More Eli Pics

Here are some pics Adrienne took yesterday. With most of his tubes out and wearing a onesie, he's looking more like a "let's go home" baby than a sickly baby.  We're praying for no more setbacks and to bring him home by next weekend.  Please join us in that prayer.

Enjoy!

Today he likes to sleep!

So I think Eli wore himself out with all the crying and eating yesterday. Today all he has wanted to do is sleep. So it's been a much less "active" day for me and his nurse. I had to totally wake him up to eat a little bit ago and he had been asleep for 4 hours! He wasn't happy that I woke him up but he ate and is now back to sleep again. I think he really likes his new "big boy bed". He looks very cozy all wrapped up in blankets. I took some pictures so I will try to have Ryan post them when I get home tonight. He continues to eat well, just less voraciously today than the past two days. But hopefully by tomorrow things will even out. And I am hoping on the floor they will be on a more rigid schedule with his cares and feeding. I know I will be when I get home, so I am excited to get some more consistency with that.

Also, his doctor feels like he is doing really well, and he will probably be on the floor tomorrow. I heard the nurses trying to talk him into transferring Eli today, but he thought one more day would be good. The funny thing is we ended up moving rooms again this morning. For the past few days we have been sharing a nurse with other kids. Well, the kid we were sharing with yesterday and this morning actually got sicker and sicker so his nurse today felt he needed 1 to 1 care again. So Eli got moved to another room with another little baby. So that was fun, considering that we will probably move again tomorrow! But the mom of the other baby is nice, we are kind of on the same pump schedule and she's always waiting outside the room when I get done so we have met each other and spoken. So now we can better plan our times so we are not wasting time waiting for the other person to be done.

So that's about all I have for my update today! I guess quiet days are good.

The boy likes to eat.. and cry!!

Well, I guess Little E is turning into a real baby! Today all he wanted to do was eat, so I am glad his doctors gave him free range to eat as much as he wanted too. Because if he wasn't eating he was crying and violently jamming his fist or binky in his mouth like he might starve right then and there if he didn't get food immediately. What a funny kid!

When I got there today we decided to try breast feeding again, and according to the scale he took like 40 or 50cc!!!! I am not sure how accurate it is though and that is a ton, since he has only been eating about 20-30 at any given time. But then like a half an hour later he was acting like he was starving again, so I gave him a bottle and he ate another 20cc! Then finally he fell asleep and let me go have lunch and take a nap, and his nurse was able to get other things done (she had been holding a lot when I wasn't able to be in the room). Then he woke up starving again and downed 30cc and started screaming for more, so a nurse brought 30 more, which he ate 15cc of. Then he did spit up some of it, but then went back to sleep for about 30 minutes woke up and ate another 25 cc!! So all in all, I think the boy has gotten this feeding thing down, and really likes to eat! His doctors were so impressed with him! Whenever they stopped by they were shocked with how much he was eating (and he was usually eating when they came by too)

The other good step we made today was getting rid of his isolette (incubator) this evening and putting him in a regular crib. So he needs to maintain his temperature while gaining weight over the next 3 days before they would consider letting him go home. But hopefully with the amount of food the tiny man wants to eat, that won't be a problem for him!

So I felt we had another great progress day today. Especially in the world of eating. We have also decided that a moby wrap (thank you Dana!!) is going to be a necessity for him since he likes to be held constantly! His nurses were even joking that they needed one today so they could hold him and still be getting their work done (but don't worry they are not allowed in the hospital so we will continue to hold him the old fashioned way).

Again, continued prayer that he keeps eating lots and lots. And gains weight (I need him to be over 5 lbs before we take him home so I won't have to buy another car seat for like half a pound!). Also that the medicine keeps working on his blood clot. I think they have it under control at this point and the shots don't seem to bother him, but it still freaks me out a bit knowing that it's in there and that he is on blood thinners.

Sorry that this post is so late today. I didn't even get my computer out today until now!

Easier day today!

So far today has been a much easier day for Elijah. Not nearly so much poking and prodding, thank goodness! Yesterday wasn't great, even after all of his tests and blood transfusion, he ended up throwing up his feeds a few times and his belly wasn't able to digest the feeds he was getting, and he had large residual volumes at each feeding time. This frustrated me because we had started out really slowly on feeds, which is good because we are trying to avoid NEC and we want his belly to adjust to having food in it. But the nurses and others working with him yesterday were giving him his full maximum amount feed and he wasn't tolerating it well at all. It made me nervous, given my past experience, I am pretty sensitive to my childrens' digestion. So this morning at rounds we kind of reevaluated his feedings. We decided on 10cc every 3 hours, unless he takes and tolerates more on his own, but the most we would put in his NG tube would be to equal 10 cc, which includes what he eats on his own. This made me feel better since he has proven to us that he can eat and digest 10cc without an issue. I am glad that the neonatologist was able to redefine everything for us today because it's exactly what I was thinking I wanted to do as well. Plus he has a good nurse today who is a NICU and CICU nurse so she has more experience with the little babies than a regular CICU nurse, who, whenever they see Eli always exclaim how small he is and they never see babies that size, I am never comfortable with a nurse who says that.

But after rounds we were able to try breast feeding again. That went really well! I was nervous since it had been so long and he hadn't been routing like he did when he was first born, but once he calmed down enough to realize what was going on he was able to latch and got about 8 cc. And seemed to enjoy it better than the bottle, always a good thing.

So after his hiccup yesterday with his clot and feeding, he seems to be doing better today. His set back yesterday will, however, keep us here for longer, and no one has even mentioned moving to the floor again. So we will keep hanging out in our little room for now!

LONG DAY!!!!

