*there's a mother's perspective

I found this on blog4chd.com. It’s written by Stephanie Husted, a fellow heart mom.

A Mother’s Perspective

You passed me in the shopping mall…
(You read my faded tee)
You tapped me on the shoulder…
Then asked…”What’s a CHD?”

I could quote terminology…
There’s stats that I could give…
But I would rather share with you…
A mother’s perspective.

What is it like to have a child with a CHD?

It’s Lasix, aspirin, Captopril…
It’s wondering…Lord what’s your will?…
It’s monitors and oxygen tanks…
It’s a constant reminder to always give thanks…

It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held him…(I’d waited so long)
It’s knowing that I need to help him grow strong…

It’s making a hospital home for awhile…
It’s seeing my reward in every smile.
It’s checking his sats as the feeding pump’s beeping…
It’s knowing that there is just no time for sleeping…

It’s caths, x-rays and boo boos to kiss…
It’s normalcy I sometimes miss…
It’s asking do his nails look blue?
It’s cringing inside at what he’s been through.

It’s dozens of calls to his pediatrician…
(She knows me by name…I’m a mom on a mission)
It’s winters homebound…and hand sanitizer…
It’s knowing this journey has made me much wiser.

It’s watching him sleeping…
his breathing is steady…
It’s surgery day and I’ll never be ready.
It’s handing him over…( I’m still not prepared…)

It’s knowing that his heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that he’ll be okay.
It’s the wonderful friends with whom I’ve connected…

It’s the bond that we share…it was so unexpected…
It’s that long faded scar down my child’s small chest…
It’s touching it gently and knowing we’re blessed…
It’s watching him chasing a small butterfly…

It’s the moment I realized I’ve stopped asking why?
It’s the snowflakes that fall on a cold winter’s day…
(They remind me of those who aren’t with us today)
It’s a brave little boy who loved Thomas the train…

Or a special heart bear…or a frog in the rain….
It’s the need to remember we’re all in this plight….
It’s their lives that remind us we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow.

Except for personally knowing someone who hasn't survived a CHD, the heart catheterizations (we know a 3 yr old who has had about ten of them though!), and Will not being big enough to chase butterflies - this is pretty accurate. Because of TOF we always looked to see if his lips were blue, not his nails. We haven't had those exact medications either. Otherwise I find it amazing how similar our experiences are with others. We ALL have these feeding troubles!

We are so very lucky. This could have been so much worse.

*there's tummy time

Thanks so much for continuing to check the blog for Will news! We have hit a bump with his feeding progress so that has consumed our week. Also, I don't think I've shared here that the Dianna family is moving! So in the middle of all of this we have been packing! We are very excited. This is our last weekend in Will's first home.

This week was Will's NICU follow up appointment. I guess that means he's been home for 3 months now! His development is what they would expect for a 29 weeker at 6 months actual age. They were impressed with his neck strength and head control...especially considering he was in the hospital for almost 2 weeks and did a lot of lying around. He will have a 6 month NICU follow up, and I think two more at 9 and 12 months.

Yesterday was our first post surgery attempt at tummy time. He doesn't like it very much but did enjoy watching his toy for a little while. He can hold his head up better than this pictures shows. After awhile he starts to slide down and rests his chin between his hands.

*there's a laugher

Will is officially laughing! Such a sweet sound.

Sleeping right after coming home from the hospital.

Will in one of my favorite outfits:

His hair is pretty cute, huh?

This little toy makes several baby noises. One of them is a kissing sound..."mah!". Every time we hear that one I make it kiss him on the cheek. I love this picture because it looks like he's leaning in for the kiss!

Someone needs to teach me how to use my camera so I can actually catch smiles and laughter on film!

A common sight lately...he has found his tongue.

*there's a first Mother's Day!

But first, a recap of the week:
After surviving the flood, we almost didn't survive the week. Will was crying a LOT. After several calls to the cardiology office we finally ended up at the pediatrician's office. It was the last stop before the E.R. The pediatrician couldn't find a reason for Will to be so upset so she sent us on to the E.R. It was our 3rd trip. We could have gone straight there, but I tried to avoid it. Although we haven't had a bad experience in the E.R., it is still a stressful place that I would rather avoid. Our cardiologist was on the floor in the hospital this week so we couldn't see him during office hours. But by going to the E.R. we were able to eventually see him there. It was finally decided that Will was having trouble weaning off the pain medication. So we were given something to taper off of at home. That helped tremendously and I was finally able to get through a day without having to hold, rock, bounce and shush him for hours. It was a relief to see him feeling more like himself. Even after returning home I made more phone calls to doctors over the next couple of days to get the dosages adjusted. Tonight is the last dose!

