Wow, what a day!

Being parents is hard work...being parents of twins is often (in the infant stage anyway) double the work, and being parents of sick twins is...well, you get my drift!!

The boys haven't been sleeping or eating well since they feel pretty icky. None of us slept too great on Sunday night, so we were already going into the day rather exhausted.

Caleb and Luke and I made it to St. Johns hospital yesterday morning in time for Luke's head ultrasound. That went ok, although he cried through most of it. It involves nothing more than a head massage with an ultra sound tool, but he wasn't too happy. He probably just wanted to be back home in bed like the rest of us!

We came home and I fed both of the boys. Luke took 7 oz by mouth and a jar of baby food. Woo-hoo!! The most he's eaten in three days. I was really excited about this!! Since Luke hasn't been feeling great, we've been putting his feedings through the g-tube in his stomach (we don't use it normally, but it's pretty convenient for a baby that's not eating, has a fever and is getting more and more dehydrated. I found myself wishing Caleb had one too!) However, feeding through the tube didn't turn out to be as easy as we remember it being a few months ago. I'm not sure if it's the volume or what, but every time we tried to feed him this way, we sat him up to burp him and he threw up the entire feed! Ugh. Very frustrating! Anyway, you can see why I was thrilled he ate so much and all by mouth!

Next, we headed to pediatric neurology to hear the results of the ultrasound. THANKFULLY, Andrew was able to take a couple of hours off of work. Sitting in a waiting room with two feverish, cranky 9 month olds is not an easy task for one person. And we still had two appointments to go.

So, the ultrasound shows that the ventricles in Luke's brain look pretty much the same size they've always been. They don't want to do anymore imaging studies at this time. The plan now is that we'll go back in three months and they'll just measure his head, check for any other symptoms and then go from there. Luke's fontanel (aka, soft spot) is slightly bulging. They are a little concerned about this because it could signal increased fluid on the brain. They've instructed us to watch him closely... specifically for things like larger head size, extreme fussiness, vomiting, vision problems, etc. Right now there is no need for a shunt to be placed. The doc told us of a situation they just had with another set of twins. One twin was shunted, the other one had some fluid on the brain, but nothing major. Then, all of a sudden at 10 months, things got worse and they had to put a shunt in her also. Basically, what they are saying is, "We're not out of the woods yet, so watch carefully because Luke may end up needing one also." For those of you who have been with us on this journey, you'll remember the HUGE miracle that happened on the day of Luke scheduled shunt surgery. My faith was a little shaken yesterday because I just realize how fragile things are and how quickly they can change. But deep down, I know God is taking care of it. I'm really trusting for this fluid in Luke's ventricles to go down and for a shunt to never be necessary.

At the same time, we want whatever is best for Luke. Certainly increased fluid on the brain can cause developmental delays as well as other complications, so if the fluid isn't going to reabsorb on its own and starts to cause him some major issues, then a shunt would be the better option. Just pray for us to have the wisdom we need to see the warning signs of increase fluid, to push for more imaging studies if that's what needs to happen and to just make the right decisions for Luke. In some ways, I really want an MRI done. The risk of course is the radiation exposure. The benefits are that we would know for sure what things look like in Luke's brain. He's outgrown the head ultrasound (safer option) phase since his head will begin fusing together soon. So, an MRI would be the other option for imaging studies. Thanks for praying....I'll keep you posted on how things look in these regards.

GREAT NEWS....the boys are not terribly sick. Caleb's left ear looks a tiny bit pink, so the doc went ahead and prescribed antibiotics for an ear infection. He also has a croup cough. Poor litte guy sounds awful...and is beginning to sound like nothing at all. I've never known a baby to lose its voice, but he is. It's adorable and sad all at the same time. But boys' lungs sounded great (YAY!! preeemies are very much predisposed to lung/respiratory infections). They have come into some sort of viral respiratory issue. So we just have to wait that out and pray it doesn't turn into anything worse, like pneumonia. Luke isn't on antibiotics. He still has a slight fever this morning and the poor little guy has broken out in a rash. The doc thinks hives...eczema. You can tell it itches something terrible and all we can use is Hydrocortizone cream, which only brings so much relief.

Thanks, as always, for your continued prayers. I'm so amazed by God's constant, day in and day out, faithfulness to us. Our God is so good.

Oh...their weights ..I almost forgot. Caleb is now 19 lbs 10 oz and Luke is 17 lbs 8 oz. The most exciting thing about this I think is to see how much Luke is gaining on Caleb. At one point, they were nearly 4 lbs apart. YAY for weight gain!