Well, today was a crazy long day for Eli and me. As you read in the previous post they were concerned that a blood clot had formed around his central line. Well they did sent an ultrasound tech down to do an ultrasound. However that was inconclusive partly because he was screaming through most of it and partly because the Doctor wanted to have a look himself to see what was going on. So, after that first one about an hour later, she came back with two doctors to do another one. This time I was already holding him to feed him, so I suggested I keep holding him and maybe he would remain more calm (because I seem to be the only thing that makes him calm down). So I held him while they did another one. They said it would be short but it was close to an hour again, while like 6 doctors stood around looking at the screen discussing what they saw. It freaked me out a bit since in my mind hearing that your child has a blood clot is NOT a good thing or a happy thought. Finally they decided they were done and all left. One doctor stayed to explain what went on to me. He said they did see a clot in there. They decided the safest treatment would be to remove his central line right away and start him on injections of another blood thinner. This injection he will have 2 times a day for at least 6 weeks. I asked if that meant we had to be here for that long, and he said, no, that I would be giving it at home! So that sounds like a blast!!! Then after all that another person came in with an EKG machine and did an echo on him to make sure that the clot didn't get down into his heart, so that was another half hour of poking him with gooey wands! I think that one showed the same thing as the Ultrasound, so that's good the clot seemed, at least to me, contained to one vein.

He is currently undergoing his blood transfusion and his nurse said it looks like its doing some good. She felt his color was improving and his stats are looking better. So hopefully having some better blood will help him to not have to work so hard. He is currently resting and we are going to let him hang out for a few hours and get some good sleep in his warm bed. He had such a long and eventful day we felt he needs to just sleep for awhile without getting bugged by us.

As for me, I am planning on spending the night with him tonight because I don't like to leave my babies after they have bad days! But hopefully I will be able to get some OK rest here in his room as today was a big emotionally stressful day for me as well.

Again please pray that this clot is nothing too serious and the medicine will help to allow it to break up and disperse itself back into the body without any other problems! Also I would love prayer for my rest tonight! I have been able to nap here pretty well, so hopefully I will be tired enough to sleep well too (granted I do only get to sleep 3 hours at a time, but that's a given no matter where I sleep).

PS: Hopefully this made sense, I am really tired!!!

Small set backs today

Don't get too alarmed though, Eli's still doing well. But when I got here today they told me that his central line may have a clot in it and they haven't been able to draw labs from it today. So they are going to do an ultrasound on his neck today to see what's going on. The doctor said that if there was a clot they would just increase his dose of Heprin (the drug he's on to keep his blood thin) until the clot breaks up and then will take out the central line. If there is no clot they will just pull out the central line. They were able to get an IV in him today, but in his head, poor boy. All of the places in his hands, arms and feet are too small or have been poked too much already, and wouldn't be able to hold an IV. He has had a big day and still has a big day ahead of him with all of the stuff they want to do to him.

I also just got back from eating lunch and his nurse said she got a lab back on him that his hematicrit level was really low, and lower than it was yesterday. So they are ordering him blood and he will get a blood transfusion this afternoon sometime. We are hopeful that it will increase his energy so he will be able to eat more too. This happened to Caleb as well, and he seemed to perk up after his blood transfusion, so hopefully it goes well and will help Eli improve a bit. We are requiring him to be awake so much more for feeding and that just seems to wear him out. We had to gavauge (give him his food through his NG tube) all of his 12:00 feed because he was so tried. So he needs a little boost of energy.

Also it looks like we won't be heading to the floor today since there is still a long line/ waiting list ahead of us, so that's kind of lame. But they are still working on everything they would be working on on the floor, so that's good. His nurse today said maybe a little later we could take a walk down there and meet one of the charge nurses and see what goes on down there, so that will be nice.

That is about all for today! Keep praying that these little bumps in the road stay small and don't become larger bumps in the road.

Update for Wednesday

Well Little E had another good day yesterday and today. Yesterday they finally let him eat again, which he was very happy for. He ate like a champ at his 7:00 feed and downed an entire 8 mL! Which isn't a lot but for a tiny baby who hasn't eaten in over a week, it is a lot. We cut him off there so his belly can get used to having food in it again (and so he doesn't get NEC). But today we gave him 10 mL, and he is due to eat again in a few minutes. He is still fast asleep though. I think he likes having food. Plus eating wears him out. But that is such awesome progress, and I am glad the doctors are just letting him eat however much he wants to eat at this point, so he can control how much he eats so his belly doesn't get too full.

Also last night they tried to run a pic line in his hand, which is a stronger form of IV. But they couldn't get one in, so had to leave the central line. Which is lame, but OK for now. Then this morning they removed his arterial line so he has both of his hands free again! So he is down to some leads (which he will have until he leaves and are no big deal to us) his central line IV, but it's nothing like it was a few days ago, and his NG tube which they haven't even used to feed him in 2 days.

He is also on the waiting list for the floor! We requested being sent back to Evergreen because it's closer to home and a nicer hospital for families to stay at. But they wanted him to be watched by the cardiology team for longer so want him to stay here. Which is fine with us, since there's a medical reason to be here. The biggest concern I have is just that feeding is not an emphasis at this hospital like it is at Evergreen and at this point I would like to work on it more. I have heard that Children's routinely send kids home with NG tubes, and I am not really OK with that, I would much rather have him eating his foods orally by the time he gets home. So just pray that all goes well with the feeding aspect of our work now. He is still taking all of his feeds with a bottle because it's easier for a premie, especialy a premie who just had surgery, and they want to measure how much he is getting. Plus they want eating to be a positive experience for him. But tomorrow the OT said that he can probably start trying to breast feed again, which would be great! So pray that that is able to happen and all goes well!

Good Day for Daddy Too!

After Adrienne told me that she got to hold Eli yesterday, I couldn't just sit back and let her have all of the fun, so Caleb and I went to visit Mommy and Eli in the hospital today.  I got to hold Eli for the first time in over a week and it was everything I hoped it would be.  Adrienne had just fed him 5cc via bottle and then handed him to me, so he was content and happy and just melted in my arms.  Good day for Daddy indeed!

I have loved being home with Caleb the last couple days and I think he really likes being at home with a parental unit after the craziness of the last couple weeks.  He's mostly back to his old self being a good, compliant little boy.  Even at the hospital he was back to chatting up everybody and wandering into people's rooms to say "Hi, you're watching TV!" and then walking out.  Luckily everyone just smiles and says how cute he is rather than being annoyed at an invasion of their personal space.

Here are a few more pics of Eli from yesterday and today:

Snug as a bug in a rug

Mommy gets to hold Eli for first time in over a week!

