Catching up

Elijah weighed in at 7 lbs 11 oz at his check up today. That's how much Jack Jack weighed when he was born. A few more ounces and he'll overtake Rose's birth weight.

The pediatrician was really happy, so we don't have to go back until his regular two month well check. Wow. That's only four weeks away. Christmas is less than four weeks away!

We've still got a kitchen cupboard full of Halloween candy, and we've been eating turkey since last Thursday, with no less than three complete Thanksgiving dinners with different family members. One of Jack's cousins asked me if Ellen eats meat, because she saw her with a plate of raw vegetables and ranch dressing. All the turkey, cranberry sauce, rolls, dressing, potatoes, and pie you can eat, and my kids fill their plates with carrots, celery, cucumbers, cauliflower, and olives. They did actually like the cranberry sauce, though. It looks suspiciously like Jell-o.

Elijah's pediatrician was sure I had been slipping him turkey and dressing all weekend. How else to account for his awesome weight gain in less than two weeks?

I laughed so hard I forgot to be mad.

Three stories. True stories.

Uncle Richard went dancing last night. Ellen thought that was hysterical. When I asked her about it this morning she said, "Yeah, Richard said he was going dancing. A boy dancing? I totally laughed so hard."

This morning on the way to church we passed Christmas lights and decorations set up at the courthouse. Jack Jack and Ellen had this conversation:

Ellen: I see Christmas decorations. They light up.

Jack Jack: Yeah, they light up like glow sticks.

Ellen: They're not glow sticks, Jack.

Jack Jack: I said LIKE glow sticks!

Ellen: They're candles.

Jack Jack: Yeah. They're candles.

Jack Jack came over to me right after the sacrament with his shirt completely unbuttoned. When I asked him (in an irritated voice) why he unbuttoned his shirt, he said, "I forgot to leave it on!"

Thankful

Most of my family is getting together at my parents' house today for Thanksgiving. We're not going to be there, but I'm okay with that because we have gotten to see a lot of my family in the past month, and we now live close enough that we'll see a lot of them in the near future, too.

I am thankful for both my family and Jack's family who have done so much for us since we found out about Elijah and moved closer, just so we could be near our families.

I am thankful for my mom and sisters and sisters-in-law who have taken such good care of my kids that Ellen, Jack, and Rose beg to go back to visit and play often.

I am thankful for my father and father-in-law who spent a lot of time waiting at the hospital so they could be there to participate when Jack gave our son a name and a blessing in the NICU before his surgery.

I am thankful for my brothers and brother-in-law who drove me around and let me and my kids crash at their houses.

I am thankful for friends who visited, friends who called, friends who emailed, friends who took my desperate phone calls, friends who sent cards, friends who felt like they didn't do enough, friends who prayed, and friends who continue to pray and love and give.

I am thankful for the sustaining grace and love of my Savior, and for his gospel.

I am thankful for this talk by a prophet of God.

"When we encounter challenges and problems in our lives, it is often difficult for us to focus on our blessings. However, if we reach deep enough and look hard enough, we will be able to feel and recognize just how much we have been given."

I am only just beginning to recognize just how much I have been given, and I am only just beginning to understand that it will always be enough.

Little brother

These kids love their brother. They haven't got to spend that much time with him since we've had him on lock down since we got home, but we're starting to loosen up a little as we all become more comfortable with having a new baby at home.

Rose repeats "bebe, bebe, bebe" to everyone when she gets a glimpse of a baby, a car seat, a baby bottle, or anything having remotely to do with a baby. She especially likes to point out his eyes, nose, ears, mouth, and various other body parts. We haven't tried belly button yet. I think the various scabs and scars on his chest and abdomen might confuse her.

A rare diurnal wide awake moment:

Mostly he gets going late in the afternoon and keeps at it until late at night.

A more typical daytime scene:

When it came time to replace the newborn-length feeding tube Elijah came home with from the hospital, I discovered that the tube we received was one-size-fits-all. Long. And since I'm not as skilled at keeping Elijah swaddled as the nurses were, his hands get loose and pull that tube right out.

