Adios, 2012!

It is officially the last day of the year, and we've got about 12 hours left until that ball drops. 2012 was not what I thought it was going to be, to say the least. We found out we were pregnant on January 26, 2012, and so looked forward to all the changes we were facing. We looked forward to tiny hands and tiny toes, diapers, mid night feedings, and doting over a sweet, and perfect little angel. Then on May 22, 2012, our world was shattered when we learned that our baby had Hypoplastic Left Heart Syndrome, a complex congenital heart defect affecting only 1 in 5,000. Then on September 27, 2012, we were blessed with the arrival of 7 pound, 10 ounce Wyatt Alexander Sauers. He was beautiful, and crying, and so were we. And we knew right that moment that HLHS or not, he was perfect. October 3, 2012 we endured the most painful day of our lives- handing our 6 day old son over for a major open heart surgery. October 24, 2012, we finally got to bring our baby home from the hospital. And aside from a one night PICU stay on December 16, 2012, home is where we remain.

We anticipated 2012 to be full of joys, and while it was, it was also full of the most painful moments of our lives. But, there isn't a damn thing I would change about 2012. Without that pregnancy, that diagnosis, the path we followed, we wouldn't have Wyatt. We wouldn't be watching Wyatt grow and learn, and we wouldn't be watching Austyn bond with his baby brother like he is. We wouldnt get to witness the wonder on Wyatts face while he watches Austyn. This entire journey has shown me that I am far stronger than I ever thought I was. It has taught me to be thankful every single day for my kids. To smile every day, at every chance. That even when things get tough- there is always something to smile about. That the odds are sometimes stacked against us, but we can do this! I am thankful for 2012, despite the pain and tears that came with it.

And so we move on to 2013. Wyatt will have his second open heart surgery in 2013, but hopefully, we will be able to get through that successfully, come back home, and lead a fairly normal life for a couple of years until Wyatt has his Fontan. Hopefully 2013 will bring us more joys, more smiles, more love.

Normally, on New Years Eve, I tell the current year to kick rocks, and hope for a better new year. But this year, I kindly say goodbye to 2012, with a smile and a wave, and welcome 2013 with open arms, in hopes that even though it too will bring tears, that it will bring even more happiness.

Wyatt's First Christmas

Merry Christmas! We celebrated Christmas as a family of four last night and my dad joined us. We had a wonderful time, and are looking forward to more Christmas festivities with DJ's family tomorrow morning.

More than anything, I am so thankful that Wyatt is stable, and we are able to be home together for Christmas. We were originally just hoping to be home by Christmas, after his Norwood. We are so blessed to be home and happy, rather than being in the hospital, or worse, being in the hospital waiting for a heart. I follow so many heart kids, and see that so many of them are still hospitalized. I am definitely counting my blessings this holiday season. Sure, things could be better for us in many aspects, but my boys are happy, Austyn is healthy, and Wyatt is stable- I can't ask for much more!

I hope you all have a wonderful Christmas, and a very happy New Year! Hopefully good things are in store for 2013!

Better safe than sorry

From about 3 am to 9 am, Wyatt was just not himself. Any time he was awake, he was crying. That is very abnormal for him. Nothing made it better, not walking him, or bouncing him, or his bottle or pacifier. So I called the PICU and talked to the intensivist. He said that we should have Wyatt seen in the ER, just to be safe. When we got to the ER, Wyatt's O2 sats were really low, usually around 65%, but even dropping down to the 50's. His cardiologist came and saw him, and decided to admit him to the PICU, just to keep an eye on him for a while. They did a chest x ray, which came back normal, and an echo, which showed good heart function, and no narrowing. So, we aren't really sure what was causing him to de-sat. His sats are better now, and when he does drop, he comes back up quickly.

When we took his onsie off for his echo, we noticed that the base of his scar had a scab on it. This spot has always looked a little worse than the rest of his scar, but the scab was new. Then, the scab fell off and left a small hole in its place. I noticed what looks like a piece of wire sticking through this hole. Originally, they were saying that Wyatt would probably go home tomorrow but now that his surgeon has to look at this spot tomorrow, and may trim the wire, we could potentially be here longer :-/

I am glad that I listened to my gut and we brought him in, but being back in the hospital isn't much fun. Plus, Wyatt sleeps in the bed with us at home because he just won't stay asleep in his bassinett, so we are going to have to spend the night holding him in the rocking chair in shifts, so he will sleep. Should make for an interesting night.

Oh, the joys of being a heart parent. *sigh* good thing he is totally and completely worth it. :)

Trying to figure it all out

Well, I guess I can say that things are in the works. Wyatt's SSI application is still pending. I anticipate that he is going to be denied from a monetary stand point. They are basing their decision off of our income from October, which is when I received my short term disability checks, so it looks like we make a lot more than we do since I now have no income. So we will have to go through the appeals process. We also send in applications for Medicaid, and the Medicaid buy in program. I don't believe we are going to qualify for regular Medicaid, and we are going to have to do the buy in program, meaning we will have to pay a monthly fee to have Wyatt carry Medicaid as a secondary insurance. We have been lucky that people are so giving and helpful, and have been getting formula samples which have been a tremendous help in cutting costs. Our neighbor also pointed me towards a place to get diapers for Wyatt, and we should start receiving those the day after Christmas. Again, a huge help in cutting costs. Now we just have to wait and see of the government is going to do anything to help us, or if we're on our own.

Things at home are going pretty well. Wyatt is doing well, and is very smiley and talkative. Austyn is doing well and is very excited for Christmas. DJ and I are looking forward to Christmas with both boys, and trying to figure out life with two boys at home, and how to balance all of life's changes- my not working, financial burdens, schedule changes, medical needs, etc.

Having a heart baby has been so very different than I could have anticipated. There have been parts that have been easier than I thought they would be, an parts that have been much longer difficult. Wyatt's second surgery is constantly looming over my head at this point. I am terrified, to say the least. I don't want to see my baby like that again, I don't want him to have to endure this all over again. But, I know that if all goes well, once we get through the Glenn, we will be able to live a more normal life for a while, until Wyatt's Fontan. We will be able to leave the house with Wyatt. Well be able to do things as a family outside of the home. An hopefully, my constant fear will subside a bit.

