E.R.

I was watching a rerun of 'E.R.' today while I was feeding the boys. They were treating a woman who was 24 weeks pregnant whose labor they could not stop. The woman told them she didn't want to have a preemie because her sister had given birth to a premature baby who was in the hospital for months and didn't make it. Several of the doctors supported her view, saying that the baby had a 10% chance at a normal life, and that they shouldn't throw hundreds of thousands of dollars away to try to save one baby who would probably have a very poor quality of life when they could be using those resources to treat other children. It upset me so much to hear these opinions voiced as I sat there holding my two 24 weekers who are now very healthy and normal. I suppose there are many people out there who share the viewpoints that some of the characters on the show expressed. Perhaps they consider their philosophies pragmatic, however I would label them as pessimistic and negative. I believe in miracles, and I have two beautiful boys to prove that miracles really do happen!

October 26, 2005

Last week Alex began waking up just once every night. It has made my life so much easier, only getting up once each night to nurse one baby. This morning I woke up and greeted the boys in their crib. I was sleepily saying good morning when suddenly I realized "Alex, you slept through the night!"

Growing Boys

Alex was finally discharged, after two weeks in the hospital, on Monday afternoon. The last four days since we came home have been very trying. Alex is very fussy and needy, rightfully so. He has an incision across his abdomen and a deep wound from the ostomy site. The wound is closing up nicely; I've been surprised by how quickly it has become more shallow. My poor baby is also suffering from painful, raw skin on his buttocks. His tiny hiney isn't used to having stool on it, especially several times a day. Every day he gets a little better, though. This morning we took a bath together. He was the most relaxed I've seen him since his surgery. He was giving me lots of smiles and could have fallen asleep in the warm water.

I've barely slept a wink all week. I've been up with Alex at all hours of the night. Spencer, however, started sleeping through the night while we were staying at the Ronald McDonald house, and has continued to do so. What a wonderful break it was to sleep through the night for two weeks straight, and it is definitely an advantage to have to care for just one baby at night.
The boys had their appointment with the pediatrician today. Spencer is now 9 lbs. 4 oz. and Alex is 10 lbs. 14 oz. They both gained 25 ounces this month. Spencer is no longer anemic and does not need to take iron supplements anymore. Alex got permission to start on a little rice cereal once a day. He hasn't hit the four month mark in corrected age yet, but the doctor agreed that he is catching up well and would probably be okay starting the cereal. Here he is below trying it out. It was also his first time in his feeding seat. He did a lot better with the cereal when I was holding him, as you can see from the pictures.

Spencer saw the eye doctor again for his ROP two weeks ago. It has resolved and he does not need his eyes checked for another 6 months. He is "talking" a lot now, and squeals with delight at times. He's so excited and full of smiles during our little "conversations"; I really enjoy them.

Humpty Dumpty...

...has been put back together again. During an approximately three hour surgery this morning, Alexander's ostomy was removed and his intestines were reconnected. The surgeon was able to go in through the original incision, which means no new scars. He had to remove Alexander's appendix and the valve between the small and large intestines. Alex will stool more frequently for awhile, but eventually his bowels will adjust. He may have B12 absorption problems, but this will be watched and he can receive shots if needed. And we'll never have to worry about appendicitis! Alex will recover for five days before he is allowed to eat. After that it will take a couple of days to make sure his digestive system is in working order, so he should be out of the hospital in about a week.

Spencer's hernia repair went well. He was in and out of the hospital in about 24 hours, as expected. He has not been his usual easy-going, happy self this week. It's obvious that he's a little uncomfortable. I think he misses his brother and home, as well.

Elmo has been a big help with the boys while we've been at the hospital. Alex was introduced to and fell in love with an Elmo doll a few weeks ago, and I've discovered that Spencer loves him as well. The boys actually smile at Elmo and try to talk to him! It must be those big black and white eyes, that wide mouth, and the cute round orange nose. I've always been anti-Elmo, because I'm a big Grover fan and I feel like Elmo's replaced him, but if Elmo makes my boys happy, I guess he must be alright.

The boys are six months old today. It's really hard to believe that six months have passed since they entered the world. Half of their lives so far were spent in the NICU, but that seems like so long ago to me. I am in awe of the incredible miracles that they are, my beautiful boys. I am so blessed and so full of love for them.

Back to the Hospital

Spencer and Alex check into the hospital tomorrow for their surgeries. Spencer is having his hernia repair done tomorrow at 9:30 am. He will be there overnight. Alex's surgery is on Friday. He'll be in the hospital for 10 days. I'm really glad to finally be getting these last things done. I know they'll both come through with flying colors, but it is still causing emotional stress. That's just the nature of the beast, I suppose. It feels eerily strange to be back at the Ronald McDonald House, where Spencer and I will stay until Alex is released, and going back to visiting the hospital every day to see my son. I hope and pray that this is the last time either of them ever have to be admitted to the hospital.

