the puce tote bagfamily, friends, photos, and tote bags

Just a quick note – our family is going to be walking in the March for Babies this Saturday, April 24th. We’d love to have your support as a sponsor. I know the economy has everyone tightening their belts, but even $1 can help a baby.

We’re walking because the March of Dimes supports research to help babies like Gus who are born with birth defects. No one knows why Gus was born with esophageal atresia. 1 in 33 children are born with a birth defect – and for 70% of these birth defects, there is no known cause. (Speaking of research – if you weren’t aware, the March of Dimes was started by Franklin Roosevelt – and because of research, we now have a vaccine for polio).

We’re walking because the March of Dimes helps babies like our friend Robbie who was born 14 weeks too early, weighing 1lb, 7ozs. Over half a million babies are born premature each year.

We’re walking because the March of Dimes provides support to parents who have children admitted to a Neonatal Intensive Care Unit (NICU). One in every 10 babies born each year are admitted to the NICU for health reasons. The NICU is a scary and overwhelming place, and support is important.

We’re walking for Baby “A”, Baby Hope, and Baby Elijah, and all of the other angel babies who are watching over us from their places in heaven. A parent should never have to lose their child because of prematurity or illness.

We’re walking so that no parent will ever have to sit by their child’s beside, for weeks on end, and not be able to hold them or comfort them.

Our Baby Gus, born 11/19/09 with Esophageal Atresia. This picture was taken when he was about six weeks old. While his esophagus was being repaired, he had to be medically paralyzed, sedated, and on a ventilator.

And finally, we’re walking because we are so very grateful that Gus is alive and well. We want other babies to have the same chance for survival as he did.

Today Gus enjoyed several spoonfuls of sweet potatoes. His esophagus has been fully repaired, and while he still has some obstacles to overcome, we have complete confidence that he will continue to thrive. He is and will always be our miracle baby.

Please help us help babies. It’s important.  Donate here.

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This sums up how our entire house feels lately:

,

One day, I may have the energy to type again. Maybe.

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Last week, J and I decided ship Charlie off to the grandparents on Friday so we could go on one last night out before Gus came home. We are pretty certain that it will be months before we get to have another date, since Gus has a feeding tube and a heart monitor and all kinds of paraphernalia and whatnot that a normal baby doesn’t have.

Gus was scheduled to be discharged on Sunday, but by Wednesday it was pretty obvious that wasn’t going to happen because of a fever and a stomach bug/infection/nastiness. He had so many liquid explosion diapers that the nurse just gave up on clothing since everything was getting ruined by grossness. I was obviously bummed about this and didn’t really want to go on the date night, but I knew it would be good to get out.

I know what some people are thinking. ZOMG! They are going OUT when their poor, defenseless, sick child is laying in a hospital bed? And they’ve gone out multiple times? Whaaaaa!?!!

Okay, maybe people really aren’t saying that, but when you become a parent you run into a lot of judgmental types and I imagine the thought is crossing some craphole person’s mind. But the reality is this: when you have a baby in the hospital, if you do not leave the room and do “normal” things, you will lose your mind. At least I would lose my mind. I love Gus, and while I wish it were feasible to be there with him every second, that is just not possible in my reality. I have another child, and Charlie doesn’t have a team of doting nurses to watch him and spoil him rotten. The bills have to be paid, the laundry has to be done, and my relationship with J has to have a bit of priority at times. Having an ill child places enormous pressure on a relationship, and we have to stick together.

But this isn’t a review of NICU life – I’ll write that later – but of our date night. I’m easily distracted these days because even though we try to do normal things from time to time, the NICU is always looming there.

Since it is Lent, and we’re those pesky Catholic types, we decided to go get a Killer Veggie pizza from Dewey’s. Normally we get Cardiac Arrest pizza with lots of pork and sides of pork, but last I checked pork was a meat and that is a no-no. It didn’t matter though, Dewey’s is yum no matter what the toppings are.

We went to the new Dewey’s in Webster, where I promptly ordered up a Schlafly Pale Ale, because that’s what all 30-something hipster gen-x parents drink. Unless they are drinking PBR, but I refuse to pay $4.00 for a beer that I drank when I was 17. I mean 21. Yeah. Dewey’s is what I like to call Hipster Heaven. There are microbrews, fancy salads, and pizza with ingredients like Amish chicken. What the hell is Amish chicken? Is it raised by the Amish? I have no idea.

