Monday, October 31st

Ainsley and Benson say "Happy Birthday, Aunt Liasa!"

Ainsley has continued to have very small amounts of blood in her stool. They did an x-ray last night and another one this afternoon which were normal. The doctor thinks she is having irritation from something and he feels it is most likely milk protein. He is putting her on Similac Alimentum formula which has polypeptides instead of proteins so it is easier to digest. He wants her to take that for "a few" days and then we can gradually transition back to breast milk and see how that goes. If she would start to have blood in her stool again it is possible she has a milk allergy. She could still breastfeed but I would have to cut dairy out of my diet. Hopefully we won't have to worry about any of this and we'll restart her on breast milk in a few days without problems. The doctor does still plan on discharging her tomorrow. We are of course excited but it is bittersweet leaving her brother here.

Benson is doing alright. He really hasn't seemed to make progress but also isn't getting any worse. Some feedings go well and others don't. We are still hoping that "the light bulb" will come on soon. We still feel he is refluxing, actually we know he is. You can sometimes see it come up into his mouth during his gavage feedings. However, the nurse told us they won't give them anything for it unless it is documented on a swallow study and Ben happened to NOT reflux during his 5-10 minute swallow study, though he does about every other time. Amy, the speech therapist did not stop by today so hopefully we will get to talk to her tomorrow.

I cannot believe tomorrow is November!

Sunday, October 30th

Happy Halloween from Benson and Ainsley!

Ainsley has had a great day eating! She is now on the last "step" which is ad lib on demand. She has been doing very well and tonight was up to 5lbs 7.7oz! She may not go home tomorrow however because she has had a very small amount of blood in her stool. She has no other signs of any problem but they want to watch and make sure everything is alright. We are just watching her diapers very closely and hoping it resolves on its own. If not we may have to try some formula to see if that is changes anything. She also got her feeding tube out!

Benson has had a good day as well. He did well with his two attempts at bottling today and they are increasing him to 2-3 attempts per day now. Sometimes it goes better than others and we just keep praying it continues to improve. Tonight Ben weighed in at 5lbs 12.8oz!

They got these sweet onesies from Aunt Liasa - they say "Auntie gives the best candy" - so cute!

Great-Grandma Betty got to hold Ainsley for the first time!

And Grandma Barb held Ben for a little while.

Saturday, October 29th

The twins hope everyone had a good Saturday!

They have both had a good day! Ainsley has continued to eat well and the doctor changed her feedings to ad lib every three hours. This means she can eat what she wants on her three hour schedule with a minimum of 40ml. If she does well with this tomorrow he will change her to ad lib on demand meaning she can eat what she wants when she wants and if that goes well tomorrow she could go home Monday. Which seems CRAZY! Even if it isn't Monday she will likely be going home the early to middle part of this next week!

We still don't have any sort of schedule for Benson and are just trying to be patient while he figures this whole eating thing out. I think I mentioned yesterday he is bottling just twice a day this weekend and Amy, the speech therapist, will check with us on Monday to see how it has been going. I think he is making some small gains and will hopefully get there soon.

They both got mobiles for their cribs! They are pretty fun!

Friday, October 28th

Happy Friday!

I'm sure it seems weird how much I look forward to the weekends considering I'm not working right now. The twins and I are just so excited to have Daddy here for two whole days!

The speech therapist, Amy came down today and gave Ben his noon feeding. She tried a silicone nipple to give him a little more pressure on his palate and he seemed to do pretty well. We are going to bottle him 1-2 times per day this weekend and she'll check back with us Monday to see how it's going.

Ben gained weight last night and is now up to 5lbs 7.6oz!

Ainsley has had a good day and the doctor said she will likely be going home by the middle of next week! That is the first time anyone has really estimated when she would be going home so we are really excited for that. Just the fact that she is doing well enough they would even venture a guess is great! In case you are curious, when she does go home it will likely be before Ben goes home. She will be allowed to come back down with us everyday and hang out with her brother. They don't allow children in the NICU but they do make an exception for twins.

Ainsley also gained weight and is now up to 5lbs 4.6oz!

I didn't have my camera handy when Ben was making his cute faces tonight but I did snap a picture of each of them sleeping before we left for the night.

Benson

Ainsley

I hope everyone has a great weekend!

Thursday, October 27th

We started this morning with a great report from the overnight nurse! Ainsley had taken two more full bottles! Benson bottled twice and took around 22-23ml each time (out of his 45ml).

AND they both gained weight! Benson is up to 5lbs 6oz and Ainsley is 5lbs 4oz.

