Adding to the list....

We took Eli in for his ENT appointment today and came out with a lot worse news than we had expected. Dr. Sidman, who is another AMAZING doctor--we really have been blessed with the absolute best drs, stuck a camera down his little throat and determined that there is something constricting his upper airway passage. He couldn't get down far enough to see exactly what it was, so our little man has to go in for surgery on Friday so they can determine what's causing the constriction. Dr. S thinks it could be one of two things. It could be that surgery/intubation/extubation has caused cysts to form, in which case they'd just have to pop the cysts and that would be that. We are hoping and praying for this option. Or it could be that Elijah was born with yet another birth defect where his airway was not formed correctly, in which case they'd need to reconstruct the airway. This would be a pretty signifant surgery and would possibly require Eli to have a tracheotomy for a few months. This would be absolutely poopy, so I'm asking God as I type that this not be required. We'll get this figured out and get another obstacle behind us. I'm soooo glad that I pushed for getting into the ENT. The G-man suggested it at our last visit, but wasn't adamant about it, so I'm glad I called and got him in right away. His wheezing has just been progressively getting worse, so I knew something was up. I was just hoping it was something simple, which it could still be. I just hate that we have to go back to the dreaded hospital.

We'll be in the hospital overnight Friday night since Elijah will need anesthesia and they'll want to keep an eye on him post-op. We should be home Saturday, barring no complications, and hopefully with good news. Please say some prayers. We are really hoping this is not going to turn out to be a big deal.

Some cute pics to lighten the mood...


Sitting up like a big boy in his new Bumbo chair


Smooches from Mommy. I think he gets a thousand of these per day.


Lately when we feed Elijah, he completely sprawls out on us. He stretches his arms and legs and leans back and just relaxes while gobbling down his bottle. Look at those chunky thighs!

Mommy the PT

Elijah had his PT visit today and it went well. His plagiocephaly is borderline for wearing a helmet. We need to get his head reshaped within the next few weeks or he'll have to get fitted for a helmet by a plastic surgeon. In order to do the reshaping, we need to be diligent about keeping him off his back as much as possible. That's going to be a bit of a challenge when he 1) hates tummy time (unless he's napping), 2) has to sleep on his back at night (SIDS prevention) and 3) cannot sit up on his own. This means that Mommy and Daddy have to be constantly holding, supporting or repositioning him. She stressed the importance of LOTS of tummy time, which we have been doing, so we'll just continue with that. He is pretty far behind in his gross motor skills, thanks to hospital time and recovery post-surgery, but with some hard work in the next month or so, I think we will be able to catch up. We are also going to get him a Bumbo chair, which helps to hold him in a sitting position. It's funny to watch him in that because his head just bobbles around. :)

It's going to take some hard work, but we can do it!

My first real food!

Elijah ate his first non-milk meal tonight--rice cereal! He appeared to enjoy it, as he slurped and spit it all over the place.

We did decide to get him into see an ENT, so his first appointment is next week. Hopefully we can figure out why he is so wheezy and squeaky. Wednesday is his PT appointment and I've been trying sooo hard to get his neck stretched out as much as possible and turned to the side without the flat spot so we can avoid the helmet.

He has shown very positive signs of maturing in the past week or two. We can actually lay him down for a nap and get him to sleep! We do have to soothe him every now and then, but we don't mind....he's actually napping!

Cardiology appt today

We are just getting settled after Eli's doctor's appointment today. Concerning his heart, everything looked GREAT! He had to have an echo done today, which we didn't expect, but the results were good. The "work" done to his heart is functioning perfectly with no surprises. His oxygen sats were at 88%, which is perfect for him. The plan is to get another heart cath done in the near future, but we still aren't sure exactly when that will be. We'll keep bringing him in regularly to get things checked out and Elijah will determine how soon that happens. It could be next month and it could be in October.

A point of concern right now is his breathing. I had mentioned before that he has a bit of squeakiness when he breathes and sometimes it seems like he's working extra hard. The G-man said that his lungs sound perfect, so that wheeziness may be a result of a few different things. It could be that he is showing signs of asthma (yucky) or it could be airway issues caused by intubation/extubation/surgery, and in that case it would get better with time. Whatever it is, if it continues in the next week here, we will need to bring him into an Ear Nose Throat specialist to get things checked out. Yes! Another specialist to add to Elijah's list!