Yesterday Jack and I took Elijah to see the pediatric cardiologist in Dallas for a check up. The appointment coincided with mealtime, so I tried to feed him and give him all his medicines before we got there, but all the undressing and dressing and moving from room to room resulted in his spitting it all up on the ultrasound tech as she was doing his heart sonogram. Poor girl thought it was her fault.

Doctor said Elijah's oxygen levels and other vitals are great, and the sonogram shows his heart looks like it's supposed to look post surgery (Norwood with the Sano modification), and he weighed in at 7 lbs 7 oz. Doctor was very, very happy. We go back in a month.

In all the excitement of the day, Elijah pulled his feeding tube out twice. The second time we were not at a place where I could easily put it back in, so I left it out and fed him with a bottle instead of alternating with the tube. He took the extra bottle feedings so well that I haven't put his tube back in. So now instead of every other feeding going in the tube, Elijah gets a bottle of about two ounces of thickened breast milk every three hours. Now that he has gotten used to actually getting something when he sucks, he gets really mad if I try to give him a pacifier. Smart boy.

Mmmm. That's the good stuff.

A highly monitored life

When Elijah was first diagnosed with HLHS in utero, one of the first things the perinatologist told me was that I would have a highly monitored pregnancy. As I quickly got tired of endless medical appointments, I started looking forward to just having the baby. I obviously wasn't thinking past delivery. As Elijah's mom, I still get to go to endless doctor's appointments.

On Friday Elijah saw his pediatrician! He is now 7 lbs 1 oz, 20.5 inches long, and his head is 13 3/4 inches around. Doctor says he has clear lungs and good heart function. That means that although Elijah has an obvious heart murmur, his heart is actually functioning, which is as good as it can be at this point. There's no sign of enlarged liver or spleen, and we're happy with his sleeping and eating habits so far. Elijah can now take a bottle for every other feeding. As his weight gain is our principal concern, we go back to the pediatrician in two weeks for a weight check, instead of at the normal two months.

We'll kick off our frequent trips back to Dallas to see the pediatric cardiologist this coming Tuesday. Little boy is going to be logging lots of miles. Good thing he's okay with the car seat we got him.

We are home and he is still here.

When the doctors told us at the end of last week that Elijah was ready to go home, we were surprised and (a little) unprepared. They told us we could go home Monday (today) as long as everything went well over the weekend. Being discharged from the Congenital Heart Surgery Unit involves lots of check lists being checked off by people who don't work on the weekends, so today was busy!

We had a fun birthday party for Ellen and Jack Saturday evening with lots of uncles, aunts, cousins, and friends. Thank you, Jacksons, Shutts, Motts, and Willinghams!! Jack cut the kids' visit short and drove them back to Nana and Pa's house Sunday morning and then turned around and came back to the hospital so we could take care of details, like learning how to insert the feeding tube, practicing drawing up and administering Elijah's five medications, and buying a car seat. And emptying the breast milk freezer of a couple of gallons of frozen milk. I donated all of it.

You would think that after all we have been through with Elijah so far, things like getting prescriptions filled, unanswered phone calls to the insurance office, and multiple trips to Wal-mart couldn't possibly drive me to tears, but you would think wrong. We could probably also attribute the water works to missed meals, missed pumping sessions, and trying not to miss a feeding while wrestling with a feeding tube in a moving vehicle.

To sum up, we made it home, Jack made it to work, and I think we might have made Nana's day by handing her the baby for a diaper change and then letting her hold him all evening while I paid all kinds of attention to my other three children. Happy three weeks, baby boy! They say we get to do this all over again in six months.

Happy birthday, Jack!

We found out today that Elijah gets to come home! We're still working out details, but probably Monday. Thank you for all your love and prayers.

Food, glorious food

Elijah lost his stitches this morning! His chest looks so much better. The only picture I got also shows him screaming because it was time to eat, and he looks so sad I'm not going to post it. He is generally a pretty calm little boy. He is pretty predictable about crying when he's hungry or needs a diaper change. Other than that, he's a sweetie.

