Friday, May 31, 2013

Open crib

Look who is in an open crib!



AND Miller is wearing baby clothes for the first time!


The boys have had a fairly good couple of days.  Miller is still trying to take a bottle at every feeding.  Sometimes he does really well and sometimes he gets too tired and just falls asleep.  The nurses say this is normal, that learning to use a bottle is hard work for a preemie.

Lucas' blood culture showed that the staph infection that he has is MRSA.  This made me worried because I know about MRSA and it can be very serious.  The nurse said that he is responding to antibiotics though.  He will have a spinal tap soon to rule out meningitis, although they don't think it is meningitis.  This is just precautionary.  Our nurse Becky said a spinal tap for babies is no more stressful to them than a heel prick.  As long as the spinal tap comes back clear of meningitis, Lucas will have surgery on Wednesday to fix the TE fistula.

Wednesday, May 29, 2013

Birthday!



This little cutie turned 1 year old today!  As you can tell in the adorable picture that my long time friend Heather (who had the same due date as me!) took, Declan LOVES cake.  He demolished that cake and we spent a long time cleaning up green icing out of his hair, behind his ears, in between his toes....  lots of icing!

The twins have both had pretty good nights.  Last night Miller got his second bottle and he took 27 ccs out of 29.  While he takes a bottle, the nurses watch for his heart rate and oxygen saturation.  Usually most babies at this gestational age get stressed out and really tired.  Their heart rates usually get high and their oxygen saturation usually drops.  But our little Miller man handled it so well- no change in heart rate or oxygen saturation!  He is doing so well on the bottle that he has been given the okay to have a bottle at every feeding.  This is a big deal!  He has skipped over the usual process of 1 bottle a day for a few days, then 2 bottles for a few days, then a bottle at every other feeding, etc.  The doctor said not to be surprised if he doesn't do this well after a few days since it is very tiring for babies to learn to take a bottle.  Hopefully Miller will keep up the good work!  We are so proud of him.  We were also told that they would soon be weening him out of the isolette into an open bed.  This is another really big step.  He has to learn how to keep his body temperature up.  When he gets moved into his new bed, we can start dressing him!  I am so excited to put some cute clothes and hats on our little guy!

Lucas has been resting and recovering the past few days.  Poor little guy has had a rough week.  He is doing better though, and the doctors are hoping to do the TE fistula surgery either the end of this week or early next week.  Thank you all for your continued prayers.  Please pray that Luke continues to recover well so that he can get this operation that he desperately needs.  Please pray for the surgeons and doctors working with him, that they have the wisdom and compassion that Luke needs.  Pray for God to calm Tom and me.  We are so nervous and scared for our little boy to have another surgery.  Pray that Lucas' lungs get better and that the chronic lung disease in his left lung clears up, since this is the only lung that is working well.  Pray that the antibiotics continue to work on the bacterial infection.  And pray that Miller continues to do well!

Tuesday, May 28, 2013

When it rains, it pours

Today during rounds the doctors told me that they thought Lucas had some sort of infection, either meningitis or staph infection.  They had done a blood culture and it showed growth.  Luckily they had already started him on antibiotics and by the time they did a second culture, the growth had stopped.  I am just so disheartened that my little boy keeps getting these set backs.  I wish I could take them from him.  I would gladly trade places with him.  Why should a little baby have to go through this?  I am trying to trust that God knows what He is doing.  After all, God loves Lucas even more than I do.  But it is hard to understand why this is happening.

When we left the hospital this morning, Tom and I got into an accident.  Some guy in a big truck hit our car and ran us off the side of the road, almost into a light pole.  It tore our tires up and did some damage to our car.  We were both okay and I am so glad that Declan wasn't with us.  The guy that hit us didn't even stop.  He just kept driving.  I know the important thing is that we are okay.  I know that cars can be fixed or replaced.  But still, with all that we have going on, this is not what we needed.

The one silver lining today was this-

Miller's first bottle feeding!

