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.

Kangaroo Care and More

Spencer and I got to practice kangaroo care for the first time today. Spencer, wearing nothing but his diaper, was placed on my chest inside my blouse. This skin-to-skin "therapy" for premature babies was accidentally discovered by doctors in South America whose hospitals did not have money to buy enough incubators for premies. K-care babies grow faster, breathe better, and are calmer than non k-care babies. And of course we moms get the benefits of feeling more involved in our babies' care and bonding more closely with our babies. It was such an incredible experience. I held Spencer on my chest for about 40 minutes. He rested so peacefully, occasionally opening his eyes to gaze up at me. I even had the monumental milestone of my first baby spit-up on my blouse!

Alex continues to recover from his lung problems. His ventilator settings went down further today (indicating that he needs less support). He was his lively self when I was with him today. Unfortunately I didn't get to spend enough time with him today. I barely got to sing and read to him. It really broke my heart when I had to leave his bedside. I'm returning to work full time next week and I'm realizing that I really can't commit to anything beyond working and being with my babies at the hospital. They are going to need me more and more in the coming weeks, as they are able to be held more, begin to bottle and breast feed, and make other steps toward coming home. Sleep may just have to take a back burner to them...it will when they come home, so I might as well start now.

Spencer is doing very well on Vapo-Therm. They now weigh him every day. He's at 2 lbs 6.5 oz. I discovered that the conversion of the boys' birth weights that I was given was wrong. Spencer was actually 1 lb 8 oz and Alex was 1 lb 7.5 oz. I'm going to go back to my previous blog entry and fix those numbers. There is a new 24 week preemie in Spencer's nursery who weighs more than Spence did when he was born. I look at that baby and I can't remember Spencer being that small. It really puts into perspective how much the boys have grown.

Tuesday, May 10th

Alex is doing so much better today. When I arrived at his bedside this afternoon he immediately started moving and soon opened his eyes. His urine output is up and his blood pressure is better. They resumed his feedings this afternoon. Tonight, after changing his diaper, taking his temperature, etc. (the usual steps before a feeding) I read a book and sang some songs to him. He opened his eyes so wide and kept stretching his mouth open as if he wanted to talk to me. Eventually he started falling asleep, but he was fighting it, trying to keep his eyes open. I finally covered him up and said goodnight, because he never would have calmed down with me there. I'm so relieved that he's doing better and my heart is so full of love and awe.

While I was visiting Alex the doctors were doing their rounds. They reviewed Alex's chest x-rays and when I heard them say "He's doing much better," I piped up and said "Yes, he is!". The attending showed me Alex's x-ray from two days ago and today's x-ray. The difference is incredible. Much of the free air that was in the tissue supporting his lungs has disappeared. Thank God for the staff at AMC who know so well how to take care of my boys, and thank God for the strength and healing power he has given little Alex. I continue to be amazed by how quickly my blondie bear bounces back.

Spencer's nurse announced to me this evening that they are going to be switching him to Vapo-Therm sometime tonight. I was so taken aback, I thought "Is she talking about my son?". Vapo-Therm is the next step on the road to breathing on his own. It is moisturized oxygen blown into the nose under some pressure, but not as much pressure as CPAP. It means no more hat and very little in front of his face, and it means being able to get him out of his isolette more easily. It also means I can start kangaroo care! There's always the chance, of course, that he won't be ready and they'll have to switch him back to CPAP for awhile, but that's okay. We'll take each day as it comes and rejoice in the triumphs we have.

My sister said that her 4 1/2 year old twins came upon a fountain at a store and wanted to throw money into it. She told them "Make a wish for your cousins." Cole threw his change in and declared "I wish for a puppy for Alex and Spencer." Not for them to grow, or get well, or get out of the hospital...there's no doubt in his mind that the boys are going to be just fine. Help me God, to have the faith of a child, and not to focus on what might happen, but to dwell on all the beautiful wishes my family, friends, and I have for my boys, and imagine them coming true someday.

