Tuesday, June 30, 2009

June's Nolan Says the Darndest Things!

  • I told Nolan he had to go potty one morning and he said, "Mom, I can't go potty everyday. I'll run out of pee!"
  • Nolan and I were going to see his Uncle Jack at the fire station. I asked Nolan what he wanted to be when he grew up, thinking I knew exactly what he would say. His answer, "A good big brother."
  • Brian was helping Nolan brush his teeth after his bath and Nolan lifted up his pajama shirt and said "I need to check to see if my nipples are still there. Yep they are still there!"
  • Pa Pa gave Nolan a t-shirt with a picture of an F-4 on it (a fighter jet Grandpa worked on when he was in the Missouri Air Guard). We told Nolan this is one of the planes Pa Pa fixed when it was broke. Nolan asked "How did Pa Pa get way up in the air, does he fly?"
  • I couldn't wait to see Nolan after having the babies, I missed him alot and just wanted to see how he was doing. He climbed into my lap on the bed at the hospital and the first question he asked me was, "now that the babies are out of your belly can you pull me in the green wagon?" (I had told him MONTHS ago that when the babies come out I can do this!)

Thursday, June 25, 2009

Together At Last

We don't have very much time to post too many pictures, but hopefully these will hold you all over and explain why have little to no time...Daniel has been discharged and is with us! We were told it could be mid-week, but didn't really believe it and then while Brian was visiting yesterday they said, "Are you ready to take him home?" Crazy! So here we are! Daniel still has a feeding tube, so we have to offer him a bottle at each feeding for 20-30 minutes. He usually takes between 5 and 15 ml. After 30 minutes, we give the rest of the milk into his tube. We are praying his strength will grow and his ability to suck will take off. We are praying also he puts on weight after his surgery (remember, he didn't have milk for over 5 days of his new little life, poor guy)! Joseph is doing great and eats ALL THE TIME. I call him my chunka chunka! Nolan never ate this much, so its really bizarre to me, but I don't mind at all! Nolan is very excited, maybe too excited and wants to be involved with everything. This afternoon he came running into the kitchen to gleefully tell me, "Mommy, Jofes peed on me! And he peed on Daddy, too! That's so funny!" Brian and I are a tired pair, but feel blessed beyond words and continue to be grateful for your thoughts, prayers, and love.

Re-united after 12 days: Our three boys! Joseph, Nolan and Daniel. Doesn't it look like Joseph and Daniel are waving?

Sunday, June 21, 2009

They'll find a way!

The twins are doing great, but unfortunately as of Saturday afternoon they are both at Children's hospital. That's right Joseph missed his brother so much he decided he wanted to be close to him. They are both on the same floor and about 4 doors down from each other.

After Joseph's 2 day check-up (2 days out of the hospital) his Bilirubin level (Jaundice) was 13.8 and his 4 day check up it was 16. This alone was not huge deal, but in addition he was very lethargic for an entire day and did not want to wake up to eat and would even sleep through diaper changes. We along with the Doc were very worried so he wanted us to go to the ER at Children's to get him checked out and also try to get his numbers back down. Full term babies are considered high anywhere between 12-18, but since he was born at 36 weeks it is even more of a concern.

They ran a lot of tests for infections and so far they have all came back negative. They started an IV with some antibiotics to be safe and flushed his system with fluids. His number is now 12 and so far we have not had to put him under the lights. We will have the remaining test results back on Monday (22 Jun) and if everything looks good, Joseph (and Sam who has stayed with him) will get to leave the hospital.

Daniel is almost completely off of oxygen. They removed his breathing machine on Friday and gave him a feeding tube so he can start getting breast milk. He has most of his tubes and wires off and they expect him to transfer out of the ICU on Monday. His Jaundice levels are also high and they have put him in the lighted blanket to bring them down. If he continues to improve, we are told he might be released within the next 7 days.

Thursday, June 18, 2009

Daniel's Status

Hi everyone! First of all, Brian and I both apologize for the lack of blog updates. It's been brought to my attention that because we left the last update somewhat open, we have some worried folks. We're so so sorry, and did not intend for that to happen. The same day of Daniel's surgery, we brought Joseph "home" to Grandma and Pa Pa's. As you can imagine, with a newborn, a 3 year old and visiting Daniel in between, we barely have time to eat...and lets not even get into time for showers. Ha! (kidding).

Anyway, Daniel is doing fantastic!!!! He stopped losing blood so quickly later in the day the same day as his surgery. He responded well to everything and this morning they were able to close his chest!! We thought it would be a couple more days, but he was doing so well they did it today. They kept him in his room (less stress than transporting to another floor), closed off his entire ward and sewed him up. It's so amazing they can do all this. Since we've left Tuesday I have yet to see him, but Brian's been up there and tells him how much I love him. I can't drive yet, so Brian and I both have to go to the hospital together, which means leaving Joseph and I think I'm going to gather the courage today or tomorrow. Either way I feel guilty being away from one of my babies, so its kind of a lose-lose. But we're praying we'll all be together very soon.

