May 27

The girls are getting so big! I really cannot believe it. Vivian is now 4 pounds 13 ounces, and Mary is 4 pounds 6 ounces. She is trying really hard to catch up to Vivian but just can't quite get there ;) They are going to town on the nursing, and we are starting 3 times per day today. The nurse practitioner said today that if they do well with that we could go up to 4-5 times per day in a couple days.

I am pretty much planning on camping out here until we go home, which I am anticipating in a few weeks. Maybe sooner if they really take off with nursing! I will definitely be missing Norah, but I feel like these next few weeks will be critical in establishing breastfeeding. In the long run it will give me much more time with Norah because I won't have to be pumping and giving bottles once we get them home. She is staying with Grandma and Grandpa this week, and I know will not be spoiled at all;)

They are still on oxygen, but only a very small amount. Today Mary is at 24% and Vivian is at 23%. They still go up and down a little bit, and this weekend seemed to require a little bit more than usual. They are down more today though, and a lot of it depends on how hard they work at nursing and how full they are. If their tummies are really full then they have a harder time breathing. I feel like they need some more time to grow just a LITTLE bit more lung tissue and then they will be done with the oxygen.

This morning Mary nursed so much that she had an 8 ml residual in her tummy when they checked before her 11 o'clock feeding. She has NEVER had that much left over! I knew she had eaten a lot hahaha.  Just more proof that they are getting all they need from nursing without us weighing them! So far the doctors have been ok with them not being weighed before and after because they are gaining weight and growing so well.

Okay, breastfeeding sidebar here, so if you aren't interested then just skip this paragraph;) The whole experience breastfeeding here has overall been very positive. I was warned that it was difficult to successfully breastfeed in the NICU, and it is challenging, but the staff has been so supportive of it. One thing that I truly believe is that babies are smarter than we give them credit for. A lot of times we get so focused on numbers, and then freak out when we don't know exactly how much they babies are eating when they breastfeed. But I have found that if I trust myself and my babies, everything goes much smoother. Mary and Vivian know how much they need, and they know how to get it. Some days they nurse for longer periods than others, and that's ok. They show that they are done by not latching back on, looking very sleepy, and having round tummies. They have plenty of wet and dirty diapers, and are appropriately gaining weight. This is how you know at home that your breastfed baby is getting enough. I am so thankful that they staff here is willing to go with these cues and signs and that they also trust me to tell them if I don't think they have gotten enough at a feeding. So much of breastfeeding comes down to being able to recognize your baby's small signs and cues in order to know if they are full or not. If they don't breastfeed, they get a set amount of breastmilk down their feeding tube which is calculated to their weight and age and how much they should need to eat. And this is what needs to happen in the NICU for them to get enough protein and nutrients and calories to grow. But if you think in terms of yourself, you don't eat the same exact amount every time you eat. Sometimes you eat more, sometimes less, depending on a variety of factors. You also don't eat at the exact same time every single day. That is why following your breastfed baby's hunger cues is so important.

Anyways, all that to say that the girls are ROCKSTARS at nursing. I am so proud of them! They may have to go home taking a couple bottles a day that have human milk fortifier in them to get some extra calories. Well, that's probably what the doctors will advise....we will see if that actually happens ;) If I get them home and they are gaining weight perfectly fine I plan on discontinuing the fortifier because it makes them super gassy and I don't think they will need it by the time they are full term. I am not a huge fan of that stuff anyways.

The doctors are also wanting to get them out of their isolettes, which are beds that have heaters in them and are closed off from the outside environment. While they are in isolettes they can be positioned on their tummies and on their sides, and the bed can be raised to prevent reflux, but once they go to an open crib they have to be flat on their backs at all times. I am in no hurry to get them out of their isolettes, and plan on asking to wait for that til the end of the week when they will be 36 weeks. We discussed it in our care conference and our primary nurses really feel that since they are doing so well in the isolettes we should keep up with that as long as we can. The doctors usually do have different ideas than the nurses ;)

So overall we are doing great, and I am starting to try and wrap my head around the idea that I will have 3 girls at home instead of 1 soon!!!

Viv is in green and Mary is in pink!

