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!

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