He tolerated it very well.  The nurse told us not to expect him to take it, that most babies don't get the suck-swallow-breathe thing down until the 36 week mark but Miller was a champ!  He started off with 10 ccs in a bottle and did so well, they tried another 10 ccs.  He only got halfway through the second round of milk before he got tired but we are so proud of him.  He even burped twice!  So now he can have 1 bottle a day and then he will move up to 2 bottles a day when he gets the hang of it.  I really like the nurse on day shift today.  She encourages me to be very active in Miller's care.  Sometimes the nurses just do the things like take his temp, change his diaper, etc., but Keely always asks if I want to do them.  And of course, I do!  So today I took his temperature, then changed a very stinky diaper, changed the monitor on his foot that tracks his oxygen levels in his blood, gave him a bottle, and burped him.  I loved every minute of it.

A little victory

The boys had their first eye exam this week and it went fantastic.  The opthalmologist was surprised and very
pleased with their eyes.  Both boys' eyes are far more developed than their gestational age (34 weeks) and they have no signs of eye disease!

Lucas had a stable night, thank goodness.  Yesterday the day nurse, Becky (love her!), showed us some warning signs that she has picked up with Luke when he starts getting air leaks into his stomach.  This is what is causing the sudden crashes.  Since he has the TE fistula, not only can things go into his lungs from his stomach, but air can also go into his stomach from his lungs.  They have his G-tube set on suction (which sparked a huge argument between the surgeons and neonatologists), but it is not getting the air out fast enough.  So we look for signs like a swollen belly and they draw out more air with a syringe.  Yesterday Becky told me she drew out over 1000 ccs of air.  That is over a liter.  So it is evident more than ever that he really needs to have this operation to fix the TE fistula.

Speaking of Becky, I wish this nurse could be here 24/7.  She is wonderful.  I can tell she loves her job and these babies.  While she was on vacation last week, she still called everyday to check on Miller and Lucas.  She is encouraging without being overbearing.

Here's hoping and praying for a good day today!

Monday, May 27, 2013

And another step back

Yesterday morning around 3 a.m. we get a phone call from my parents (they were staying the night at the hospital) and then a nurse practitioner telling us to get down to the hospital fast.  So Tom, Declan, and I hurried downtown.  When we got there we were met by the doctor and told that for some unknown reason, Lucas had crashed suddenly.  He received 3 epi shots and that got his heart rate up and they did some chest compression and got him stable again.  The doctor told us that she could tell we had a tough little guy because he was fighting back and helping them out.  And this morning around 4 a.m. we got the same phone call.  Lucas had crashed again.  This time they were able to get him stable with 1 epi shot.

We all ended up staying the rest of the night at LeBonheur.  My parents, Tom, and Declan went home later and I stayed the rest of the day at the hospital.  I talked to the doctors during rounds this morning and they said they don't think he is stable enough for surgery this week so it will be postponed until he recovers from this.  My heart kind of sank because he was doing so well and now this.  And he really needs this surgery to get any better.  A lot of people have asked me what exactly Lucas has.  He has a tracheoesophageal fistula (TE fistula), esophageal atresia, a small blood vessel between his right lung and heart, and he was born with a right lung that is about 1/2 the size it should be.  The TE fistula is an abnormal connection between his trachea and esophagus.  This is what's causing stuff to get into his lungs from his stomach.  The surgeons will clip the fistula and repair it so that it separates the abnormal connection.  Esophageal atresia is when the esophagus is basically an empty sac and doesn't connect to the stomach.  He will have to have surgery to connect his esophagus to his stomach.  They will most likely put weights in both the stomach and esophagus to stretch them closer to together and then connect them.  He also has to have heart surgery to fix the small blood vessel between his heart and lung.  It is very overwhelming thinking about all that Luke is facing.

I'm trying to stay positive through all of this, but sometimes it is just hard.  I look at my little boy struggling through all of this and it just breaks my heart.  It is every parent's nightmare seeing their child so sick and struggling.  Some days I can be positive and some days the seriousness of it all just gets me down.  I'm terrified.  I would give anything in the world for my baby to be better.  If I could give him my lung, I would cut it out of my own chest.  I think a lot of people think that because there are improvements that everything is ok, but it isn't.  He is very critical and the doctors remind us of this every day and always tell us the worst case scenario. I know they do this so that we aren't surprised by anything, but now I dread talking to the doctors because I'm afraid of what they are going to say.