Next Wednesday is his first Physical Therapy visit. We'll hopefully get some insight on how to help out with his plagiocephaly (flat spot) and torticollis (tight neck muscle). We have to go to weekly PT appointments because his flat spot is actually pretty bad. Because he was on his back for so long in the hospital and because he was unable to be on his tummy for 4 weeks post-surgery, his head automatically falls to one spot. If it is bad enough (the PT will determine), he may have to wear a helmet for a few months to help reshape his head. We're hoping we can correct it without that. Dan and I have done our very best these past few weeks to get his little head turned the "other" way so that we can avoid the helmet. We've also been putting him on his tummy quite a bit, but he just doesn't seem to want to lift that big head up too much yet. Most days I feel like I'm his physical therapist instead of his mommy. We work on rolling and tummy time and neck strength and stretching AAaaaaallllllll day long! He brings a few extra challenges, but at the same time he brings so much joy to us that we cannot imagine life without him. Our little miracle man!

Elijah's little buddy

It is 3:30 in the morning and I cannot sleep because our dear friends Tim and Katie are going through so much right now and I can't stop thinking about them. Their twin boys were born 3 months premature in March and they have been living in the hospital ever since. Sam has been "home" (i.e., at the Ronald McDonald House) for a while, but their other little one, Elijah, has been through many struggles and is still in the NICU. I cannot believe the amount of challenges he has had to face, and this most recent challenge is such a huge blow to Tim and Katie. He has been unable to get the proper nutrition (due to many factors) and therefore has fragile bones. They found EIGHT broken bones on his body this week! Poor little guy. On top of that, Chicago is their home (due to being put on bedrest while away from home and pregnancy complications, they haven't been home since Thanksgiving!), and their insurance is unwilling to pay for transport to get their little guy to the NICU there. If they want Elijah home, they would have to pay $10,000 themselves for ambulance transport. PLEASE.....keep these guys in your prayers! It looks like they are stuck here in Minneapolis until Elijah gets better. They are such wonderful people and I just don't understand why they have had to endure so much. If you want to read more, click the "Sam and Eli" link to the right. Does anyone have any ideas about how to get insurance to pay for transport when it's not "necessary"? We need to get these guys home!


As for our little man....I've had a little bit of worry this week. Elijah has had some extra heavy breathing. It sounds like there is a squeaky wheel in his chest a lot of the time. Luckily, we have his cardiology appointment on Thursday so we can get him looked at. I don't know if his little body is still just healing up from surgery or what, but he sleeps sooo much at night. I'm not complaining at all, this is a wonderful thing, but is it normal for a baby to sleep from 5:00 p.m. to 6:30-7:00 a.m. every day? He sleeps that much regardless of how he naps....even if he takes 4 hours worth of naps during the day! What in the world would I do if I had been working this past month? I would have gotten to see my baby on Saturdays and Sundays only. Thank GOD for my wonderful employer. Honestly, what a huge blessing for my family right now. We are so grateful. Elijah needs some extra special lovin' and care right now and I'd be an insane mess if I couldn't see him five days a week.

Back from Iowa

We had a great time in Iowa seeing the Weiss fam. Some were missing this year, but we really enjoyed seeing those who were there. Elijah loved meeting everyone! He especially loved getting so much attention from Emma and Elle. We worked on tummy time a bit while we were there and everyone got to witness him scream his way through that. And that is why you won't believe the pics down below. When we got home today I decided to put him on his tummy for a bit and....HE FELL ASLEEP! I even got him to turn his head to the side that his neck muscles are tight on. Both of my boys are still sleeping as I type (an hour and a half later...amazing!). Iowa must have been what we needed to help with nap time and tummy time!


Sleeping in Great Aunt Cathy's arms...she's so pretty!


View of Lake Okoboji from Julie and Virgil's deck


Chewing on Eli's juicy neck (I can't believe all the stuff that's needed to travel with a little one!)


On the tummy and not screaming?! (Look at our boy's bald head!)






Daddy snoozing, too..

Take me skydiving!

Laying in Daddy's canopy...Eli wants to jump!