May 23

Oh my gosh we are really making progress here! Both girls are only on 1 liter per minute of oxygen, and Vivian is on 21% oxygen which is the same as room air! Mary is on 22%, so not far behind. I am so impressed with them! They continually amaze me with how strong they are.

They are still nursing super well. We ended up putting their feeding tubes in their noses instead and they seem to like that a lot better. They can get a much better seal. I think that they get at least an ounce per feed if not more, regardless of that stupid scale ;) One of our primary nurses Julie told me last night that she is fine with not weighing them before and after, because she knows they are getting a good amount. They look and act very full and their little tummies are so round! I hate to overfeed...and would almost rather underfeed them a little bit, because they will get their full feed the next time anyways. We are still nursing just  twice a day, and I think that is all they can really handle at this point. At their feed between the two times I nurse them they are usually passed out and don't even open their eyes when we change their diapers so it really does wear them out. Looking at their cute little faces while I'm nursing them makes the continual pumping I have been doing since they were born completely worth it.

We had a care conference yesterday with the discharge planner and social worker and a nurse practitioner who works in the developmental center at Blank. All 28 weekers qualify to be assessed periodically to see where they are in reaching developmental milestones. Their first check will be at 4 months and their last at 2 years. They also qualify for the AEA developmental program, which is through the department of education and will help with any therapies the girls might need. At this point we are not anticipating that they will need much therapy, if any at all, because they have been so healthy and haven't had any major issues or setbacks. They are not anticipating that they will need to go home on oxygen either, and I agree with that judging from their current oxygen settings!

The next steps are just getting them bigger and stronger and working on taking all feeds by mouth.

Mary FINALLY passed that 4 pound mark! She is 4 pounds 3 ounces, and Vivian is 4 pounds 9 ounces. I still can't believe they actually weigh that much. Although it makes sense if you look at their chubby cheeks and double chins ;)

In other news, Vivian pooped all over me the other night while we were giving her a bath. It was so funny. First off she pooped as soon as we put her in the bath, so we took her out to change the water, and then she pooped on my shirt and pants and foot while we were getting the water ready. So we put her back in, and she pooped again! I have never seen Kyle move that fast ever. He literally jumped away from the tub because he was holding her legs. I was dying laughing. I mean...I know its just baby poop, but the human milk fortifer and all the vitamins she is on make her so gassy and her poop is pretty gross hahaha. So I can't blame him too much!

We get Norah back tomorrow from my parents, so good bye to the carefree life we have had the past week;) Well, relatively carefree hahaha. It will be good to see her though, we did miss her a lot!

May 20

We are all doing well, and have just entered the long slow phase of learning how to eat. Its so tough for the girls because it takes a lot of energy to breastfeed! When I look back at how far they have come in six weeks I am just amazed. We really do expect a lot from them. It is amazing that they can even latch with the tubes in their mouths and the oxygen in their noses.

They are rocking the breastfeeding. The nurse we had yesterday told me that she never would have believed how well they are nursing if she hadn't seen it for herself. She said that 28 weekers like the girls rarely if ever nurse as early and as well as they are. We are nursing two times per day each, Mary nurses at 11 and 5, and Vivian at 12 and 6. They generally take anywhere from 10-20ml, and sometimes take their full feedings! Its a frustrating process, because the scales are rarely accurate, so we probably end up either overfeeding them or not feeding them enough at times. But you can only do what you can do! Every day they get better and better at nursing, and as soon as they are more consistent with their intakes they won't weight them after every feed anymore. They do have occasional bradys with their feeds if they get tired and get a big swallow. Mary doesn't have them very often, but Vivian does at the end of most every feed when she gets tired.

They have started to be more awake around their feeding times and like to be held and look around, or just lay in their little beds and look out. They are very content for the most part. I always feel like I don't have enough time to give to them individually, but then I tell the girls that THEY were the ones who decided to split the embryo, not me ;) Having twins is wayyy different than with Norah. I'm only one person, and there are two of them! Kyle usually comes for their 5 and 6 o'clock feeds and holds Mary while I nurse Vivian. Welcome to the world of twins I guess!