For all of those that are praying for our babies, please pray specifically that Lucas gets stable enough for surgery.  He needs this surgery to survive.  It is a life saving procedure that needs to be done soon.  Pray for the doctors and surgeons.  And pray for twin brother Miller, that he keeps doing well.  Miller is almost up to full feeds now and he is tolerating them well.  He has had a couple of times where he has spit up, but those times are few and far between.  If he continues to tolerate feedings well, he will try a bottle this week!

Thursday, May 23, 2013

1 month old!

I'm a day late in posting this.  Our little twinkies turned 1 month old yesterday!  I can't believe it's been a whole month already.



Lucas,
You are a whole month old now!  You have overcome so much in your first month.  You had a surgery when you were less than 24 hours old and were a champ!  You have showed us just how much of a fighter you are.  All the nurses and doctors at LeBonheur tell me you are such a fighter.  You have more spirit and strength than anyone I know!  Right now you weigh about 4 lbs, although some of that is swelling from fluids.  
You are wearing a size XS-Preemie diaper, which surprisingly isn't the smallest diaper they have.  Mommy and Daddy still haven't gotten to hold you yet, but Mommy got to take your temperature under your arm.  You are currently on a regular ventilator at 30% oxygen, which is a big improvement from last week.  Sometimes when we talk to you, you wiggle your little hands and feet and open your eyes.  It completely melts our hearts!  We are so proud of you little man!  We love you so much!



Miller,
You are one month old baby boy!  You are such a funny and cute little guy.  In the past month you have shown us your feisty and adorable little personality.  You have no problem letting us know when you don't like something.  Your biggest annoyance is getting your diaper changed.   You don't like this at all!  You love to sleep all stretched out with your arms above your head.  You look just like your daddy when you sleep!  You had NEC but a round of antibiotics has cleared that up and now you are eating like a champ.  You absolutely love your pacifier and if it's not in your incubator you try to chew on anything that's around you.  You are notorious for trying to pull your feeding tube out.  You are in size XS-Preemie diapers.  You weigh 3 lbs 15 oz.  We love you, little fiesty man!

Tuesday, May 21, 2013

A good week

Overall we have all had a pretty good week.  Lucas has been able to stop taking a lot of medicines (he was on 14 different IV lines of meds last week...  The most his nurse had ever seen was 16), his blood gases have been excellent, x-rays are looking slightly better, and he is now weened off the nitric oxide.  His swelling has gone down a little bit too.  They weighed him on Friday and he weighed 4 and 1/2 lbs.  Most of that was swelling from fluids.  They estimated his dry weight to be around a little over 3 lbs.  Right now the plan is to get him weened down on his oxygen, recover from the lung burst and barium in his right lung, and gain weight (he is getting a new TPN with more calories).  One of his chest tubes randomly came out on its own yesterday.  They did an x-ray and determined that his lung was healing fine without both chest tubes so they left it out.

Little Miller man is doing very well.  He had an x-ray and it looks like the NEC has cleared up and he will be starting feedings of milk again today.  He has to get a blood transfusion this afternoon.  I was a little worried when the nurse called us to ask for our consent for the blood transfusion, but she assured us that nothing was wrong and that it was mainly to help him feel better and give him a little boost.  So after his blood transfusion, he will start off very slowly on milk feedings.  The first one will only be 2cc but they will gradually increase the amount over the week and hopefully by this weekend he will be taking a bottle.  Some of the nurses even think he may get to come home next month.  I'm trying not to get my hopes up but it's exciting to think about.  It will be so bittersweet though since Lucas will be in the NICU for a while.  He still has at least 2 surgeries ahead of him- a heart surgery and surgery to repair his esophagus.

This has got me thinking lately that we need to buckle down and start buying all the things we never got a chance to buy before the twins were born.  I have exactly 2 preemie outfits.  I didn't save very many of Declan's newborn outfits either so I am going to have to shop for preemie/newborn clothes.  Luckily we got the biggies- a double stroller and new car seats.  Now we just have to stock up on diapers and things like that.  At Target the other day, the cashier asked me if we would like some coupons for diapers and I was like, "You have no idea how many diapers we will be going through soon."