Then Friday morning was our follow up appointment with the cardiac surgeon. An X-ray did not show any fluid around his heart, his oxygen saturation was good, and there was no sign of infection! It was a very quick appointment. The surgeon was pleased and allowed me to shake his hand to thank him for mending Will's little heart. I'm sure we aren't the first family to wish we could more adequately thank him for his skill and knowledge. I don't think that is possible so I just said something like "Thank you so much. We're really grateful." He didn't seem to expect anything else. It was just another day at work for him! He did say we could begin to decrease the amount of Lasix we give him to help with fluid retention. And now that he doesn't need medicine for pain several times a day the number of syringes we use daily has decreased significantly! In hindsight, I wish I had asked for more details about the surgery, but I was too excited because he gave some promising news about Will not need his feeding tube much longer.

Friday when we got home, I abandoned Will's feeding routine to see how much he would eat by mouth. It went well! He ate a little...but not enough. By that night we returned to the usual schedule. I was afraid he would get dehydrated and 1) did not want another E.R. visit, nor 2) did I want to put him through the ordeal of getting an I.V. to get fluids to rehydrate him. Will's body and I.V.s do not have a good history. I thought it was just him, but someone in the E.R. commented that heart babies tend to have that kind of trouble. I will call the nutritionist tomorrow morning to get started on a new feeding plan. My personal goal is for us to no longer need the NG tube by June 1st. Cross your fingers for us!

Now for our Mother's Day. We had a plan to get up and drive to the lake to to eat lunch with my parents. But Chris discovered that our kitchen sink faucet was leaking badly. It was decided that he would try to fix it himself and if it was done in one hour we would all go to the lake as planned. He did an awesome job and the new faucet works perfectly! But just as he finished that project we discovered (unrelated) sewer problems. This required a call to professionals. Knowing that their arrival might be unpredictable, the work might be expensive, and the whole ordeal just plain unpleasant, I decided to take Will to the lake for the visit and Chris graciously agreed to stay home and take care of the house. Will was a good little traveler and I was happy to have a little road trip. We missed Chris so much...but considering the stressful situation at home we all ended up happier that we weren't stuck at home wishing all 3 of us were somewhere else.  

Although it was a crazy, hectic week at times, another reason I haven't posted any updates is because we misplaced our camera's battery charger. I found it today - at the cabin at the lake - so more pictures will be coming soon!

So that was our first Mother's day. I guess it was fitting that it was just like everything about motherhood so far - completely unpredictable.  :)

*there's his first natural disaster

We survived the flood! There was devastation in all directions of us but we were spared. One street away there are houses full of water and about 35,000 homes have been without electricity. We could have been trapped in our neighborhood or have required rescuing by boat. 

Below is the inside of the Opryland Hotel. It is about 10 minutes from our house. There is a little river inside the hotel where you can ride a boat, but these are not of that river.

 

 Downtown and various other Nashville spots

  Ghost Ballet sculpture collapsed into the Cumberland River

 Interstate 24

 

 Riverfront became part of the river

 

 

 

We are truly fine and life returned to normal for us when Chris went to work this morning. Amazingly our only inconvenience is that we were asked to conserve water and only use it for baths and drinking. Also we suddenly have ants in our kitchen. I just wanted to keep a record of this for our memories. I can't even begin to think about how I would have gotten everything we needed out for Will. I'm glad we didn't have a reason to go to Children's Hospital. It would have been difficult if not impossible to get there. Also it had some flooding so they would have had difficulty helping us I'm afraid. Thank you God for allowing us to stay safe in our home.

Thinking of everyone who experienced damage and loss. If you are reading and we can help please let us know. If you live nearby and want to volunteer for the clean-up effort go here.

*there's a strong Will

And he's SIX months old today!

*surgery update #8

As you may have noticed, when Will is home the blog updates are scarce. We did come home on Tuesday!

So far, so good. However it is very difficult to manage the pain of someone who can't talk. I have medicine to give him and we were schooled on the signs of pain but honestly, I just can't be sure what is happening. All of his signals are different now. He has two new cries - as in hungry cry, pain cry, change my diaper cry, or sleepy cry - but I don't know which is which. And he has always had a really quiet grunt but now he appears to be using that differently too. Also he is more verbal so I sometimes mistake him growling just to entertain himself as a wimper.

The only other difficulty about being home is holding him. I had a routine of carrying him around some of the day in a carrier/wrap. And when he needed comforting we would hold or rock him a certain way. Temporarily we can't put him in those positions so when he does one of these new cries I'm not able to try the old tricks. Depending on the trick that worked in the past we could figure out what caused the crying. Now we are inventing new things like bouncing the mattress in his crib. We are postponing our massages and little exercises. And clearly we have to forget about tummy time for building his neck strength for awhile. I'm looking forward to having him lie on my chest with his head on my shoulder again.

