One step forward and a few steps back

30 days old
Wow we hit the one month old mark! We can hardly believe its been a month since our precious little girls arrived. They are changing so much and looking more and more like each other and also more like their Dad! We are so blessed to have these two miracles in our life!!

However, as expected with preemies they are on a constant roller coaster. Reagan started having higher heart rates (unusual for her) and she needed more O2 on Sunday. This continued through Monday and today, she's needed between 80-100% O2. This is definitely a step back considering she was around 20-30% just last week. Her Neonatologist figures that she could have an infection, possibly pneumonia or maybe pulmonary hypertension- definitely a mystery. She was started on antibiotics and we will monitor her closely for the next week. She is definitely growing still, but she's a sick baby right now.

Eden is about the same as last week, needing between 40-50% O2, but doing pretty well overall. It's kind of strange, but it seems that when one drops her sats the other does too (needs more 02 and increase in HR), its like they're talking to each other and figuring out how then can conspire to make Mom and Dad worry. I think this behavior will continue well into their teens.

We have had a stressful two days and watching the monitors has been extremely nerve-racking. We've had one call in the middle of the night and lots of tears shed. Its so painful to think that we're taking steps back when things were moving in the right direction. Our hearts are aching wanting these little girls to get off the ventilators and get closer to coming home with us. Please pray that we have patience and peace. We need extra prayers this week for Reagan to get better. And definitely prayers that God will do miracles and they can get off the ventilators very soon. Thank you so much.

Reagan and her new clothes!

One of Reagan's RN's put her in preemie clothes this week! She seems comfortable in them and I think she was trying to show off a little in this picture.

Kangaroo Care

27 days old
Yesterday was another big day, I was able to hold Eden (this skin-to-skin contact is called Kangaroo Care)! She is so "itsy-bitsy" as her RN calls her so it was a short 15 minute visit and Scott was not able to hold her. I feel badly that he wasn't able to, so hopefully this will become more regular and he can hold her soon. We had to keep her warmer than Reagan because she still is so little and has trouble regulating her temperature, so you'll notice her hat and quilt both made by my Grandma! They kept her cozy and warm on my chest. What a wonderful feeling to hold our tiny miracle in my arms. We are looking forward to the day when we can hold both of them together!!

Both babies are doing quite well and their Neonatologist think their progress is going quite smoothly.

Reagan is 2 lbs, 13 oz and is taking 8 mL/hr of breast milk, she's on about 35% O2. She loves to be swaddled, but once she starts wiggling she loves to bust out of her swaddle. She also apparently loves Dr. Seuss books, Scott read her two books today and she kept her eyes open for most of story time!!
Eden is 1 lb, 7 oz and is taking 2.9 mL/hr of breast milk, she's on about 40-50% O2. Eden is doing a little bit better with stimulus, but she's quite the drama queen. If her diaper is even a tiny bit wet she cries for it to be changed immediately. I think we will have our hands full with this little one.

These two are the loves of our lives and we are so excited to bring them home and start our family! God is helping us through each and every day and we are so thankful to have Him in our lives.

We came for the rootbeer floats, but we got something so much better!!

23 days old
It was a bonus to go to the NICU at 1:30pm today because there was a root beer float social. We were pretty excited about this until we met Reagan's primary RN Lynn in the hallway. She said that the plan for today is that we were going to hold Reagan while she switched out her isolettes!! The surprise on our faces was huge and we were way more excited than the root beer float excitement!! For one precious hour we held our little muffin and it was amazing. We asked Lynn to give us a time limit because we wouldn't put her back if she didn't set a limit. We took turns holding her and that was also hard, I told Scott that I didn't want to give her up. He had the best and early birthday present today- to hold one of his little girls.

Her response was fantastic, her heart rate was low and O2 levels stable. She was so warm and comfortable in our arms and against our chests. I'm sure my beating heart was a familiar reminder to her and she seemed to enjoy it.

We are praying everyday that our little Eden grows quickly so that we can hold her too.

3 weeks old today!

21 days old
The girls are making progress and we are so thankful for this. Both are off the Jet ventilators and on conventional ventilators.
Reagan is tolerating her ventilator very well and her O2 needs are going down, at some periods throughout the day she's down to only 25% O2. Her feedings are at a whopping 8 mL/hr or over 3 oz per day! She is currently 2 lbs, 12 oz and 16 inches. She is also on a nutrient supplement similar to a high dose vitamin in liquid form of course. She no longer has her PICC line (iv in her arm). She is a wiggly little girl and loves to have her hands in or by her mouth and she loves to be wrapped tightly in her blankets. So we realize now that she'll need lots of swaddling and probably a favorite blankie to hold.