The boys are overall having a better week.  I, on the other hand, am having a worse week, physically.  I was doing fine last week and all of a sudden my belly got really tender and sore.  Tom says I'm trying to do too much and not resting enough.  I have had such a different recovery with this c-section.  I've experienced both  ways of having a baby and I am having a much more difficult recovery this time.  I apparently have developed an allergy to penicillin recently.  I took an antibiotic this morning and a few minutes later my throat starting closing up, I started itching like crazy, and I was having problems breathing.  Luckily, it went away after a few minutes but it was scary!  I called the nurse line at my doctor's office and she said the same thing happened to her after her pregnancy.  I was told not to take penicillin anymore.  Another weird thing that has happened after this pregnancy is that my hair has gone nuts.  It is seriously a completely different texture.  I'm so tempted to just cut it all off but I always regret it when I do.  Pregnancy has taken such a toll on my body.

Say a prayer that the improvements keep coming!  We are hoping for more and more good days!

Saturday, May 18, 2013

Family pictures

My good friend Sonya gave us a priceless baby gift- professional pictures of our family.  She came down to the hospital and took beautiful pictures of the twins, Declan, and us.  She is an amazing photographer and has taken pictures for us on several occasions (including my maternity pics when I was pregnant with Declan and some pictures to send to Tom when he was on deployment).  Thank you Sonya (Sonya Balentine Photography) for the sweet pictures of our family.


























Tuesday, May 14, 2013

Our boys are tough little guys

Over the past few days we have had a few more setbacks with Lucas, but he has also made some improvements.  His kidneys are working again and his urine output is now pretty good.  Sunday night was another rough one.  His left lung burst and he had to have a chest tube put in to relieve some of the pressure. They said his lung can heal but it will take some time.  The doctor is still not hopeful for Luke.  He thinks he only has a few days left, but we're not giving up on our little boy.  We are going to keep fighting for him.

I sat down beside my precious Lucas and told him that we have been through so much together during the pregnancy and I will be there by his side through this too.  He is truly a part of me.  I always tell him that he has more spirit and strength than any person I've ever known.  Probably one of the most endearing and sweetest moments of motherhood for me happened a couple of days ago when, as I was talking to Luke, he opened his eyes and started wiggling his arms and feet.  He knew his mommy was talking to him and it warmed my heart so much for him to respond to my voice.

Miller is responding very well to the antibiotics for the NEC.  Hopefully he will be back on milk feedings by the weekend.  They will start very slow and work back up.  Miller is such a funny little guy.  All the nurses talk about what a feisty little boy he is.  He hates getting his diaper changed and bath time and is not afraid to let you know that he is not happy.  He loves his pacifier and will try to use anything he can as a paci if his is not nearby.  Today we caught him pulling out his oxygen tubes from his nose to try to use as a paci.

Declan learned a new word this week- brother.  Or bru-ba as he says when he is around the twins.  It is so sweet to hear D say bru-ba.  I can already tell he is going to be a great big brother.

It's hard to believe that this sweet little guys have only been in our lives for 3 weeks.  It feels like they have always been here.  They are so much a part of us and I love my sweet family so much.

Thursday, May 9, 2013

A long night

Last night was probably the worst night of our lives so far.  Lucas had another episode where his stats went really bad.  We had just gotten to the hospital and everything went downhill.  The doctor came into the room and told us that we needed to think making some decisions about what to do if his stats go down again.  No parent should ever have to think about that kind of decision.  His doctor said he is more than maxed out on the types of support we can give him.  He is already on support levels enough for an adult.  They put him in a paralytic state to help things and have him very heavily sedated.

I held his sweet little hand and told him that as long as he wants to keep fighting, I would fight with him and for him.  But if the pain was too much and he needed to let go, I understood and I would see him someday in  
heaven.

Currently he is in stable but very critical condition.  He is on a lot of medicines and support.  The next 24 hours are a critical time.  We definitely need all the prayers for these sweet boys that we can get.  Please pray specifically that his lungs recover as well as his kidneys (he went into kidney failure last night but it seems to be improving slightly, as he is producing small amounts of urine with a catheter).  Pray for peace for our family.  Pray pray pray that Lucas recovers from this and gets stronger each day.  Pray for his twin brother Miller who is doing better.  Pray for the amazing nurses and doctors who work with him daily.  Just please pray.  We believe in the power of prayer and that God can do things that surpass all understanding.  The name Lucas means "light" and I feel that his name fits him.  He lights up our lives.  He is amazing.