Sooooo tired after a day at the dropzone

We took Elijah to the dropzone today and tired him out. Dan made a skydive, but I decided to hold off since our man was getting a bit tired and crabby and we had to get home for bedtime. It has been a year and a half since I've jumped, so I'll admit I've been a little hesitant. BUT...I'm DYING to get up in the sky again! Some people have expressed disappointment in us as parents for wanting to continue to skydive, but it is like being a parent of a cardiac baby....It is something that we could never explain to someone who isn't in our shoes. It is as safe a sport as you want it to be. Yes, accidents happen, but the odds of anything "bad" happening are really very slim. By jumping out of a plane, I don't feel I'm any less of a good mom. In fact, Elijah will have a much happier mom if I continue to jump. It is the most freeing, wonderful feeling in the world. AAaaaaaahhhhhhhhhhhh....can't wait to get up there again! Hopefully next weekend, if the weather cooperates.

Elijah has been doing well this past week. His napping is getting slightly better and I feel like we aren't trying as hard, which takes some pressure off. He is still a great night sleeper and THANK GOD for that. He spent the night at Auntie Lissa's house a few nights ago and did wonderfully, so that is reassuring. We are prepping him for when Dan and I will be gone for three nights in August as we relieve some stress from this past year (in Vegas...wooohooooo!!). It has been quite the year. We've endured more than we ever thought we could in such a short time. But our little Elijah is worth it all. He's such a blessing to us and we love him so much. I thank God for him every day.

We are off to my family reunion tomorrow morning in Okoboji and we're so excited to introduce Eli to the Weiss side of the family. He will love meeting everyone!

Have a safe weekend!!!

My scar

Look how good Elijah's incision is healing up!


Serious conversation with Cookie Monster


In the middle of a trademark Elijah Roar

Male pattern baldness and a comb-over

Daddy and Eli watching golf


I am soooooo cute!


Look at that double chin

These pictures were taken before our boy started going bald! I started combing his hair to get rid of some cradle cap and before I knew it, almost all of his hair was gone on top! We've given him a nice little comb-over and now he looks like The Donald.

We had Elijah's 4-month check-up today. Strangely, he has only gained 3 oz. in the past two weeks. I'm not sure why this is, because he has actually been eating pretty well. He's still in the 25th percentile for weight and height, so the doctor wasn't too concerned. If he continues to not gain much weight, I know his cardiologist WILL start to be concerned. His oxygen sats were at 89-90% today and that's where they were when we left the hospital so that's good news. The doctor was a bit concerned about the very large flat spot on the back of Eli's head, so we now have another specialist to add to his list -- a physical therapist. They will help us to even out his head and stretch his neck muscles. Also of concern is the fact that at four months old, he cannot lift his head on his own at all. His neck muscles are still really weak because he has spent 1+ month of his life in the hospital and another month on top of that unable to lay on his belly because of his incision. This is something else the PT will need to work with him on. We have been trying to get him on his tummy here at home, but he HATES it. He screams his head off. You'd think someone was trying to cut off his leg.

I am basically forcing him to take naps during the day. I sit in his room with him and do whatever I can to help him sleep for two hours twice a day. It's exhausting, and I don't know if it's going to help or hurt him in the long run, but at least he's sleeping. He is a totally different baby when he is rested. He's so fun to be around. When he's tired, all we hear is screaming. That's my motivation to do WHATEVER I need to do right now in order to get this man to nap. The "cry it out" method does not work for him (we found that out the hard way, after a long and grueling week). He doesn't appear mature enough yet to self-soothe, and plus I just hate the thought of his little lungs/heart working too much harder than they already are. Thankfully, he is a GREAT night sleeper, and for that I am eternally grateful. At least we have that!

Our cardiology check-up is coming up in a few weeks and we'll see how much weight he has gained and how his breathing is doing at that point. These two things will help determine when his next heart cath will be. Lately, his breathing has been labored, but it's so hard for me to tell if it's worse because I see him every day. Sometimes I think it looks really bad and other times I don't think it looks too bad. We'll let Dr. G determine that in a few weeks.

That's all we know this week. Send good napping energy our way!

4 months old!

Getting hugs from Pete the Puppy



Today Elijah is four months old! Old man. So apparently the docs don't think a whole lot of his rapid breathing and slight decline in eating. It's not "acute" enough to be of concern right now. There are two things that can be going on: 1) His body is still recovering from surgery and healing up, or 2) He is getting too much bloodflow to his lungs, which is making his body work extra hard. This option is entirely possible because he does have those extra collaterals that are supplying extra blood to his lungs. We just have to wait it out for a while and keep a very close eye on him. If option number two is what's going on, we'll most likely have to do an angiogram sooner rather than later to see what is going on and possibly correct it.