Joseph is doing great, too. We took him to his 2 day check up today and despite the fact that he seems to be feeding all the time, he's not gaining weight yet. We're going to start supplementing formula every feeding for awhile and also Brian and I have made the decision that I will solely pump for both babies. I will miss the bonding part of breast feeding alot and I'm very sad, but I know it's already very tough with just one baby, so we feel this will be a great way for them to get breast milk and still stay somewhat sane and know exactly how much nutrition they are both getting. And if we have to go to formula only, we'll do that, too, but I really wanted to breast feed for the first few months at least...just a personal goal. Other than that, Joseph sleeps, pees and poops alot. I always thought those parents who had to set their alarms at night to feed their baby were making that up, but if we don't, I'm pretty sure he'll sleep through the night. As tempting as that is, we have to wait until he's 11 pounds at least (and he'll probably be over this much sleeping by then). It's so funny how different he is from Nolan who believed sleeping at night at all as a newborn was a thing for the birds.

Very soon, I'll try to get some pictures up. We have some cute ones of Nolan holding Joseph, who is over the moon for his brother and keeps asking when Daniel is coming home. He is definitely a bit jealous, but so far is nothing but sweet to Joseph. Maybe not quiet, but sweet!

Thanks again for all your prayers. We continue to pray for Daniel's continued good health and speedy recovery, for Joseph's weight gain, and for peace and strength as we adjust to so many changes and things so out of our control. One thing that we've come to realize is just how blessed we are to have so many people who love our family and how blessed we are to have you all in our lives. It's humbling and we feel honored. I should add that all day Tuesday during his surgery, I felt like I should be a ball of nerves, but I was at complete and total peace. I know it was the peace that God layed upon me and we have no doubt it was your prayers that helped. I often felt so weak and tired while in the hospital, so I have not been able to pray like I usually do, but God gently reminded me that all of you were taking care of that for now. So thank you, each and every one of you. We love you all so much and our boys can't wait to meet you!!!

Tuesday, June 16, 2009

Update # 4: Surgery complete

We just met with the surgeon and everything went well. Daniel's vessels were re-routed and his heart is pumping better than expected. Unfortunately, he is loosing more blood than they would like so he is currently in limbo status. They will see how he is in a few hours and if the bleeding doesn't' slow down, they will have to do something about it. If it does slow, he will remain for 48 to72 hours before they close his chest back up. They do this because there's a lot of swelling and so little room. It is a little hard to imagine, but our little guy has a "seal" over his chest (like medical saran wrap).

Update # 3

The Doc's are currently running an Echo Cardio scan of Daniel's repair to determine if his heart is pumping correctly and if they are all happy with the fix. If they are, they will begin to ween him off the breathing machine. If they are not, they will correct the issue immediately. We will get the next update around noon. Thanks for all your prayers, keep them coming!

Update #2

Daniel is currently in surgery. We got the call surgery had begun right after I logged off last time. We are supposed to hear again in the next half hour to an hour how things are progressing. Joseph is cuddled up next to me sleeping away his morning feed. And just so you know, it's already a day of miracles. Around 4:30 am I realized my ring, my grandmother's ring actually, was missing. It only really fits when I am pregnant, and I guess my swelling is truly subsiding. We informed the nurses and were preparing to look through the trash bin, but I thought it would be gone forever...it's a tiny little ring. But it means so much. Anyway, my nurse found it...in Joseph's diaper he was wearing!!! See...it's a day for miracles!

Update #1

Brian and I went to see Daniel off into surgery. We kissed him and told him how much he was loved. They have taken him back for prep, which should take about an hour and the entire procedure is estimated at 5-6 hours. We'll get a phone call when he goes into surgery. We're praying for his protection, safety and comfort. We'll let you know more when we know more.

Monday, June 15, 2009

Quick Update

I really, really promise I tried to update sooner than this. But between going back and forth between the hospitals, feeding and pumping, this is as good as you get! Daniel's surgery was pushed back again. Instead of his surgery, a heart transplant surgery was needed to be done instead, so it's a very good reason! Things are in motion for Daniel's surgery to be done tomorrow morning at 7:30 AM. I know nothing is a guarantee, but it really seems like things are actually happening for sure this time. We spoke with the surgeon this morning and went over everything. It's been kind of a tough day preparing for all of this. Daniel's nurse told us that no matter how we may try to "prepare" that seeing him after surgery will be shocking and difficult. This morning we held him again, sang to him, and loved on him lots. Tonight the nurse actually let us give him a bath! Of course, it's a "sponge" type bath because of the umbilical cord and IV's, but it was wonderful. Brian and I each took a side and bathed his beautiful little body and then got to change a very poopy diaper! It was a very special moment. Then we got back to the room in time to feed Joseph.