Eden is still not getting breast milk as we wait for her infection to completely clear up. Hopefully she will start again sometime this week. Her O2 needs fluctuate pretty dramatically, when she's not sedated she gets mad and breathes over the ventilator which causes her 02 needs to increase. When she's sedated, she does very well and is often at room air settings! Now if we could just figure out how to get her to calm down and let the ventilator do its work so that her lungs can get better.... her Neonatologist, RN and Respiratory Therapist are all working to figure this mystery out. She is 1 lb, 8 1/2 oz and 12 inches. Eden opens her eyes much more than her sister and she is catching up with hair growth! It used to be like peach fuzz, but now she's starting to get the mullet look like her sister!

Thank you so much for the prayers, God is working miracles in these little girls and we still have a ways to go.

My Baby Shower and a VERY surprise birthday party

My baby shower was always scheduled for Aug 21st, first we had it booked at Abbott and of course suddenly it changed to being at our house. My sisters, Mom, and friend Heather hosted with help from a few others. It was a wonderful day, everything simply exceeded my expectations. We are so blessed to have so many kind family and friends and even very generous individuals who we don't even know from my sister Lacey's workplace. All of the gifts are wonderful and we are even more excited to use everything with our little girls.

My sisters organized games which they know I'm not a big fan of, so when they turned out to actually be fun I was thrilled. The food was wonderful and showing off the nursery that Scott created was a proud moment for me. Everything was going great until Scott decided to pull me from my shower to go see the babies. We were planning to see the babies but as part of Scott's scheme he said we had to leave sooner than I wanted. I was livid and gave Scott a "talking to" which was similar to the one he gave me 2 years ago as I was crafting his surprise 30th birthday party.

After a wonderful visit with the babies we went home and to my surprise there was another group of party-goers at my house, only this time the decorations were MN Twins with a full stadium style meal! The surprise was so unexpected and wonderful. Scott did a great job of surprising me and absolutely making my day.

A HUGE THANK YOU to Lacey, Emily, Mom, Heather, Tammy and Scott for planning two amazing parties!! I love all of you! And Scott I LOVE YOU so much for making this weekend so special and wonderful and a day I will never forget.

Turning 30

I have not looked forward to this day, but last night made up for it. I have an amazing husband!!!! He had me convinced that he didn't really have anything planned for my birthday, which was OK. Really all I want for my birthday is two healthy baby girls. Since he couldn't do that he gave me something so great I will never forget it. Dinner out at the Melting Pot- which was so yummy, especially the chocolate/peanut butter fondue with rice crispie bars, brownies, pound cake, strawberries, marshmallows and cheesecake! And a very big surprise- tickets to the Twins game!! Most of you know that Scott and I are big fans and we were both pretty disappointed that we probably would not make it to the new Target Field this year because of the complications with my pregnancy. He apparently had to move mountains to get tickets to this hot game (vs White Sox), but he did great. We were directly behind home plate in the lower level!!

Even better than the game was the message that showed up on the jumbotran. Scott has some connections at the Twins and he planned to have a personalized message for me. He was so nervous waiting for the message, but it finally came at the bottom of the 4th inning. It read- Happy 30th Birthday Mommy! Love, Reagan and Eden!!! I get tears in my eyes just typing it! I absolutely LOVE this message. When I read it I looked at Scott and said- that's me! I'm Mommy!! I love our little girls more than life itself and cannot wait to cuddle them both. Scott is already a great Dad to know that this is what I would want to see and what would give me comfort and joy. We are both so excited to take our girls to their first Twins game and many more to follow.

We broke a lot of traffic laws yesterday...

18 days old
When the hospital called at 8:30am to tell us that Eden's heart rate had dropped and we should come as soon as possible. We were terrified and prayed the entire way. I barely breathed and Scott drove- fast. Eden had an episode where her heart rate dropped so low that she had to have chest compressions, the whole thing lasted only 5minutes and was over before we arrived. Yesterday was spent trying to figure this out- her echocardiogram came back fine (no fluid surrounding her heart), her head ultrasound was unchanged from the previous, her O2 levels, though high were fine, her Neonatologist could find no infection but all other factors lead to that. So she is being treated aggressively for infection. Her feedings are being held for at least 10 days, which is so devastating to us because she was doing well with feedings and actually gaining weight. She is considered unstable at this time and we are asking God to protect her during every second of the day. We have never heard this kind of news before and it scared us and made us remember how precious life is- especially when you're only 1 lb. We know that God loves our little girls and wants them to grow big and strong and to come home with us, and we are holding on to this faith.

On a good note- Reagan was switched from the Jet ventilator to the conventional ventilator. This is the first step towards getting off the ventilators and we are very pleased with this. When she relaxes she tolerates it very well. She is also gaining weight and doing great with her feedings.

