April 29

For today I decided to just post a bunch of pictures since I know that's what you all care about anyways;) The first 3 pictures are of Vivian and the next 4 of Mary, and the last pic is Vivian.

The girls are doing good, just going up and down in their respiratory support and oxygen requirements, which is frustrating but normal. Vivian is now back on cycled CPAP, and the girls now have the same CPAP settings which I think is fitting;)

They continue to tolerate their feeds well and are slowly getting them increased. Mary gets 23 ml every 3 hours and Vivian gets 25 ml.

Vivian hit the 3 pound mark Saturday! She is so big!!! Mary is still at 2 pounds 10 ounces and continues to gain a few grams every day.

Wide eyed Vivian

Cuddle time with Viv

All snug after bathtime!

Mary saying get out of my face!

Mary with two eyes open

Mary

Cuddle time with Mary

Another of Viv!

April 27

Well, its the weekend again. I have to say that I prefer the weekdays up here because we usually get the same nurses, and thing tend to go much better when they know the girls and how they like things. I never realized the difference a familiar nurse makes before this whole experience. It can honestly make or break your day. In some ways I am thankful for this experience because I think/hope it will make me a better nurse.

Anyways, Mary was able to be weaned down in her CPAP settings yesterday. She is on a lot less oxygen too (27-30%) which is great. She seemed to be doing very well yesterday with those changes. They did decrease the rate to 15 today, but she seemed to be having more bradys and apneas, so they turned it back up to 20. It is still down from the 30 she was on, so its fine! She is just taking her sweet time with all this;) She likes things her way haha. They are thinking the increased bradys and apneas may be from the feeding tube in her nose. Both girls' were switched from their mouths to their noses a few days ago, and that might be making a difference in their apneas and bradys. Alise, one of our primary nurses mentioned yesterday that the tubes may need to be switched back to their noses as well, so I think its probably the best decision to change them.

They took Mary's out about 15 minutes ago and so far she is doing really well with it. I can't tell you how stressful it gets sitting here and waiting for their monitors to go off. I want them to be ok so badly, and its hard just sitting here and essentially waiting for something to go wrong. I really hope this will do the trick, and they won't have to do any other tests to figure out why she has had so many more bradys and apneas. Again, these are normal for their age, but they don't like to see an increase in them.

Vivian is doing great and is on 27% oxygen through her CPAP. She does occasionally have an irregularity in her heart rate, which is fairly common for some preemies and even full term babies, and they usually go away on their own. They did do a 12 lead EKG on her yesterday and the pediatric cardiologist is in the process of reading the results. No one seems too worried so hopefully it will be nothing!

I left the hospital yesterday around 330 instead of my usual later time so that Kyle Norah and I could spend some time together. The difficult thing about that though is I end up feeling guilty that I'm not here, and I miss the girls. One of their primary nurses, Julie, was working last evening though so that gave me peace of mind that I could leave because I know she takes great care of them. I called a couple of times and they were doing fine. So last night we walked up to Snookies and go some ice cream for the first time this season! Norah ate her kids cone and then stole my cone from me haha. She loves ice cream! We spent this morning outside playing and riding bikes and I came to the hospital around 1 PM. Sometimes you just need a break from the beeping and the constant staring at the monitors waiting for them to alarm.

Its been very hard for me to split my time, and I often feel guilty for not being at the hospital 24/7. However, its just not realistic, and I would end up burnt out and not a good mom to any of the 3 girls. If they had been born at the planned 32 weeks and hopefully only had to spend 2-3 weeks here, I would probably have been her 24/7. But with them being so tiny and needing peace and quiet and low stimulation there really isn't a lot that I can do for them. I have been able to do more lately, like bathe them and hold them for longer periods, but what they really need is to sleep for optimal brain development.  They did turn 31 weeks yesterday, so in a couple weeks when I can start nursing them I will most likely be here as much as I possibly can.

Mary weighs 2 lbs 10 oz and Vivian weights 2 lbs 14 oz. Almost 3 pounds! That seems so huge to me haha.

So overall we are doing good, just waiting for them to get big so they can come home and play with Norah ;)

The first couple pictures are of Vivian from yesterday. Can't believe how big she looks! And the other couple pictures are of Norah and Kyle planting some lettuce this morning!

Birth Story

April 5 2013 is their birthday. The day they turned 28 weeks exactly. The plan was for me to be inpatient on the maternity floor for 6 weeks for monitoring until they were born via c section at 32 weeks. I was in the hospital for 11 days before they decided to make their appearance.