Ben had his swallow study this morning. He did very well and didn't cry at all! The speech therapist could see (and showed me) how he isn't using his tongue properly to eat though he does with his pacifier. The underlying question is why this is the case but we might not be able to tell for sure. This afternoon the speech therapist came back with our plan. She is going to bring some different nipples to try tomorrow and watch him as he tries them. She may also show us some "exercises" to do to help improve his feedings.

I took this video today of Ainsley after she ate. She always makes the cutest faces after eating!



Ben makes some pretty darn cute faces too. I'll try to catch him tomorrow.

Yay for tomorrow being Friday!

Wednesday, October 26th

Thank you all for the kind words yesterday. They really mean so much and help us get through!

Today Benson had his car seat test and passed!

Ben will have his swallow study tomorrow at 11:30am. Basically we will go down to radiology and they will give Ben a bottle with barium in it so they can use an x-ray to see how he swallows and hopefully identify any problems. He had a pretty rough feeding this morning at 9:00am. He spit up once during his gavage and seemed to be so uncomfortable while it was going in his tummy. He always seems uncomfortable but this time it was really bad which may have been due to the vitamins they gave him with his feeding. His car seat test was right after his feeding and he spit up as he was being put in his car seat. Since he had the vitamin drops (with iron) it was a lovely shade of green and it got ALL OVER his cute pumpkin outfit! I scrubbed it in the sink with dish soap but then thought that he'll never wear it again - Halloween is this weekend and it certainly won't fit next year - duh, Mom!

Ainsley has done a good job eating today and took full bottles at 6:00am, 9:00am and 6:00pm. I think three full bottles is a new record! She also did good on her partial bottles today, generally leaving only about 8ml.

That's about it for today. I hope everyone had a Happy Humpday!

Tuesday, October 25th

The twins are two weeks old today! That also means they have been in the NICU two weeks. It has been an emotional day hitting that two week milestone here.

The neonatologist backed off Ainsley's feedings to 5 or 6 attempts at bottling per day to allow her to get some more rest and build up more strength. This was definitely a step backward on the trail to getting home which was very hard for us. We understand that there will be setbacks but it doesn't make it any easier when all we want is for our babies to be healthy and come home with us. Hopefully this will allow her to conserve more energy and gain more weight. As of last night she weighed 5lbs 1.4oz so she is back up to her birth weight.

The speech therapist came today to watch Benson eat. He really did a good job of showing her how he usually eats. He will be hungry so he'll take the bottle but then will only take about 5ml to 7ml, of which he seems to spit out about half. Then he'll stop swallowing and start to gag or cough. She also observed him sucking his pacifier which he does VERY well. She said his technique with that is great and if he took his bottle that some way he would be eating well. The question is why is he not wanting to take the bottle. At this point there is the possibility of reflux. Preemies have an increased likelihood of having reflux and the feeding tube holds open the sphincter at the top of his stomach which makes it easier to reflux. So he could be protecting himself from the pain of the reflux. Another possibility is that he is guarding his airway and for some reason is having trouble "getting it down the right tube." So he is going to have a swallow study either tomorrow or Thursday to try to learn more about what exactly he has going on. In the mean time we are doing mostly gavage feedings to avoid making him so uncomfortable. This will also allow him to get more rest and burn fewer calories. As of last night he was up to 5lbs 3.4oz (birth weight was 4lbs 15oz)!

We appreciate all thoughts and prayers as it is becoming harder to deal with having the babies in the NICU. We absolutely cannot wait to have them home. People comment that it will be harder when they're home as we won't have help to care for them. I have to disagree. To me it will be such a relief emotionally to have them at home. It is so draining to worry about them when we leave at night. It will be so much easier to rest during the day when they are resting and we are comfortable at home and not sitting on hard chairs or a bench and there aren't people coming in and out of the room every hour or more. I don't mean to complain but we are wearing out and I guess one of life's lessons is to ask for help when you need it. There isn't much you all can physically do but if you are inclined to pray for us or keep us in your thoughts we would very much appreciate it! Specifically we are praying that Ainsley will continue to grow and gain weight and that will help her to be able to eat better so she can come home. We pray the Benson will do the same and that the staff here will be able to learn from his swallow study so that we can help him to eat more comfortably. And lastly we pray for strength for Mom and Dad that we can be strong for the babies and take care of them the best we can!

After bath time tonight we had a little photo shoot. We HAD to get a couple pictures with the babies in their pumpkin outfits!

 

We love our little pumpkin butts!