Thank you so much for all the prayers, please continue as they help tremendously.
One more thing- we are limiting visits to family only. Our babies are needing quiet and little stimulation so we are being very particular about who is with them. There will be time in the future when they are more stable that we will allow friends, etc. Thank you for understanding.

We have feisty babies

16 days old
Our babies are stable but still sick little girls. The sick part in the sense that their lungs are still not mature and they continue to need much assistance from the ventilators. Feisty babies are wonderful but their feistiness also causes problems. They both attempt to breathe on their own and this works against the job of the ventilators. Reagan likes to pull on her ventilator tube and appears to be frustrated that its in her throat. Eden likes to pull on her feeding tube. All of this feistiness makes Mom and Dad nervous, we would hate to see or hear that either of them pulled out these important tubes.

Eden has had a tough couple of days with needing more oxygen and blood pressure medication. She also has an increase in an inflammatory marker in her system which could indicate an infection. She is on antibiotics and has stopped her feedings for today which is frustrating because she was doing so well with them. Hopefully she will be re-started on feedings tomorrow.

Their feedings have increased dramatically since Saturday and they both appear to really like breast milk!! Yeah, this makes us feel so good that we made the right decision. And it also makes me feel comforted to know that I am helping them in this way.

Scott and I need to remember to have patience during this process, our heart aches for them to get better quicker than what is happening but we have to realize that this is a process and it will take time. Please pray for us to be at peace and to find patience everyday and for our little girls to continue to get better. Thank you so much for all your prayers!!

Turtleman Triathlon

Scott did very well at Turtleman this weekend despite the major change in our lives, he still gave it his all and focused on racing for our little girls.

He came out of the water with an extra bucket of mud in his race suit- the water was especially murky and it got stirred up with every swimmer. He hit an unmarked pothole on the bike, but luckily didn't get a flat. And the run, of course never his favorite went well. I'm so proud of him for training and staying focused on racing. And I'm especially excited to cheer him on during the biggest race of his life- Ironman Madison, only a few weeks away!!

Lung maturity project

13 days old
Our Neonatologist calls what is happening with our babies a "lung maturity project", and this is a project that will take awhile. They responded fairly well to the first dose of steroids but not well enough to make significant improvements. So we will repeat the steroids but not for another 10 days. On a positive note, the babies have increased their NG tube feedings and both are responding well to feedings. They are pooping- which is something to get excited about! Eden is still having trouble with stimulus, so we limit our touching with her.

The waiting game and the inability to hold and cuddle them is very hard for Scott and I. We both had breakdowns today and need God's strength to get through this. Please continue to pray for our little girls to make quick progress.

Making progress

10 days old
The girls are making tiny steps towards progress. They both were started on steroids to help their lungs mature and besides one incident this afternoon, Eden's response has been "super" and Reagan's response has been pretty good. Our neonatologist fully expects that both girls will do well and make progress on this new Rx. Both have received feeding tubes and started feedings every 4 hours, every 2hours will start tomorrow and then a continuous drip on Saturday!
Both girls are off phototherapy and are responding well to stimulus.

Scott and I are holding up and may even try to "go out" this weekend. Scott has Turtleman Triathlon this weekend and I'm thrilled to be able to cheer him on. Although I won't be running back and forth to see him at each transition.

Please continue to pray for our little girls, God is definitely working miracles and we certainly need more.

Preemies have special needs

8 days old
Reagan and Eden are still considered stable, which is what we can expect right now. They both have very imature lungs so we are fighting this battle right now. Reagan's PDA appears to be closed but her lungs are still not mature, so next week we will likely start steroids. Eden is fighting her ventilator and doesn't respond well to stimulus (i.e. touching/moving by the RN's), her lungs are more imature than Reagan's but we have to wait for her to be better stabilized before we start new Rx's. As our Neonatologist said, this is a marathon and not a sprint and we will be working through these lung issues for quite awhile.

Both girls had head ultrasounds yesterday, and Eden's appears unchanged from last week which is good and Reagan's showed about the same as Eden with one enlarged ventricle. We will have repeat ultrasounds in a few weeks.

There's only one word for Mom and Dad- TIRED. The NICU is emotionally exhausting and we worry a lot. God is giving us peace to get through, but we still have breakdowns pretty frequently. OK, let me rephrase- I have breakdowns pretty frequently. Scott is staying strong for all of us, but he has tough days too. I am pumping every 3 hours and this is tough for my regular 8 hours of sleep. Breastmilk is the best option for these little girls, so I will do this as long as I need too. It's truly amazing how much life changes, Scott and I feel that nothing else matters but these beautiful babies- we would move the world for them if we had too.

Please continue to pray for us, we all need strength and peace right now. God answers prayers and your's help.