Hipster Heaven also has lots of people our age, who are engaged in VERY INTELLIGENT CONVERSATIONS. Also, IRONIC. Also, GREEN. Sometimes there is a baby or two hanging out in a wrap. Being baby-less for the evening, I could fully concentrate my attention on the array of 90’s grunge rock/British pop mixes (REM, following by Smashing Pumpkins, followed by The Smiths), as well as the group of 12 stoners sitting next to us. And what was their conversation about, you ask?

Preemie babies. Of-freaking-course.

Even though we don’t have a preemie, obviously I see them every day and know quite a few preemie parents now. Here is how one part of the conversation went:

Stoner A: Dude, I totally know this girl at work who had a baby 32 weeks premature and it totally lived.
Stoner B: Uh, I don’t think that is right. 32 weeks premature is too early to live.
Stoner A: No, seriously, I saw pictures and everything. That baby was TINY. They could like put their wedding rings on the baby’s leg.
Stoner B: The baby was not 32 weeks premature. You mean 8 weeks premature.
Stoner A: Where did you get 8 weeks from? Did I say 8 weeks at any point?

(Long tangent between the entire table about how long pregnancy is – 9 months or 40 weeks).

Stoner A: Well, whatever, the baby was TINY and lived. And babies are born at 20 weeks old now that are ½ pound that live ALL THE TIME.

I ordered another beer at that point. And proceeded to get tipsy and talk loudly. Or, as J likes to say, I wasn’t drunk, I was still myself, just more myself.

After pizza and beer and great conversation, we were headed to see Shutter Island at the Moolah. We had plenty of time, so we stopped off at this little place called Café Ventana for a coffee. We’d never been to said café, but J read a review once about their heavenly beignets. While he was ordering, I went to the ladies room, and proceeded to go in the most freakish bathroom ever.

Maybe it was the 2 beers (sad, only 2), but this bathroom was intense. It was painted with chalkboard paint and there was graffiti everywhere. Very distracting when you’re trying to pee. Then I looked up, because there is a huge chandelier in the bathroom, and the entire ceiling is decoupaged with people’s faces. So, yeah, while you are doing your business, there are a million eyes staring at you. Creeepy.

I got out of there hastily and met back up with J. And then realized we were the oldest people in there. The place was filled with SLU students who were studying. I was all “Why the heck are these dorks studying on a Friday night?”, but then I realized it was maybe 9pm and that’s what college students do before they go out at midnight. Old! I’m old!

We found a table to enjoy our delicious pieces of fried dough with powdered sugar, and the students next to us were discussing Jesus. Cool, SLU and Jesuits, you know, people talk about Jesus there. But then we realized they were talking about a protest they were planning outside Planned Parenthood. Which was going to include paper mache crucifixes and reproductions of female genitalia. I guess J and I were magnets to every weird conversation in the city on Friday night. We got out of there fast to go to the movie.

If you’ve never been to the Moolah for a movie, it is a fun place. There’s only one movie ever showing, but theater has leather couches. You have to get there early to get a couch, like 45 minutes to an hour early. We got a good place in line and I spent 45 minutes talking trash about Leonardo DiCaprio. I’m sure he feels bad for starring in that horrendous Titanic movie, but I don’t think he’s been punished enough yet.

I’ll never let go! I’m the king of the world!

Do you think he was embarrassed when he was saying those lines? Because he should have been.

Anyway, when we finally got to sit down, we scored a third row couch, right in the middle. Yeah! I felt sorry for all the suckers who came in late.

I won’t give away any of the plot details of Shutter Island, but I will say this: the movie was the biggest mishmash of stolen thriller clichés ever. It was a combination of 7even, The Sixth Sense, The Others, Silence of the Lambs, and Memento topped with a little Alfred Hitchcock film noir. I was entertained enough during the movie, but then the end was just ridiculous and afterwards I realized that he basically stole a bunch of stuff from other films. And did I mention I hate Leonardo DiCaprio? And why can’t Scorsese do a film with anyone else? There are other actors out there, you know.

Date night = success. You should try it sometime! Especially if it involves crazy people at restaurants.

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It appears that I have forgotten to blog for quite some time. I do write most days, but for some reason the actual act of uploading anything seem insurmountable. I suppose I’ve been in a bit of a rut. And for good reason . . .

Gus was tentatively scheduled to be discharged on the 12th. Obviously, that did not happen, because he is still in the NICU. We will go ahead and blame the delay on these guys:

That’s right, less than a week before Gus’s discharge date he developed three lovely little bacterial infections. The doctors are pretty sure they were caused by his broviac IV, because there is always a risk that infection will develop when you have a central line in for a long period of time. His night nurse noticed that his heart rate was elevated, so she ordered bloodwork on him, and sure enough, there was an infection. They did some more in-depth blood cultures and discovered the other two organisms that were growing.