The swallow study this morning was very helpful. The verdict is that Elijah is having difficulties with the timing of swallowing, so some milk can sneak in under his epiglottis. He needs to have his milk thickened so he can swallow without getting any milk in his airway. In the next few days he gets to gradually replace tube feedings with a bottle and work up to taking all feedings by mouth. He'll keep having thicker milk for several weeks and have another swallow study to see how his timing is after lots of practice eating.

AND... Elijah has been on less oxygen today!! Looks like it's time to get a car seat.

Life is so hard...

It's breathe, breathe, breathe all the time.

When I went in for my c-section two weeks ago, the anesthesiologist told me that the anesthesia might make me not be able to feel myself breathing, and if that happened and I started to panic, I should just take deep breaths and I would be fine.

I've taken breathing and eating for granted for so long that when I am now forced to stop to think about it, it's amazing how complex both processes are.

Elijah's biggest challenges are breathing and eating. On his own. He could probably go on quite happily having oxygen blown into his nose and milk pumped into his stomach, but we want to take him home, and that means his little body has to learn to breathe, breathe, breathe, and eat, eat, eat.

Oxygen weaning continues to be on his daily agenda, and after several sessions with the occupational therapist who works on feeding, he's scheduled for a barium swallow study tomorrow morning to see where all that milk is actually going. We hope his swallowing mechanism is keeping food and air completely separate, because if it's not, that may mean more invasive interventions. Sigh.

Sorry if I'm oversharing.

Elijah had a nice, relaxing Sunday. He slept in, had some tummy nap time (which I am under no circumstances to try at home, but it's okay at the hospital because they have monitors), worked on his tan, had lovely milk delivered directly to his stomach, endured several diaper changes, rested with Mommy, and turned in early for a good night's sleep.

Now to the oversharing part. Feel free to click on to your next favorite, less personal blog.

I read this article tonight. Several days ago the nurse taking care of Elijah mentioned that the section of the hospital milk freezer alloted to me is running over, and perhaps I can keep the milk I pump over night in the freezer at the hotel. Soon after that I ran out of bottles to keep milk in, and because I couldn't think of a better option, I had to just pour it down the drain.

I've been keeping track of how much milk I'm producing, and tonight I calculated that just in the past few days I've thrown away over 100 ounces of milk, the minimum amount a mom commits to donate here. I personally find that appalling, so I'll be making a phone call tomorrow to find out how I can help someone else's baby, instead of throwing away another $800 worth of milk. And you thought I was kidding about being able to feed every newborn in the unit.

Elijah's suite life

While I've been loving on my other three kids for the past two days, the occupational therapist has been in to see Elijah and try feeding by mouth twice. After seeing him have a little difficulty, she recommended having an ear, nose, and throat doctor come in and check things out. Yesterday afternoon the ENT came and put a scope down Elijah's nose and throat for about 30 seconds. Elijah's vocal chords are moving the way they should. That's good. There's lots of swelling from reflux. That's bad, but not unexpected.

So Elijah is on prevacid for the reflux, and he gets a break from mouth feedings at least through the weekend. After the ENT talked to me, he gave his report and recommendations to the doctor in charge, and she came back in to talk to me and answer any questions. My parents were both here, and she explained to them and me that Elijah is doing better than anyone has expected him to from the beginning. His lungs are both looking great now, and there is no talk of him needing to go back on a ventilator. Lung conditioning will continue as needed, and his oxygen support is greatly reduced.

The reason we're in this corner room that's twice the size of any other room in the unit is because they were planning on him coming out of his first surgery still on a heart/lung bypass machine, and they thought he'd need the extra room for lots of extra machinery and equipment.

He hasn't needed any of that, and has been reaching milestones at a pace that has pleased and surprised his caretakers. I know that Elijah has many, many people who love and care about him, and who are praying for him and his recovery, and I thank you again.

Jack took the above picture one of the first days Elijah was here. As of today, the two roll-in monitors (the ventilator and nitric oxide) on the left are gone. The five containers on the ground were for drainage and are gone now. We're down to four green glowing screens, not the twelve pictured, and one of those is just for breast milk and goes directly to his stomach. This morning he's resting so comfortably on his stomach that the monitor sounded an alarm because his heart rate was so low. I wouldn't have thought a week ago that my biggest concerns would be feeding Elijah and taking care of a diaper rash, two very normal baby issues, but on his 12th day of life with us, that's where we stand.