They are still on oxygen, but Mary is down to a flow of 1 liter per minutes, which is basically the lowest they go, and Vivian's flow is 1.5 liters per minute. Mary is on 24% and Vivian is on 23%. I predict they will have the exact same settings in a couple of days ;) I'm hoping for just another week or so on the oxygen. Fingers crossed!!

They are still in the isolettes, but I am anticipating that they will move them to open cribs soon.

Mary now weights 3 pounds 14 ounces; she apparently lost weight yesterday, but I don't really believe it. I think the scale was off or something. She just can't seem to get over that 4 pound mark! Vivian weighs 4 pounds 6 ounces. So big! Mary takes 33ml per feeding, and Vivian takes 36 ml.

Norah is spending the week with Grammy and Gramps up in Cedar Falls. On the way up she asked Grammy if she had a bathroom, a kitchen, a TV and a tablet. I guess we know what her priorities are :)

Mary is in the yellow hat, and the other pics are Vivian.

May 16

The girls are doing great! They passed their second eye exam today to check for retinopathy of prematurity (ROP) with flying colors. The doctor said they will need their eyes checked only one or two more times and then they will be home free til they are 1. Their eyes are progressing and growing normally! That is a huge blessing as ROP is pretty common with preemies.

They are doing very well with their current oxygen requirements and seem to have stabilized out a little more on the vapotherm. Mary is currently on 24% and Vivian is on 27% and their oxygen levels stay very consistent instead of having to be adjusted up and down all the time.

They are nursing VERY well! I mean...they don't really have a choice...like my friend Rachel said, their mom is kind of a breastfeeding nazi so they better learn how ;) But seriously, for their age they are doing awesome. Yesterday Mary nursed and took her full feed of an ounce! It happened kind of by accident, I hadn't pumped in awhile before I nursed her so there was a lot of milk! The nurse was very impressed and said that most babies of her age would take a few swallows and then turn blue because their suck/swallow/breathe reflex isn't fully developed. But Mary caught on really quickly and learned how to pace herself. She would swallow and then stop and breathe for awhile and then swallow more. We weighed her before and after and according to the scale she had drank an ounce, and her tummy was all full and round and she was content! We were pretty shocked. Vivian did well too, and according to the scale drank 8 ml, so she got some more milk via her feeding tube after she nursed. She definitely likes to take her time, while Mary is a get it and go type of gal.

If they keep up the way they have been we could be out of here in 2-3 weeks! Although I try not to get my hopes up.

Norah is going to spend next week with my parents in Cedar Falls and then the next week with Kyles parents in Ottumwa so I can focus on nursing the girls. I think that will be good for all of us!

Thanks for your continued thoughts and prayers, we will get these girls home soon ;)

In the pics Mary is in green and Vivian is in pink! And that's me holding Mary!

May 14

The girls are doing wonderfully. They are still off CPAP and are doing very well on the nasal cannula. They are on a flow of 2 liters per minute, and their oxygen percentages are anywhere from 24-30%. They have not had an increase of bradycardias or apneas since the nasal cannula was started, and that is very good! 

Their feedings continue to be increased, and they are tolerating that well with some very gross diapers :) Mary is now getting 29ml every 3 hours, and Vivian is getting 31 ml every 3 hours. They get their feeds over 60 minutes still, but will probably be getting that time decreased in the near future. Vivian hit the 4 pound mark Monday! Mary was 3 pounds 10 oz Monday. I don't have current weights as I haven't been up to the hospital yet today, but I'm sure they are at least a couple ounces above that. I swear they look bigger every time I see them. Vivian is getting quite the little chubby cheeks :)

 They are 33 weeks and 4 days! Such big girls. They are also getting weaned off of their caffeine which helped them remember to breathe when they were first born. The levels of it in their blood are on the low side now, and they will continue to taper the dose until they are off of it completely. They may have a few more apneas and bradys while getting used to being off of the caffeine.