It was pretty upsetting to learn about the infections, because it meant 3 powerful antibiotics needed to be administered through a – you guess it – IV. Since they had to remove his broviac because it was causing the infections, he’s had to have peripheral IVs. The problem with those IVs is that they tend to go bad easily, so he’s had IVs in his hands, feet, and one unfortunate incident where they had to put it in his scalp (thank god I missed that).

About give days after the infections set in, our neonatologist called us at home, late one evening. That is never, ever a good sign. They had taken another routine blood culture, and had expected it to be negative since Gus was on a pretty heavy course of antibiotics. It came back positive.

They were afraid it was spinal meningitis.

Through all the surgeries, the paralytic and the ventilator, I was never really scared. I knew those things had to happen to keep Gus alive. I worried, yes, and it was scary, but I had full faith the doctors would save him. But spinal meningitis – that put fear in me. I sat at the table and sobbed, more than I had cried throughout this whole experience. Maybe it was pent-up emotion, maybe I was just exhausted, but it was one of the most terrible moments I’ve ever had.

The doctor said that if Gus had spinal meningitis, the antiobiotics he was already taking would treat the problem – they just needed to know how long he would need to be treated. To test for spinal meningitis, they had to do a lumbar puncture. Yep. Needle in the spine.

I would give up every second of my epidural-free births if it meant that Gus wouldn’t have had to go through that – and he went through it THREE times. They couldn’t ever get any spinal fluid, and these are highly skilled doctors that deal with extremely serious issues. I believe every neonatologist in the NICU discussed his case, and ultimately, it was decided that the risk of doing another lumbar puncture wasn’t worth it, because the infection was already being treated if it was there.

We’ll never know if he had spinal meningitis, and the doctors have told us just to go with the assumption that he did not have it. That’s what I’m trying to do, but still – it is hard not knowing if your child had something in his system that could cause hearing loss or brain damage. This is one of those instances where faith is so important to me, because otherwise, I would drive myself mad asking for answers. There isn’t one. I don’t know why a baby who has been through so much already would be endangered with infections. It doesn’t seem fair, but none of this has been fair.

And yet . . . despite all of the surgeries, the infections, the weeks of sedation . . . Gus is so very happy and joyful. You would think he’d be pissed off and hate all the doctors and nurses, but any time someone talks to him his whole face lights up and he has a smile that glows. There is something so special about him, so amazing. I’m in awe of him every single day.

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J decided during lunch on Saturday that Dr. Martens are going to make a resurrection, and that I should be the person to make that happen. I loved and adored my Dr. Martens in  college. I long for a world of beat-up jeans, flannel shirts, and great boots. Yes, I realize this makes me sound ancient. But I’m okay with that.

To resurrect the best boots in history, I would first need to purchase a pair.

This pair, to be specific:

Vintage 1460 boots in black, $180.00

As you can well see, there is a slight problem in my plan. Mama does not have $180 to buy a pair of boots that are not even in fashion right now.

I will continue to dream of my glory days in the grunge era.

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After 79 days in the NICU, this happened:

Happiness like you would not believe.

I had mentioned in my last post that it was very unlikely that I would be able to do much breastfeeding, if any, because of the swallowing issues. Well, there has been much confusion regarding this subject in the NICU, because Gus is not a typical baby. He’s a full-term baby, but he has esophagus issues. He wants to eat, and knows how to eat, but he can’t keep from aspirating himself.

I kept questioning everyone about the breastfeeding issue, because I was just not satisfied with the explanations I was getting (or not getting) about why I wouldn’t be able to at least try to feed him. And no one seemed to know for sure. It wasn’t even that the medical team didn’t want me to breastfeed, it was more the uncertainty about Gus’s swallowing abilities, combined with his age. They didn’t want breastfeeding to be detrimental to a long-term feeding plan.

I understood that with the amount of milk I produce that my letdown might be too strong. Easy solution – pump first, then feed him. But there just seemed to be a general reluctance to even address it. I’m still not sure that we’ve come to an agreement on what’s right, but the speech therapist and OT have both agreed that it would be highly beneficial for Gus to do nuzzling. Nuzzling is basically where I pump until I’m empty, and then let Gus latch on to get familiar with future breastfeeding.