Happy Mommy, Big Brother not so sure

Caleb playing with Eli's "spaceship" bed

Tough little man needs his rest

Even more progress

Man, I am so excited, Eli is making more progress! When I got here this morning, he was not in his room and I freaked out a bit. But this being the 2nd time this has happened to me (the first was with Caleb when he got moved back to the NICU when he got NEC) I didn't freak out quite as much today as I did with Caleb. I figured he had had a good night and they had moved him over to the NICU. So I had to enlist a nurse to help me find him. He wasn't on the NICU side, so we went to ask at the front desk. The lady there was like, "oh I figured you knew he had moved". I don't think they are very communicative there! But she gave me the room number and I found Eli without a hitch. he got moved to a corner double room, so the first little person I saw was a child much older than Eli so I was a bit confused for a minute. But the doctors that were rounding pointed me to him.

So I was able to listen to the tail end of the rounds today. It sounds like they are working to get his central line out and get a pic line in, which will be good, and a less invasive thing. And then in about 24 hours after that happens they will hopefully be able to get the arterial line out as well. The arterial line is a bit of a catch 22 because it is a lot of tubes and wires and this big plastic board, so it's very cumbersome to hold him and it gets all tangled, but it is nice to have in because they can do blood draws through it without having to poke him every time.

I was also able to ask the doctors about feeding him. Yesterday he acted so hungry and he was only getting a 1cc an hour drip of milk, which isn't enough for him. They decided to change his feed schedule to an every 3 hour feed, which is more like how a NICU would do it, and how a normal baby would eat. So I take that as progress too. They also said they would call PT/OT to see about getting him on oral feeds, so I was really excited about that. I guess when babies have been intabated they have a hard time figuring out feeding again, and especially since their throats hurt for awhile after they have been extabated they have more of a risk to aspirate and choke. So they want to watch closely to make sure all goes smoothly.

Also the main cardiologist doctor of the day said that she thought within 24 hours Eli would hopefully get moved to the floor, which will mean working more on premie/newborn stuff and that they won't need to follow him as much on the cardiology side of things. So that was crazy news as well. We we are just chugging along!

I know a few posts ago Ryan talked breifly about our new "friends" we met who came here the same night that we did and we have all been here ever since. But I was talking to them yesterday how crazy it was that a week ago, we were so distressed and we both agreed that last Monday/Tuesday were the worst days of our lives and now as our children are improving every day (their daughter got extabated yesterday) and we are able to hold our little ones again, how much more happy and hopeful we are about life. It's crazy the transformation they have gone through in the last week, and I am sure mine has mirrored theirs as well. We are still not sure when we will be able to be home, and it is still difficult trying to juggle the hospital with normal life and other children (they have 2 boys as well as their daughter who's here). But we are at least on the downhill side of it now, we just continue to pray that we keep heading in the right direction and no setbacks occur!

Progress!!

I got to hold my baby again!!!!!! I am so excited. When I got to the hospital this morning my nurse asked me immediately if I wanted to change Eli's diaper, of course I wanted to! So I got to do that first thing, almost before I even had a chance to put my coffee down! (It was kind of funny since it was a size 1 diaper which is for like 12 lbs and up, and my child is more like 4 lbs, and usually in P (or premie) diapers, so it was a bit awkward trying to put a diaper on that is the size of his entire torso!! But we managed). Then she asked if I had held him yet, and I said no, so she pulled in a chair and we got him and all of his wires ready and I got to hold him for 30 minutes before I had to go pump. He was fast asleep and all bundled so we just put him back in his bed to get some rest. I am glad he is more sleepy today since he seems so much more peaceful.

I have a feeling today is going to be a lot quieter. We did all of his big stuff yesterday and now we just need to wait and let him rest and heal. He still has his central line and arterial line, and those will both stay in for a few more days as they ween him off his various medications. But we can handle lines! Plus having them makes getting blood draws and things easier because they can do that through the lines, without having to poke him more. They were even discussing during rounds, where he should go when he's done in the CICU. They are not sure if he should just go to the "floor" which is a different floor of the hospital and is more like regular hospital rooms and not 1 to 1 nurse care, or if he should go back next door to the NICU. So it will be interesting to see how everything goes in the next few days as we start working on more of the premie stuff again.

I am so thankful he is doing so well and is such an over achiever! It's so great! I know that God has been holding all of us through this because I don't think we would have been strong enough to endure this without knowing that He was in control over the entire situation.

Another big day for Eli!

So today ended up being a huge day for Eli. As I mentioned in my earlier post, they took out his drainage tube and changed his ventilator to a CPAP machine so it wasn't breathing for him this morning. He was doing really well on that so when I had gotten back from eating my lunch they had decided to extibate him. So all we had to do was wait for the doctor to come observe that. However, she was in another procedure so it took her all afternoon to get there.

By the time she came in Eli had been off his meds for quite awhile and was getting pretty alert and uncomfortable. One of the reasons being his central line is sutured into his neck so it doesn't come out, but one of the stitches was pulling at his neck and causing discomfort. It was bothering me so I asked about it and they decided to redo the stitch. After some debate about whether or not we should start pain meds to do it we decided against it, and I am glad we did because I think it was easier to do one stitch than it is to put in an IV, he barely moved. But they were very sensitive to what I wanted and it kind of ended up being my decision to just do it (am I a bad mom!?!?!?)

Then after that the respiratory therapist came in and we got to remove his breathing tube!!! YAY!!! He took a minute to breath by himself easily but finally got the hang of it. He did OK for awhile, but then his oxygen levels started droping so they did have to put him back on a nasal cannual, like he had before. His nurse said that was pretty common though. They also needed to give him some medicine that's like an Albuterol inhaler, to help with the swelling of his lungs and pleura. He was doing well after that, but it made him really awake.

Then after that procedure we took out his catheter and rectal thermometer. So he's back to peeing like a normal baby and getting his temp taking under his arm like a normal baby. So lots of invasive things came out of him today!!

He was doing well, but was wide awake when I left due to the inhaler meds. But his night nurse assured me that he would be fine and he would take good care of him, he seemed like he was going to be pretty attentive to Eli tonight so I felt OK about going home. Plus I wanted to see my bigger buddy at home. Who, by the way seemed in pretty good spirits after hanging out with daddy today and being in a somewhat more regular routine.