 In other big news, I was able to practice breastfeeding the girls on mothers day for the first time!!! They are big enough and on a small amount of oxygen to start acclimating to nursing. I pumped beforehand so they weren't able to get any milk, but practice latching and getting used to it. They both did very well! Mary latched right on and surprised the lactation consultant. Vivian took a little while to get used to it, but did good too. It was the best mothers day present ever! I still can't believe that we have made it this far, and are on the way home. We practiced again yesterday, and Mary was pretty sleepy, but Vivian latched right on, and got mad because there wasn't any milk;) She reminded me of Norah nursing as a newborn. I don't think we will have too many problems when we can start them nursing for nutrition hopefully next week! The key is to just be patient with them, because they are so little. Everything will take them a little more time to learn, and that is fine. I'm just thankful that they both showed such a strong interest in nursing. They keep them dressed in little onesies all the time now, and it makes them look so much bigger and older! They look pretty darn cute. The next step will be transitioning them to regular cribs.

 They still do like to try and give me a heart attack every now and again. Yesterday I was holding Vivian, and she had practiced nursing for about 30 minutes and then just laid on my chest with her eyes wide open and now moving a muscle. It was so adorable. I'm not exactly used to calm newborns after Norah;) She eventually fell asleep, but then had a pretty severe brady. Normally she will bring herself right back out of it, but she didn't this time. Her heart rate went down to the 50's (REALLY low for them) and the nurse had to almost pick her up to get her to wake up and take a breath. I was rubbing her back and that usually works but it didn't this time. It scared me half to death because I could feel her not breathing on my chest and it seemed like forever before she started taking breaths! The nurse said it was probably because she tired herself out and was awake for so long, and she is also getting used to being weaned off the caffeine. Thankfully she hasn't had any more since yesterday afternoon so hopefully it was a one time thing. Normally I don't get very worried at all because I know its normal, but this one was pretty crazy.

 It continues to be difficult to split my time, but I am feeling a little more confident lately that this will end someday and that makes it easier. The nurses are really good about consistently telling me that I need to take care of myself too, and to not feel guilty if I can't spend the whole day up there, or if I need to leave to spend more time with Norah. Its also easier not having to worry about the girls quite as much because they seem to be stable right now. I'm just praying for no infections and good eaters!

Norah is loving being able to play outside again, and turns into a sweaty little mess after about 20 minutes ;) She seems like such a little kid, and not a baby anymore, especially compared to the twins. She is a typical 2 year old, and her demands are exhausting!! I'm starting to see the magnitude of what I will be taking on when we get the girls home;) It will be worth it though to all be together. She got to hold Vivian on Friday night, and did so well. She had made up her mind before she got there that she would hold her, and I told her she had to ask the nurse first when she came back. 5 minutes later the nurse still wasn't there, and Norah was getting a little mad. I told her to go find the nurse and ask if she could hold Vivian, not thinking that she actually would! She opened the door, walked down the hall and said to a random nurse sitting in the hall: "Nurse, I want to hold Viv-win." I was following her and was shocked she had asked because she normally is so shy. The nurse laughed and went and go our nurse and Norah was able to hold her. She sang rock-a-bye baby to her :)We did take a video and I'll see if I can get Kyle to post it later since the one of her and Mary was such a hit.

Some sister lovin!

Sleeping angel Mary

Daddy holding Vivian, she had a huge poop while he was holding her haha

So tired!

Just had to add this picture of Norah who insisted upon wearing this winter coat in 70 degree weather. I love 2 year olds!

Chubby Vivian

May 9

Vivian and her cute little face you can actually see now!

The girls are off CPAP!!  Yay!!!  This is such a huge step. They came off of it yesterday and are now just on nasal cannula, which is just regular oxygen, no pressure. They are doing awesome with it and don't even seem to notice that the CPAP is gone. The nasal cannula tubing is a lot smaller than the CPAP, so we can actually see their faces;)

Last night I held Vivian wrapped up in a blanket like a normal newborn, and it was so wonderful. That may seem like a small thing, but I got to see her face and talk to her and I've never gotten to do that before. She was awake the whole time I held her, almost a hour, just sucking away on her pacifier! Julie, one of our nurses said she is going to see if we can start to practice breastfeeding since the girls are showing so many signs that they are ready for it. Julie will also dip their pacifiers in breastmilk sometimes before giving them to the girls during their feedings and they love it!