Well, I have been trying all week to make this happen, because the speech therapist wanted to be there to show me how to do it. Yeah. I breastfed Charlie, I’m pretty familiar with how to get a baby to latch on, but I was fine with her watching. The problem was that every day something would come up and we wouldn’t be able to do it. The staff at the NICU is great 99% of the time – my only complaint is that they are busy, and if you’re a laid-back mom like me, you tend to get overlooked for more demanding people.

Today I was kind of fed up with the waiting, because I knew next week would be crazy, so after I pumped, I decided that I was going to try it myself.

Gus latched on almost immediately. His latch was perfect, he looked right up at me, and started sucking away. It was the most beautiful moment ever.

Luckily, J was with me today at the hospital and got the photo above. I think it might be one of the loveliest photos I have ever seen.

We only did this for a few minutes, because Gus was so good at the nuzzling that he was actually getting milk. They said a few drops is fine (we actually dip his pacifier in breastmilk to give him tastes), but he actively swallowed and I had to pull him off. It gives me hope that while I know I won’t be exclusively breastfeed him, this is something that we’ll be able to do together.

I’m glad that I decided to take charge of the situation. It’s one of those cases where mother does know best. I knew he was ready and capable to take this next step, and that it would be good for him and me, and that I didn’t need a nurse to teach me how to do this. I’m so grateful to the nurses and doctors for all they do for Gus, but breastfeeding is one thing they can’t do for him. And I can.

More updates to come . . . next week could potentially be very exciting!

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A quick update on sweet baby Gus before I collapse with exhaustion . . .

On Monday Gus had another swallow study to check out how his esophagus was healing. There were no leaks, which was excellent, fantastic news. I was in Gus’s room when Dr. C came by to tell me the results, and things moved very quickly at that point. I was washing my hands, and at the exact moment I turned around I heard this horrible sound and saw Dr. C pulling out Gus’s chest tube. YIKES. I had no idea when he said the chest tube could come out that he meant right that second. I would have gone elsewhere if I had known that was about to happen, because it was creepy.

Gus was superbaby though, and only cried for a few seconds. Dr. C and the nurse put on a dressing, then went out to meet with the neonatologist and nurse practitioner to discuss a feeding plan. Less than 30 minutes later, the nurse was holding Gus and getting ready to give him his first bottle.

Now, I will admit I was very upset that they wouldn’t let me feed him the first time. It was my milk, and my child, and I thought I should have gotten to do that. It was bad enough that they said absolutely no breastfeeding until we can establish that he can swallow, but to not even let me feed him made me sad. Logically, I know they wanted the nurse to feed him because he could have started easily choking and gagging and she would need to be able to react fast. But it was still hard.

Gus took 10ccs of milk in about 5 minutes, and I was the happiest I’d been since his birth. It really hit me at that moment that he was going to be okay, that his esophagus really was fixed (well, sort of, more on that later), and that he could eat. Everyone was amazed by how well he did with his first feeding. I could finally start to hope that he’d be home soon.

Well, as with everything in the NICU, the excitement was short-lived. The next day I got to feed him, and the nurse was concerned because he was starting to sound congested. He was also having some issues with reflux and gas, which was expected, so they started him on mylicon and Mylanta. It is very likely that he’ll be on some prescription drugs for these issues at some point, but for now, the OTC meds are working.

Feeding him was cool, but still a little heartbreaking for me. It is so hard for me to have him in my arms and not be able to breastfeed him. He seems like a perfectly normal baby, but I have to remember that he isn’t perfectly normal and bottle feeding is what he needs.

Sigh.

On Wednesday, when I got to the NICU, the nurse tells me that Gus is going for another swallow study. Apparently his congestion was getting worse and they were afraid he was aspirating liquid into his lungs. The swallow study would allow the speech/occupational therapists to watch him eating via xray to determine what was going on when he swallowed.

The study confirmed that he was aspirating the milk. Not only that, he was silently aspirating it, meaning he didn’t cough or choke every time it happened. That is bad, because normally when you aspirate (you know, when something goes down the wrong way) you cough or choke the liquid back up, so it doesn’t go in your lungs.  Dr. Famous J says that little flap in your throat is called epiglotus. I don’t know if that is true, but whatever that thing is, it doesn’t work very well for Gus yet. He never swallowed in the womb, then he was knocked out for weeks, so he has some catching up to do. With maturity, he’ll learn what to do if liquid goes down the wrong way. But rather than take the chance of letting this continue to happen, which could lead to all kinds of bad things – like pneumonia or scarring of the lung tissues – he got pulled off bottle feedings for 2 weeks.

Super sigh.