It's just me today

Well, as we mentioned yesterday, Ryan is going to start staying at home with Caleb and I will be coming to the hospital. So it's just me today here. It was kind of lame because I got a migraine walking into the hospital and have been napping this morning a lot. I think the stress finally caught up to me, or maybe it was the let down of not being as stressed as I have been all week, or maybe the lack of sleep from not being able to sleep through the night anymore! Who knows, I always have a ton of theories as to why I get my stupid migraines.

Well my Little E is doing awesome today! What a fighter, his mommy is so proud! Rounds didn't occur until 11:00 today, which besides my migraine is why I didn't update this earlier. But the Doctor thought he was doing well. So they took out his larger central drainage tube after rounds, along with the electrodes that were still in place to shock his heart back into rhythm, which I don't think they ever needed to use after his surgery. His nurse, Becky today, said that older kids report that larger drainage tube actually being the most painful thing after surgery so hopefully Eli will be feeling better now.

They also reduced the support of his ventilator. They had to reduce his pain meds, as he's on morphine and it inhibits the ability to breath on your own, being a narcotic and all, so I am hoping he is still comfortable. He seems to be right now, so I am not very worried. So before, his breathing tube had been essentially breathing for him, and he had the option of initiating breaths, or not, and then if he didn't the ventilator would initiate it for him. So, for example, yesterday he was awake for awhile when they took him of the sedative, and then I think he just wore himself out and as they call it, rode the vent while he slept. But they have essentially turned that function off and now it is acting more like a CPAP machine where it pr0vides him with oxygen but doesn't breathe for him. If he does stop breathing for longer than 15 seconds, as he still has some apnea, then the machine will initiate a breath. But I haven't seen that happen yet. He does stop breathing for a few seconds but then self corrects himself. I think the breathing tube is the largest concern I have right now just because it looks so uncomfortable, and when he's awake, I can tell he is not a fan of it. Plus hopefully once it comes out I will be able to hold him again. And we can start feeds again too, which is a good step to going home.

So slowly but surely we are making some amazing progress! And to be honest, not even as slowly as I was expecting. What a strong little guy. Me, being the glass half empty person, still gets concerned that there will be set backs (I learned with Caleb that setbacks can hit you very unexpectedly, so I am preparing myself this time around for that) but I am also hoping that because of all the prayers and support that my little guy will just keep cruising until I can take him home!!!

Saturday Morning Update

Well, it happened--we got kicked out of our room last night.  The lame part about it was that they didn't tell us until about 9pm when we were are all ready for bed.  In fact, they didn't call us or page us, we went down to say goodnight to Eli and drop off the milk from Adrienne's 8pm pumping and they just nonchalantly said "Oh yeah, we're going to need your room back tonight."  Thanks a lot for the notice.  We were pretty peeved about it, but I think we've largely gotten over it now that we had a good night sleep in our queen-sized bed at home.  It also made the decision for us about when to go home and when to get Caleb back from Grandma and Grandpa's house.

So the plan is to get Caleb back tomorrow and he'll be with me (Ryan) at home from here on out.  Adrienne will be at the hospital most of the time.  Obviously I want to see Eli, so on one day a week I will bring Caleb to the hospital and Adrienne will take him to the play room and spend time with Caleb while I hang out with Eli, then another day have someone like a grandma, auntie, friend, etc. hang out with him while I visit Eli, and then Adrienne can stay with Caleb at home for a morning while I tend to Eli at the hospital.  I think this will be better for everybody, re-establish some normalcy and also get some home time for our family now that Eli is in less critical condition.

Now for the Eli update.  He had another good, uneventful night.  As we speak the nurse is taking out 2 of the 3 drainage tubes in his chest and the third will most likely come out tomorrow.  She also put back in an NG tube because they are going to start feeding him again today!  It will only be 1cc/hr to start, but they want to get his digestion system going again before they increase it.  Tomorrow they will probably get a little more aggressive with his feeding.  It sounds like he'll have the breathing tube in until Monday most likely, but it could be as soon as tomorrow.  We'll pray that that's the case.  We are sure looking forward to Eli Unplugged!

We also ask prayer for the family next door to Eli.  They came in the same night as Eli and we have gotten to know them a little bit.  They are a Hispanic family from Puyallup, Novia (mom), Jaime (dad), and their 17 month old daughter Ava.  Ava has a heart condition as well.  I'm not exactly sure what's going on with it, but it is serious and there were a couple times where they thought they might lose her.  She's been stable now for about 48 hours and sounds like they may have found a medicinal solution, but it is still very scary.  We have cried and prayed with them for Ava and Eli.  Thankfully Novia and Jaime are believers as well.  So as you're praying for Eli, send up a little extra love for Ava and her family too.

Continued thanks for your prayers and standing with us through this, good times and bad.

Eli Pics

Here are some Eli pics from birth to post-heart surgery.  Note:  We purposefully left out the more graphic post-op pics because they are fairly personal and in case we have some readers who are a bit squeamish. 

Eli's Birth...



 His First Night...

First Time Seeing Momma... 



In the transport cart, getting ready for his first car ride--in an ambulance!



CPAP breathing mask (pre-op @ Children's Hosp)

Toes (at Children's Hosp)

Fingers (at Children's Hosp.)



Eli Post-Op... 



Eli with cow friend



Stuffed cow friend peeking out to say "Hi"





Thing 2 closed up! Thing 1 breaks down!

Eli's surgery went well, and they were able to close him up without a problem. Sometimes they try to close babies but there is still too much swelling so they have to wait another day, but that wasn't the case with us, thank goodness. He is still sleeping and we hope he just keeps at it for awhile. Tonight is going to be a pretty uneventful night and we will just wait and watch him. Then they will slowly come down on his supports, like medicines, diuretics and respiratory supports. By tomorrow they might increase the rate of reduction, but really it will be up to how well Eli does as he starts having to sustain himself again. So continued prayer that he keeps exceeding their expectations, as he has done so far.

