August turns out to be a big month!!

Well, somewhat to our surprise, August has turned into a pretty eventful month for our Luke.

We had been told that once Luke was eating well and not using his feeding tube for three months straight, they would consider removing it from his belly. We were getting really close to having reached that goal. Besides taking 8 oz bottles on a regular basis, Luke has also made a decent transition to solid food (although he's not a fan of peas or green beans...or anything that's not sweet. Not yet! I'm workin' on him!). So, we felt very comfortable getting the feeding tube taken out. When I called to schedule, they said we could come in the next week. Great! On Monday, Aug. 10th, Luke had his feeding tube removed!! So far things look good. The "wound" (insertion site on his belly) seems to be closing up nicely. We have to keep some heavy duty gauze on it for now and change the dressing often, but by the end of next week, things should be better. Pray that everything closes up on its own. In some cases, the hole doesn't close and they end up having to do surgery to stitch it closed. But right now it looks like Luke's is closing and healing on its own. Thank God!

In an earlier post, I mentioned a recent EEG that Luke had, showing that he is at a high risk for seizures. Truly appreciate all of your prayers in regards to this aspect of Luke's health. We still have seen no seizure activity and thank God for that! Andrew and I really felt like we needed to go and consult with the pediatric neurologist after hearing the news on the EEG results. Again, the Lord helped us. It is usually a long wait to see this doctor. When I spoke with him over the phone, he had told me that we could come in at the end of year. I called back to ask to be seen sooner and we got in last Tuesday, Aug. 11th. :) The neurologist was very thorough and took a lot of time to visit with us and explain the results and his opinions on things. I can't really say I left with a peaceful feeling in my heart though. Something about this aspect of Luke's care just doesn't sit right with me. For now, we are following this doctor's suggestions: that Luke be taken off his current med, Phenobarb, and switch to another anti-seizure med, Topamax. The plan is for him to stay on this med until July 2010, at which time he will have another EEG to determine if he is still at risk for seizures. Keep praying with us on this. We've been made aware of a couple of different resources....experts in this field of medicine. We hope to follow up with these and make the very best decisions for Luke. In the end, it could be that we are already doing what's best for him. We just think we need to do a little more research until we can rest easy, knowing he's getting the best care.

The last thing I'll mention is Luke's upcoming eye surgery. Again, another surprise!! Luke had his eye appointment on Aug. 3rd. This was a scheduled check up and a time to discuss a possible surgery date. The eye doc had told us three months ago that he would like to do surgery to correct the crossing in both of Luke's eyes.....sometime after he turned one (October most likely). Well, at this this last visit, Andrew and I decided to go ahead and request an earlier surgery. Some of the research we've done has shown that performing this surgery BEFORE the age of one can actually lend the best results. We just really had a desire to have this done as soon as possible for Luke. To our surprise, the doctor responded, "Ok, let's do it in a couple of weeks!" So, Luke goes in at 6:30 am on Aug. 21 for outpatient eye surgery. We are anxious to see the results of this surgery. At the very least, it is a cosmetic fix. At the very best, it will improve Luke's interaction with the world around him and improve his development. Crossing of the eyes can cause double vision, dizziness, headaches, loss of depth perception, confusion since each eye is sending a different picture to the brain..etc. Since Luke can't tell us what he suffers from, we can only guess that he might be experiencing some these things. We are hopeful that the surgery will correct these issues and help Luke in so many ways!! His motor development has been delayed as he is still working on holding his head up, sitting up without support, rolling, etc. He's accomplished all these tasks, but he shows a lot of weak muscle tone in his upper body, and so these tasks are difficult for him to really master. We continue to pray constantly for God to complete His perfect work!!

The boys are both such great babies and it's so exciting to watch them grow and develop. We have A LOT to be thankful for!! Will keep you posted on the outcome of Luke's eye surgery. Thanks for praying with us NEXT Friday, Aug. 21st!

On the move!

The boys are getting more and more FUN! Don't be mistaken...parenting has been fun from the beginning (minus the NICU stay). Any mother of twins can tell you though, that the first few months are just...well....WORK! There's just no way around it. Infants require a lot of attention and when there are two, it's simply double the work. I feel like we're finally getting into the season of double the FUN! :o) I recently posted a video on my Facebook page of the boys laughing at each other. It's the best sound in the world I think. More and more, they are starting to not just notice each other, but really interact. This has to be the best part of having twins. If it's true what they say, that the best gifts you can give your children are a healthy marriage between you and your spouse and a sibling, then twins have it pretty great if you ask me. A sibling right from Day 1!

Another fun moment over the weekend was watching Caleb army-crawl. Crawling is a progressive sort of skill....little by little babies sort of get better and better at it. Yesterday, I decided it was time to finally, officially mark the date (July 26th!) that Caleb started crawling. Andrew and I were getting ready for church. Normally we can leave the boys on the floor with a big pile of toys and they are pretty occupied for at least a few minutes. Yesterday morning, we did the same. I kept going back into the living room to check on the boys every minute or so. Well, in about 45 seconds flat, Caleb made it across the living room to the lovely green plant in our entry way and was about to have himself some breakfast!! Let the real fun begin!! So, now I'm off to baby-proof what I thought was already a very baby-proofed room. :) Mommy has a lot to learn!