Here are some ways Will is still the same old Will: his happy smiles, likes his swing and bouncy seat, likes to "hold hands" [and no this isn't the baby grasping reflex...he really likes to hold onto my finger!;)], rub his eyes when he's getting sleepy, fascinated by his favorite toy, vocalizing more, and appears happy when I do the Isty Bitsy Spider and Patty Cake. We are constantly encouraging him to make more noises because we are really looking forward to him laughing regularly. I think he made a real  laugh once but we haven't heard it again. His laugh now is so quiet...he hasn't realized how much more noise he can make. When he is really happy he has a big open mouthed smile...we are waiting for the sound! We will often mimic his throaty cat-like sigh. It also has a bit of a grunt. And he mimics a sound from us but it still sounds like the throaty grunt sigh. We celebrate anyway because he does it on cue!

Twice a day we are cleaning the incision on his chest. So far I am only comfortable with squeezing the soapy water out of a washcloth onto him, rinsing the same way, and patting him dry. Bath time was already difficult with the feeding tube and now we have to keep him in pretty shallow water so none of his healing spots are under water. We are really looking forward to baths getting easier.

Next up is getting rid of the feeding tube. The one they sent him home with is longer than him! It has two ports on the end which is a mess because sometimes one pops open when you are shooting medicine or water down the other with a syringe. And since it is long he ends up sitting on it in his swing. I have to lift him and hope that dragging it out from under him won't snap off a top. Then milk pours out and we have a big mess. Not much longer though.

Well I've stopped typing about twelve times this morning to play with Will. I need to wash about 20 milk storage bottles and squeeze in a round of This Little Piggy before it's time for him to eat again.

*surgery update #7

Will is out of the PCCU and back to a regular hospital room. Still attached to him are: 5 leads going to the monitor showing his heart rate (the same shown in NICU pictures), the "red dot" on his toe to check his oxygen saturation, some "RA" lines (2 wires and something that looks like an IV), an IV in his foot (not hooked to anything, just there to get blood and give meds if needed), NG feeding tube in his nose, and an ID band around his ankle.

The red dot

We are getting back into his regular routine with feeding. I can't say the same for sleeping. Starting some time Saturday, Will went more than 30 hours with only about 2 hours in naps.  He wasn't crying or upset, but probably uncomfortable. We tried several things to get him to go to sleep and sometimes it would look promising...but within minutes his eyes would be wide open again. The key ingredients in getting Will to sleep in the hospital have historically been: pacifier, mobile, and swaddling. At home we mainly just need the swaddling, but sometimes will add the pacifier and rocking or swinging. With the help of the medical staff our guesses for this sleeplessness include discomfort from pain, being disoriented by the 24 hours of noise and lights, withdrawal from pain medicine, and other surgery related things. He finally went to sleep last night and is even more like himself today. He smiles some, kicks his legs, and looks happy to see us or a toy.

He (I mean We) may be able to go home by tomorrow! I think we are ready but it will be interesting to see how it goes. Normal activities like changing his diaper and holding him are difficult because it makes him uncomfortable, but thousands of other babies have had this surgery and their parents figured out how to take care of them so I know we will too. We are pleased that he is has done so well. The first 2-3 days of recovery seemed so bad but we continued to hope that he wouldn't be here for another extended stay. Tomorrow will be the 8th day of his hospital recovery after surgery...and we were told 6-14 days is typical. That's a pretty quick recovery!

I hope to have more positive news about his eating soon. His first attempt to eat from a bottle went surprisingly well. Sometimes he isn't interested in eating from a bottle at all, but other times he does fairly well. We will work with the nutrition staff after going home. Maybe soon he will eat all the time and no longer need the NG tube. He could probably nurse some too but I am going to have to see him a little more pain free before I attempt nursing. This is exciting to us because he wasn't doing either the week before surgery. So Will has gone from being 100% tube fed to eating on his own thanks to his heart repair! Not all the time, but more than he was before. In the past when he took a break from sucking he would be panting as if he were winded. Now he can pace himself and there is no more panting. Good signs that he will be successful pretty soon. It went so smoothly I wondered if he was doing it right! I haven't seen another baby eat in a long time so I don't remember what it looks like.

 The first bottle attempt on Saturday:

I wish we had video of the first successful post surgery burp. Chris and I leaned over both sides of the crib. I held Will up at the most awkward angle to hopefully keep him pain free. I had one hand on the back of his head and the other was trying to support his chest. As you can imagine I'm not comfortable handling his chest yet. The expression on Will's face was very unpleasant while Chris patted his back. After the burp we looked at each other very surprised. I don't think either of us thought it would work.

Napping with his new WubbaNub pacifier. It has saved me several trips across the room to his crib because it doesn't fall out of his mouth anymore!