Even through that awesome step forward, today was a tough day for me. Caleb had an evaluation this morning that I really wanted to be at, then we found out that Eli's closing surgery was going to be right when Caleb's appointment was. I had already decided to go to Caleb's appointment so Ryan stayed here with Eli and I went to Caleb's thing.

It was nice to get out of the hospital and go home for a little bit. However, it was really hard to be with Caleb because he misses us so much and I can tell he is very sad and confused. The appointment went well, but was difficult as Caleb just wanted to cling to me and didn't want to do what the therapist asked...understandably. After the appintment we went home for a bit to get some things and eat lunch. Then we came back to the hospital so I could see Eli and Ryan could see Caleb. We got to play in the play room for a long time which was nice. But when it was time to go Caleb had a huge breakdown. For those of you who know Caleb, he doesn't usually have breakdowns and isn't a tantrum throwing kid. So it was really hard to see that knowing it was just an emotional response to all of the stress and confusion he has to deal with, but still try to be firm with our expectations with him. Luckily one of the play room workers there had discussed that with us already, and apparently it's not an uncommon response with siblings. We do have plans to have Caleb come back tomorrow and try to go swimming in the pool they have here, so hopefully by seeing him more often now that our stress with Eli is greatly reduced will make things easier on him (and us).

So continued prayer for Eli's speedy recovery, without any setbacks so we can go home soon. And prayer for our little Caleb that he will know that we love him so much, and all we want is to be home as a family again!

Chest closing time!!

Please pray it all goes well!!

Resting Day

Today was a much more relaxed and peaceful day for Eli.  No major procedures or operations, just lots of fluids, peeing, and general merriment.  The docs are slowly backing off his morphine drip and replacing it with another drug (don't remember the name) that still addresses the pain, but doesn't affect his respiratory drive like morphine does.  The reason is because as soon as his chest is closed up they will begin to ween him off the ventilator machine, in fact today they already started turning the machine down and is doing a lot of the breathing on his own (or at least initiating each breath).  All good news.

During evening rounds, the docs said that they want his fluid level to be -100 by 6am tomorrow, which means they want to see 100 cc more fluid coming out than going in to know for sure that his body can effectively drain itself.  This morning he was at +30 and at about 6pm he was at -30, so he's making good progress.  If he can meet this goal then they will almost certainly close his chest tomorrow. 

Adrienne and I spent a little more time with him today as well.  The swelling around his eyes has gone down quite a bit so he is able to open them and look around a bit more.  We stayed close so he could see us.  It was sure nice to see him being more active and looking around and starting to be a baby again after his surgery.  We can't wait until he is IV and tube free and snuggled in our arms at home.  However the nurse said that once they close his chest and remove the breathing tube that we can hold him again, which will probably be in just a couple days!  Can't wait!  As our friend Holly said, even though we can't hold him right now Jesus can and is comforting and loving him.  That's all we need to know: Eli is being taken care of by his Creator, you can't ask for better care than that.

Please pray tomorrow that the docs will decide to close his chest and that the operation would go smoothly without complications.  The nurse said it should only take about an hour, most of that time will be transferring him from the NICU to the OR and getting all of his wires untangled.  We'll keep you posted on when things will happen.

Continued thanks for everyone's prayer support, we couldn't have done it without you, plus Jesus loves it when his people talk to him so I'm glad to be a part of that effort as well. 

Good night.

Encouraging Words

We had a visit from Boyd, one of the elders of our church this morning.  He blessed us with a simple promise from scripture:

Jeremiah 30:17
¹⁷ But I will restore you to health
   and heal your wounds,’
            declares the LORD...

Thanks Boyd, and Pastor Daniel, for your visits and reminding us that we have our whole church family praying for us and ready to support us in any way.  It is such an encouragment in this time.

Another good night

Eli had a good night, relatively uneventful, which is good a thing.  He had a great nurse last night named Starr.  She gave him a "bath" (basically wiped him down), put a little stuffed cow in his bed for him to look at, and played relaxing music for him on a CD player.  He seemed to just relax and go to sleep.  Thank the Lord for Starr and all of the nurses and doctors that have so lovingly cared for him while he's been here.

They gave him a little break on the extra fluids late last night, but have started them up again.  His urine output is good and the nurse this morning said that they expect to be able to close him up tomorrow sometime.  His fluid level is still positive which means he has more fluid in his body than when he went in, but it's not much and they're hoping he'll pee most of it out today so he can get to a "negative" fluid status.

All in all it was another good night and little Eli is still doing remarkably well.  He's been opening his eyes a bit when we come to visit, so it's nice to see that he's somewhat cognitive about his surroundings.  Also his baby reflexes i.e. being startled at loud noises or being touched, are still intact so that's a good sign neurologically.

Another praise is that we didn't get evicted from our "closet" last night and it sounds like there is still room for us for at least a while longer.  Thanks for your prayers on this.

Keep the prayers coming, we appreciate you all so much!

Wednesday Evening

Eli is still doing well, as in he is still stable. It's been a long day again for us, but at least we weren't under crazy unbearable amounts of stress. A few times we were able to just sit down and relax for a few minutes. We tend to check on Eli every few hours, every time we go see him he is either the same or a little better. They did increase his fluids this morning, and by this afternoon they had seen a little more urine output which is what they want to see. If he doesn't pee out the waste it just leaks out of his vessels, so the more he pees the less drainage he has, so that is the goal. It will still be a few days before they close him back up, but he is taking baby steps towards that goal.

We would greatly appreciate more prayer that Eli will continue fighting and healing! He's made it through so much and he is amazing! But he still has a ways to go. Also, I would love prayer for my stomach. Luckily my headaches have gone away completely, but I think with so much activity and walking around, my belly is taking longer to heal than it did last time. It's quite difficult to be trying to recover from surgery yourself and still try to do everything normally.

Also, another new prayer request. The guy at the front desk told us earlier that the parent rooms were filling up quickly and they might need to give ours to someone else. That freaks us out because we don't want to leave, but wouldn't have anywhere else to go near the hospital, but home. So just prayer that we will get to keep our closet room for awhile!

First night post-op: Success!!

Little Eli pulled through his first night post-op much better than expected thanks to the vigilant prayer covering that you all have made possible. Praise the Lord!