Fearing the Glenn

We made it through Wyatts birth, his 6 day NICU stay, his Norwood, and his 21 day PICU stay. It was terrifying, heartbreaking, difficult, and at times just plain awful, but we made it. We came home, we adjusted to life as a family of 4. I got used to being a stay at home mom, to taking care of not only a 6 year old, but an infant with special needs as well. While we were in the hospital, it all seemed so normal. And now that we're home, and have been for a while, being home seems normal and the thought of being in the hospital seems very foreign.

And now, I am faced with the reality that Wyatt's Glenn procedure (and heart cath) are just around the corner. The reality that I am going to have to take my baby back to the hospital, give informed consent all over again, wait through the surgery, see him afterwards, see him hurt, see his tubes, know that he is uncomfortable and that there is nothing I can do to make it better. When he had his Norwood, beyond the situation just being scary, it was twice as scary to me because my baby was only 6 days old. He was so tiny and so fragile, and so perfect. And now, in thinking about the Glenn, it's not only scary, but twice as scary because now I fully know my baby, and he knows me. Now, he knows the sounds of our voices, and what we look like. He smiles and coo's at us. He sleeps in my arms, he spits up on my shoulder. We have now created that bond that a parent has with their baby. And I think because of this bond, because he will be 4 months old at the time, because he will be doing this all over again, I am petrified.

I know that the Glenn gets us out of a really scary stage in Wyatt's progression. That it is imperative he have this operation. But damned if I want to go through this all again, and moreso, damned if i want to see my baby go through it all again.

Wyatt is doing so well at home, and at each doctors appointment, it is really easy to forget that this journey is far from over. Even with his scars, and the extra reminder each time I see my own chest, it's easy to forget. When I see pictures of other babies, I immediately look for their scar, as if every baby is supposed to have one. It's just normal to me now, and I don't even notice it a lot of the time. It's too easy to forget that in 2 months time, we will be back at P/SL, back in the PICU, back into dealing with all the hurdles Wyatt has to overcome after another open heart surgery. It's easy to forget that HLHS is a bastard.

As the time gets nearer, my fear gets larger. Every time I think about it, I am that much closer to instantly breaking down into tears. With Christmas right around the corner I am trying to focus on my guys, and make sure that we have an amazing Christmas, and make sure that I am thankful that we are home, together, for Wyatt's first Christmas.

But it's getting harder not to dwell on the fact that this will never be over. That Wyatt will never be "normal", he'll never have a healthy heart like he was supposed to. I love that little guy so much it hurts, and I am thankful that we've come this far, and that he's doing so well, and that he is such a fighter for the long road ahead.

And just for a smile, here is a picture from today of the little stinker. I think this is what he thinks about HLHS ;-)

Holy financial problems

Well, my stress about affording HLHS has kicked in for sure. I just don't know what we are going to do. At this point, we have about $16k due out of pocket. Rough estimate, that $16k is due to about 15 different companies. That's 15 monthly payments. I have set up two payment plans thus far, and those two payments alone are $260 a month combined. There is no way we can pay 15 of those. I would say we are spending about $250 a month on current medical costs. That's for meds, co-pays, etc. So even if I only paid $50 a month towards these medical bills, that puts us at $1000 a month on medical costs. Let's also throw in there that I am no longer working, so our income has literally been cut in half. We were living within our means before, but didn't have much money left over, and do have debts of our own. So, in theory, our bills have gone up $1,000 a month(with the $50 payments idea) and our income has been cut in half. We have the money Wyatt received in donations, and use it to help cover his current medical costs, but it is no where near the amount owed in bills. I am not sure of it makes more sense to pay off any bills we can with it, or use it to make payments to keep things afloat longer.

Ultimately, we know that a bankruptcy is in our future. We just don't make the kind of money we need to pay these bills. But, without Medicaid, it's only going to get worse. We're facing another $10k in medical bills here in just a couple of months. I have NO idea how we will swing monthly payments once that has all kicked in too. Not to mention it costs quite a bit of money to hire a bankruptcy attorney, which we would also have to be saving up for, somehow.

Financially, this entire situation is a nightmare. I am the kind of person that always pays her bills, on time, no matter what. I've never been in a situation where I can't afford life. I am so grateful for the help we have received and are still receiving, but still don't know what the hell we are going to do.

Of course, Wyatt's life is worth all the money in the world to us, and in the end, that is what important. Unfortunately, these companies will not accept my love for Wyatt as payment.

Supporting Wyatt

I just wanted to share with you all that I got a tattoo to honor Wyatt, about a week ago. I am hoping that it will help to make him feel less "different" when he is older, and I think it honors the journey we are taking. I absolutely love it, and couldn't have asked for it to turn out better. And it makes me feel like we can do this, we can conquer anything. It makes me feel strong for Wyatt. :)

Cardiology follow up- 2 months old

Yesterday I took Wyatt to his cardiologist for his first echo since he was discharged from the hospital. I was very nervous, to say the least. Thankfully, his heart still looks good. He has a small amount of narrowing in his aortic arch, but it isn't a concern at this point, and they're just going to watch it. His blood pressure is a little elevated, but he is on a decent dose of Enalapril, and they are just going to keep an eye on that as well. His cardiologist was super happy with Wyatt's weight gain (9.5 pounds now!) and said it made his day to see Wyatt doing so well. :) we go back for another echo on December 19th, and at that time we will schedule Wyatt's heart cath. That, we expect, will be an overnight stay in the hospital. And we are anticipating his Glenn in late January to mid February. The Glenn is a huge step in the right direction, but I am so scared to go back down the surgery road. To sign my baby over again. I am not looking forward to it. At all.

We are still trying to deal with all the incoming medical bills, making payment arrangements as we can, while keeping our other bills paid and providing some sort of Christmas for the boys. We are keeping Christmas small this year, as we need money for other things. I am glad we will all be together at home for Christmas, though. That's the greatest gift of all.

I've also been dealing with some very difficult things in my personal life here lately. Things I never imagined having to deal with, especially while trying to get through all of Wyatt's medical needs. It has been extremely painful and confusing, and I've just been trying my best to get everything sorted out, for the boys sake, and for mine. So those of you who are thinking good thoughts and praying for us, please pray I find the guidance I need, as well as the strength, to get through this unexpected nightmare.

