Also, I’ve been a little disheartened over a recent betrayal from some people that we used to consider very close friends. They shocked us when they revealed that they were never actually our friends but they used us to feed their greed and avarice. It was a complete blindside and left me confused, angry, hurt and disillusioned. What a shame! There was a time that I would have done just about anything for these people but now I feel nothing but disdain for them. Ugh. I’m sorry to vent that. On to happier, actually worthwhile things, the twins!

The boys turned 3 months old on October 15. They celebrated that day by traveling to Utah to visit with Heather to visit her parents. They will return Saturday. I’ve definitely missed them! The boys have begun to smile and make cooing noises when they are played with! The attached photo is from today when they were in one of those moods. So cute!

Drew visited with his cardiologist on 10/15. He weighed in at 10 pounds 8 ounces! Dylan was not weighed but he has usually been only a couple ounces behind. Drew’s heart was looking good; however, the doctor still felt that he needs to have another valuloplasty in December. The specific date has not been set yet. They expect him to be in the hospital anywhere from 6 to 24 hours. The doctor is optimistic that this could be the final heart procedure that he ever needs. Wouldn’t that be wonderful!

The boys are a lot of work, but we are having fun. Heather has been a trooper and continues to breast feed them. She is a great mother!

I will try to add more photos soon from the past couple months. For now just enjoy this cute one of their smiles! I’ll have to have Heather fix the red eye that they seem to get in every photo.

Heather took the opportunity to do skin to skin contact with both boys at the same time. They were very content and looked at each other. Drew is on the right.

I’m sure that we’ll have endless numbers of photos but there are only a few right now. Drew is on the right in both photos.

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OK… so this continued my strange 15-day trend.

July 15 – Drew & Dylan were born

July 30 (15 days later) - My grandpa died

August 14 (15 days later) – My brother, Aaron, got married

August 29 (15 days later) – Drew came home from the hospital

September 13 (15 days later) – ???

July 15 – Drew & Dylan were born

July 30 (15 days later) - My grandpa died

August 14 (15 days later) – My brother, Aaron, got married

August 29 (15 days later) – ???

Interesting, huh? Well, we just learned this morning that Drew is scheduled to come home on Sunday… August 29! I’d call that a significant life event. This would be exciting; however, then I’m going to have to look ahead to September 13 to see if the trend continues. Anyway, Drew might be home on Sunday! His last brady episode, that required assistance to bring him back, was on Tuesday. If he goes 5 days without needing further assistance then he can come home.

On Tuesday the doctors ran a 24-hour test to measure his acid reflux. They sent a tube with a monitor through his nose down his esophagus. The results showed that he has “moderate” levels of reflux. They are likely going to put him back on Zantac and send him home with that. We’ll then see if his pediatrician wants to keep him on it.

Drew has been doing well. So has Dylan. Oh, I forgot to provide an update on their weights. As of Monday, Drew was 5 pounds 12 ounces. Dylan was 5 pounds 6 ounces!!! That is up from 4 pounds 10 ounces from just 5 days before! The concerns about him not gaining weight is behind us. Whew!

They’ve taken him completely off of the beta blocker for now in case that is what’s causinghis episodes. They’ll likely put him back on either in two months or when he is two months old (not sure which). The beta blocker is kind of a double edge sword. On the one hand it may be causing his brady’s but, on the other, it’s helping to reduce or at least slow the thickening of his pulmonary valve.

Drew is improving on his bottle feedings and even had a successful breastfeeding today. Last night he weighed in at 5 pounds 8 ounces.

Dylan will check his weight again on Monday at his next pediatrician visit. He’s been eating well so I expect that he’ll be up at least an ounce. He’ll join us briefly for a Dickens family photo before my brother, Aaron’s, wedding reception. We had hoped for Drew to get to be a part of it but that is not going to happen. It’ll happen soon enough though.

Dylan had his third visit with the pediatrician today. He is doing well besides the fact that he didn’t gain anymore weight. He is still 4 pounds 10 ounces. It’s strange because he eats really well and has plenty of dirty/wet diapers. The doctor suggested that we give him an extra ounce or two of pumped breast milk via a bottle after he takes however much he can get in 30 minutes directly from the breast.

The boys are 5 weeks old today. It is the day that Heather’s doctor had said that he wouldn’t have let her go past had she still been pregnant. Her 40 week due date is still two weeks away on September 2.

Drew has gone through a growth spurt! He is up to 5 pounds 5 ounces! I hadn’t seen him since Thursday and after seeing skinny little Dylan at home so much it was almost shocking to see Drew at CHOC tonight. His cheeks are so full and he looks so much bigger to me. Overall, he is still a tiny little guy.