Monday

The next three Mondays will be important for us. Tomorrow Luke goes for his head ultrasound. The doctors are checking on the ventricles in Luke's brain to see if they are enlarged any more than they were back in March. We used to have to check this every other week, then once a month....and now just once every three months. We'll have the ultrasound in the morning at the hospital and then head over to the pediatric neurosurgery office to go over results and discuss whether or not a shunt would be necessary at this point. We've been praying for a long time now that the ventricles would not enlarge anymore...I'm really hoping to hear that they've actually decreased in size. The danger of enlarged ventricles is simply that the extra fluid in the brain is causing pressure on the brain tissue itself and that, of course, is not good.

The following Monday, July 6th, Luke and Caleb both will be heading to the doctor to get their nine months shots. That's never a fun day for anyone. I think it's worse as they get older. Since Andrew can't take off work that day, so my friend, Drusie, is coming with me. Thank goodness!! One mommy plus two screaming babies doesn't work out too well. It'll be great to have her help.

Finally, Monday, July 13th Luke goes in for an EEG to check on any seizure activity. Luke's has been on anti-seizure meds since October. We don't really think he's had any for a very long time, but they've kept him on meds as a precaution. The EEG is interesting. It has to done when the baby is "sleep-deprived" (apparently, sleep deprivation triggers seizures, so if you're going to have one, that's when it might occur). So, on July 13th we'll have to wake Luke up at 4 am and try to keep him awake until his 8 am EEG appointment. Now there's a Monday morning for ya! Wow...not looking forward to that. I AM looking forward to getting Luke off of his anti-seizure meds. As long as everything looks normal, we can start weaning him off. At that point, Luke won't be on any medications!!

Thanks for your prayers in the next few weeks. In addition to our two appointments tomorrow for Luke, I'm also going to have to take both boys to see their pediatrician. They have both been running fevers this weekend and don't seem to be feeling too well. It's so sad to have sick babies. Of course, we're familiar with this feeling, but since they've been discharged, neither of the boys have been sick AT ALL!! So we were getting used to healthy, happy babies. It's been hard to see them feeling so icky the last couple of days. We're praying for quick recoveries! My sister was able to visit this weekend from St. Louis. It was so great to have Aunt Kari here to help snuggle the little guys. Hopefully next time she comes, Luke and Caleb will be back to their healthy, spunky selves!

Big Day!

Well, today is a milestone in our home. Luke has officially been home as many days as he was in the hospital!! Today is his 130th day at home. I know it might seem strange to count the days like we do, but somehow going through an experience like this makes you appreciate every- s-i-n-g-l-e- day.

Things are going really well in the Lundgren household!  We just enjoyed a great visit with my parents.  Dad was here two weeks and mom stayed about four weeks.  The highlight of their time here with us was traveling to Pennsylvania to visit my mom's family.  We recently bought a 2007 Toyota Sienna mini van and decided to put it to the test and make our first road trip as family.  The six of us loaded up and ventured out on the 17 hour journey. Of course, with two little ones, you have to stop A LOT so all in all, it took us more than a day to get there. Luke and Caleb are amazing travelers!! They did so great!!  (That's good to know, considering they'll probably be doing a lot of traveling in their lifetimes.) Anyway, we really, really enjoyed time with my extended family.  With so many Italians in one room, you're bound to have a lot of fun! 

I wanted to give a quick update on little Luke today.  I blogged about a month or so ago about several things we are praying really hard for these days. One of those areas of concern is Luke's eyes.    We were told back in February that Luke's right optical nerve was about 60% the size of what it should be.  The doctor didn't have any hope that it would grow to a normal size, but told us the small size may or may not affect Luke's vision. Andrew and I have been really concerned about Luke's eyes since about 4 days after we brought him home. Those of you who have been able to interact with him in person will know what I'm talking about. He struggles to focus, track, interact with those around him.  Well, we went back to the eye doctor on May 13th.  The doctor told us that BOTH of Luke's eyes have normal-sized optical nerves!  He admitted that on his report he stated otherwise back in February and couldn't really give us an explanation, but "somehow" (in quotes, because we know it's God hand on Luke!) things are normal now. Luke does suffer from a condition called nystagmus. This causes his eyes to be very jittery, making it hard to focus. There is no treatment for nystagmus, but it does often improve, although the doctor could give us no guarantees of that of course.  Another concern is that both of Luke's eyes have some crossing going on. The doctor considers him a good candidate for surgery to correct the crossing.  This would be outpatient surgery and would be done after Luke is one year old. Overall, the eye doctor is quite hopeful that Luke will have pretty decent vision, but as with most everything in Luke's little body it's a "wait and see" situation.

All we know, is that each day, his eyes seem to be better....better in the sense that he can focus better, hold his gaze longer, track better, etc.  We really thank God for this and thank YOU for praying!