Day to day life for Wyatt is going well. He's a pretty happy guy, smiling daily. He even took a bath this morning without screaming! Must have been my mommy touch! ;) I'm pretty well adjusted to life as a stay at home mom now, and enjoy it for the most part. It's a bummer that we never get to leave the house, aside from doctors appointments, but it's what we've got to do to protect Wyatt and help keep him healthy. Austyn is doing well, and seems to have adjusted to Wyatt being home. I hate that he will have to endure another surgery and hospital stay with us, but again, it's what we have to do. I'm thankful that he's a sweet, loving boy, and that he's so strong. DJ is back to work and back into the swing of things.

A huge thanks to all of you, for following Wyatt's story and supporting him! I am happy that I haven't had much to report here lately- no news is good news!

A whole lotta catching up to do

First of all, I am SO sorry it has taken me this long to update the blog! 

We have been home for 20 days now. It has been wonderful being in our own home, sleeping in our own bed, being with Austyn every night, and being together every night. DJ has returned to work and is back into things full swing. I am adjusting to life as a stay at home mom, but things are going well. I can't complain about wearing pajamas all day long :) Ha! I would get dressed, but we don't leave the house ever. I promise, I put real people clothes on for doctor's appointments and things ;)

We are battling the acid reflux on a day to day basis. Some days are good; some are not. Yesterday wasn't too great, but today has been good thus far. Knock on wood. The Prevacid does seem to be doing its job, thankfully, and I think we just need to be super careful about making sure we try to burp Wyatt after every 30-40 mL's, so we don't shock his poor tummy. The Similac Sensitive for spit up seems to be doing the trick as far as formula goes. I am now taking Reglan ::runs off to take the dose I should have taken 2 hours ago:: to see if it will boost my sub-par milk supply. Trying to pump every 3 hours when you are taking care of a baby with acid reflux and you are sleep deprived is not an ideal situation, so I could definitely be pumping more frequently, but the logistics just don't work out. But, Wyatt is still getting breastmilk and all those antibodies, so that's good. He is continuing to gain weight well, weighing 8 pounds, 10 ounces this morning. I am SO thankful we are doing well enough eating by mouth and he didn't have to come home with an NG tube or a G tube.

He has to take Synagis through flu season, so his body could fight off RSV if he were to contract it. Getting that all figured out was a fiasco. I think it is finally done though, thankfully, and he will get his first shot on the 21st. With our insurance (UMR - for anyone wanting to compare), we have a $150 copay per vial of Synagis. At his current weight, he only needs on vial per month, but may require 2 vials as he gets heavier. Thankfully, our pediatrician's office gave me the phone number to a company who helps cover that cost, and we only have to pay $50 per vial. That is SUPER helpful. The office also gave us a ton of formula samples today, which will save us from having to buy that for a while. 

Wyatt is wearing a Pavlik harness for hip displasia due to his breech positioning, so we see a Orthopedic doctor about every 10 days for that. He doesn't seem to mind the harness as much as DJ and I do. It makes it much more difficult to change his diapers, put him in the car seat, and snuggle him :( I am hoping he won't have to wear the harness for a very long time. We see them again in a week, and it will have been almost 3 weeks of the harness by then. They are doing an ultrasound of his hip at that appointment, so we will see what sort of progress has been made.

I think life has become pretty routine for me at this point. Monday through Friday I get up in the morning (much earlier than I would like, as I am generally up with Wyatt from 1-3 or 2-4 am), get Austyn fed and ready for school, feed Wyatt, and get Austyn off to school. Then its just me and Wyatt all day, cuddling, feeding, diapers, checking pulse ox, recording pulse ox and feed information, taking weights, etc. I get things done around the house as I can. The acid reflux makes Wyatt very needy, wanting to be held all the time, and I oblige him. I figure he deserves it to the fullest. DJ comes home after work, and I get a bit of a break from Wyatt, while I get dinner cooked and ready, and we eat, do homework and bath time, play, etc. before its bed time.

While I am not happy that Wyatt has to have this heart defect, and our family has to endure this, I cannot say that I am unhappy on a daily basis. Thankfully.

When I was pregnant with Wyatt, I wanted information on the costs associated with HLHS. I couldn't find much. It seems no one wants to talk about it. And while I wholeheartedly understand, and agree, that your child's life is worth any amount of money, paying the bills is still a part of this situation, whether you like it or not. So, since I couldn't find the information I wanted, I have been compiling it, in hopes of providing it to another family someday.

The bills from the hospital have started to roll in. For me, my 4 day hospital stay was about $28,000 before insurance covered their portion. We owe $3000 or so out of pocket. I called to set up a payment plan, and we have to pay $184 a month for that bill. That was the lowest they would go. My OB's charge for delivery was $12,000 or so, us owing $3,200 out of pocket. I haven't gotten the bill for that yet, just the explanation of benefits, but I imagine the payment plan will probably be about the same. My spinal block was about $2000 before insurance, and we owe $250 or so on that, out of pocket. There were some smaller bills for labs, etc. for me as well. $20 here and there. Thus far, for my stay, $44,446 was billed to insurance, and our out of pocket cost is $6,882.

For Wyatt....its a whole lot scarier. We still have not seen the explanation of benefits for his hospital stay, or his surgery. But, even without those, $82,111 has been billed to insurance, and our out of pocket cost is $4545. The intensivists ranged from $600 - $15,000. The anesthesia for his surgery was over $8000, and we owe just over $4000 out of pocket on that one. A lot of our out of pocket costs haven't been calculated yet, because my insurance was waiting to hear from UMR to see what they were going to cover. My insurance (Cigna) is acting as primary for his hospital stay, so things are being re-processed. I am keeping track of each and every statement, explanation of benefits, bill, etc. that we get, to make sure things are covered correctly and billed correctly. I had to call the hospital because over $1000 was billed with my name listed as the patient rather than Wyatt's. Wyatt has a $3,000 deductible, which has been met, and a $6,000 out of pocket maximum, so in theory, the out of pocket cost for his stay shouldn't exceed $9,000. We will see how that goes. Then, of course, we get to meet it all again for his Glenn procedure.

Now, I do have this information on the cost of things, but don't ask me how to afford it. We received many generous donations from family, friends, and strangers, but even with those, there is no way we can pay upwards of $18,000 in medical bills and keep a roof over our heads and food in the fridge. I guess my plan is just to set up payment plans for everything, and cross my fingers we will be able to swing those until everything is paid off. Of course, this won't work, as the payment plan for my hospital stay is for 18 months, and we have another surgery and hospital stay before these will even be close to paid off. But, what else are we going to do? I assume a bankruptcy is in our future, I just don't know when yet.