The sleeping is getting SLIGHTLY better. I've noticed tiny amounts of improvement these past two days. We'll take tiny. Today Elijah napped on my chest for TWO HOURS! This has never happened. Granted, I didn't get a thing done this morning and I had to soothe him back to sleep about five times, but at least he slept for two hours!

A bit of worry

On top of not taking good naps and making Mommy and Daddy nearly insane, Elijah hasn't been eating as well these past few days and his breathing is getting very labored. One of the main things they told us to look for is a decline in eating, so I have a feeling that we're going to have to take him back into the cath lab soon for another angiogram. It's possible that he's getting a lot of extra bloodflow to his lungs (thanks to those MAPCAs collaterals) and that is what is causing all of this. I pray that he heals up all on his own so his body doesn't have to work so hard. Poor guy. Please no more hospital please no more hospital please no more hospital please no more hospital!!!

Sleepless days

The sleeplessness that Elijah is experiencing during the day is getting ridiculously out of control, but we are trying to hang in there. He is sleeping great at night! We're just glad to be dealing with "normal" baby issues right now. When he's happy and rested, he's soooo happy! Today we didn't see much of that, but hopefully tomorrow!


Sticking out the tongue


Dressed and ready for church


Refusing to smile today, but sitting up like a big boy!

To be a heart parent...

Terri, another heart mom, sent this to me. Soooo true!

What does it mean to be the parent of a child with a heart defect?

It means going into your baby’s room a dozen times a night just to check to see if he’s still breathing.
It means standing over the crib to watch the chest rise and fall and when you don't see it move, you begin to panic and put your head down close to your baby’s face to try and hear him breathe.
It means that when you don't see the chest move and you don't hear him breathing (because your own heart’s beating is drowning out any other sound in the room), you put your finger under the baby’s nose to feel the air on your finger – until you wake the baby and it stirs – and you're thankful, so thankful that he’s still with you.
It means feeling a huge sense of relief when he hears you and opens his eyes and smiles.
It means saying a prayer of thanks for another day.
It means measuring out his medication and panicking if he spits some of it out. How much did he spit out? One cc? Two or three? Then wondering if you should guesstimate how much more he should have and if you’d overmedicate him.
It means checking his nail beds against your own to determine how blue he is today.
It means asking your husband, your mother, or your sister, “Do his lips look blue to you?”
It means snuggling him in an extra blanket for fear he won’t be warm enough.
It means worrying that even a sniffle could cause an infection that could harm his heart.
It means taking your baby to the doctor and worrying that he will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls his name and takes you straight back to the examination room.
It means knowing that everyday is a blessing and a gift.
It means knowing that you are the luckiest person in the world, just to be a parent.
It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.
It means praying for a miracle to save your baby’s life.
It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief.
It means praying for the will to live, even if your baby doesn’t.
It means your own heart knows a pain, no parent should know.
It means feeling weak, helpless, angry, and depressed because your child’s fate is out of your hands.
It means feeling strong, determined, and brave because you know you have to be.
It means your love knows new unlimited boundaries.
It means your pride in your child’s accomplishments is unparalleled.
It means your pain has taught you a deeper sense of compassion than you ever imagined.
It means we are all united by the same feelings.
It means that we all know the mixed up emotions of dealing with death – but more importantly of living with life.
It means that even though we are strangers, we are more to each other than friends could ever be.
1996, by Anna Jaworski

Post-op visit

Elijah had his post-op check today and it went well! His oxygen sats were at 89%, which is good. His heart sounded good, his xray looked good, his incision looked good.. Dr. G wants to see him back in a month for another check-up and do another heart cath in late August. The results of the heart cath will tell us when his next open heart surgery will be. Also, Eli gained ONE pound in just ONE week! We had actually been thinking that he hadn't gained much, but we were wrong! He is now up to 12 lbs. 12 oz.! "Amazing!" is what Dr. Gremmels said to that. :)

We have been a bit worried about letting Elijah cry too much as we try to get him to nap during the day. He refuses to sleep for more than twenty minutes at a time during daytime hours and we have been nervous to let him cry for more than a few minutes at a time because of his heart condition. We asked the doctor today if we are physically going to harm him by letting him cry in order to get him to sleep better and he said (thankfully), "No!!!" He said that's often the case with parents of heart babies--they are worried about possible damage they will do to their babies by not picking them up right away when they start crying. The bottom line is, in our situation, we have to let him cry a bit because otherwise, HE WILL NOT SLEEP during the day, which makes for a very unhappy little man, and that makes for very unhappy Mommy and Daddy. We need to help him keep his body rested. He is such a wonderful, happy baby when he's rested and we need to make sure he stays that way.