I'll post more info later about upcoming Dr. appointments for Luke and other things that are going on with him. He's a sweet little guy....smiling and laughing and making our home a really happy place!  I'm uploading a short little video of Luke.  Again, for those of you who have spent some time with him, you know how awesome it is that he's actually looking in my direction and watching my hand, etc.  Just wanted to show you how much he has improved! Thank God!!

They're coming tomorrow!!

I am just so excited for tomorrow!  My parents are flying in from Belgium for a visit.  Luke and Caleb haven't seen Grandpa Hoggard since they were in the NICU. Boy, is he in for a surprise! Of course, he's seen many pictures and videos but it's just not the same. My dad will get to stay two weeks and my mom will stay for a month!  Yay!!  

Something about having kids just makes you miss your parents even more. I mean I've lived on a different continent than them for 12 years now (wow, has it been that long?!) and I can't say it ever really gets  easier to be apart.  You can kind of get used to it, but it's never easy.   Since the boys have been born, though, I've missed them so much more.  I'm so glad we'll get to spend this time together!!

An update on the boys!

Dear friends,

 

The four of us went to church for the first time as a family unit this past Sunday.  As we entered the sanctuary to be seated, the congregation had already started a time of worship. “…For you are great…You do miracles so great! There is no one else like You. There is no one else like You….”   Of course, we couldn’t help but turn our attention to our Heavenly Father in that moment. As we stood there with our precious boys in our arms, we wanted to shout at the top of our lungs “You are great, God!!! And You do miracles so great!!” We were holding our miracles!!    Throughout the morning, we proudly showed our beautiful sons to our friends.  So often the conversation came around to something like this, “oh, we have prayed for you so much!!”  We were quickly reminded of the many days we spent in a dark valley, and thankful all over again for the friends who had prayed for us and for Luke and Caleb when we were too weary to even pray ourselves.  Of course, prayers weren’t just prayed here in Springfield, or by members of our church family, but literally all over the world!! I wish we had time to share every story, but over and over and over again we’ve heard reports of people praying for miracles for our boys.  Some family friends in Sweden fasted and prayed for days.  Churches all across the country stood with us in prayer.  Our co-workers, our neighbors, people everywhere....praying. We have numerous stories of children who wouldn’t let their parents sleep at night until they had prayed for Luke and Caleb.  And, so before we say anything else in this letter, we want to say thank you. Thank you for believing in miracles. Thank you for praying.

So, how are Luke and Caleb these days?  That’s a question we get asked a lot. So, we wanted to bring you up to speed on everything.

 Well, we’ve spent the winter months at home.  The doctors were quite clear with us that we should not have the boys out in public places or around other children until May.  Because October through April is high flu and RSV season and preemies are highly susceptible to these illnesses, it was safest to stay home.  So that’s what we did, and we are happy to say, we’ve gone all winter without any sickness in the Lundgren household!!  On Sunday the boys turned seven months old!! They are growing and developing and becoming, well, very charming little boys.  J  They are both smiling and laughing  and have begun to interact with each other more  and more and that is fun to see!

Caleb:

He’s a healthy 17-pound baby now!!  His bottom two teeth have poked through and he is chewing on anything he can get his hands on. He has also learned to roll over from his tummy to his back and his back to his tummy.   He’ll be on move and crawling before we know it!!  Caleb loves his stuffed animal toys, his pacifier and books.  He will sit and look at a book with mommy and daddy for a long time.  He’s very interested in the world around him and loves to look at new things!   He’s eating his fruits and veggies now and seems very pleased by the new tastes he is discovering.   We are so thrilled that Caleb seems to be developing just perfectly!

 

Luke: 