Wednesday, May 8, 2013

A few steps back

Over the past couple of days both of our boys have had some major set backs.  Monday night we were told that Miller had some bloody stools, had stopped breathing 6 times that day, and had brachycardia spells.  These are all signs of NEC, which is a serious infection of the gut.  By Tuesday he had gotten the official diagnosis of stage 2 NEC (stage 2 means symptoms + bloody stools).  There are 3 stages of NEC.  We were told that only about 15% of babies with NEC progress from stage 2 to stage 3, so hopefully it will not get worse.  Right now he is being treated with a couple of antibiotics and pain meds.  So far he is responding to the antibiotics.  If it does get worse he will have to have surgery to remove the infected areas of the gut and fix any perforations that could arise.

On Tuesday Luke had some upper GI and skeletal x-rays.  Everything went fine with the skeletal x-rays.  However, with the upper GI x-rays, they had to inject a barium contrast through his G-tube to check his surgery site.  The barium went into his lungs and he started suffocating.  They said he was basically drowning.  
They rushed him back to his room and got him stable.  They had to put him on more oxygen and give him some antibiotics.  Around 8:00 pm, I left his room for just a second to go to the bathroom.  When I came back his room was full of doctors and nurses.  His heart rate and oxygen levels dropped very low.  I looked around the people standing over him and saw that he was blue.  I lost it.  My heart sank and I immediately began praying for my little boy.  I prayed that God would take me instead.  One of the doctors came over to talk to us and told us he was very critical and may not make it.  We called my parents and told them to come
up here ASAP.  Over the next 20 minutes (which felt like forever) they slowly got his heart rate and oxygen levels up after giving him surfactant for his lungs.  Currently he is still in very critical condition.  After talking to the doctors this morning during their rounds, they told us that hopefully we will see improvements over the next 48 hours.  He will need some major recovery time for this.

For anyone who prays, please keep our boys in your prayers.  They are facing a lot and have a long road ahead of them.

Friday, May 3, 2013

My pregnacy- a little background

On October 27, 2012 we found out I was pregnant again just 5 months after Declan was born.  Boy were we surprised- happy and filled with joy, but surprised.  You can imagine how even more surprised we were when we found out on November 9 that we were expecting TWO little bundles of joy.  That day in the ultrasound room is one that I will never forget.  The ultrasound tech was very quiet and I was worried that something was wrong when Tom said, "Uh.... Are there TWO babies in there?"  and the tech said, "Yup.  You're having twins!"  I sat there stunned and Tom laughed for like 10 minutes.  Nobody believed us at first when we told them.  Tom's mom and my mom thought we were joking at first.

So began a complicated and high risk pregnancy.  The first hurdle was that I had hyperemesis gravidarum.  I had it with Declan too.  For those that don't know what HG is, it is severe (and I mean severe!) vomiting and nausea during pregnancy.  It is NOT morning sickness.  I was throwing up between 10 and 20 times a day.  I lost about 20 lbs.  I threw up so much that it eroded parts of my esophagus.  It stripped the enamel off my teeth and I have to get dental work done for the first time in my life.  I pulled muscles in my abdomen and chest from throwing up.  Since my pregnancy I have learned that I have a hiatal hernia in my esophagus which may be related to HG.  I was in the hospital several times for severe dehydration and malnutrition, where they would put me on IV fluids and in the process blow my collapsing veins.  At home, I would throw up so much I would pass out and Tom would have to carry me to the bed.  It was bad.  And unlike morning sickness, HG does not stop at the 12 week mark.  Both pregnancies I was this sick until around the 22 week mark.

Right before Christmas we had our first appointment with the high risk doctor.  They did an ultrasound and told us that Baby B (Lucas) had a lot of problems.  They pointed out a thickened nuchal fold which is a marker for Trisomy 13, Trisomy 18, and Trisomy 21 (down syndrome).  They saw a heart defect and fluid in  his lungs.  They weren't very optimistic that he would make it.