We'll post more pics soon of the cutest baby on the planet!

Honestly, can you get any cuter?

Here are some pics we took today. Dan is the good photographer. We had another day of staying at home so we can get this nap thing down. Elijah did pretty well. We had a minor bump trying to get him to sleep in the afternoon, but we think it will just get better from here. Overall, he was a MUCH more content baby today. Getting enough sleep does wonders!


Snuggling with Baloo and too cool for the sun


The cutest picture ever! Look at that sweet face.


Daddy lovin' on Eli

I just love this guy so much

Elijah is such an amazing little guy. Every day we find new reasons to love him!!! We have recently found that we are having "sleep difficulties," but we are trying to deal with that the best we can. We bought a book today that has given us great insight. While reading it, we both said, "Uhhhhhh, duh, why didn't WE think of that?" So hopefully the crabbiness/sleeplessness gets better in the next few days. Here are some fun pics to share:



Eli has been crabby these past two days, so here we are mocking him a bit. Sorry Elijah. (He was WAILING in this pic...)


Here's a pic of the three of us, Terri. :) We don't take enough of those.


The big pudgy man, while Mommy is trying to burp him. He was burping and sleeping at the same time.


Elijah outside tonight, enjoying the wind on his face. Alise, see the prayer rock that you gave him in his hand! He grabbed onto that and didn't let go of it for a very long time. :) It was so cute.

Pics

What a sweet boy. Don't you just want to SQUEEZE on him???

Our baby is awesome

Elijah is such a champ. It's so hard to believe that less than two weeks ago he had open heart surgery. Babies are sooo resilient and bounce back so quickly. He hasn't shown any signs of pain in almost a week and he is SO MUCH HAPPIER. His disposition is totally different than it was before surgery. He was getting increasingly crabbier and more agitated beforehand and now he's a completely laid back little man. He will sit and talk to us and smile for hours, and that's something that he wouldn't do before. It's so wonderful!!! Thank you Dr. Moga!

Our camera batteries died today, otherwise I would have posted some new pics. I will do that tomorrow. He is so sweet! I can't believe what a handsome, sweet little baby we have.

I have to tell you all about the graciousness of the company that I work for. They realized the need for me to recoup during this time and have given me a bit of time away from work to do that. I don't know of another company that would do that for their employees. Dan and I are really having a bit of a hard time dealing with the aftermath of our baby's surgery, so I am VERY appreciative of this. Thank you Zinpro!

You won't believe this!

We got sent home today! We were expecting to be in the hospital for another couple days, but Dr. G said he was pleased with everything and since Elijah is eating so well, to head home! We couldn't believe it! So here is our man, tired from the whole experience and already taking a snooze (hopefully a long one so Ma and Pa can rest, too) in his swing (nice arms).



We have to bring Elijah back in for some check-ups in the next week here, and then the plan from there is to do another heart cath in a couple months and see how his collaterals that didn't get surgery this time are growing. If they grow the way we'd like them to, Elijah won't need another surgery for 9-15 more months. If they don't grow the way we'd like them to, he may have to have another surgery in a few months AND another open heart in 9-15 months.

I thought by this point I'd just be relieved to be done and feel nothing else, but that's definitely not the case. I feel like I'm a totally different person after this experience and that Dan and I need time to heal up, too...but in a different way than Elijah does. I feel so many emotions right now....mostly, I feel RELIEF that this first surgery is done. I also feel sadness that our man had to go through something like this (even though he most likely doesn't have a clue). I feel like I don't know how in the world we can possibly go through something like this again. I feel extremely emotionally and physically tired. I feel overwhelmed about all the love and support that was given to us over the past 10 days. I feel even more love for this baby than I could have ever imagined. I feel an amazing amount of love for my husband for being such a wonderful daddy and hubby and for being my rock through all of this. I feel so thankful that God has given me everything I have!

Ok, enough sharing my emotions. We are going to try to sleep now. We are weary!
Thank you SO MUCH for all the support and love. Our little man's journey certainly isn't done, but getting this first step behind us feels amazing.