His chest is still open, which is SOP in these cases, to make sure that they have easy access in case something goes wrong and also because they have attached little electrodes on his heart in case they need to zap his heart back into rhythm if it should get off beat. He also has two drainage tubes underneath each nipple . Thankfully he only has minimal swelling, so the doctors are going to start giving him some extra fluid nutrition to see if he will start peeing some more. Having heavier and more regular urine output will indicate to the docs that his kidneys will be able to process and drain the excess fluid on its own and they will feel more comfortable closing his chest and pulling out the drainage tubes. If everything goes well and he keeps making excellent progress they expect to be able to close him up in 24-48 hrs and then the real hard work of recovery will begin.

Also, we were informed earlier that he would have to remain on the ventilator for a week or two post-op, but the nurse and doctor last night said that they would start to ween him off the machine only 24-48 hrs after they close his chest, so that was another piece of good news.

Again, we ask that y'all keep praying especially to help ward off any negative effects on his brain, heart and lungs from the surgery and being on the ventilator.

We love you all and thanks so much for your prayers and willingness to actively participate in Eli's life.

First night post-op

We just went and saw him for the first time after his surgery. To be honest, he looks a lot better than we were expecting. I think the surgeon who prepped us before the operation was giving us a worst case scenario, which was hard to hear at the time but may in fact have been a blessing because now that we're seeing how Eli is handling and reacting to the operation and he doesn't look as bad as we thought. Don't get me wrong, he is still in very real danger and they will be watching him like hawks tonight but our perception is a bit more positive than expectations.

But please keep praying, keep the beacons lit, we still have a long way to go, but tonight is a pivotal night in determining how his recovery will begin.

Dear Jesus,
Please watch over and protect your little Elijah tonight. Protect his heart, lungs, and brain from any detrimental effects from the surgery. Give him strength, healing, courage, and most of all keep him close to You. Let him bask in your healing love. We know You love him more than we ever could.
Thank you, Papa.

Eli's out of surgery!!!

Eli's out of surgery!!!!!! The doctor said everything surgical wise went great. He is doing well at this point. But he still has a few huge hurdles to get over. The first is getting through tonight! His chest is still open, and they don't plan on closing it for a few days so if anything changes they can quickly get to it and they need to wait until the swelling goes down. But just that fact freaks me out and I feel he really really needs prayer for that. At this point I am trying to shield myself from any technical stuff because I just can't handle it, so Ryan may have to update more in that area. But please keep praying for our little fighter! He really needs God's strength for the next few days because he's still in a very very very critical situation right now.

Eli's in surgery

Eli went into surgery at about 1pm to repair the pulmonary veins going into his heart. Everything is going as well as can be expected right now. I have this horrible pager that beeps really loudly every time they want to give us an update. When it goes off it scares me half to death, speaking of which it just went off. Phew, they just put him on the bypass machine and everything is still going well. So far, so good.

We'll keep updating it as we get more reports. The surgery could last any where from 2-4 hours, so we're just sitting in the lounge area biting our nails. I'm probably a little more edgy too because I just downed a grande mocha in about 10 mins, plus my mom brought me some Sour Patch Kids. Gotta love comfort food.

Keep praying!!

Tuesday Morning

Hey Everyone. Thanks so much for all of your prayers and comments and FB posts. I was up early this morning pumping so I thought I would check e mail and such since I didn't really get a chance to yesterday, and it's so overwhelming all of your support and love!

Well, after we posted last night, things kind of settled down. Elijah is kind of at a weird critical age, since he's a premie too. They don't tend to like to do the surgery until babies are past 35 weeks gestation. And he will be there on Wednesday. But at the same time they don't want his stats to keep droping or him to get any sicker. So they spent the night waiting and watching. We checked on him a few times, when I was up pumping, but other than that we got some good rest in our "walk-in closet" room, Ryan is actually still sleeping. But it was nice that we were both able to stay at the hospital and have a private room where we could go and sleep. Children's is not at all set up like Evergreen! At Evergreen the babies have their own rooms with a couch for parents to sleep on and a TV and it's very homey and everything is VERY private (sometimes too private considering we never met a single family when we were there with Caleb). Children's just have more open rooms in a circle around a nurses station, so there's not anyplace for parents to go and be comfortable. So when we got "checked in" last night it was nice to have some peace and quiet.

I spoke with Eli's nurse about 15 minutes ago, and they are still trying to get in a central line, which has taken longer than expected, so pray for that to go smoothly as it's very important. But she said that they will probably give up for the time being. Also Ryan talked to our nurse last night when we were up pumping and his stats have declined a bit, which isn't surprisng and is to be expected, but it wasn't enough to worry doctors into rushing him into surgery. So we are still waiting.

So another crazy thing with all of this is that this heart condition isn't really genetic and no one we have spoken too has ever seen mother/child with the same issue. They say there may be a genetic correlation but it's not common at all, he said it may increase a baby's risk for having a heart defect from like 1% for all babies to about 3ish%, so not a strong correlation. The doctors always start explaining it as if they are explaining it to someone who has never heard of the condition before (and rightfully so) but when we tell them that I had the same thing they look shocked and surprised and sort of freak out a bit! In the midst of it all, its actually kind of funny, I can see their research wheels spinning! But I also can't imagine going through this as a parent not already knowing what is going on and not having experience in this area (Mom and Dad you were amzing when you had to go through this with me!!!). And as much as we are trying to see positive aspects to this sittuation it is still very hard and the unknown is so so so scary right now! So please continue to pray for Elijah, as he will most likely have his surgery sometime today and there are so many risk factors that he is faced with!

Love to you all!

Eli's Heart

The latest EKG confirmed earlier suspicions: Eli has a heart defect. In fact, it's the same heart defect Adrienne had when she was a baby: Total Anomalus Pulmonary Venus Return. Basically it means that the oxygenated blood coming from his lungs isn't getting to the rest of his body as it normally should, which explains why his oxygen levels keep deteriorating.

Ultimately the only solution to permanently fix it is surgery. This will probably happen either late tonight or tomorrow morning. He is stable now, so they have decided to intubate (put a breathing tube in) and control his airway in preparation for surgery but also this will allow them to give him medicine that may otherwise disrupt or stop his breathing if he wasn't intubated.