*surgery update #6

Yesterday: skin was more pink, off Vapotherm, one more IV was removed, was awake for several hours, used his pacifier for several hours (good for keeping his suck exercised as well as helping prevent oral aversion), and did some smiling (only in his sleep though - he must have been having happy dreams)

Today: color looks even better, kicking his legs again, will be trying to eat by mouth, is off oxygen (!!) and would be on his way to a regular room if the cardiac floor wasn't full right now. He is even watching a little t.v. The hospital has a channel with classical music and nature sounds with scenes of mountains and oceans and snow, etc. The nurse turned it on so he could have something to listen to but he appears to be watching as well. I don't even know if he can see anything at that distance, but he is definitely fixated on something.


Some of the last things on the checklist are losing the chest tube, weaning off pain meds, and removing the pacing wires (still there in case they need to use the pacemaker again).

  I think babies really do bounce back faster than adults.

So far this is what I know about going home: He will need least 1 medication for a few months (Lasix for fluid retention), we will have to wash his incision with Dial soap every day, and we can't pick him up from under the arms for 8 weeks. This will give his sternum time to heal. 

 Chris attempting a nap today on the uber uncomfortable chair bed.

Nap attempt #2: successful

Father and son napping together.

Since Will's lungs are still a little wet he even makes a noise that resembles a mini-snore.

*surgery update #5

I apologize for not having an update on Will yesterday. I will summarize that day: he was very swollen and didn't look like himself. He slept most of the time but we did see him open his eyes a few times and move around some. They are still managing his pain well which means he isn't very aware of his surroundings. Every now and then they will remove something attached to him like an IV in his foot, one of the medication drips, or the sat monitors attached to his forehead. The first part of his recovery was difficult. They reassured us that all the things he experienced were within normal expectations. At different parts of the day we would hear that he had a fever, fluid in his lungs, or his blood pressure was too this while his heart rate was too that. It's pretty amazing how a heart can immediately start to move blood through the body again so efficiently. So of course there are things like fevers and irregular heart rates now and then. Speaking of his heart rate...he did not need the pacemaker for very long the other day. They keep it nearby just in case.

Today is a totally different story! His face now resembles the old Will. His eyes had been so puffy that there was no crease in the eyelid. Now they look the same as before and he has them open. They removed the ventilator yesterday evening (hallelujah!) and he is on the Vapotherm [ higher oxygen levels that are heated and humidified) again. As of now the monitor says 8.0 liters per minute of 50% oxygen at 34 degrees Celsius. He started out with 100% oxygen yesterday. Just like in the NICU he will step down to regular oxygen through the nasal cannula and then to room air as he gets better. Since his mouth is free he is sucking away on his pacifier as I'm typing. I was happy to see them take the ventilator out of his room completely. Although this one was a different type than the one in the NICU and didn't make annoying sounds, I was glad to see it go.

We can't take pictures of the equipment, so I got a back view from where we sit.

When the vent was removed it was cute to see him get his voice back fairly quickly. First his face looked like it was crying but no sound came out. Within a few minutes he would make small noises that were really quiet. Then it turned into a squeak. He is still at the squeak level but it works for him. If I'm in the room but can't see him I can tell the pacifier has fallen out of his mouth by the tiny squeaking grunt he makes.

The information they give us here is luckily filtered through our experience rather than theirs. By that I mean they reassured us in several different ways that his partially collapsed lung is not that big of a problem. To me that sounds like the worst thing he has experienced. There are a few different things they can try to re-inflate it and we'll keep you posted on that. When we listened in on the team's report during rounds no one seemed concerned about it at all.

We won't be able to hold him again until his chest tube is removed. That is what drains the excess fluid from around his heart. Of all the things attached to him that one is the least pleasant for Chris & I. Although he has been getting nutrition through an IV (TPN like in the NICU) they are putting a feeding tube in again and will start to feed him today.

The other sign that he is improving is that he no longer has one on one nursing care. In the best cases that only happens for the first 24 hours after surgery. His lasted a couple of days longer than that due to needing a lot of attention as well as his room assignment. He was at the end of a hallway and the baby next to him still needed one on one care too. This morning he was moved to a different hallway - still in the PCCU - but his nurse is also taking care of the baby in the next room. We are glad the nurse he had yesterday came with him to the new room! She also works on the floor with the regular cardiac rooms that surgery patients step down to when almost ready to go home. She is the nurse that admitted him when he was there a few days in March, as well as the charge nurse there during the end of last week. Obviously we are starting to see even more familiar faces around the hospital. Some families but mostly staff. I discovered that our cardiology social worker is also from West Tennessee and we have mutual friends. Having these kinds of experiences helps us not dread being at the hospital so much.

 Our happy colorful notes from you!

 Special thanks to Chris' coworkers at NDC who continue to be so supportive, as well as the Durham, North Carolina chapter of the Baby Will Fan Club (Deborah Hackney, President). I can't forget to mention their satellite members Bon and Debbie who I hear are vigilant Will supporters in Chattanooga!

Hello from a mending Baby Will!