September 13, 2005

Spencer gained 8 ounces this week! I'm so proud of him. He is now 7 lbs. 12 oz. Alex gained another 11 ounces, to reach 9 lbs. 11 oz. I've got to get some regular formula for him. The doctor said he doesn't need the extra calories from the 22 calorie formula anymore. That's obvious...just look at the porker! She said again how impressed she is by how incredibly well they're doing, and believes it has a lot to do with the breast milk. I agree...that and all the love, prayers, and positive energy from the wonderful people in their lives.

Both boys are doing well with their OT and PT. The therapists are pleased and so am I. Everyone who takes care of them is aware of the things they need to work on. It helps that their therapy is incorporated into everyday activities by their caregivers.

School is a challenge. I love going to classes, but forcing myself to study when I could be playing with the boys or catching up on housework and paperwork is difficult. It also doesn't leave any "down time" for me to unwind. I'm still adjusting, but I believe I'll get into a routine. It's worth the short-term sacrifice for the long-term gain. With my master's I'll be able to find a job I love and make a better living to provide for my boys.

September 7, 2005

Spencer was on his back on the floor hanging out while I was doing some chores. I came back to find him laying on his right side. He turned all on his own. Happy birthday to me....I have the best two gifts ever!

September 6, 2005

Alex weighs 9 pounds!!!

Made Me Laugh

Last night I was patting Alex's back as he drifted to sleep on my chest. Suddenly he burped so loud he made himself jump!

Alex is now 8 lbs. 8 oz. and Spencer is 7 lb. 1 oz. Alex loves brightly colored toys, rattles, and bells. Spencer enjoys staring at the faces of those who hold him, and smiles in response when spoken to. Both are lifting their heads and turning them from side to side when on their tummies, especially when tempted by the sound of a musical toy or rattle. Their therapists are impressed by their development.

I embarked on a new path in life this week: graduate school. My first class was last night. Leaving the boys for the first time was a little sad, but they were safe in Grandma's and Bhapu's care. It felt both strange and wonderful to be doing something other than being a mommy. I'm really excited about this new endeavor, and I know it will enrich the lives of my little family.

19 Weeks Old

Spencer and Alexander visited the pediatrician again this week. Spencer now weighs 6 lbs. 3.5 oz. He's finally gained a little weight, but he needs to keep at it. He's eating better than before, and really enjoys breastfeeding now. The title of "Booby Monster" has been passed from his brother to him. Alexander seems to prefer the bottle over the breast now, probably because of the added calories in the bottle. He's a little piggie. Alexander is now a whopping 7 lbs. 1 oz.! I know he's still a small baby, but he seems so big to me.

Both boys are off their monitors. I'm so glad that we don't have to deal with wires anymore. The only big hurdle left is their surgeries. Alexander's surgery has been postponed once again. It is now scheduled for September 30. I'm so frustrated. It should have been done back in June, and now it's another eight weeks away. Spencer's hernia surgery is on September 26. I will take both boys to the hospital that day. Alexander has to be there for a few days prior to his surgery, to prepare his intestines. He will be there for a total of eight days. Spencer will be there overnight.

We're working on getting a bedtime routine down. I start grad school on August 29. Mom will be watching the boys in the evening while I'm at classes. A bedtime routine will make things easier for everyone. Alexander and Spencer really are good babies. After their morning bottle they'll usually hang out in their crib together, and I can get breakfast, a shower, and a few things done. They have their fussy period in the late afternoon/early evening, when they require a lot more holding and nursing. Alexander really loves being held by his Bhapu; he relaxes and snoozes on my dad's chest. I'm so grateful for my parents' help. The boys are so blessed to have so much love.

A Very Good Day

Alex went to see the eye surgeon for another follow-up appointment today. There is no further growth and the Plus disease is resolved. He doesn't need to see the surgeon again and will not need to have his eyes examined again until October. I told the surgeon I could just hug him for saving Alexander's sight. I am so thankful. We also visited the pulmonologist today. Alex is doing well and no longer needs to take the diuretics (two less yucky medicines to force into him every day!). They'll do an overnight home study to make sure everything is okay and then they'll take him off the monitor. Oh...they weighed Alex: six pounds nine and a half ounces! Even with his ostomy he is gaining weight steadily. I'm so pleased with his progress.

Both boys behaved so well for me today during all our running around. They both ate well and did not fuss a lot. It did wonders for my spirits to have a "good" day with them.