And as I am now typing one handed due to Wyatt's need for snuggles, I will update again later. Hopefully I will get around to it sooner next time! ;)

Home

We got home around 5:15 last night. The drive from the hospital was the longest drive ever, in my brain. I couldnt wait to get home and put the pulse ox on Wyatt and make sure his sats and pulse were okay. The first night home was amazing. It was so good to be home, and to see both of our boys finally interacting. It was double good to crawl into bed with DJ, and be able to cuddle as we fell asleep. It was also nice to be together for the middle of the night feedings, even though we didn't say much to eachother (who has much to say in the middle of the night?), it was nice to not be alone.

This morning after DJ took Austyn to school, I went to the grocery store. We needed some basic groceries, and some infant Tylenol, and a LOT of disinfectants. I literally spent $50 on soap and Lysol. We bought three of those Lysol no touch hand soap dispensers, some dish soap that's supposed to be gentle on our hands, Lysol wipes, etc. We have to be EXTRA careful with any sicknesses that could come into the house, especially with Austyn in school, so anything we can do to make hand washing easier and more routine, and keep things in the house cleaner and germ free, great.

And while life at home has been great, I am still adjusting to the constant, overwhelming paranoia. We had to take Wyatt to the pediatrician today, and the lighting in the office made it so very apparent that his color isn't "normal", and then I absolutely couldnt wait to get home to check his O2 sats. He was sating at 80% when we got home, by the way. Im paranoid about his vitals, and about his color. I'm paranoid every time he cries, every time he's sleeping, every time he's awake. I'm paranoid about visitors, about leaving the house, about sleeping. Im sure that in time, things will be more normal, and I won't be completely freaked out. But, in the mean time, I even take it so far as to put my finger under his nose, just so I can feel that he is breathing.

It makes me wonder if the fear will ever really go away. Am I going to spend the rest of my life scared shitless that something is going to happen to Wyatt? Will I have these thoughts each and every day? Is there a balance between understanding the reality that HLHS could win the battle at any time, and being overly worried and paranoid? And, while finding that balance, will it be possible to be a pseudo- normal mom to the boys without wrapping them in bubble wrap to keep them safe?

It's like no matter what stage were in in this journey, there are more obstacles and hurdles to overcome. I guess eventually the consistent struggle will just be normal. And in the mean time, I will just enjoy the sweet little boys in my house, and make memories with them every day, and enjoy our family.

Anxious

The doctors and nurses say that Wyatt looks fabulous! He is only on a few meds: enelipril for blood pressure, aspirin to keep his blood thinned, a multivitamin, and lasix, to help keep fluid off of him. He is still currently on methadone, but he will get his last dose of that tonight, around 3 am. He is taking all of those by mouth. He is also taking all of his feeds by mouth, with a goal of 420 ml's per day. Yesterday, he had 391 ml's, so just shy of the goal. But we are also fortifying his breast milk with formula, to make it higher calorie. As of last night, he weighed 3.475 kilos, which is about 7 pounds 9 ounces, rough estimate. At the time of surgery, he was 7 pounds, 3 ounces.

We are expecting to go home very soon, and are just waiting to make sure he is gaining weight. Hopefully when they weigh him tonight, he will have gained. If so, we stand a chance to go home tomorrow or Thursday.

I am so excited to go home, but am scared to not have all the doctors and nurses right here to tell me he is ok and answer my questions. I am super excited that DJ will have almost a week at home with us all, before he has to go back to work. I so look forward to cuddling up on the couches, all 4 of us, to watch a movie, and eat some popcorn. I look forward to sleeping in my own bed, next to my husband, with Wyatt within arms reach, and Austyn snuggled up in his bed. I look forward to Austyn getting to know his brother, and adjusting to the fact that his little brother really is real.

I am oh so anxious to get home, and have some normalcy before the mayhem of Wyatt's Glenn procedure starts in a few months. With the possibility of going home tomorrow or Thursday, I wonder how much sleep I'll get tonight?

Patience is a virtue

We have now been in the hospital for 22 days. 22 long days. I am starting to get to the point where I am really, really ready to go home. But, I know that I have absolutely no control over this situation, and that we just have to wait until Wyatt's body is consistently doing the right things. I also think that part of my problem is that I have been go, go, go for 22 days. During the day, and every other night, I am at the hospital with Wyatt, jumping at his every noise, watching his monitors, being a heart mom. On the nights im not here, I am home with Austyn, and we're doing homework, taking showers, picking up the house, playing, etc. and I generally go to bed as soon as he does. I haven't taken much time for myself, with the exception of getting my hair done today. I think my brain is just ready for a break, and it knows that the big break it wants will be when we go home. Wyatt's doctor, one of the 5 intensivists that work in the PICU, just told me "we are just waiting to make sure his body keeps doing the right things. It could be a couple of weeks, it could be a couple of days. I think he is more in the couple of days range." so we are definitely getting there.

The biggest hurdle between the PICU and home is Wyatt's eating. He is doing TREMENDOUSLY well. He just ate about an hour ago, and he ate 43 of the 50 required cc's. He ate extremely well last night, and then not so great this morning, and ok this afternoon. We think we've figured out he likes a specific nipple, he likes his milk rather warm, and we can't cuddle him while he eats or he will fall asleep. This last feeding, I fed him in the bed, just propping him upright, and did a diaper change half way through to keep him awake and alert. As much as I want to hold and snuggle him, I think I will feed him in the bed again at 9, in hopes it has the same effect. Since they only had to give him 7 cc's via his NG tube, they only spent 10 minutes pushing that. So he will have a good 2.5 hours between the last time he ate and the next time he eats to build up some hunger.

The other aggravating thing lately has been my milk supply. I went from pumping 80 ish ml's per pump about a week after Wyatt was born, down to 50 for the last couple weeks, down to 20 yesterday. Since pumping is the only thing I can do to help Wyatt, it's very important to me, and I've been pretty down about my supply. I started drinking water like crazy, making sure I eat a good meal 3 times a day, and pumping every 3 hours. I also elongated the time I am pumping, in hopes of telling my body it needs to make more milk. Today has been better, and I have been producing numbers I am more used to seeing. Since Wyatt is eating around the clock now, it would be ideal if I could keep up with his needs at the least, and pump some extra for the freezer too. We will see how it goes, hopefully we're on track to fixing my supply.