Mary is on 27 ml of breastmilk per feed and Vivian is on 29 ml now. Almost a whole ounce! They are growing and changing like crazy. They also decreased the time that they get their feeds over from 90 minutes to 60 minutes to start to get them ready to take oral feeds. Its kind of surreal that we are already at this point, I never thought it would come!

Last night Mary definitely showed her little personality...we turned her on her stomach after her diaper change and she screamed bloody murder! Nothing we did would calm her down. Normally they love laying on their tummies! So we flipped her back over on her back and she instantly stopped crying and just started looking around. I was like oh my gosh are you kidding!!  hahah. She definitely has her preferences ;) Its good that they like their backs though, because they are needing some head shaping done. Their heads are long and narrow from always laying on one side or the other when they were tiny, so they need to lay on their backs to round their heads out. Also, once they move to just regular cribs they have to always be on their backs, so they have to be able to tolerate lying on their backs before the move.

Also, Norah go to hold Mary last night for the first time. She did SO good. She is a natural I think! I think she would have held her all night if we would have let her. When it was time to put her back she cried a little bit, but then stopped and asked the nurse if she could hold Viv-win haha. Norah talked to Mary, and touched her head and her hands and was just so gentle with her. She also said to her "I love you," completely on her own and unprompted by us. It totally melted my heart! She had to wear her princess dress and shoes that Grammy got her to the hospital to show her "sissers." All of the nurses loved it and she got a ton of attention which she did not mind;)

We also want to say happy birthday to Brampa! Hope you have a great day Larry Chaplin!

Proud big sister

She's a natural!

Mary without her tubes!

May 7

We are having a great week so far! The girls are both on a regular CPAP of 5 now, which is pretty much the lowest that they will go before being completely off of the CPAP. It seems like the girls were happier with the pace of this weaning off of the CPAP as opposed to the previous time, because they have done awesome with it. They really haven't had to go up much in their oxygen, and they haven't had an increase in bradys either. They are both at 23-27% oxygen which is GREAT!

Both continue to have increased periods of quiet alertness and just lay there and look around. Its really cute! They are definitely more laid back than Norah ever was, but we will see how they are by the time they get to 40 weeks ;) They say that preemies are pretty chill until they get to 40 weeks, and then they show their true colors!

We got to give them both tub baths Saturday which was really fun! They were not  super impressed with it, but warmed up to it eventually. The expressions on their faces were priceless...so skeptical and a little mad haha.

They are doing great with their feeds and gaining weight like crazy. Vivian is 3 pounds 7 ounces now and Mary is 3 pounds 4 ounces. I swear every day they look bigger!

I am hoping for a smooth rest of our time here, and girls who are good eaters!

The pictures are from their baths Saturday and some from today when they got to wear real clothes for the first time!! Mary is in pink and Vivian is in brown.

Viv

Mary

Vivian

Mary

May 4

The girls continue to have a great week. I think they finally decided they want to live ;) They are both now just on regular CPAP again. The doctor discontinued the cycled CPAP that gives them a set amount of breaths this morning and they are doing great with it. They are both on a little bit more oxygen which is normal with these changes, and also since they are now 32 weeks, their target oxygenation levels are higher. The goal is for their blood oxygen level to be 90-94% instead of 86-92%. So they will probably be needing a little extra oxygen for a little while in order to reach those levels. The doctors are very pleased with their progress, and told us today in rounds that they will probably be off CPAP altogether soon. They will then be on oxygen via nasal cannula, which is called vapotherm here, and is high flow and humidified. Then the next step after that is just room air! The doctor today said that we will be hearing less and less about the girls in rounds, which is a very good thing and means they are just feeders and growers. Also today both of their repeat newborn screens came back normal which is also great news!

Mary now weighs 3 pounds even, and Vivian is 3 pounds 5 ounces! I held them together again today and they did really well. Although it was pretty difficult when they both wanted their pacifiers at the same time and I only have two hands! I can only imagine how it will be nursing them at the same time haha. They have both started to wiggle a lot when I hold them and try and slide down my chest, so I know they are smelling the breastmilk. It is crazy how strong their instincts are to nurse even at their young age. They love their pacifiers, and the nurses seem to think it will be a smooth transition to breast when we can try in a couple weeks. I'm hoping that they take to it really well so we can get them home. That will be the final step to getting them home, making sure they can eat and gain weight.