As some of you know, the twins are monochorionic-monoamniotic twins. This is the rarest pairing of twins, and accounts for 1% of identical twin pregnancies. What it means is that while I was pregnant they shared the same amniotic sac and the same placenta. This makes it a very high risk pregnancy because normally each twin would have their own amniotic sac and be able to keep their cords and bodies separate. So because they shared the same sac they had a very high risk for cord entanglement and cord compression. When we found out they were twins at 20 weeks and on top of that mono-mono twins it was a very scary time to say the least. It was a blessing that we had made it to 20 weeks as most mono-mono twins are lost before that time.

So up until 24 weeks (which is the age of viability) we had an ultrasound every other week. Then at 24 weeks we had ultrasounds twice a week and then I went inpatient at the hospital at 26 weeks 3 days gestation. The plan was to stay there and have ultrasounds twice a week as well as being hooked up to the monitors to monitor the babies heart rates 3 times a day for 2 hours at a time.

Before I went into the hospital was a very scary time for me, not knowing from one minute to the next if the girls were still alive or not. A cord accident could happen at any time and that could be it. Being in the hospital gave me more peace of mind because I was monitored so frequently, but it was still scary especially at night when there were 8 hours when I wasn't being monitored. It wasn't easy being away from Norah and Kyle, but I knew that I was in the place I needed to be for the twins.

The night and day before they came they looked awesome during their monitoring. So far Twin A (Mary) had only had a couple small decelerations in heart rate but had recovered just fine, and that had been a week ago. The following day, Friday April 5, I had an ultrasound with growth scan scheduled in the morning, and so I had asked  to have my morning monitoring at 6 AM instead of 8 AM, so that I wouldn't have to be laying in bed all morning, especially since I had a bunch of visitors coming that day.

Luckily, my favorite nurse Audrey was working that night. She had been working when Mary had those couple of decels the week before and I had been very impressed by her response to it and her knowledge of my specific situation and how risky this pregnancy was. Not all of the nurses seemed to even know what mono-mono twins were, and seemed confused about why I was even there, but she did.

I remember feeling like they weren't moving quite as much when I woke up around 4 AM, and almost called Audrey in to check, but figured they would be monitored early anyways and decided to fall back asleep. So Audrey woke me up for my monitoring at  6 AM and hooked me up and they were both fine and she found them right away. I decided to fall back asleep, but Audrey came in at 645 and said that Baby  A was having some variables (lots of increases and decreases in her heart rate, more than is expected normally), and had me turn to my left side. I did, figuring it was no big deal, since the same thing had happened a week ago. She called the doctor on call, Dr. Osborn, and he said to go ahead and give me some IV fluids and see what happened.

Literally 5 minutes after that, as Audrey was putting in the IV and getting the fluids set up, Baby A started having major declerations, with her heart rate going down to 60 beats per minute for 5 minutes at a time which is an emergent situation. Audrey then pushed the emergency button, and all of a sudden there were 5 nurses in the room. They told me that they were taking me down for a c section right then. I was in a state of shock and kept asking all of them, "Are you sure? It has to be today?" Up to that point I had had no worries that we wouldn't make it to 32 weeks. I knew it was a definite possibility but really didn't think it would happen to me. I was prepared for 32 week old babies in my mind, but not for 28 week old babies. Audrey called Dr. Osborn back and he said that he had already seen the strip and was on his way over and would meet us in the OR in 10 minutes.

Then they were wheeling me down the hall. I had called Kyle when we first saw the variables as he was planning on coming in that morning for the ultrasound anyways, and the nurses called him again and told him to get here right away. He told me later he made it to the hospital in 6 minutes which is impressive for a trip that usually takes 10-15 minutes ;)

They transferred me to the operating room table, and all of a sudden there were a ton of people in there. The babies had both recovered and their heart rates were back up to the 150's but they were still not stable. The anesthesiologist came in and started asking me all the questions about anesthesia, etc. They considered putting a spinal epidural in so that I could be awake for the c section, but didn't want me to sit up in case that would compress the cords more. Stephanie, one of the other night nurses, stood by me and held my hand and said that everything would be ok. I had started to cry at that point as the reality of what was happening started to set in. It was one of the scariest moments of my life, not knowing if the babies would be ok, and knowing that I would not be awake for any of it. Then Dr. Osborn came in and said "well, we're going to get them out today!" And that is the last thing I remember before they gave me the anesthesia, and then I woke up in an incredible amount of pain.