I am simply exhausted. The past 22 days plus my healing c section incision and wound vac have tuckered me out. Wyatt will eat again in about an hour and a half, and then I am hitting the sack, so I can sleep until he eats at midnight.

From one heart mom to another

When I was pregnant with Wyatt, I wished there was a way for someone to tell me what to do, how to do it, an how the hell to get through this. So, l have decided to start a list of helpful "tidbits" I find along the way, for those of you who are expecting a heart baby, and want some tips. I will update the list as I find more tips, as I usually find them in hindsight.

1. Enjoy every moment of your pre- surgery NICU stay. Those few days are the days that your baby will look as close to a normal baby as possible. Touch him, kiss him, change his diapers, spend as much time with him as your healing body will let you. Hold him if they will let you, and often. After surgery, it is a long wait until they will put your baby back into your arms.

2. Learn everything you can. Learn what medicines your baby is on, what those medicines do, what dose he is receiving, and how often he receives them. Learn what all the medical acronyms mean. Being informed makes the situation easier, you don't feel so in the dark and afraid all the time.

3. Ask questions! No question is a stupid question, and asking questions will help you understand everything that is going on. If you're uncomfortable with something, ask about it! No, you're no doctor, but you are a mom, and I think sometimes that says more than having a PhD.

4. Be an active parent. There will be so many doctors and nurses in and out of your baby's room to care for him, but he needs you too. He needs to hear your voice, feel your touch, get your kisses. And you need it. There won't be many things you're allowed to do for your baby, so don't let anyone take away the few things you do get. Change diapers (once you're allowed), reposition, feed, wipe eye crusties and lip gunk. Talk to him, tell him how good he is doing. Use this time to form that bond with your baby. We've also found that being super active parents has made the nursing staff more comfortable with letting us do things, and with giving us all of wyatts information without us having to ask for it.

5. Cry. I'd never make it through this if I didn't allow myself to cry. It is not a sign of weakness, it is a release. It is ok to cry- this is definitely one of the hardest things you'll ever go through, and bottling all that up simply can't be good for you.

6. Let people help you. Let them bring you food, help with the laundry, run your errands, whatever.

7. Take care of yourself, and call your doctor if you have any post birth complications. The last thing you want is an infected c section incision (trust me, I know this from experience).

8. Don't be in a rush. Trying to decide when your baby will reach each milestone, and when he will go home is setting yourself up for disappointment. If you must set mental deadlines, set them generously. We came into this saying "we just hope to be home by Thanksgiving." and now it is much more likely that we will be home for Halloween. It is much better to be pleasantly surprised than to have your expectations go unmet, and be disappointed. His body is in control, let him run the show. And keep in mind his body has been through hell and back, and is fighting to stay alive each and everyday. Celebrate the small victories (he pooped! They removed an IV! He ate! They weaned a med!) and wait patiently for the grand prize of going home.

9. Be open and honest with your partner. This sort of thing could absolutely kill a marriage. Talk about the things that scare you, that hurt you. Use eachother for support rather than as a punching bag. You need eachother more now than you ever have.

10. If you have other kids, love them. They too are struggling through this, and they still need to feel important and loved. I use Austyn as a mental break of sorts. It's good therapy for me to laugh and talk with my 6 year old, and to temporarily escape the consistent thoughts of medical terms, medicine, financial woes, future surgeries, etc.

11. Take time for yourself if you need it. Take a few hours and get coffee with a friend, go to lunch, grab a few beers, whatever. I honestly think that essentially hitting the "reset" button for yourself does wonders, and you can come back into the situation refreshed and ready to face it head on.

12. Be realistic. Don't fool yourself into believing that this is easy, or you've won the battle. Be happy for the steps forward your baby takes, but don't forget how serious this is. If you do, reality is going to come back and slap you in the face, hard.

13. Be vigilant and attentive. If you feel like something is wrong with your baby, you are probably right. Call the doctor. Immediately. Don't be afraid to look stupid. You can never be too safe with a heart baby.

14. Form a working relationship with your doctors. I can't tell you how many times Wyatt's doctors have commended us on being such good parents. They literally send Wyatt home earlier than they would send other kiddos home because of their faith in us. This is ONLY because we have worked hard to create that relationship with them, and show them that we are more than willing to do anything for Wyatt, and that we will call, at any time of day, if we feel like something is wrong. The nurse practitioner from our surgeons office literally texts me.

15. Be your child's #1 advocate. Know everything there is to know about his day to day care. Forwards and backwards. That way, if something gets missed, you'll catch it. This happened with Wyatt's medicine dose- they accidentally prescribed too much, and I caught it, called, spoke to the doctor directly, and figured out how much to actually give him before over-medicating him.

16. You do NOT need to dress to impress at the hospital. You are there to support your baby, not to look good. Go in sweats and a t-shirt. They are going to be very long days and nights on very uncomfortable chairs and beds. You'll want to be as comfortable as possible.

Eating by mouth

Wyatt's high flow oxygen was finally weaned down low enough (.3) to be able to attempt feeding him by mouth. I have been so anxious, and nervous, to get to this stage. I know that feeding by mouth is a big step towards being able to go home, but I also know that since he has never eaten anything by mouth, it can be quite a challenge to get him to remember how to do it.

But, my baby boy is a champion! He took right to the bottle today. He sucked adequately, swallowed, and took breaks to breathe like he is supposed to. He did SO good!

He only got to have 10 cc's of pedialyte at this first feeding, and he should have only had 5 cc's but the nurse wanted to watch him and make sure he was doing all the things he needed to be doing. We have to wait 8 hours to see how he does with having something in his stomach for the first time, and then he will get to try again. So far, 6 hours into that 8 hours, there have been no problems. When he gets to eat again, he will get another 5 cc's of pedialyte, and then we will have to wait another 8 hours. I am tightly crossing my fingers that the second attempt at feeding goes as well as the first one did.

Slowly but surely, we are getting there. We have been in the PICU for 13 days now, and Wyatt is 18 days old. While I would absolutely love to be home with DJ and Austyn, I know that we aren't quite finished healing from surgery and getting over all the speed bumps in the road, and I will patiently wait for Wyatt and his body to be ready to go home.