I will try really hard to keep everyone updated via the blog tomorrow. His surgery is supposed to take about 5 hours and we are also supposed to be discharged. Thank you all so much, yet again, for the prayers and thoughts and overflowing love. This is definitely the most difficult thing we've faced, but don't doubt that we feel your love and prayers. And one of these days, I will return phone calls, messages and emails. I still appreciate them, even if I can't return them just yet! Okay, I have GOT to try to get some shut eye, we have a big day ahead of us.

Sunday, June 14, 2009

Proudly Introducing...

Joseph Xavier (Baby "A"). After completing the Beth Moore Patriarch's Bible study, I fell in love with the story of Joseph in Genesis. I was moved by his wisdom, patience, kindness and ability to forgive and love, not to mention put all his trust in God. And of course, his birth moved me: "Then God remembered Rachel; he listened to her and opened her womb; She became pregnant and gave birth to a son...She named him Joseph and said, 'May the Lord add to me another son.'"Genesis 30:22-25, NIV. Joseph is also Brian's maternal grandfather's middle name. Xavier is Brian's fraternal grandfather's midCheck Spellingdle name.

In the second picture, you can see his hair is blondish, full head of it, and it is unbelievably soft and addicting to stroke! And Daniel Ley (Baby "B"). Daniel is a name we've loved for a long time. In the Bible Daniel was put in a pit of lions because he was praying to our Lord. But God protected him and not a hair was harmed on his head. Can you imagine how much trust you would have to have in the Lord? We try to gather this same strength as we face the coming days. And we give Daniel over to God, as we pray that he will protect him. Ley, as most of you probably know, is my maiden name. As you can see, Daniel is beautiful (in my humble opinion) even with all the IV's. In the second photo, it was my first time able to hold him (Saturday)! Brian and I were both able to hold him again today! As far as surgery, they are shooting for tomorrow afternoon. If an emergency surgery becomes necessary for another child or the surgeon's morning surgery goes longer, it will be pushed back a day. Daniel is definitely a fighter! It's very surreal to be "visiting" our baby and thanking the amazing staff for taking such good care of him. That sounds so cliche, but the nurses and doctors are incredible and so kind. Please pray for Daniel tonight and into tomorrow as he can't eat (he has an IV with fluids and calories, but his stomach has to be empty). He loves his pacifier and I'm grateful for that. I told him today how many of you love him and how we promise to make up for lost time. As you can imagine, Brian and I could use prayers for strength and peace with all of this. We still feel so grateful for both of these beautiful boys and of course, for our oldest, who is just the best big brother ever. I have some cute stories and pics of Nolan, too...he is truly so excited about his baby brothers. Well, Joseph is hungry, so I am going to feed him. Thanks for all the prayers and love! XOXO!

Saturday, June 13, 2009

Welcome Baby Boys

I don't have much time, and unfortunately I don't have pictures yet, but I wanted to let everyone know that the twins have arrived safely! Yesterday, after our monthly ultrasound, we discovered Baby B hadn't been growing very well. So we headed to L&D for a surprise ultrasound! I promise I'll tell the longer version when I have more time. Anyway, at 2:43 PM Friday, June 13th, we welcomed Joseph Xavier and Daniel Ley into our family. Joseph weighed in at 7 lbs even and 19 inches long. Daniel weighed 5 lbs 2 oz and was 17 3/4 inches long. They are both beautiful. Sadly, I haven't seen Daniel yet, other than when they wheeled him by right after birth...one of the reasons I am only posting quick. And it appears he will be having surgery TODAY! So please please pray for us and for sweet Daniel. Joseph is beautiful and makes the most adorable squeaks all the time. He is eating really well. Big brother Nolan is very sweet and was super excited about meeting his baby brothers, although he had a tough time leaving us last night and wanted to stay with Mommy and sleep in my bed. We feel so blessed beyond words. Sorry this is so short! Love, our newly grown family

Tuesday, June 09, 2009

Maternity Photos

Well, I tried to get this picture proof to be bigger, but it won't work. But you get the idea. We had pics taken before we left for St. Louis. It was tough to choose which pictures, but these are four of them we choose for a "storyboard" that will go in the babies' room. The ribbon around my belly (in the second photo) says, "Don't open until July" and the script at the bottom says "With God all things are possible." I know I usually am not a fan of how I look in pictures these days, but I also know that if I don't have photos of this, I'll be sad later. The maternity photos my friend Beth did for me while I was pregnant with Nolan are still some of the most special we have!