I was back in my room and it was all over and the nurse was pressing on my stomach to get my uterus to contract and I was crying it hurt so bad. There were a few nurses in there and Audrey was there and showed me pictures of the babies from Kyles phone. They were both doing very well, and were being stabilized in the OR by the NICU teams before being taken up to the NICU. She also showed me a picture of the cords, which were incredibly tangled and knotted. Audrey also told me (which I didn't remember until she reminded me when she visited Sunday) that Dr. Osborn had made the incision, broke my sac of waters and pulled both girls out at the same time because he couldn't tell which cord was which. Besides the 4 true knots and multiple twisting of the cords, they were wrapped around both of the girls' necks and bodies. Other nurses who were in there told me later that they had never seen cords as tangled and knotted as those. So all three things happened in one minute, 7:12.  Its nice, because they are exactly the same age, and so that is one less thing for them to fight about later ;) I am so thankful that Dr. Osborn made the right decision and got them out so quickly. All of the staff there was so amazing, and I credit them with saving the girls lives.

I spent the rest of the day recovering from the c section and trying to get out of bed so I could go see the girls! It was hard to get my pain under control at first, and of course I was an idiot and tried to decrease the amount of pain meds I was taking too early because they made me so tired. I soon realized I needed all the pain meds I could get ;)

I finally got to go see the girls at around 5 that evening...10 hours after they were born. I don't actually remember it all that clearly, I felt like I was in such a fog. But I do remember looking at them and realizing that they had all their fingers and toes and looked pretty much perfect, just tiny! That whole day and night was surreal because I felt like I was still pregnant. It has been hard to process the whole experience. I feel like I wasn't ready to not be pregnant, and it was such a shock to have the emergency c section. I am so glad though that they are safe and healthy. They truly are miracles, and we are so thankful to God for them, and also to the amazing staff here at Methodist and Blank.

April 25

Its been a good week. The girls will be 31 weeks tomorrow which is hard to believe! Its amazing how much bigger they get every day.

Mary is doing better with her oxygen requirements. She is still on the cycled CPAP but is down to 30-33% from 40-45% oxygen. They did a chest xray yesterday and did find a little bit of fluid in her lungs so they are giving her lasix for 3 days to help get rid of some of that fluid and hopefully help her breathing. She did go down in her oxygen needs before the lasix though, so who knows. She is just being ornery I think!

Vivian is doing awesome with her breathing, and is currently on 27% oxygen on just regular CPAP.

They are doing well with their feeds and gaining a little bit of weight every day. They never have any leftovers in their tummies after their feeds and are pooping a lot so it means they are tolerating their food very well. A little too well sometimes..Vivian had her first blowout on me yesterday. It was shocking how much poop could be in one tiny human less than 3 pounds! The nurse ended up having to take over for me and we had to change all of Vivian's bedding. It was crazy! What goes in must come out I guess?? Haha.

We got to give them sponge baths on Tuesday night which was so fun! They were not huge fans of the whole process, but when we were done washing and rinsing we put a bunch of lotion on them and then put a warm blanket underneath and on top of them and they just completely relaxed. Their whole bodies stopped moving and they just laid there and looked around. It was so adorable!

Pic#1 is of Mary this morning looking around. She looks great today and is very alert. Pic #2 is Mary after her bath and #3 is Vivian after her bath.

Also their hair! I think its gonna be blonde! Actually sometimes it looks strawberry blonde, so who knows?? Its pretty crazy, I never expected to have two blonde girls after Norah because her hair is exactly my color. But it is pretty cute.

They continue to have periodic episodes of bradycardia (lowered heart rate), apnea (pauses in breathing) and oxygen desaturations (lowering of oxygen), but nothing out of the ordinary for babies their ages. I think over the course of this week they have had less too.

I get to hold each of them once a day, and between that and pumping time flies up here during the day. I guess thats just how it is when you have twins ;)

So overall they are good! Slowly we are starting to adjust our lives to this new normal, and I'm starting to think that maybe we can do this, and maybe someday they actually will come home. One thing (out of many, I'm sure!) that I have learned during this experience is to not take the little things for granted, like having all of your family living together in one place. I used to get so tired, and I will say a little bored some days being home with Norah, and I'm sure it won't be easy when I'm home with 3 kids under 3, but I hope I remember what these days were like and enjoy the present.

It brings tears to my eyes to think of how wonderful people have been to us and all of the things friends and family and even people we don't know very well have done for us. It means so much to know that we have all of you thinking and praying for the girls. Thank you.