On another note, DJ has been having a rough few days here lately. I think after 2 weeks of this, and consistently being so tough, his first mental "break" finally found him. In addition to worrying about Wyatt every part of every day, our family is a bit torn apart, just to make matters worse. It is difficult for us to be apart all the time, to pretty much only see eachother in passing, and to not have any time together as a family. We haven't slept in the same bed in 18 days, and have probably another 2 or so weeks of sleeping not only in separate beds, but separate buildings and separate cities. I am trying to be the rock right now, because I feel like its my job to do so. I am doing my best to make sure that things run smoothly outside of the hospital, and make sure that life continues to run smoothly, since life refuses to stop while we deal with this hospital stay. It is exhausting, to say the least. And I am constantly trying to find a balance between having my brain be at the hospital with Wyatt, and focused on the other parts of our life that also need handled. I am also trying to make sure I am as present as possible the nights I am at home with Austyn, so he doesn't feel like he's lost his mom. And I know that DJ is doing the same. We will get through this, it will come to an end. I've just got to remain tough as nails until that time comes!

The waiting game

We are now 10 days post Norwood, and we are playing the waiting game. We are waiting for Wyatt's body to completely rebound from surgery. We are waiting to be able to feed him a bottle. We are waiting to wean him off all his meds. We are waiting to go home. After all the "excitement" of surgery, and those first few imperative days, this slower paced, not as stressful way is a relief. But, at the same time, it makes me ache for all these things to happen so I can take my baby home.

The thought of going home is one I dwell on everyday. I can't wait for Wyatt to be in his own house, with his own things. To be able to be with both of my sons, and my husband, every night. To be able to pick Wyatt up and hold him whenever I want, not just when we are told its ok. But, I am scared. I know that the time between the Norwood and the Glenn is a very scary, important time. I won't have nurses, and intensivists, and cardiologists, and monitors to constantly tell me how Wyatt is doing. I won't have all those things to help me know that he is ok. All I will have is my own brain, my gut instinct, a pulse ox machine, and a scale.

Also, the thought of going home is a reminder that even once we do go home, this battle isn't over. We have to do this all again when the time comes for Wyatt to have his Glenn, and then AGAIN when it comes time for the Fontan. It's a reminder that HLHS is a HUGE deal, and a never ending fight. A reminder that life isn't fair, and that my poor baby has to endure more surgery, more healing, more tubes, more discomfort. Shouldn't once be enough?!

I am so proud of Wyatt. He is such a strong, amazing baby. When I start to wonder if I am going to make it through this, I remember that Wyatt is the one who is really doing all the work, he is the one fighting the fight, and I will do anything in my power to support him. Forever.

These past few days I have been dwelling on the fact that life isn't fair. That Wyatt shouldn't have to go through this. That we should be at home, reveling in our new baby, and life as a family of 4. That Austyn should be getting to enjoy his baby brother, not visiting him in the hospital on occasion. That Wyatt's grandparents, and aunts and uncles and friends should be able to hold him, and love him. I know there is nothing I can do to change the situation, but damnit, I wish there was.

On a side note, I had my two week post op appointment at the OB yesterday. I had called them two days prior because I had a large, swollen "lump" that was really hard and red that I was pretty worried about. After describing it to them, they said everything sounded normal. Then, two nights ago, around 5 pm, I noticed my incision was seeping a little bit. At 10pm, there was still just a little bit of the seepage. At 11:30, the pad I had over my incision was sopping wet. After sleeping for 4 hours, the pad, my pants, and my blankets were all soaked from seepage. When I got to the doctors office and they looked at my incision, the nurse, NP, and doctor all said something like "that's impressive" or "whoa". The doctor poked a hole through my incision with a swab, and tried to drain the liquid out. He said the small hole would not be sufficient. He wanted to take me to the OR to re open the incision, and get it all drained and cleaned out. He checked his schedule, and found a time, but I had eaten too recently. So, they got some lidocaine, numbed the area, and quite literally pulled my incision back open. First, he tried opening it with the stick of the swab, which just snapped in half. Awesome, huh? After they cleaned out this new "hole", they packed it with wet gauze, and told me the dressing had to be changed twice a day. They tried to teach DJ how to do it, but he nearly fainted looking at it (apparently its about 4 inches deep- I don't blame him). Thankfully, I have a friend who is a wound certified nurse, and she has been able to help me and change my dressing for me. On Monday I am going to go back to the doctor and hopefully get a wound vac. I will have to carry a machine around with me until it heals (around 2 weeks) but the alternative is to continue to figure out how to get the dressing changed twice a day, and a much longer heal time. While this infection is NOT what we needed added to our plates, I am super thankful I have Natalie to help me out until I can get this wound vac. My mom would also be able to change the dressings for me, as she is also a nurse, but I really lucked out that Natalie is wound certified. So- anyone who has a C-Section and ends up with a large, swollen, hard lump under your incision- call your doctor right way and demand to be seen. You may be able to avoid being ripped back open and dealing with this mess.

I'll end with a picture of my sweet boy, who was wide eyed after Rachel and Steve's visit :) And also a photo of big brother Austyn from his visit today :)

7 days post Norwood

Today we are 7 days post Norwood. It seems crazy to me that it has already been a week since that terrifying day. Wyatt was extubated yesterday, and continues to do well breathing on his own. They have already turned his Oxygen level down to 27%. His flow rate on his high flow nasal cannula is still high, at a .7, because his right lung has been slightly "deflated" and they are trying to force more pressure into that lung. They say once the flow rate is down to a .2 or .3, we will be able to start feeding him by mouth.

They turned his fentanyl off yesterday mid morning, and by 9 pm, he was starting to withdraw. By midnight, they had started methadone to help him. He was awake yesterday from 3 pm until 11:30 pm, sleeping only during the hour I was able to hold him. They also had to administer fentanyl twice, while we waited for the pharmacy to bring up his methadone, just to keep him comfortable. Right now, he is receiving fentanyl every 8 hours, but they may up that to every 6 hours, to keep him comfortable. He is also on precedex, which is a secondary pain killer type medication, and that is being weaned .1 every 12 hours. It will take a couple of days to wean him off that completely. They told us that sometimes, heart kids go home on methadone, which can be given by mouth, to continue to help them with withdrawl. 