In the meantime, the nurses are feeding him through his g-tube, and we’re working on getting him entirely off morphine and his IV nutrition. That is going very well, and by the end of next week he should be up to full feeds and probably off the pain meds. The speech therapists and nurses will be doing some exercises with him every day to try to help him get that suck/swallow reflex down, and hopefully we’ll have some good news from the next swallow study on the 10^th.

I did talk to the neonatologist today about a going home timeline. He said that learning to eat will be a lengthy process for Gus, and they aren’t going to keep him in the hospital indefinitely. As long as we get him off the IV nutrition, up to full feeds via his g-tube, off the morphine, and able to get 1-2 bottle feedings a day, he can go home. His guess was another 2-3 weeks, but definitely not months. So we can be cautiously optimistic that he’ll be home in the near future.

After he gets home, there will still be a lot of work and a lot therapy that needs to be done. Remember when I said his esophagus is fixed? Well, it is attached and healed and not leaking. It is, however, very narrow. Over the next several months, possibly years, Gus will have to get outpatient procedures called dilitations. In simple terms, it is a series of procedures where a catheter tube will go down the esophagus and be expanded to slowly start stretching out his esophagus wider. It’s possible that he may need this dilitations periodically throughout his life, but at this point it is too soon to tell. It is done under general anesthesia, and isn’t supposed to be very painful, just kind of annoying.

In addition to those procedures, we’re going to be working with speech and occupational therapists for quite awhile. Gus will come home with a g-tube and a pump, so while he’s working his way up to eating entirely from bottles, I will feed him milk through a pump.

Breastfeeding? I can pretty much forget it. The speech therapists have said they will work with me on it, but if we’re lucky I might be able to put him to breast once or twice a day. MAYBE. They are telling me without coming out and saying it not to get my hopes up. It just isn’t realistic to think that its going to happen. I don’t even want to get into how sad it makes me to think that trying to feed him via breast could cause him serious issues with swallowing and eating. I know technically I AM breastfeeding – once he is off the IV nutrition, he will be a 100% breastmilk baby. But it isn’t the same, and I am so disappointed that Gus doesn’t get to have the same kind of experience that Charlie did. I know I’m lucky that he is able to eat at all, and it doesn’t matter how he gets the food. But it still hurts.

Focusing on the positives, however, is that Gus is thriving, and gaining weight, and hitting developmental milestones despite all of his issues. He has great head control, follows objects with his eyes and makes eye contact, smiles (he is a big flirt) and is *this close* to cooing at us. It’s pretty incredible that he is so responsive and expressive. He is so popular among the staff, in fact, that one of his nurses had to ban everyone from his room for a day because he was getting no sleep.  They also like to take him on field trips – iv pole and all – around to visit with the rest of the unit. He gets bored in his crummy old room!

I feel like I’m neglecting Charlie on the blog, but he’s doing great. He is a well-adjusted, happy, sometimes whiny toddler. He’s much more active than verbal, but in the past few weeks he’s really started to chatter more. It doesn’t make any sense at all, but he thinks he’s saying something very important. I’m fascinated by how many new skills he’s learned, but I don’t know how he’s learned them. All of the sudden, I can tell him to do something – like throw his socks in the laundry basket – and he does it. And then he brushes his hands together to show me he’s done. He’s very good at following directions and “helping.” He also loves music and dancing, and climbing on things. He is such a joy to us, and I love him to pieces.

J and I are kind of running out of energy, but we’re trying hard to keep it all together with a good attitude. I can’t wait for the day when we can spend an evening together with both of our kids, and Toby, and not have to drive to the hospital. Soon, hopefully!

Oh, and my Project 365 . . . I lasted 4 days longer than I predicted! I don’t know what I was thinking, trying to start a project like that in the midst of all we’ve got going on. Maybe next year!

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Charlie loves to brush his teeth. So much so, in fact, that he will often throw himself down on the ground in protest when it is time to stop. I totally understand. I love brushing my teeth and I love the dentist.

Good times.

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Dr. C gave approval for me to hold Gus once a day. It is quite a process, since there are tubes and wires everywhere, but well worth it. Ignore my awful white t-shirt, it is so freaking hot in Gus’s room to keep him warm (he can’t wear clothes, you know) that I have to strip down when I hold him.

Gus is very attentive. He really should be napping, but he thinks his mama is so fascinating.

“Hi, mom. Please feed me. I am ready to get big and go home!”

I really am the luckiest girl. I get to hold Gus all afternoon, and then I get to come home and get loved on by my other favorite munchkin. My boys are the best.

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I just can’t get enough of this sweet baby’s hands and mouth while he’s asleep. So adorable, if I do say so myself.

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