Dylan seemed so skinny to me when I got home.

Drew also received a second blood transfusion this afternoon. Actually, we think this is only his second. The hospital didn’t call us about this. It happened and then we learned about it when we called to check up on him. I’m guessing that our consent from July 16 was still valid. It’s not that we would have withheld consent if they had called us, it just would have been nice to know. The doctors are hoping to see his hemoglobin count go from the current 11.5 to at least 14. His white blood cell count is at a satisfactory 16. Again, I’m sorry for not knowing the units of measurement. I just hear the numbers and figure that it makes no difference to know more.

The results of the Propanol reduction and the blood transfusion will manifest within two to three days. They will decide what else is necessary at that point. They may begin adding back some bottle feedings in a day or so but that has not become official yet.

Sorry for not updating the blog in a while. It seemed that the daily progress was not super significant and we were staying pretty busy. I’ve been amazed at how many people have been interested to get updates. We really do appreciate all the support and love that everyone has expressed!

Dylan came home on the 3^rd. I was wrong in my previous post. It had only been 19 days in the NICU, not 20. It’s been fun having him home and getting to experience all that he has to offer. The first night was a little rough because he was grunting and fussing most of it. He had received formula in the NICU prior to his discharge and his tummy was having trouble digesting it. Dylan is the poster child of breastfeeding. He just needs to get more of it. His weight hasn’t been increasing enough so Heather has had to increase the number of daytime feeds. On Thursday he weighed 4 pounds 10 ounces. He gets to determine when he’s hungry at night. Fortunately, on most nights this is about 5 hours. Heather has been a trooper through this whole process. She is producing enormous amounts of milk and we’re filling up an entire 2^nd freezer in the garage, in addition to feeding Dylan and delivering milk to Drew. The nurses are amazed at the output. Her mom came down on the 4^th to help out and has been here since.

With Dylan being so skinny, it has been difficult for him to maintain an adequate body temperature. Actually, he has been doing much better recently but there were a few days that he was measuring at or around 94 degrees! They want him between 97 and 99.

He’s a cute boy and we’ve enjoyed having him home. He continues to spray people during his diaper changes. Fortunately, I have not experienced this yet; however, it is probably just a matter of time.

Drew had a significant setback on Saturday. There had been talk this week that he might be going home yesterday. That was obviously not the case and now there is no date in sight. About a week ago, he began receiving 1 out of every 3 of his feedings by bottle. He has previously taken bottles and even breastfed but they scaled back due to his episodes of not breathing and his stats falling. Anyway, after 1 in 3 for a couple days they advance to every other, then 2 out of 3. Yesterday he began taking a bottle on every feed. He was still having episodes but he resolves them without nurse assistance. They were going to have him try to resume breastfeeding today and possibly even come home. Well, he never made it that far. He has an increased number of episodes and needed oxygen to resolve at least one. They’ve taken Drew off of all bottle feeds and gone back to the feeding tube. They don’t know what is causing the problems. They thought it might be acid reflux but the nurses have ruled out that option, the doctors haven’t though. They think it might be the beta blocker that he takes for his heart condition, but they aren’t sure of that either. So what now? We don’t know. My guess is that they’ll start running more tests now that they’ve backed off their fast track to sending him home. His weight is progressing nicely though. A couple days ago he was 5 pounds and 1 ounce!

It’s late. I hope this made sense.

At 10:30 Heather went to CHOC to see Drew. I stayed with Dylan. My first solo babysitting assignment went well. Actually the cats were here to help. They’ve been quite cautiously interested. They creep up and sniff occasionally but they spend most of their time just watching a couple feet away. I think they’ll grow to be great friends.

Drew is now in an open air crib! His PICC line has been removed and he only has the monitor stickers on his chest and an oxygen saturation monitor on his foot. We’re very excited about him reaching this critical milestone. This means that he can come home soon! All he needs to do is learn to eat consistently. Last night Heather was able to bottle feed him 36 of his 40 cc’s. The remaining 4 cc’s was administered through his feeding tube. It was great progress.

Heather was pretty frustrated with the CHOC nursing staff because they have only been feeding him through the feeding tube and not with the bottle. It appeared that they were just being lazy. Well, we’ve changed that view after tonight. Heather attempted bottle feeding again. It didn’t go well. He “de-sat”ed twice in 10 minutes. His face and lips turned a dark blue. Heather was really scared! The nurse said that it’s not uncommon for preemies, especially if they have heart conditions and has reflux. They aren’t planning to give him any meds for the reflux because it isn’t consistent enough. They don’t want to risk the side effects. Other than this, Drew is doing well.