest. I felt guilty, but I think I needed to remove myself from the situation a little. I keep trying to remind myself that the fact that Alex still needs the ventilator to breath is not a bad thing. He is doing exactly what he would be doing if he were still in the womb where he belongs. He is focusing his energy on growing, not breathing. Alex has already gained 2 pounds over his birth weight; he is a chubby 3 lbs. 7 oz.!

Spencer was moved to the intermediate nursery on Saturday. This is the step between ICU and coming home. Intermediate nursery babies require less care; the nursery is calmer and quieter, without as many beeping monitors and staff rushing around. We have been enjoying kangaroo care together every day; last night I fell asleep with him on my chest. I'm looking forward with great anticipation to doing that with both boys at home. Spencer is now 2 lbs. 14.5 oz., and is gaining steadily, so I'm sure it's only a matter of days until he too is over 3 pounds.

Big News for Alex

Alex was extubated and switched to C-PAP. He had to be extubated because he had outgrown his tube and they needed to put a bigger one in, so they figured they'd give him a try on C-PAP. His nurse was told "We don't expect him to stay extubated," but here we are over 24 hours later and Alex is once again amazing the NICU staff. He is still on C-PAP, at 35% oxygen, and he's doing great! He's laying on his tummy because it's easier for him to breath that way. I was also told that his feeds are now being increased by 1 ml every feed, which means he'll get to full feeds much more quickly (as long as he continues to tolerate them). Getting to full feeds means getting off IV support and finally getting that central line taken out of his chest!

I had a mommy meltdown moment this morning before work. I woke up after having a dream that Alex was sick and back in the hospital after being released. Of course I knew that he was okay, but I had to call his nursery to check on him. When I told the nurse that I was back to work and it was hard not being there with the boys all day I started crying. It's so hard to leave them in someone else's care for most of the hours of the day and night, especially now that they can be held, and will start to be able to breast feed before long. I broke down crying and considered not going into the office today. After my sister let me cry on her shoulder this morning I felt a little better, and she helped me come up with some ideas on how to stay more connected while I'm away. I am now calling the NICU every time I pump while I'm at work, and trying to contribute my suggestions on their care to their day nurses, not just the nurses I see in the evenings. Thank God for my sister's listening ear and strong shoulders.

I feel it's important to record and share these feelings. I've been reading the blog of a mom whose twin boys were born at 25.5 weeks and are now thriving toddlers. It's reassuring to learn "Oh, she felt the way I feel," and "Oh, they went through that, too." I also want my boys to know someday what incredible miracles they are and that no matter how hard this might be at times, I feel infinitely blessed for everything that I'm experiencing with them, and wouldn't trade any of it.

Tuesday, May 17th

I am utterly exhausted. I got into my car in the hospital parking garage at 10:35 tonight, put my head down on the steering wheel, and just cried. I don't know how I'm going to keep this up - working all day and spending the evening at the hospital with the boys. But I don't have a choice. I have to work to pay the bills, and I need to be my babies' mother. I guess that's what happens when you become a parent - no matter how hard it is, no matter how tired you are, you just have to do it. You have to push through - for your children.

I finally got to hold Alex again tonight. He is off the jet ventilator and back on the conventional vent. He's grown so much since the last time I held him. Since Alex can't wear clothes yet like Spencer, I dressed him in a hat and socks after I changed his diaper. He looked adorable, my dapper little guy.

Spencer had a wonderful nurse today, Anne, who sat him up and burped him when she noticed him desatting during his feeding. While I did kangaroo care during his 6:00 feeding I learned to tell when he was having reflux (he turns red like he's working really hard to push a burp out). I rubbed his back during those times and it really seemed to help. I appreciate those nurses who take initiative in caring for my babies and in teaching me how to care for them.

My Heart Overfloweth

Alex was Mr. Smiley tonight. The bone that holds his breathing tube was taped far enough away from his mouth that I could observe his full facial responses to my talking and singing. Several times his face lit up with a big baby smile. How my heart overflows with joy when my babies smile at me!

Spencer stayed on the straight oxygen for about twelve hours, but then seemed to get a little tired. He was switched back to Vapo-Therm in the early afternoon. His first try was a good one; I'm sure he'll make a permanent switch before too long.

Being back at work today felt strangely foreign and familiar at once. It's good to be with my friends and to be doing something "normal," but it was strange not seeing my boys all day long. I couldn't wait to get to the hospital to kiss their little heads tonight.

Monday, May 16th

I called the hospital a little while ago. Spencer is on oxygen only now, and Alex is 3 pounds 1 ounce. He has more than doubled his birth weight!

Mischief and Milestones

Alex is a mischievous little guy! When I called his nurse this morning to see how he was doing she said he would NOT calm down for her. He was wide awake and moving all over the place. Then, while I was talking to her, she turned around and he was asleep! "Step away from the baby," she said. Ha! Tonight Alex was desatting (the percentage of oxygen in his blood was dropping below 85%) and his nurse decided to suction out his breathing tube to see if that would help. As soon as she turned off the ventilator his sats jumped to 94%, and when she started suctioning him they jumped to 100%. We had fun laughing at his little "game."

The doctors continue to wean Alex's ventilator settings, which means his lungs are working better and he's getting closer to getting off the "breathing machine." They haven't weighed him since last Monday, when his weight was 1250, which was probably a bit high because of fluid retention, but he is definitely bigger than Spencer. Even Spencer's primary nurse, Glenda, says so. His legs are chubby and cute.

More milestones for my froggy bottom boy, Spencer. Yesterday I arrived in his nursery to find him wearing clothes! What a surprise for Mommy! They had taken him off the heat sensor (one less wire attached to his body - yeah!) and put clothes on him to help him maintain his body temperature. He was wearing one of the hospital's outfits, so of course I got to work dressing him up in some of the clothes that were given to us by friends. I even put his "I Love You" socks on...and they fit! He was swimming in everything else, but he still looked adorable. Of course, within a couple hours Spencer had spit up on his shirt, so we had to change it. As of this evening he's gone through about four outfits. He's introducing me to the joy of baby laundry.

Today's big news for Spencer? He's officially gained a pound from his birth weight! 1 pound and 1/2 ounce, to be exact. As of this evening he is at 1145 grams, which is 2 lbs 8.5 oz.