April 22

Well, we had a pretty quiet weekend up here. Mary was extubated and taken off the ventilator on Saturday and has done pretty well with that. She is still on the cycled CPAP, so is getting more respiratory support than Vivian is. She seems more back to her usual self though, and is more alert and wiggly.

When I held her Saturday evening, they were able to go down 6% on the amount of oxygen that she was on. She loves being held ;) She is currently on 43% oxygen, and we are hoping to wean her down today.

Vivian is doing great and is usually at around 30% oxygen through her CPAP. When I held her yesterday we got her down to 22% for a little while which is awesome because room air( what you and I breathe normally) is 21%!

Slowly but surely they are getting bigger and growing. The days are long, and its hard to see only the small changes, but everyone assures me that they will eventually grow out of all this.

They have both gained weight too, and are each a few ounces above their birth weights which is a very good sign! They are both getting 21ml of breastmilk every three hours and doing well with it.

And, I have to say I think we are going to have two little blonde girls! Its hard to see their true hair color with the dim lighting that there is here but we turned on a bright light and took some pictures while I was holding Vivian and she definitely looks blonde! You will have to judge for yourself from the pictures. All three pics are of Vivian.

We have started to get some more consistency with the nurses that take care of the girls and that helps so much because they are able to pick up on their little signs quicker than a nurse who is not familiar with them might. We cannot say enough good things about the nurses up here. They are so good at what they do, and it is definitely their calling.

Norah spent the weekend with Grandma and Grandpa and had a great time of course. I did spend the morning with her Saturday because we were really missing each other:( We went to Target and Starbucks and then played outside and got out her big girl bike from her cousin Anella. She was pretty much in heaven! She is doing surprisingly well with all the transitions. Probably it will be more difficult for her when the girls come home and she is stuck with just me and two babies ;)

They will be 31 weeks this Friday which is hard to believe! I'm hoping we can get them home in time to enjoy the summer months.

April 19

The girls are 2 weeks old today! They are also 30 weeks corrected, which is a huge milestone for preemies. They both had head ultrasounds yesterday to recheck for brain bleeds which are common in 28 weekers and both were clear, no bleeds!

Wednesday just kept getting worse :( Poor little Mary had to be put back on the ventilator because of the increased difficulty she was having with her breathing. They did also screen for infection as that can cause the respiratory symptoms she was having, and thankfully everything came back negative. They are thinking that she just needed a little bit of a break from the hard hard work of breathing at her age. Almost right away after they put her back on the vent she was more relaxed and her color was much better. She also got a blood transfusion which will help her oxygenation status as well. They had to put an IV in her scalp which is so sad to see, but it doesn't seem to bother her much!

I was worried that Vivian would decide to do the same thing since they like to matching a lot of the time, but she was a rockstar yesterday and continues to be today.

Thursday morning they were both doing well. Mary had been able to have her oxygen weaned down and cut almost in half from the amount she was on before they put her back on the ventilator and that is a very good thing and the goal of putting her back on the ventilator.

She seems back to her old self today and is kicking and moving like she usually does. Wednesday she was very lethargic and I could tell she just wasn't herself. She has had the pressure and amount of breaths the vent gives her decreased this morning and will possibly have the vent removed and be put back on cpap today/tonight. She also had her PICC line removed which is a huge step! She is completely off TPN and lipids, and will now receive all medications through her feeding tube.

Vivian continues to do great, and they are working on weaning her oxygen down on the CPAP.

They do seem to be very connected, and most of the time if I or the nurse are paying attention to or working with one of them the other ones monitor will go off. Its almost like they sense that their sister is getting attention and they want some too! It makes complete sense because they were so so close in the womb, closer even than other identical twins and were always kicking and touching each other because they shared the same sac. I can't wait for the day when I can hold them at the same time! I think that will happen very soon...maybe even early next week.

We are doing pretty well, it has been difficult to manage splitting time between work (for Kyle) and spending time with the twins and with Norah. Thankfully we have great family and friends who help us out a lot. Kyles parents came up Wednesday when the girls had their bad day and are staying until next Friday to watch Norah. It is so nice and generous of them, and we are very thankful!

Looking back it is amazing how many changes we have gone through in the past 10 weeks. We found out we were having twins at 20 weeks and that they were mono-mono and very high risk. Six weeks after that I was in the hospital for monitoring, 2 weeks after that they were born via emergency c-section, and now 2 weeks later they are 2 weeks old in the NICU. Needless to say its been a lot to process! It just makes me realize that these two little girls truly are miracles, and are definitely meant to be here. I will write up their birth story soon and post it here.