Friday, June 05, 2009

We have a Date

Today at my doctors appointment, they surprised me by saying we would go ahead and set up a C-section date! Both babies are breech (as of an ultrasound Tuesday), so as long as both of them don't flip, we'll go forth with a c-section. If both flip, they'll induce me that day. That is if I don't go into labor before that. My cervix is still measuring at 1cm, which she said was still really good (aka long) for twins at 35 1/2 wks pregnant. Going by that, and that I'm not having many contractions, I feel like the babies are quite comfortable and we should make it to the 22nd. Of course, I was reminded that other factors could come into play as they monitor me that would require them to get them out sooner, as well, but for now, I can see a light at the end of the tunnel! It's so hard to believe!

Next Friday we'll have an ultrasound to measure the babies, which I'm really excited about. Today they measured my uterus, and it was measuring at 46 weeks! Crazy!

Thursday I met with the one of the two possible surgeons that will perform the surgery on Baby B. This was my second time at Children's hospital and the second time I became pretty emotional. As much as I feel like I'm at peace with all of this, walking through the doors at that hospital is like someone throwing a glass of ice cold water on my face. It's reality. Almost nothing the surgeon told me was new to me, but hearing it again broke my heart. Surgery will most likely occur within one to two weeks. It will be open heart, and will take about 5-6 hours. They will leave his chest open for 2-3 days because of swelling, so they'll be a clear patch over his sweet tiny chest where we will be able to see his fixed heart beating. He may need to be on a breathing machine for a bit. He can't eat for almost a full day prior to the surgery. Let me stop here to just say, we'll need your prayers. Okay, after surgery, he'll be there for one to weeks depending on many variables. He'll most likely have to re-learn to eat ("suck"). This will be the first of many surgeries in his life. Depending on how the valve they put in his heart grows, he'll need a new one every few years, longer stretches as he gets older. This surgery is "new" and began about 40 years ago. There are not too many 30 and 40 year olds alive who initially had this surgery, but we'll pray that with growing technology, our son will outlive us by many years and he and his brothers will die at old ages, surrounded by their kids and grandkids. And yet, its amazing what a gift each day is, isn't it? He will always have a large scar on his sweet chest. He should be able to live a "normal" life. Run, play on the playground, play sports, chase his brothers. Run from his momma when he's in trouble! And yet, as with any surgery, I was reminded their are no guarantees. Its open heart surgery and there are risks.

I'm filled with hope and dread of the upcoming events. I know that I'll never be the same. Brian and I will never be the same and I feel like we're standing on the edge of so many unknowns and I keep wondering why God thinks I'm the one for this. I cried out to him, asking him if I was being punished? Why it couldn't be me? Why this had to happen to US? Such selfish pleas. And yet, His quiet, gentle voice told me, "I have plans for your son. You have no idea what I can do with one tiny life, no matter how sick or how long he is on this earth." And still I want to shout, "But I don't want to endure this! HOW? HOW will I?" And then I think of Nolan. And how he is learning to ride his bike so good. Sometimes he gets stuck, going uphill. "Momma, I'm stuck!" "Push! Pedal REALLY hard" I tell him. He grits his teeth and tries to pedal. Sometimes I have to give him a push to get him started. Other times he keeps at it and he tries so hard, he gets unstuck. And he's so proud. And I'm even prouder. And he is stronger. So, I will keep gritting my teeth and pushing forward. And when I can't go any further, give one more push, I know who will gently and lovingly guide me along.

And don't let me forget to add the feelings of hope, excitement and joy I am feeling. Truly, for every time I feel sorry for myself, I also feel (and more strongly) honored. I get to be his mommy. Their mommy. It's funny, as soon as I typed that, Baby B gave me a good swift kick (or punch, I'm not so sure). But as they roll around in there, fighting over space in my growing belly, I'm out here rooting for them, loving them, anticipating them, no matter what kind of fight we may have to face. And their daddy is right along their with me. We know that Nolan was our first miracle and that now God has entrusted us with two more. I am awed and humbled each and every single day.

I know we have been so blessed to have so many people praying for us throughout this entire pregnancy. We've felt those prayers every step of the way. I believe in prayer and I believe it is so powerful. Thank you from the bottom of our hearts...especially from the heart that needs some fixing. XOXO!

Tuesday, June 02, 2009

Stubborness is Tiring

Nolan did NOT want to go to sleep one night and kept giggling in bed, moving around, getting out of bed. Finally, after it was quiet in his room for awhile, I checked on him, to find him asleep like this!
Totally conked out, kneeling on the floor as if praying, "Please don't make it really be my bedtime." I'm pretty sure he had been just getting down and climbing back up and ended up falling asleep midway. The striped pillow is on the ground because he had fallen out of bed a couple nights before. We ended up opening the futon up since he's such a mover in his sleep and he hasn't fallen out of bed since! :)