Oh and one more thing....gotta brag about what a champ Eli is. We had some nurses tell us that typically after surgery, heart babies are crabby and mad and they don't eat and they just cry all the time. They even have a term for these babies: Cardiac Crabbies. Well, I hate to jinx anything here, but our little guy is much more content, smiley and happy than before and he is eating better than he was before. He is defying the odds! He is amazing!!!

p.s. All the nurses LOVED Elijah and thought he was the cutest baby in the hospital, and he was such a little flirt and flashed his awesome little smile at all of them. :)

Happy boy

Yesterday Eli laid like this with his arms straight out at his sides for the longest time. I think he just enjoyed stretching out with his "free" arms. It was so cute.


More arm stretching


Big yawn

Hello, Mama here. One thing the doctors and nurses have been telling us is that Elijah will have a setback in eating after this surgery, so that is what we have been expecting. That is why we are all in awe about the fact that he's actually eating MORE than he was before. Setback? Not for our man! He likes his food more than ever and that is great great news! Not only is he a better eater now, he's also much more content, smiley and just generally more happy. My best guess is that those lowering oxygen sats were starting to make him feel yucky. It's like we have a new baby! And his cheeks are even pink for the first time.

We should hopefully be moving up to Recovery today. We've now been in the ICU for 9 nights, so a less hectic environment (and more privacy) will be quite nice. We're not sure how long we'll have to stay there yet.

Elijah is still doing great. His breathing is still more labored than it should be, but we are keeping a close eye on it. If anything keeps us here longer than we had hoped for, that will probably be it. He gets nebulizer treatments every couple of hours to open up the airways in his lungs, so that has been helping. We still haven't heard back about the cultures that were sent in, but I'm guessing that if he had an infection we'd know about it by now. The yellow stuff in his lungs was most likely old blood (we hope).

It's been a very trying 10 days, but we definitely feel we are around the bend now and on the home stretch for this recovery. We've appreciated all of your prayers sooo very much, and thanks also for the meals and phone calls and emails. We have the most wonderful friends and family in the world.

Good Tired

Elijah had another good night and continues to eat well and be an overall content little man. His neck IV line got bumped out of position and the Dr's were thinking about putting a new one in (which would have meant more sedation) but they decided to just take it out. He's off his Milrinone and the other meds/supplements he takes can be given orally (potassium and lasix). It's very nice to have all those lines out of him, although he'll have to endure heel pokes now when they want to take blood (which will hopefully only be once a day from now on).

His breathing looks better but they want to be cautious so we will be in the ICU for one more night. Elijah did get moved to a side room last night so at least he can have a quieter more comfortable space to get some good rest in. As long as he continues doing well through another night we'll be moved upstairs in the morning to a recovery room (even nicer, bigger more comfortable rooms where we can sleep next to him).

Ma and Pa are a bit tired from the week and all that's happened, but are feeling very good about our boy and his progress. We're hoping and believing that's he turned the corner and will continue to heal up very well.

Thanks again for your prayers and support. We are so fortunate to have so many people standing with us.

Smilin' Sunshine!

Elijah is doing well. The tube is still out and it looks pretty certain that it won't be going back in!
He had a good night, although he was a bit hungry. They let him have a little glucose water before he went to bed and he sucked it right down in about 5 seconds. They continued giving him that periodically through the night and then this morning the Dr. let him start having Mommy's milk again.
We've been able to hold him a lot and he's been a happy, smiley boy!

Today should be a low key day of feeding him and watching how he does. His breathing is still a bit labored but the Dr's don't seem too concerned. His lungs have been sounding good and the X-rays have been clear.
He should be able to get his armed freed from all the IV's in it later (the line in his neck will stay until he's ready to go home) and tomorrow they're planning to take him off his Milrinone (then he'll be drug free!).
The nurse is also trying to get him to a side room so he can sleep better.

It's very nice to have our alert boy back and hear his little cries and coos (they sound quite funny because he's a little hoarse from the breathing tube).

Here's some pictures from right after the tube came out yesterday and this morning. He's been loving the little mobile by his bed and of course staring at his beautiful Mommy!

Warning: The following pictures contain the cutest/most handsome child EVER!




No Tube!



I remember that gorgeous face.



Morning Smiles



Loving the Mobile



Wow, what a wonderful Mommy!