As you know, Luke has put up quite a fight since the day he was born.  He was discharged from the hospital on Feb. 2^nd.  We’ve been busy the past 3 months following up with all of his physicians, therapists, and his neurologist.  There are so many, many things to praise God for in Luke’s little body.  It would quite literally take pages to tell you all of the little miracles we see here and there, so we’ll highlight the most significant.   Luke’s surgeon (who, if you remember, operated on Luke’s intestines, removing quite a large section and then reconnecting the remaining parts on Jan. 2^nd) followed Luke’s progress after we left the NICU. In March, he was so impressed with Luke’s success and well being, that he released him from his care!  Luke is still eating like a champ—taking all of his food by mouth!! He’s on increased calorie formula and has been able to maintain healthy weight gain.  Secondly, we’ve been visiting the pediatric neurosurgeon who is watching the ventricles in Luke’s brain very closely. Because of his severe brain bleed, the ventricles are still enlarged, however there has been no increase in their size for several months now, so they are still saying he will not need a shunt.   Luke has also shown no signs of any kind of seizure activity since we’ve been home. He is still on a small amount of medication to control seizures, but we suspect this is not needed. He will go for an EEG in July and if everything looks ok at that point, they will take him off this medication.  The neurologist examined Luke also.  He talked with us very directly about the possibility of Luke developing Cerebral Palsy (CP). At the time of the examination, he didn’t see any early signs of CP, although these things don’t always show up until kids are a little older.     In addition, Luke’s pediatrician has had blood tests done to check on Luke’s liver.  When Luke was discharged from the NICU, he essentially had liver disease. You may have noticed his dark complexion in pictures. No, this is not a tan!! Luke had a very severe case of jaundice, induced by his prolonged dependency on IV fluids in the NICU.  Premature babies are kept alive by these proteins and fats that can be given through an IV when they are unable to drink milk. However, their livers do not process this very well.  When he left the hospital his bilirubin levels were almost 9. At last check though, Luke’s levels were at 2.9…with 0-1 being normal, so he is well on his way to complete healing of his liver!!  The last thing we want to mention is the therapy that Luke is undergoing.  Luke and Celeb both receive occupational therapy and Luke will soon add physical therapy and speech therapy to his weekly routine.  Last time the occupational therapist came, she mentioned how impressed he was with Luke’s abilities. For sure, he shows signs of delay but she told us that to look at Luke’s chart and and then Luke, the baby….the two do not match!! She wouldn’t expect a baby with Luke’s history to be able to accomplish all that he has been able to accomplish so far.  We give all the credit to the Lord for this!! There is no doubt in our minds that Jesus has healed him and given Luke the ability to do all that he is doing!!

As we stated earlier, Luke shows signs of delay in regards to motor skill development. He is still working to have good head control, sit up, roll over, etc. This was anticipated of course. We are believing God for what we’ve been asking him for from the very beginning of the pregnancy…perfect development.  We really feel in our hearts the urgency to not stop praying!  We know God isn’t finished working in Luke and we are going to see more miracles in the days ahead. We have a few areas that we as a family are praying really hard for right now.  We wanted to just share those with you and invite you to pray with us.  

1) Luke’s vision --This is most urgent to us right now. After visiting the eye doctor a couple of months ago, we know that Luke has vision problems.  The optic nerve in his right eye is 60% the size of what it should be. They don’t expect it to grow anymore. This can sometimes be ok and not cause any issues or it can cause vision loss in the affected eye.  It cannot be treated with surgery or eyeglasses. Simply, Luke would be partially or completely blind in his right eye.  Since bringing Luke home, we have really noticed that he has a difficult time seeing clearly. It’s hard to know what infants can see and what they can’t, but we know for sure he is struggling. The older babies get, the more they begin to interact with their surroundings and Luke’s visual interaction is very limited. He doesn’t always bat at dangling objects or make good eye contact or watch his mobile. Even his delay in developing head control could be in part because of his loss of vision.  Luke goes back to the eye doctor on May 13^th.  Can we just be completely honest with you? We are asking God to heal Luke’s eyes!!!  We are simply asking, “Lord, if you are willing, make Luke completely whole!!”  

2) Liver--Pray for continued healing of Luke’s liver and for the jaundice to be completely resolved. 

3) Muscle development—Luke has weak muscles. The danger of brain bleeds (and especially a bleed as severe as Luke’s was) is poor muscle control. The communication between the brain and the muscles is hampered causing poor development. We believe God can take care of this and that Luke can have no signs of Cerebral Palsy.

4)  Mental Development —Pray for Luke’s mental capacity. Again, because of the brain bleed, we’ve been told that the chances are that he won’t be able to function at a normal capacity.  But we’re hoping for damaged parts of Luke’s brain to be healed.

  5) Ventricles in Luke’s brain—pray for the enlarged ventricles to return to a normal size.  Continue to brain for every area of Luke’s brain affected by the bleed.  These portions of his brain have been damaged.  Pray for God to heal this brain tissue and restore perfect brain function.

  6)  Digestive system—While Luke’s intestines are healing quite well, he still is gaining weight very slowly.  We’re praying that things will get back to normal and he’ll be able to absorb all the nutrients he needs to grow big and strong!

All that being said, Luke is a beautiful little boy with such a spunky spirit about him. He enjoys “conversations” with Caleb and is babbling all the time now.  He loves to be rocked and cuddled and loved on! And just like his mommy, he is a morning person! He greets us everyone morning with big smiles that just melt our hearts! 

We thank God for these little guys!!  Thank you for continuing to pray with us.  It’s been quite a journey and we only made it through because of the strength God gave to us and because of the support of our families and friends. We find it so difficult to express to you just how much we appreciate you and all you’ve done for us. Thank you, thank you, thank you!!  We have so many stories to tell Luke and Caleb as they grow up of all of the miracles God has done for them and of the amazing people that prayed for them all along the way!  We truly pray God’s best for each of you. 

From here on out, we’ll be sharing our family news through blog postings.  We’ll let you know that address as soon as we get it all set up!!

With love,

Andrew and Kristi