Our wonderful Perinatologist

Dr. Ney was the wonderful perinatologist who delivered our babies. She was very supportive and loving. We are grateful to have had such great care while I was in the hospital.

Our little miracles

6 days old
We especially need prayer this weekend. Our babies both have valves in their hearts that need to be closed (called Patent Ductus Ateriosus or PDA), this can be done with medication but Eden's heart may not be strong enough to close the valve. If it doesn't close, she will need surgery. We are fearful of this and pray that God will help these valves to close quickly with just the help of medication. Additionally, we need to watch both girls for brain bleeding. Eden has already had her head ultrasound and we are watching this closely, and Reagan will have her ultrasound on Monday.

The girls are usually quite wiggly and responsive. Reagan had her eyes closed tightly, but the RN encouraged me to talk to her and ask her to open her eyes. She was listening and finally opened her eyes for her Mom! Tonight she also had hiccups and Scott was helping her calm herself down by bringing her legs closer to her chest, Dad told her that she should calm down so that her whole body wouldn't shake with their hiccups. It was really cute to listen to him soothing her. We love our beautiful little girls and our hearts are filled with love every time we touch them. We are hoping they will stabilize soon so that we can hold them!!

Thank you so much for the prayers, thoughts, well-wishes, cards, flowers, and gifts. Everyone has been so wonderful and we love all of you.

It's a marathon not a sprint

Our babies have a long road ahead of them, but things are stable today. Both Reagan and Eden had to have different ventilators, but are tolerating them well and starting to breathe on their own Both babies are getting injections for lung maturity and are having nutrition via their umbilical cords.

I am recovering very well and have been up and around a lot. My BPs are stable and will likely go home on BP medications. I will be discharged on Friday and am looking forward to it, but also worried about leaving the babies here without us. It will be hard but I know that they're in great hands at Children's.

Our families have been here this week and its wonderful! Thank you all for your prayers, well wishes, cards, flowers and gifts!

Scott and I would prefer no visitors until I go home on Friday. After that point please call us to set up a time to see the babies in the NICU. We are more than happy to have visitors there, but they limit the number of people so we need respect their rules.

Our babies are here!!

Eden


Reagan
Our BEAUTIFUL little girls made their entrance into this world yesterday, Aug 2nd, 2010.

Reagan Avery, 2lbs 5 oz, 14 inches
Eden Bryn, 1lb .5 oz, 10.25 inches

After super high blood pressures on Sunday I had more lab work done to determine if my body was still functioning properly. Labs showed my kidneys and liver were not functioning as well and my Peri, Dr. Ney was worried about stroke or worse. Around 1:00pm yesterday she decided that my body couldn't take anymore and recommended the c-section. Scott was amazingly calm, but I began to worry about how little the girls would be and tried to ask her for just one more day. She said one day could be critical to me and to the babies. So by 4:00pm I was being prepped for c-section. Ironically enough 15 minutes before they wheeled me back I began to have severe back pain and contractions. I have not felt pain like this before and was shaking with pain and trying to breathe through it. They got me into the OR and immediately started the spinal. I really expected much worse and was surprised that it didn't hurt too bad. The contractions were by far much worse. The entire procedure was pretty quick. And our little girls arrived at 4:22 and 4:23pm. It also turned out that the back pain and contractions were because my placenta ruptured at that very moment. Dr. Ney said it was pretty obvious that my body was done being pregnant. Thank God I was just about to the OR when it happened! Recovery is going fairly well besides the BPs, they are still high and working to get them down. I will not go home until they're stable. I have some pain, but pain medication is given like water here and I take full advantage of it. Reagan and Eden are truly fighting. They have a long road ahead and we are praying for them all the time. They made it through the night, but generally these babies get sicker before they get better. We love them more than anything in the world and pray that they will thrive and grow big and strong.

We will let you everyone know when we can have visitors.

Thank you everyone for your continued prayers.

Please, please keep us in your prayers!!!!

Things can go downhill, fast

28 weeks
I woke up with a high BP this morning and soon spiked which made the nurses very concerned. I remained calm until the topic of delivery was brought up. All labs were good, but we couldn't get my BP to come down even with medication. Soon I was transferred upstairs to Labor and Delivery and my Peri was talking about c-section unless we got the BP's under control. Shortly after an oral medication (anti-hypertensive) my BP's leveled out. I was monitored constantly on 6th floor and came back to my home on Unit 54. I do have a new room though, #5475. Having high BPs is a scary thing, I certainly don't want that to happen again. We are now just praying for 24 hours at a time.

Babies have been great today, they were gymnasts all day. I have never felt this much movement! Its so wonderful to feel them and see that they're doing great despite their Mom's inability to be a good pregnant person.

Please pray that we can get through the next week at least, even longer would be better!