De-Tubed and Waiting

Elijah was extubated again at 2 today. He's really happy with no tube in and has been smiling a lot. He is still breathing a little heavy and working more than the Dr's would like. They are giving some nebulizer stuff every now and then to try to loosen up his lungs and help him breath more freely.

He looks a lot better than Monday but needs to have a good couple hours and breath easier before we are out of the woods.
He's such a strong, tough little guy (he spent all morning without drugs or food and was in a good mood despite all that), please pray that the tube stays out and his lungs adapt quickly.

We'll update you all later and post some good smiley pics of the boy!

Another day

What a sweet boy--lovin' on Baloo the Bear



Eli had a good, quiet night. His xray looked good this morning--even better than yesterday's. So far we've talked to all three docs (separately) and they all sounded positive about trying extubation again today. Now the three of them need to talk to one another to make a final decision. They are being super cautious this time, which is good. It looks like Elijah isn't breathing nearly as hard as he has been the past few days. Personally, with my honorary medical degree that I should have by this point (just kidding), I think he's ready. Yesterday I wasn't so sure, but today I think he is. He isn't on any sedation right now, so it's difficult to see him squirming and basically having to hold him down so the tube doesn't move around and bother him too much. Hurry up and make a decision!!

His oxygen sats are kind of high for him right now--low 90's. That may mean that he is still getting too much bloodflow to his lungs, in which case they MAY have to do another catheterization and put a coil into one of his collaterals. Hopefully we do not have to go that route.

His prelim cultures came back showing no infection, so that's a good sign. He is still getting gunky secretions out of his lungs, but it sounds like that is pretty normal, considering all the moving around Dr. Moga had to do to his lungs while he was working in there. Once he gets the vent out, he can start coughing some of that junk out on his own.

I CANNOT WAIT to hold him! I pray pray pray that I can do that today. We will update again once the three docs have collaborated. Hopefully that is soon so we can stop doing wiggle management. :)

p.s. I had a bit of an altercation with a nurse this morning. My mommy side kicked in and I knew she was being careless and I almost punched her lights out. Don't mess with me right now. Grrrrrrr....

The rollercoaster continues

The plan was to sedate him and keep him comfortable till they attempt pulling the tube tomorrow, but apparently his tolerance is up and nothing is affecting him anymore. He has gotten a dose of Atavan and also Morphine and NOTHING! So he's wide awake...and he needs to sleep! I think there's another drug they're going to try, which I HATE. I hate the thought of all those dopey drugs coarsing through his veins.

Also, some more potential scary news. While suctioning his lungs a few minutes ago, the nurse found his lung secretions to be somewhat mucousy and yellow, which could possibly indicate an infections, which would be very NOT GOOD. That news made me pretty upset because things could get just awful if he has an infection. The nurse sent in cultures and we'll get the preliminary results back tomorrow.

This is the wildest rollercoaster I've ever been on in my life. I can't believe all the ups and downs we have experienced...and the ride isn't over yet. PLEASE please please keep little Elijah in your prayers a little extra tonight. We really need him to be healthy and strong so we can move on. Thank you.

p.s. Sorry if I sound horribly negative. I'm just scared and sad and overwhelmed. We do know things will be ok. It's just a little hard to see that while in the middle of the chaos.

Waiting to Extubate...

The Dr's have decided to wait another day to extubate Elijah. Everything looked good this morning and they turned down his ventilator to almost nothing, but they aren't confident with how he's doing. He's been breathing mostly on his own for the past couple hours but they are concerned with how he's "pulling" and straining for some breaths. They want to give him some more time to get rid of any excess fluids and be sure that his lungs are up for it when they do finally pull the tube.

Right now they are turning up his ventilator and sedating him again so he doesn't squirm so much. It's not what we were hoping for today and we're a bit bummed, but we are definitely willing to wait to reduce the chance of him having to go through re-intubation again. This is what's best for him and that's all that matters right now.

Please keep praying for him, for a good/calm rest of the day and night, and for a successful extubation tomorrow.

Thanks again for all your prayers and support.

Try again

Elijah's xrays looked great this morning, so they are going to try to extubate again today. The xrays looked great the last time they tried, too, so the doctors are being a little extra cautious this time around. We've turned down his vent and are going to just monitor him for a few hours before pulling the tube out. I PRAY that it is the right time! I'd rather have him keep it in for another day or two than have to go through the intubation process again.