They have done numerous other tests and scans to make sure that there is nothing else wrong with him and everything has come back clean, so hopefully this is the only thing we have to worry about at this point.

We know that God has a plan for little Elijah and trust that everything is in His hands, so we are trying not to worry or fear about the "what-ifs". We ask for your continued prayers for the pre-and post-op procedures, the surgery itself, strength for Eli, knowledge and guidance for the doctors, encouragement and hope for Adrienne and I, and patience for Caleb because he has no idea what's going on.

Thank you all!

Please Pray for Elijah!!

I don't want to alarm people, but Eli has not been improving in his breathing so this morning they looked into some other aspects of what could be going on. They found some concerning things on an echo of his heart. At this point they are not really sure what is going on, but there is a chance he could have my heart defect. We are getting moved over to Seattle Children's Hospital this afternoon so their pediatric cardiology team can determine what is going on. This has been a very upsetting morning for me. I know (I am living proof) that this anomaly can have amazing outcomes, but it is still so hard to see your tiny baby going through this. Something that I thought the echo we did at our high risk ultra sound had ruled out.

So please be praying for strength for Eli through all of this and also strength for me and Ryan. I have already seen Eli's strength in so many ways, he amazes me with how strong he is! But we really need God's peace and protection right now. I have concluded that my experience here with Caleb has just been my practice run for this little dude.

Please be praying!

So it's me (Adrienne) this time around. Well Saturday (the 12th) was a good day. As Ryan mentioned previously, Eli went on the oxygen on Thursday and Friday still had some bumps in the road while they were adjusting the levels. But today was definitely a "doing the same day". That made me feel a ton better to see that he wasn't declining any, and things were more smooth sailing. He is up to about 10cc on his feeds and they have slowed down on the aggressiveness of the increases for now. That makes me a bit more comfortable considering Caleb's digestive history! But Eli definitely has a desire for food, and is a great binky sucker, which I think will come in handy when they start letting him eat again. For now they give all of his food via NG tube because it's safer with the nasal cannula in his nose, and they don't want him to choke when trying to eat.

When I first got to the hospital today, I was able to have a good stretch of cuddle time with Eli. I was able to snuggle and do Kangaroo-Care with him for about two and a half hours. It was so great to just be able to be with him and hold him, and I think it helped both of us! Even though I could barely move at the end of it, for sitting still for so long.

Also, we were able to have more of a family day today. No one watched Caleb for us and Ryan and Caleb went to the "beach" in Kirkland for a few hours after dropping me off at the Hospital and threw rocks and "bird watched" (Caleb brought some binoculars with him!! Funny kid). Then they came back to the hospital where we ate our lunch and Caleb watched a Veggie Tales and napped. He did a great job at the hospital, considering it's so boring and we were there for a long time. He wanted to say hi to all of the nurses and would stand just inside the door waiting for one to walk by, then he would pounce and tell them all about his toys! Hopefully they weren't too annoyed! But it was so nice to have all of us there, and I think it made me feel better to not feel like I was choosing between Eli and Caleb, and could spend time with both of them.

Another positive note, since my surgery I have had this terrible headache, that was like a really really really bad migraine, and I could barely open my eyes sometimes. My massive pain killers only took the edge off the pain. So Friday night I called the on-call doctor and she paged the anesthesiologist for me. He came and paid me a visit in Eli's room. He was a little concerned that it was a spinal leak, from the spinal they gave me, but it was in the wrong part of my head, so he wasn't quite sure what to think. he said to watch it for another day, and if it didn't go away they would want to take a look and possibly do a spinal block, where they take blood from your arm and use it to create a clot in your spinal cord, to stop the spinal fluid from leaking out. It's a bit of an invasive procedure. He also said to take a ton of caffeine and that would help it... what an awesome medicine!! COFFEE!!!! But last night I drank a lot of water and slept in my own bed, and this morning I woke up and was feeling a lot better. I was really glad since the headache was really debilitating, and not what I need right now! So keep praying that it doesn't come back, and I continue to have improvement in my condition! It's so hard for me to not be able to do anything and be so slow moving!!!

Thank you everyone for all of your prayers and for following our Eli story!

Update: 2/12/11

Overall he's doing really well. His feeding amount is increasing steadily and is more than triple what it was when he was born. His breathing has been a bit labored so yesterday they put him on a high-flow oxygen system to aid his little lungs. It's nothing invasive, basically it's just blowing forced air through his nose via a nasal cannula to help keep his lungs partially inflated so he doesn't have to work so hard. They just did a blood test and his levels are improved, so it looks like it's working. If everything goes well he should only need it a couple days.

He also hit a bump in the road with his feeding yesterday, basically he wasn't digesting enough of it. The doc thinks it may have been because of the amount of air being blown in his air pipe, a little of which may have gotten in his stomach, but also he hadn't had a big stool at that point so that may have clogged stuff up (imagine that, a child of ours having poo issues). They didn't feed him new food for the next two feedings to allow his body to adjust to the oxygen and catch up with the digestion. We were a little concerned that this was going to turn into something more serious.

However, just after we talked about his poo issues, I (Ryan) changed his diaper and found that he passed the huge plug of meconium (black tar-ish infant poo) that we were hoping was in there. Yes! The nurse thought that he will probably have a much easier time digesting now that he had the big stool. Sure enough, Adrienne called at 3 am this morning while we were up pumping and he had digested all but 4 cc's of his food and was allowed to resume feeding, albeit on a little less aggressive schedule.

The doc told us with preemies with respiratory distress you usually see two days of decline, two days of the same, and two days of improvement before things are back on track. Right now I think we're entering the 'two days of the same' period.

On a side note: He seems to really respond to Adrienne's touch and voice. He was in a crying fit a couple times and Adrienne took him out and held him, in minutes he had calmed himself and began rooting for her breast. Thank God for mothers.

More to come later...

-Ryan

Elijah Leighton: 2/7/11, 10:10pm, 4lb 9oz, 17.32 in.

I wanted to start a blog for Eli, not only to update our concerned public on his status, but also to document his birth and life hereto for posterity's sake...plus we did it for his brother and as we all know life has to be fair when siblings are concerned.