Thank you all for your continued prayers and support :)

Here is a picture of Viv all cuddled in for kangaroo care. She had her head resting on both arms it was too cute! (Yes that's a tiny arm on the right, not a nipple.) Mary hasn't been up for pictures the past couple days but I will post some of her next time ;)

April 17

Today has been one of the harder days that we've had. Mary had to be put back on the cycled CPAP which gives her a set amount of breaths because she was having more trouble breathing. They have both had a lot of oxygen desaturations and heart rate drops today. Everyone assures me this is completely normal, but it is still not easy to watch. I think the hardest thing is the feeling of helplessness that I have. There is very little that I can do to help them and that is a very hard thing to go through. I know that they just need to get bigger, but the day to day is hard, and the time until they can come home seems so far away.

My favorite nurse so far explained to me that when they increase their feedings of breastmilk they frequently need more breathing support because their tummies are more full and so it pushes up on their lungs and they need more help breathing. It just seems to be a balancing act with everything. They did do a chest xray on Mary, and gave her some lasix, which helps to get rid of excess fluid and may help her breathing. This is also normal for preemies I am told. Poor little lady :(

Vivian is having a better day than Mary and had a period where she was very alert. She had her eyes open and was kicking around. They seem more and more like newborns every day.

And here is a picture of Vivian with her eyes wide open and sucking her fingers;)

April 16

The girls had another great day. I got to hold both of them for over a hour each, and they did awesome. They both just cuddled right in. It is amazing how much bigger and stronger they get every day. The nurse who took care of them today said she couldn't believe how much bigger they were since Thursday when she had last taken care of them.

They are doing great with their feedings and should be able to be off the TPN and lipids in the next couple of days. Yay! Their breathing gets stronger and less labored every day. The doctor today said he was very pleased with their progress and that a lot of 28 weekers have significant medical issues and that we are very blessed with our girls' health and progress. We are so thankful too and so thankful for all the prayers that are being prayed for our girls.

They are getting really cute and starting to look more like term babies. I can't wait to hold them together so that I can see how much alike they really look.

Mary continues to be the feisty one who likes to kick against her wires and move around a lot. She has a surprisingly loud cry when she gets mad too!

Vivian is a lot calmer and loves to just cuddle in and sleep. She has a very soft squeak when she is not happy with something its adorable.

The two pictures are of Mary. Its hard to get a lot of good pictures because they need a dim and quiet environment to grow so we don't like to turn on bright lights often. I'm sure we will make up for it when they get bigger;) The other picture is of Kyle holding Vivian for the first time!

April 15

The girls are having another good day. They continue to have their feedings increased daily or twice daily. They are both up to 10ml of breastmilk through their feeding tubes every 3 hours.

They are fed through tubes that go through their mouths into their stomachs. They will continue to be fed this way until they are old enough for their suck/swallow/breathe reflexes to be developed which is usually around 34 weeks gestation. Once they hit 32 or 33 weeks and are off of the CPAP they will be able to start to practice breast feeding.

They are currently receiving additional nutrition through their PICC lines called TPN and lipids. This is currently being decreased as their breastmilk feedings are increased, and eventually they will be off of it completely.

They are doing well with breathing, just having the normal decreases in heart rate and oxygenation and breathing rate that happen in preemies. It is nothing to be concerned about, they just need time for their lungs to mature, and that is happening every day!

Today Mary had the pressure on her CPAP increased to 8 instead of 7 because she was having a little bit more labored breathing. Vivian's CPAP pressure is still at a 7.

We get to hold each of them once a day for a couple of hours. It is quite the project getting them in and out of their isolettes with all the wires and tubes! As they lose those slowly we will be able to hold them more often and it will be easier.

I have had a scratchy throat the past couple days so just to be on the safe side I haven't held them the past couple of days which is sad :( But I will hopefully be feeling better tomorrow and will be able to hold them then.

I am excited for the first time we get to hold them at the same time. I am sure that they miss each other:( It isn't possible right now with everything that they are hooked up to, but in a couple weeks I think it could happen!

Our nurse today told me that we will be so surprised how much they change even in just the 4 days before they turn 30 weeks. She said that a lot happens with their lungs and their skin and they will seem a lot older and bigger.

Its definitely a very difficult thing having babies in the NICU. Its hard as a mom not being able to pick them up and comfort them when they are sad or fussy. I also have to balance recovering and healing from my c section with spending time with them and with Norah. Its not an easy thing! But I know that this really is just temporary, and soon they will be at home with us and we will not be getting any sleep at all!

Thanks for your continued support and prayers!