He had a very tame night and is being such a good boy today. We had to take him down the hall for a test earlier and he was a trooper. Gotta see that sweet smile soon!!!

We'll update again later, once we see what happens with the extubation. Prayers! Lots of prayers!

Rollercoaster

Yesterday, before we had to re-intubate. :(


This morning, drugged up again..


Sweet boy

We weren't in bed 2 minutes last night before the nurse knocked at our door telling us to come out. I'm sure that's what it's like to hear your phone ring at 2am--you know it can't be good. We ran out to find out that Elijah had had some sort of bronchial spasm and was fighting the respirator, so they had to sedate him and turn up the settings on the vent (which they've since been able to turn back down, thank goodness). No one is sure why it happened because he was fine through the night and hasn't done anything like that since.

We chatted with Dr. G this morning and we are planning to attempt extubating again tomorrow, assuming everything goes as planned today and tonight. Up till yesterday, his oxygen sats were in the low 90s, and although that sounds good, it's actually bad for Eli. His lungs were getting too much oxygen, which was making his heart work harder, which was making everything work harder. Today his sats are in the mid-80s and that is a much better number for him. He really is still doing great. Aside from the weird episode last night, and his collapsed lung, everything is going as planned.

One bit of good news...I believe the chest tubes come out today. We're still waiting to visit with Dr. Moga, but I'd be surprised if he keeps them in any longer.

It is ssooooo very hard to see our little man sedated day after day. :( It breaks my heart. I keep thinking back to our trip to the hospital on Friday morning before surgery and how smiley and happy he was. I am dying to see that pretty smile again! I can't wait to hold my baby!!! I hope last night was the worst we'll feel through this whole ordeal because it sure wasn't good.

Keep the prayers coming....we appreciate it so much!

The tube is back...

We had Elijah off the ventilator for about 2.5 hours before we realized we needed to put him back on it. :( He was breathing extra hard and straining his tummy muscles for each breath, so they did an xray and found that his lungs are still a little wet. Sooooo......the breathing tube is going back in for a while (not sure how long), which means more sedation. We are having a hard time with all of this right now. I JUST WANT MY BABY BACK!!! It's sooo hard not being able to hold him and to see him so doped up and to have that stupid tube back down his poor throat again. Poor little man.

Please pray that his lungs dry out quickly and that they can get him back off the vent very soon.

p.s. It is now a little later in the evening and it has been a rough rough day for us. Eli is all dopey and sedated and that is SO HARD to see after he was so alert this morning. He's a very unhappy guy right now and we may have to sit through another couple days of this. It turns out that part of his lung collapsed when the ventilator was taken out this morning, so that needs to fix itself and he also needs to get a little bit stronger.

Get these tubes out!

We were warned that yesterday would be a tough (if not the toughest) day and it definitely was. Elijah was waking up off and on in a very groggy/drugged state and the day was spent trying to keep him as comfortable as possible. We had a period of time that was a little scary because they couldn't get his blood pressure where they wanted, but eventually they got it under control.
The hardest part was figuring out the right balance of pain medication and muscle relaxers. Obviously he's a baby and can't communicate specifically about what's bothering him so it was a guessing game. When he would wake up he'd wiggle around which would only makes things more uncomfortable for him.
It is definitely NOT a fun time watching your baby cry/cough but no sounds come out (because of the ventilator) and little tears rolls out of his eyes as he looks/squirms around in obvious discomfort.

Even though it was a difficult day, that's the norm after such surgeries and he is still doing great. Last night before bed they gave a steady dose of a drug to help him sleep comfortably through the night as all the other drugs cleared his system (certain drugs affect the lungs and have to be out of the body before extubation).
He had a very good night and is currently snoozing away this morning.
The Dr. just came by and said it was okay to keep weaning him off his ventilator so he'll be able to get rid of that nasty tube in the next few hours. His chest tubes needs to stay in for one more day because of a possible air leak.
Overall he has constantly impressed the Dr's and it's nice to see him being "disconnected." He's off almost all drugs at this point and his catheter is also being taken out. By tomorrow he should have a couple IV's removed (they'll leave the one in his neck) and be on his way to being totally wireless!

We'll get to feed him later and hopefully hold him a little :)

Thanks for all the praying and support, please keep praying for him to continue recovering like a champ.

ps. Elijah's mom is amazing, I think that's helping him recover fast, he wants to be held in those arms!