What A Mother Really Needs

It's almost 4 am. I just finished nursing Alex and I should be sleeping, but I have some thoughts I really felt the need to record. Yesterday and the preceding night were probably the hardest since the boys came home. I was exhausted, frustrated, and emotionally and physically drained. My sister and I took a break this evening and went out while Grandma watched the boys (the fact that a simple trip to Target and Walmart has become a major treat for me is a sign of how much my life has changed). The break was good for me. As I was holding Alex after his feeding just now I realized how tense I have been. I began to breath deeply, inhaling and exhaling slowly....inhaling peace and tranquility, exhaling tension and anxiety. As I relaxed, so did Alex. I thought to myself, "The Creator has given me everything I need to be a good mother. I just have to reach deep inside of me and draw from the source." I have been so caught up in doing everything the "right" way that I've forgotten about trusting my intuition. All of the many books I'm reading, all of the sage advice from doctors, nurses, and other parents, are invaluable. But the answers don't lie with them; they lie within me. I need to breath deeply and trust my mother's intuition. Only when I do that will I find the peace that it takes to be the wonderful mother I want to be to my beautiful boys.

Four Months Old

Wow! I can't believe how long it's been since I've blogged! I think about it almost every day, but finding the time is so hard with both babies home now. Things are finally starting to calm down and life is beginning to have a steady rhythm to it. I'm actually finding the time to get some things done.

Alexander
We've had a flurry of doctors appointments. Both boys are doing well. Alexander weighs 6 lbs. 3 oz. and grew 1/2 inch in 2 weeks! Spencer didn't gain any weight in 2 weeks, but we started him on Zantac this week and he is eating much better. He seems a lot happier and more interested in feeding. I'm sure he's going to have a good weight gain the next time we see the pediatrician.

Alex had a second round of laser eye surgery on July 18th and was in the hospital overnight. I was disappointed that the first surgery didn't help his ROP and that we needed to return to the hospital so soon, but guess what? After his surgery he came right off the ventilator and the next day he came home without oxygen! Just another reminder that everything happens for a reason. At Alexander's follow-up appointment this week the surgeon said that the ROP is regressing. He is not as concerned about Alex now that he has reached full gestation and he doesn't need to see Alex for another two weeks. Spencer has ROP, too, but it is not as advanced as Alexander's was and it is already improving.

Spencer

The hot weather finally broke and Thursday evening after supper I took the boys for their first walk. Alex was crying before we left the house but calmed down and went to sleep while we were strolling. Alex is the big crier; I think he just wants to be held a lot to make up for all the time he couldn't be held when he was so sick. I've been wearing him in a ring sling and it really calms him down. I noticed this morning that when the boys are crying and I walk into the room and say something, they stop. They know me! I still can't believe I'm the mother to these two beautiful baby boys.

Two Turtle Doves Together At Last

Well, I figured out how to get Alex to sleep. Leave the lights on! I guess he prefers that since he's so used to having them on from being in the NICU. Last night Mom and I went and got a portable crib for my room. I laid Alex in it after his midnight feeding. He was totally content to lay there and look around for about an hour/hour-and-a-half before drifting off to sleep, while I was piddling around the room. We both slept so much better last night.

I woke up this morning to a hungry, crying baby whose ostomy bag had come off. I felt totally zonked, but somehow I managed to get him undressed, bath him, apply a new bag, and feed him. This is another reminder that I'm going to be able to get through anything as a mom. Strength that I didn't know I have rises up from somewhere inside of me, and again and again I successfully negotiate the challenges of being a single mother of twin preemies.

Spencer is coming home again today! I'm so excited. The good news is that both boys are on the same feeding schedule now. Maybe I'll actually be able to get some decent sleep. I can't wait to see them laying next to each other in their crib. I can't wait to see how they react to each other. I am so blessed. Things could have been so much worse for my boys. They are very healthy for 24 weekers, they are beautiful, they are good babies. Thank God for them, for my family, and for my friends. I'm the luckiest girl in the world.

Alexander's Homecoming

On Saturday, July 9th, after 100 days in the NICU, Alexander Christian came home. He is such a good baby, a great eater with a steady schedule. Grandma is spoiling him with lots of cuddling (she says she's making up for all the time he couldn't be held, and who can blame her?). He's on oxygen and a monitor but is doing great. I am exhausted. We roomed in Friday night at the hospital and I didn't sleep much on the uncomfortable "bed" there. It's taken me some time to discover that I can't just feed Alex and put him back in bed at night. He wants to be held until he falls asleep or swaddled very tightly so that his paci won't fall out of his mouth. Hopefully tonight we'll both sleep a little more soundly. Last night he slept laying on my chest for a couple hours. We both slept great that way, but I can't get into that habit. I have another baby who'll be home soon!

Speaking of that other baby, Spencer is doing really well. He is waking up before his feedings now and taking more than his minimum of 45 ml. His nurses are saying that he is much more interactive and alert this weekend than he was last weekend after being readmitted. Hopefully he'll be coming home soon, too. Then I can really kiss sleep goodbye for awhile!