Fair Park

While Jack and the kids were visiting we went to check out the museums at Fair Park here in Dallas. We spent Friday morning at the Museum of Nature and Science. The kids loved it.

When they come back for Jack and Ellen's birthdays next week we'll try the aquarium.

Daddy

Siblings

Jack brought the kids to see me on his days off, and Ellen and Jack Jack are old enough to visit their baby brother.

Thursday morning we met with the child life specialist, Margarita, for an "emotional assessment." She brought a baby doll and a tub of syringes, tubes ("straws" for food and medicine), monitor wires and stickers, an oxygen mask, a stethescope, and an IV bag.

She explained what everything was, let the kids touch and play with everything, had them try it out on the baby doll, and told them they were things they might see around and on their baby brother.

Then she brought them each a bag of supplies to take home. Gloves, a paper mask, a syringe, bandages, cotton balls, antiseptic wipes, and a hairnet. They love playing doctor anyway, so they were in heaven. And distracted from playing with non-toys in the waiting room, like the water wall.

Then Ellen had her temperature taken and went in with me to see Elijah. Jack Jack didn't want his temperature taken, so after we were done and all packed up in the car about to leave for the day, he realized that everyone but him (Rose doesn't count) got to see Elijah, and he started crying. So he agreed to have his temperature taken, and I took him back up, and he got to see his brother. And look out the windows of our third floor corner room at all the cars, the helicopter landing area, the park across the street, and the entrance to the children's hospital.

The first thing Rose did when Margarita brought out the baby doll was try to pull the feeding tube out of the doll's nose. That's why you have to be at least three years old to actually visit.

Sleeping baby, happy mama

Oh, the joy...

of watching my little boy fall asleep in my arms. I haven't seen him this still and content since he's been here. The nurse has assured me that he's not sedated, just happy. So am I.

Gray days

It has been raining all day today. I love how green the rain makes everything, but the cloudy gray weather matched my mood this morning.

As much as I would love to post only the happy things, we knew from the start that this road would not always be smooth. What would faith be without the trial, or miracles without the work?

This morning Elijah started "lung conditioning" because his right lung collapsed sometime between extubation yesterday morning and his chest x-ray early this morning. That is always one of the risks of extubation, and even though the doctors were completely calm and reassured me over and over that Elijah still looks great, a lung collapsing still sounded super serious to me.

So they continued blowing air down his nose and mouth (lung conditioning) every two hours, turned him on his left side, and the doctor said that his lung already sounded like it was reinflating after the first treatment. They took another chest x-ray at 4:00 pm and came back with good news: two of the three lung chambers on the right side had reinflated, and they expect the other chamber to improve through the night.

As long as he continues to improve, they will not have to put the breathing tube back in. The lung setback will not keep them from removing the blood pressure monitors resting on his heart early tomorrow morning, and his vital signs have been good all day.

I like to let the nurses and doctors do their work, but I'm a mom and I want to nurture, too. Our nurse today thought it was a great idea for me to dip my finger in breast milk and let Elijah suck on it instead of a pacifier. He figured out how to suck really quickly, and that if he opened his mouth, he could get more. I would say it's the least I can do, but it's actually the most I can do at this point, and I am anxious to do more.

All in the family

Everyone who has seen Elijah in person either tells me he looks like me, or he looks like Jack Jack.

Now that I can actually see Elijah's face, I do see the resemblance.

Elijah David, 7 days old

Jack Arthur III, 2 days old

New hardware

This morning Elijah went from this:

to this:

Happy one week old! It feels so good to have a nose again!

Elijah was extubated at 9:55, and is now breathing completely on his own. He's getting oxygen to make sure his saturation level stays high. He spent the rest of the day recovering and working on getting his voice back. We heard some hoarse little cries today, but they tell me that by tomorrow he'll be able to protest vocally every time I change his diaper.