Here's his birth story...

It was an unassuming Sunday night/Monday morning (2/7) around 1am when Adrienne came out to the kitchen to sternly encourage me to go to bed and quit playing games on the computer. I "cheerfully" agreed and we got into bed where I promptly fell asleep and Adrienne lay there awake brooding because I can fall asleep in an instant where it takes her an hour or two. Well, about an hour later Adrienne wakes me up and tells me that she just had a few contractions. Thus ensues a panic attack where flashbacks from Caleb's birth story flooded her mind. She immediately starts a bath and drinking water like crazy, which are two things that help slow labor she learned from nurse friends during Caleb's pregnancy. She urges me to call the doctor, so I did and the initial response was to "just wait and see." I somehow got Adrienne to calm down a bit and we both went back to bed.

Once again, I am dead to the world when Adrienne tells me she just had another one. Now I'm a little scared too. I get a little notebook and began to track the contractions. At first they are fairly regular (7-8 mins apart) and then move further apart (every 10-15 mins). Finally we fell asleep after several hours being up and the contractions only came about every 30 mins. Once daylight came, the contractions also increased. We then called the Evergreen Maternity Center and talked to the on-call nurse and she said that we should probably come in and get checked out even though the on-call doctor seemed indifferent.

We made the decision to come in and made the phone calls to the grandparents to tell them what's up. Bruce and Dede said they could come up and watch Caleb while we went to get it checked out. Since they are an hour away, our neighbors, the Brooks' agreed to take Caleb until the grandparents arrived (thank you!). Even though we thought we were just going to get a shot of Terbutaline to stop the contractions and come home, we packed our overnight bag in the event of a worst-case scenario where we would be admitted. And it was a good thing we did...

At about 10:30am we went to the triage maternity center at Evergreen Hospital where they ran tests and monitored Adrienne and baby. At this point the contractions were coming pretty regularly and the pain was getting worse. The nurses and doctor thought that maybe Adrienne had the flu because she had some nausea and vomiting during her aforementioned panic attack, but upon a cervix check it turned out she was actually in labor - 2-3cm dilated. What!? It was hard to hear and even harder to believe. So much for just a couple hour trip to the hospital.

We were promptly admitted and transferred to a labor/delivery room. Adrienne received a shot of steroids for the baby's lungs in case it came as well as a heavy dose of Magnesium to help slow the labor process and for the most part it did it's job. About five or six hours later the doctor did another check and Adrienne had only progressed to about 3.5cm dilated so we kept with Magnesium and thought maybe we had bought a day or two of time before the baby came.

Only a couple hours later (about 9pm) everything seemed to change. The contractions were much stronger, much more painful and much closer together. Adrienne was entering active labor. Our wise nurse saw this change immediately and called the doctor back in and did another check: 5cm dilated and increasing rapidly. "Take her off the Magnesium and up to the OR because we're having this baby!," the doctor proclaimed.

I called Bruce and Dede at our house and quickly apprised them of the situation and asked Dede to come right away so she could be in the OR with Adrienne while I stayed with the baby. After a few minor traffic law violations Dede arrived just in time as we were ready to wheel Adrienne into the OR.

Dede and I donned our attractive HAZMAT suits and met Adrienne in the OR. I was definitely excited and nervous to meet my new child, for one, I wanted to know what the gender was, and two, I wanted it to be healthy (not necessarily in that order). At this point after about 20 hours of labor Adrienne was pretty uncomfortable and was ready to have the baby. Once the Anesthesiologist did the spinal and the meds started working she was as relaxed as one might be in this situation. All of the doctors and nurses in the OR were so great and super nice. Everyone was pretty lighthearted, making jokes and making us feel a little better in a tense situation, but when it came down to it they all did there jobs flawlessly.

At 10:10pm, just 20 hours of labor later, our son Elijah Leighton Howell was born at 4lb 9oz. and 17.32 inches long via c-section (he was still breach). We call him Eli for short. At first he didn't cry, but once the doctors suctioned his nose and mouth, he let us hear it. And man can that tiny kid scream. He is healthy, ten fingers and toes and no visible signs of trauma from the early birth. Thank the Lord!!

Seeing that he was healthy, the doctors gave Adrienne and I a few minutes to hold Eli before he was whisked upstairs to the NICU, which is something we didn't get with Caleb. After we snapped a few pictures, I got to carry Eli up to the NICU while Dede stayed with Adrienne to get patched back up.

Side note: The doctor performing the C-section made a special note to look at Adrienne's heart-shaped uterus to see the mysterious septum we found in earlier ultrasounds. She said that there was no way any kid could flip around out of the breach position in her uterus, so good to know if there are any future children traveling through there.

In the NICU, Eli was given excellent care by a team of wonderful nurses and doctors. He was placed in an isolet (basically an incubator), given fluids via IV, had a myriad of tests run on him, and then determined to be a very healthy boy inside and out. The doctor came in and told me that he looked great, was breathing well, and said that the standard length of stay for someone of his gestational age is about 2-3 weeks. I thought that that was better than the 6 weeks Caleb had to stay in there.

Thankfully, the rooms for the recovering mothers is on the same floor so it was only a short walk back to report on our beautiful boy to the beautiful momma. Adrienne seemed to be talkative and in good spirits, especially after I showed her all of the pictures of Eli. She was definitely anxious to get over there and see him herself, but she had to wait until the anesthesia left her body and she was able to sit in a wheelchair, which wasn't until the next morning.

While Dede was still with Adrienne, I went back over to Eli's room and by that time everyone had left and it was just him and me. I prayed over my little boy and asked God to bring a speedy recovery so he can come home, but more than that I asked that he meet Jesus early on his life and do great things for the Kingdom. I prayed that Adrienne and I would be a part in that.

This whole experience was very surreal and we had a strong sense of deja vu because after all, we had done this before. Caleb's birth experience was actually a blessing and definitely helped us to remain calm, know what to expect, and be much more familiar with the care that Eli will receive.

Thank you all for your continued prayers and support as we continue on the journey home.

We love you all!
Ryanade, Caleb & Eli