Miniature Milk-Eating Monsters

Well, Spencer's hernia surgery was cancelled. The surgeon had two emergencies this morning so he didn't have time for Spence. I have no idea when it will get done, nor do I know when Spencer will be coming home again. We're just hanging out waiting for the results of the apnea study, I guess.

Alex is coming home Saturday. The equipment supply company rep came to the hospital today to show me how to use the oxygen and monitor. I changed his ostomy bag once last night and hope to get a chance to do it again before we go home. We're rooming in at the hospital tomorrow night so that I have a chance to deal with everything with nurses close at hand. My sister is rooming in with us, thank God. I want someone else in the family to know how everything works, and I trust my sister implicitly. I just have to say how thankful I am that she is here for us, and how much I appreciate her husband loaning her to me for the night (they have all six of their kids at home right now!).

I forgot to mention yesterday that a couple of the nurses who were watching Alex breastfeed yesterday said "I've never seen a preemie breastfeed like that!". I'm proud of him, and I've given him a new nickname (one I'm sure he won't appreciate when he gets older): the Booby-Monster....LOL....as in: "The Booby-Monster awaketh." He wakes up half an hour before his feeds and screams until he's fed. The boy has a bottomless stomach. He would sacrifice sleep to eat, whereas his brother would sacrifice eating to sleep. The minimum Spencer needs to take at each feeding is 45 ml and he takes just that....not a drop more! It's as if he knows and says "Okay, I've satisfied the requirement. Now let me get back to my sleeping."

Spencer has been undergoing a six channel reflux study since about 9:00 PM last night. He had two apneas during feeds in the wee hours of the morning. The study takes 24 hours, but I don't know how long it takes to get the results. I do know that I'll be insisting on an apnea monitor when is released again.

One of the blessings that has come from Spencer being readmitted to the hospital is that they are going to do his hernia surgery while he is there. He is scheduled for 9:40 tomorrow morning. I'm a little nervous because he's never been under anesthesia before. Hopefully he'll tolerate it okay.

Alex is exclusively breastfeeding when I can be there to feed him. He is a monster at the breast. I'm thrilled! The nurse practitioner in charge of the intermediate nurseries asked me today if I'd be willing to take him home before his intestines are reconnected, because he is pretty much ready to go and they're not sure how soon they'll be able to get the surgery done. I said "Sure." I've been emptying out his ostomy bag lately and I'm sure I can learn how to change it. We'll know tomorrow morning if they can do the surgery Friday. If not, he'll be coming home this weekend. They'll send him home on oxygen and a pulse oximeter and heart rate monitor. It will be cumbersome, but I'll deal with it. He's such an awake, interactive baby. He'll be so much fun to have at home. After he ate today he was still awake and fussing, so I hung this musical, light-up mirror on his crib. He just stared at himself in the mirror. I was amazed by how intent he was.

Spencer is still in the hospital. He is doing a little better since he had a blood transfusion last night, but he is still de-satting and turning purple during feedings. The doctors want to order a study to check his reflux. It could take a couple of days. I miss him so much. It was such a cruel tease to have him home for two days and then have to bring him back to the hospital. It would have been easier if he had just stayed there. I just want to curl up and sleep until he can come home again. I'm so tired.

Spencer's Homecoming....And His Return to the NICU

Spencer came home on Thursday, June 30th, at exactly 13 weeks of age. All of his aunts, uncles, and cousins came to see him within 24 hours of his arriving at the home of his grandparents, where we'll be living for awhile. The first night was really tough; I barely slept a wink. The second night was a little better.










On the way to the hospital yesterday (Saturday) to see Alex, Spencer had an apnea. We stopped at my sister's house to pick her up and when I got out of the car to check on Spencer in the back seat his whole face was purple. He was not breathing at all. I whipped him out of his car seat and gave him some rescue breaths like they taught us in infant CPR. It took some stimulation to get him breathing again, and then he was really raspy and gasping for air. It was the single most frightening moment of my life. I just want to put the image of his face at that moment out of my mind forever.

Spencer was fine after a little while. He was back to himself and even had a little bit to eat. We called the pediatrician's office and they told me to take him to the ER since we were on our way to the hospital. They readmitted him to the NICU, where he had another apnea shortly after admission. He has been fine ever since, but he will be there for up to another week even if he doesn't have any more episodes.

I am so upset with myself for letting this happen. He will be fine, and this gives me some more time to get organized and rested. He is in good hands at the hospital. I'm trying to focus on the positives.

Alex is recovering well from his surgery. He is taking every other feed by bottle and is out of heat. They are going to put him in a crib today, which I'm going to decorate for him. He has hit the five pound mark! It won't be long before they're both home and I'll be missing my "free babysitting".

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!