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!