Monday, May 9th

Alex and Spencer are 30 weeks gestationally today. I'm supposed to be staying positive, but I feel like all I can do tonight is worry. I visited twice today, once in the early afternoon and once this evening, and both times Alex appeared to be very tired. He didn't move around very much, didn't try to open his eyes, didn't respond when I spoke or sang to him. The nurse wasn't happy with his blood pressure this afternoon, and his urine output is low. He has me worried that something is wrong. A culture of the aspirates from his ET tube has been ordered to see if he has an infection, and he's getting a blood transfusion tonight. Maybe he'll perk up after the transfusion and I'm worrying for nothing. He finally did squeeze my finger a bit when the nurse was drawing blood, as if to say "I'm okay, Mommy. Stop worrying so much." I'm trying not to, baby bear, I really am.

I held Spencer again tonight and I swear he smiled at me when I was talking to him!

Friday, May 6th

Spencer was extubated and put on CPAP at about 10:30 this morning. He seems to be doing well with it. Several other parents had told me "You won't be able to see his face once he's on CPAP," but I can see his eyes and his mouth. I love seeing his little mouth and tongue; they have been hidden by the bone that held his ET tube in place. Hearing him is incredible. He doesn't make a lot of noise yet (tiny squeaks escape when he's crying) but it's the beginning of hearing his voice. I gave Spencer a pacifier for the first time today and he did well with it. I made sure that he had it for his 6:00 feeding, so that he would begin associating sucking with being fed. I'm hoping that this will make the transition from tube to bottle/breast feeding a little easier for him.

Wednesday, May 4th

I've been bad about blogging lately. So much going on, so many thoughts running through my head, and I haven't taken the time to record them. As of last Thursday Alex is up to 985 grams (2 lbs 2.7 oz) and as of this Tuesday Spencer is at 990 grams (2 lbs 2.9 oz). I finally got to hold Spencer on Friday and Alex on Sunday. It was a little overwhelming with Spencer, taking that tiny baby into my hands. Holding him really put into perspective just how small he really is. I cried, of course, when I held them. They bring me so much joy. I just want to hold on and never let go.

Now I'm sick with another cold, so I can't even go see my boys. I've been trying not to get down about it, and today I learned something from the pharmacist that made me feel a little better. She said that the immunity I'm building up against this virus is being passed to them through my breast milk, so, in a way, I'm actually helping my babies by being sick.

The doctors decided to try extubating Spencer on Saturday. This means that they removed his breathing tube, took him off the ventilator, and put him on CPAP. CPAP doesn't actually breathe for the babies, as a ventilator does; instead it keeps the airways open by blowing oxygen in through the nose. The doctors thought Spencer might be ready to breathe on his own, based on the fact that they had been able to steadily lower the settings on his ventilator. He was off the ventilator for about two hours on Saturday, but he was having to work too hard to breathe on his own, so they had to reintubate him. Fortunately, I had talked to other moms whose babies had gone through the same process; this can happen several times before the baby is permanently off the ventilator. It was still disappointing, but at least I was prepared. The doctors further lowered Spencer's vent settings today, and will probably try to extubate him again tomorrow.

Alex resumed feedings yesterday after a week off due to his PDA ligation. As of this morning he was getting 3 ml every 3 hours and tolerating his feeds just fine. They will increase his feeds by 1 ml every 12 hours. He is still in an open warmer bed. I hope they'll be able to switch him to an isolette soon, where it will be quieter for him. He really gets worked up when it gets noisy in his nursery!

I can tell I'm suffering from a little post-partum depression. I'm irritable sometimes and I cry at the drop of a hat. I've received many beautiful cards, expressions of concern, and reminders that people are praying for and thinking of us (including several "first mother's day" cards!). Almost every time I read these missives I start bawling. Spencer, Alex, and I are very blessed to have the support of so many wonderful, caring people.