I just don't think it's fair. He already  had to endure being poked and prodded from the moment he was born, a 12.5 hour open heart surgery, a second surgical operation just two days later, and now he has to deal with withdrawl. I wish there was some way I could take his place. Someway I could endure the hurt for him. So he could just be a happy, normal baby. 

Given his circumstances, Wyatt is doing tremendously well. I feel like each and every day we are taking steps in the right direction (going HOME). Yesterday was extubation. Today, they took out his foley catheter, and his rectal temperature probe. His chest drainage tube is draining far less today than yesterday(8 today vs. mid 40's yesterday), so my fingers are crossed that that will get removed tomorrow. He is breathing VERY well on his own, with O2 sats in the high 70's to low 80's, even with the small amount of collapse in his right lung. I was very nervous for extubation, because I was afraid that they would have to re-intubate, but I think we have won that battle. His blood gas levels remain steady, and his creatinine levels are finally falling. They started his TPN (IV nutrition) two nights ago, so he is finally being "fed" again. He should start receiving pediasure via his NG tube soon. 

I am so proud to be this little bug's mommy! His neighbor in the PICU also had the Norwood procedure done, the day after Wyatt's norwood. And Wyatt and the neighbor are on the same path, both extubated the same day, etc. even though Wyatt's surgery was 12.5 hours, and the neighbors was more in the expected 4-6 hour range, and Wyatt had to be on bypass twice, and the neighbor didn't. It gives me hope that Wyatt is doing so well, despite the additional shitty hand he was given after birth. He is such a fighter, so strong. 

We are still adjusting to going home every other night. While we want to be with Austyn, and play, and laugh, it is very very hard. Our hearts are currently in the PICU with Wyatt, just as they would be if Austyn was sick and in the hospital. It is a daily struggle to be the parents that Austyn needs us to be, because our baby is sick. But, we are doing it, and I like to think we are doing it well. Austyn seems to be, for the most part, himself. He has been a little whiney lately, but I attribute that to the situation, and strive to be as patient as possible with him, so as not to take out my anger, hurt, or frustration on him when he doesn't deserve it. The other side of this situation is loneliness. Dj and I hardly get to spend any time together, and when we are together, its in Wyatt's PICU room, with nurses, and intensivists, and cardiologists, and RT's, and nephrologists, and speech therapists. We haven't had any real alone time since Wyatt was born. Thankfully, our marriage remains strong, and we are each other's rock. I miss my best friend like crazy, who I haven't seen since Norwood day. Her family of 5 has some sort of flu or bug going around, so we don't want to risk Wyatt's health by getting together. So during the day, we are at the hospital, and at night, we are alone, either at home or in the PICU - we miss our people. 

That all being said, I continue to look forward to brighter days. I am now able to imagine my sweet Wyatt at home, in his swing, in his clothes, in his house. I am able to imagine life as a family of 4, which I have been unable to do since receiving Wyatt's diagnosis. Today I was told that case management would be speaking with us shortly about the things we will need once Wyatt is discharged. That in no way means that discharge is close, but is does mean that Wyatt's doctors see discharge in his future. 

None of this is how I imagined it would be. If I could give any advice to a family who is expecting a heart baby, it would be to try to mentally prepare yourself for the absolute worst, no matter how hard it is to fathom. And then expect that the hurt you will feel will be 10x what you imagined. There isn't a day that goes by that I am not terrified. I can't imagine my life without Wyatt, now that he is here. Just typing those words brings tears to my eyes immediately. But, I know that it is a real possibility, and that between now and the day he has his Glenn, we are fighting a consistent battle. But, together, as a family, we will support Wyatt, and help him get to safer days, no matter what it takes. Our love is strong, and powerful, and we can do this.

I love you sweet boy. SO, SO much. 

10 days old

There is a part of me that can't believe Wyatt is already 10 days old, and another part of me that can't believe he is only 10 days old. Of course, the part of me that can't believe he is only 10 days old is probably the part of me that has been playing the role of the over-protective, worried, stressed out Mom.

We have only just begun this journey with Wyatt, and it has been so much harder than I expected. Once he was born and taken to the NICU, the worry was instantly 100x greater than I had imagined. We had some great days during his NICU stay, and some perfect, priceless moments like the first time we got to hold him when he was 3 days old, or when Austyn got to meet his baby brother. And then the day of surgery came, and the fear was so powerful. I expected to be scared and stressed, but did not expect it to feel like that. And now that we're 4 days post op- I worry all the time. I worry about every number on the screen. I worry about upcoming hurdles; extubation, eating by mouth. I worry that he's holding his arm up funny, or that he moved weird, or whatever.

But, most of all, I look forward to getting past all these hurdles and going home. I look forward to having our family of 4 finally complete, and at home, where we can all be together each night. Being home will also mean, however, that Wyatt's Glenn procedure will be closer, that we will have to face the stress and fear of the OR again. That we will have to go through more nights of feeling guilty for being at the hospital, and feeling guilty for being home. Thankfully, with the Glenn comes some peace of mind, as all my research has shown that after the Glenn, HLHS kids are far more steady.

I so wish there was a way for me to make this all go away, make it so Wyatt doesn't have to go through all this. Make it so we don't have to hurt, as his parents, his brother, his family, his friends. But I can't. If I could, I would.

Sternal Closure

Today, two days after his Norwood, Wyatt's sternum was closed. They turned his PICU room into an OR, and just had us leave while they did the operation. The intensivist on duty today was pretty leery about letting them close, mainly because of the upper chest edema Wyatt is still having, but his surgeon talked the intensivist into it. Wyatt tolerated the closure extremely well. They said his heart rate and blood pressure didn't even change during the operation. His vitals have been more steady since they closed. He had a lot of packing in his chest from trying to stop the bleeding in the OR, and that packing may have been blocking an artery, but after closure, they were able to turn his oxygen down to 40% and it had been at 60% prior to closure.

The plan for now is just to wait. They have stopped weaning him off his meds for a day, and are just letting him sit. We are watching his urine output, his drainage, and his bilirubin levels. Post closure his heart rate has dropped considerably, he was in the 190's last night, and is in the 150's now, which is near or at the normal heart rate for an infant.