I am trying to figure out how to not go insane during all this. Some days I really can't believe that all this is happening, and our normal life now includes two babies in the NICU with no discharge date in sight. Its a very difficult place to be, and so easy to drive yourself crazy just sitting here staring at monitors all day. I struggle to find the balance in spending time here but not feeling guilty when I leave because I really do need a break. Its just not feasible to put your entire life on hold for 8-12 weeks, although that's exactly how I feel...like my entire life is on hold until the girls come home. Kyle is still working, and will continue to until they come home and then hopefully can take a couple of weeks off so we can figure everything out at home. Everyone says that soon this will all be a distant memory, but the days are very long :(

All in all they are doing wonderful though, so we really can't complain too much ;)

I don't have any recent pics of the twins, but I will include a few of Norah from a couple days ago.

May 2

We have had an awesome past three days. The girls seem to have turned some kind of corner and are doing so well. They both seem very relaxed, and have periods of being really alert throughout the day. They are both still on cycled CPAP, but are on the very lowest settings. Its funny that they are on the very same settings and are being weaned at the same pace :) They have had very minimal bradys in the past 48 hours, and usually are able to bring themselves back up with no stimulation. This is a huge step!

Yesterday they were both on 23-25% oxygen. Today they turned their CPAP rate down to 15 and they have needed a little bit more oxygen as they adjust to that. But both look awesome and are growing a ton!

Mary especially seems more relaxed. Her heart rate since birth has been in the 170's-180's, but the past few days she has been in the 150's-160's like Vivian's, and I think its because she has grown more lung tissue and doesn't have to struggle so hard to breathe.

I was able to hold them both at them same time last evening which was so amazing! It had been 26 days since the three of us had been able to be together :) They seemed to LOVE it. At first they both had their eyes open and were looking at each other. It was precious. All of the pictures posted are of last night, and Vivian is on the left and Mary is on the right.

Then Norah and Kyle came up to see them too, and the girls got a bit overstimulated ;) It is amazing how they are able to communicate what they are ready for and what they aren't ready for even though they can't talk. About 7 minutes after Norah go there and started talking they both had bradys and needed to be stimulated, and their oxygenation went down as well. A little bit of Norah goes a long way, as we all know ;) She was SO excited though and kept touching their hair and saying "these are my babies," and "I'm petting them like Java." Hahaha. We took a bunch of pictures and a video so that was fun.

Then it was time for Norah to go, and as soon as she left and we turned the lights off again they settled right back in and I held them for another hour and a half. They are just too little for much Norah time yet!

It is very encouraging to see them like this, but if I have learned anything so far from being in the NICU its don't have too high of expectations. The girls will do what they do on their own time and there is nothing that I can do about that! All the nurses joke about how the babies are completely in charge of what happens, not the doctors or anybody else. I'm hoping though that they will just continue to grow stronger from this point on and will just need to learn how to eat and gain weight. Speaking of weight, Vivian is now 3 pounds 3 ounces! Such a big girl! And Mary is 2 pound 15 ounces, but it was about a 4 ounce increase in one day, so they are thinking maybe she just had to poop or something when they weighed her ;) We will see how much she weighs tonight and if it was a fluke or not. But still, they are gaining and that is great!

I spent the day with Norah yesterday, and we had such a good time together. Just like the old days! Poor little baby, she said to me that morning "mommy, I'm so glad you're here!" And the night before when I came home she said, "mommy, I love you so much ever." Obviously she was needing some one on one time with me. We cleaned the house together, and ran a bunch of errands and did some shopping. Then in the afternoon we watched a movie and ate cookies and drank coffee together. Yes, she did have some sips. I don't understand how she even likes the taste of it but she seems to love it! Possibly I drank too much while breastfeeding??  Oops ;)

So all in all its been a great week and they will be 32 weeks tomorrow and a whole month old! The time has gone both fast and slow, but I feel like 32 weeks is a big milestone. Hopefully soonish we can start practicing breastfeeding and learning how to eat by mouth. One step closer to going home!