Asking for more miracles!

I've never seen Luke have a seizure. Each time Luke had a seizure in the NICU (I'd have to look back, but I think he's had 5-10 total), I was never around for some reason. Andrew was bedside for a couple of them and by the look on his face when he walked away from the bed and toward me, it's not something you want to witness. When I think seizures, I thing shaking of the arms and legs....rolled back eyes, etc. This isn't always how it is. In Luke's case, "having a seizure" meant a stiff body, constricted airway, skin turning blue and usually 2 or 3 nurses standing by "bagging" him. (think CPR).

So......you can imagine our disappointment this week when Luke's neurologist called to tell us Monday's EEG shows that Luke is at a high risk for seizures. The news hit hard. To tell you the truth, I haven't thought much about seizures for a very long time. We have a bottle of little white pills on our kitchen counter that say on the label,"In case of seizure, crush half pill and administer to child", but I really never thought we'd use them. In that past, Luke has had a seizure when he was A) critically ill or B) in the process of getting on or off a ventilator. We haven't seen any signs of seizure activity since we've had him home. The doctors have seemed fairly confident that Luke would outgrow whatever phase this was and would go on to lead a seizure-free life. And while he's been on anti-seizure meds for months now, it's been the same dosage. This means, that as he is growing (and, thank God, he's grown A LOT!), he hasn't required any more meds. So, all of this led me to believe, that even though we give Luke anti-seizure meds in his bottle twice a day, he really doesn't need it, and come July 13th when he had his EEG, the test would show that everything was normal and we could start weaning him off these meds.

Well, that's not the case. I really don't know many other details right now, except those words the doctor said over the phone..."It's way to risky to take Luke off his meds. He is at a high risk for seizures." He continued on with some generalized statements about the pictures of Luke's brain waves on the EEG and seemed, well, not so pleased I don't think with what he saw overall. Although the doctor didn't want to see us until October, I called and requested (perhaps insisted) that we go in as soon as possible. So, we will visit the neurologist on Aug. 11th, ask all of our questions, and, hopefully, have some more answers then.

This is what I know.....I don't want Luke to have another seizure...ever. So, I'm praying that he doesn't. I'm praying for God to continue what we KNOW He has started in Luke...a COMPLETE HEALING of his brain....for perfect order to be restored...for damaged parts to be made knew and for his motor/language/intellectual development to continue without any complication. I'm praying also that, since I am his primary caregiver that I will act quickly if there ever is an emergency and that I give Luke the best care possible. Finally, I'm praying for God's peace to settle down deep....really deep in my heart. I have to be honest and say the doctor's words have sparked new fears......do I let him sleep all night without checking on him...can I leave him in the church nursery, what if I walk in the room to find him in the middle of a seizure, what if he seizes in the car, what exactly did the doctor see in the EEG, will Luke be normal, etc...... as a parent, you can imagine all of the thoughts that begin to race through my head. I serve a God of peace and I'm praying he settles all of these fears and helps us rest easy knowing He really IS IN CONTROL.

The reality is "they' (and I'm referring to the medical staff in general....everyone who is overseeing Luke's care) have told us many things that haven't been true. Don't get me wrong. I adore medical professionals in many ways. They are true heroes, saving lives everyday. It's just with Luke, "they" have a terrible record. Just listen to what "they" have said about Luke:

* On the morning of my delivery, "they" said Luke wouldn't live.

* On the afternoon before Luke was scheduled to have a shunt placed in his brain, "they" said there was no possible way for things to improve. It did improve (overnight!) and no shunt was placed.

* "They" said Luke may not have enough intestine left after surgery to be normal. Instead he grew back all of the intestine that was taken out.

* When Luke became critically ill after intestinal surgery, "they" said Luke wouldn't make it through the night.

* "They" said it would take months for Luke's digestive system to get back to normal and that he would have diaper rash for two years. He has no rash.

* "They" said Luke would most likely struggle to learn to suck and eat from a bottle and that he may go on to have oral aversions to solid food. Luke has been drinking bottles like a champ since he got home and is now eating full jars of baby food and crackers.

* "They" said Luke's right optical nerve was 60% the size of what it should be and would not grow to normal size. At last check, both eyes have normal-sized nerves.

Do I go on? There's more....but I think you get the point. I think their predictions are right..in the natural sense. But God has supernatural plans!! There is no doubt!

Will you say a prayer (or two or three!) that Luke's brain will be healed completely? Pray for seizures to never be an issue and for Luke to be able to catch up developmentally to where he should be. We need miracles...that's for sure. God can do it. We get emails and cards and phone calls often, even still, with people saying God keeps reminding them of Luke. We keep praying.....and I believe God will keep answering.

Thanks for praying!!

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!!