A month later at another ultrasound I was told that we had Twin-to-Twin Transfusion Syndrome.  This is where one twin is getting to much blood from the placenta and is at risk for heart failure and the other twin is not getting enough blood and is not growing.  Basically the only chance they have is through surgery or by drawing out the excess fluid from the baby who is getting too much.  It is a very serious condition.  The doctor who delivered the news was cold and just told us and left the room, like we were taking up too much of her time.  I refused to ever see this doctor again.  We were then sent to LeBonheur Fetal Center to see a specialist who told us that we did not have TTTS.  During the month of January, we were also told that Lucas' heart was horizontal and some of his organs were misplaced.  We saw a pediatric cardiologist a couple of times over the next few weeks.

In February at 22 weeks pregnant I was in the hospital for signs of preterm labor.  I was put on strict bedrest again.  Shortly after that I was diagnosed with polyhydramnios which meant that I had too much amniotic fluid.  I had enough fluid to support quadruplets.  This condition puts the mother at risk for preterm labor and severe bleeding during childbirth.  Another big risk with it is that if your water breaks, there can be such a huge gush of fluids that it can pull the cord out before the babies, which can be very dangerous for the babies.

All in all it was a pregnancy with a lot of complications for the babies and myself.  Luckily I had two amazing doctors (regular OB and high risk doctor) who took really good care of me.

Wednesday, May 1, 2013

Holding Miller for the first time

On April 26, when he was 4 days old, we were allowed to hold Miller for the first time.  I was so nervous!  When Declan was born I thought he was tiny, but this is a whole new level of tiny.  Luckily the nurses gave us tips and helped get everyone situated.  They wanted me to hold him with his head against my chest so he could hear my heartbeat and feel some of my body heat.  Our sweet nurse, Ann, got him all set up with heated blankets and he immediately snuggled up and went to sleep.  While I was holding him and talking to him, his oxygen levels got better.  Miller likes it when we talk to him and gently pat his back when we hold him.  There is nothing like holding your child for the first time.  Hopefully soon we will get to hold Lucas.  The nurses said he doesn't really like to be touched sometimes and we don't want to stress him out and take a step backwards.  But as soon as my little monkey is ready, I will be patiently waiting to hold my littlest man.





Mommy, Daddy, and Miller






The boys are together again!

Both boys are now at LeBonheur in an adjoining room.  Miller was transferred last night and did really well on his way over there.  It will be so much easier on everyone having them at the same hospital.  It was very stressful driving all over town and trying to see both Lucas and Miller everyday while recovering from a c-section.  I always felt guilty if I couldn't see both twins every single day.  And plus, I'm sure it will be good for the twins to be next to each other.  They spent the last 7 months right next to each other in the womb.  I feel like they need to be near each other now too.

The boys are doing very well.  Lucas had a little bit of a rough night last night.  His blood gas levels were a little off so they had to up his oxygen levels a little bit.  And his sodium levels were slightly elevated so they will do some more labs today to check them again.  Miller is still breathing on his own and taking feedings through a feeding tube.  He is tolerating the feedings very well.  Each day they increase the amount of milk that he gets.  He is also using a pacifier while he gets his feedings.  This is so he will associate sucking with getting food.  The nurses say that eating from bottle is a big milestone for preemies.  They have to learn to suck, swallow, and breathe at the same time which is a big deal.  They usually develop this skill at the 34-36 gestational age mark.

We asked the nurses about decorating the boys' room since they will be there for a little while.  We were given the okay to bring stuffed animals and decorations.  They just can't be in the isolette (the plastic box/bassinet thing) with them.  Each boy now has four stuffed animals and a security blanket.  I want to make them a cute sign with their names on it.  I have been searching for a little framed bible verse to hang in their rooms.  All throughout my pregnancy and now, I always thought of Psalm 139: 13-14, "For you created my inmost being;  you knit me together in my mother's womb.  I praise you because I am fearfully and wonderfully made..."  I always loved that because even when the doctors told me something was wrong with my babies, they were perfect to me.  God created these beautiful babies and I would love them no matter what.  They were fearfully and wonderfully made.