Our next hurdles will be weaning him off his supportive meds, and getting him to breathe on his own. Today's intensivist said he is thinking possibly Monday for extubation, which is earlier than I had expected, but would be wonderful! We also need to get him to eat after extubation, which we anticipate could take weeks. Wyatt has never eaten by mouth, so we will have to teach him how to eat. I dont imagine I will be able to breast feed him, but I've been pumping him a nice stock pile of milk for bottle feeding. The good news is that he took to his binkie before surgery, so we are hoping he will have gotten some practice on his suck/swallow reflex from that.

In all, today has been a really good day. After the day we had during and after surgery, we so needed a good day like this. My fingers are tightly crossed that the days will continue to be successful.

Tomorrow afternoon I am finally going to go home to be with Austyn. It will have been 9 days since I've been home with him, or even at all, and I am really excited to be with my big guy. I am scared to be away from Wyatt, but can find peace in the fact that his Daddy will be here with him. I'm hoping for a smooth, calm evening here in the PICU so both Wyatt and I can get some peaceful rest.

The Norwood Procedure

Today was D day. We went down to the NICU at about 5:30 this morning to be with him before surgery. They took him out of bed so we could hold him as soon as we got there. I was watching the clock, making sure I left enough time for DJ to hold him before surgey too. We asked the nurse to help us switch, and she said that they had pushed the time up on us, and we're on their way to get him. So DJ was not able to hold him prior to surgery. I just plain sobbed. I felt so terrible, like I had deprived him of time with his son. It wasn't my fault, I know, but I still felt terrible.

The anesthesiologist came, talked to us, and DJ signed the form. Then we put him into an incubator for transport. I was a mess the entire time. Sobbing, sniffling, dripping tears onto Wyatt, the whole 9 yards. We got to pre-op, where we waited for the surgeon to come in. He came in and talked to us, and gave us a Willow Tree person as a gift. Then, they took him. They wheeled him off, away from us, into the OR. Then came the outloud, absolutely devastated, sobbing.

Anticipated finish time for surgery was 2 pm. Cut time was 8:45 am, and he went onto the heart/lung machine at 9:45 am. At first, things were going fairly smoothly it seemed. But then, at 2 pm, the nurse came out and told us that they had tried to come off the heart/lung machine, but had to go back on because they had to work on his aortic arch again. Time kept passing, and no one was telling us much of anything. Finally, we found out that he had been taken off the heart/lung machine, and they were working on controlling bleeding. We sat for 4 painstaking hours, waiting to hear something.

We sat, wondering if he would come out of the OR. They were having a really hard time getting his bleeding under control, and I started to wonder how long they would try to stop it before they gave up. I was terrified that they were going to give up on my baby.

We finally went to the PICU because I needed to pump, and DJ asked if they had heard anything. They said that it should be about 30 more minutes, and they'd be bringing him up from the OR. Tears immediately streamed down y face. That meant they got the bleeding under control. That meant he made it. They had to administer factor 7 to get the bleeding to stop, but they did it.

They let us come see him for just a minute, touch him, and kiss him. Then they spent about an hour and a half getting him situated and stabilized in his room. They took lots of x rays, etc.

Now we are in his room. He has lots of nurses surrounding him constantly, and a doctor in here very often. They are trying to figure out what dose of each medicine he will tolerate that will keep him stable and keep his vitals in a healthy range. His blood pressure was really low there for a while, but that seems to have gotten better. His heart rate has been steady around 167 bpm. His blood pressure is 83/63, and they finally got his pulse ox to come down to 83. They want his pulse ox between 75 and 85. They are figuring it out.

It is odd to see him breathe so rhythmically, because he is intubated. The gaping hole in his chest is a sight, that's for sure. And it's going to take some adjusting to him not reacting to our touch, because he is out. But al in all, he isn't so bad to look at. I anticipated seeing him being a lot more painful. Hearing the alarms going off on his monitors all the time is really hard, but we know that the medical staff know what they are doing.

It has been a very long, difficult day. Way more difficult that I imagined it would be. But, we made it. Now we just need him to stay strong, and get through this very touchy 12-24 hours, and stay strong so he can come home!!!

An AMAZING 3rd day

Today was an absolutely, positively, amazing day!

My dad brought Austyn to see us at the hospital, and we had already talked to Wyatt's NICU nurse about bringing Austyn into the NICU to meet Wyatt. We were so excited to see Austyn, and to finally introduce Austyn to his little brother. When Austyn got here, he sniffled a few times, and DJ and I ended up deciding that because of those few sniffles, we shouldn't take Austyn into the NICU. So, we went walking down to see Wyatt, and I lost it. I was so heartbroken that Austyn wasn't going to be able to meet Wyatt. We got down to the NICU and the nurse asked where Austyn was. We told her what happened with the sniffles, and she asked if he was sick. We told her no, that he was not sick, and that he had been camping this weekend and had a campfire and we assumed that was where the sniffles had come from, but that we had decided not to risk bringing him in. She told us to go get him. So, I lost it again. This time, crying tears of joy, of course, that our boys would in fact be able to meet.

We went and got Austyn out of our hospital room and took him down. We explained to him how he needed to be quiet, and he couldn't mess with all the stuff in the NICU. He washed his hands with the nurse singing "Happy Birthday" to Wyatt as a way to make sure he washed his hands long enough. He got to see his baby brother for the first time (other than in pictures) and smiled a big old Austyn smile. I of course cried, again, at the sheer beauty of this moment. 

Then, the nurse swaddled Wyatt, and got him out of his bed and put him in my arms for the first time in his life. Wyatt is only 3 days old, and I know that in the grand scheme of things, 3 days is not a long time. But when you are waiting to hold your son for the first time ever, and you know that there is a possibility that you will not get to hold him before he has open heart surgery, 3 days is a VERY long time. I finally had my baby in my arms. Cuddled up next to my body, able to feel his weight, his breathing, everything. I remember the first time I ever held Austyn, just minutes after he was born, but this was different. This was SO powerful, I think because of Wyatt's HLHS, and because I had to wait to long for this moment to come. Austyn stood next to me and watched Wyatt, and we made a few little jokes and things to make it more fun for Austyn. Babies aren't really all that exciting to kids, I know, so we tried to make things more entertaining for Austyn. Eventually, Austyn said that he was ready to go back to the hospital room, so DJ took him back upstairs while I continued holding Wyatt.

When DJ got back, we switched, and he got to hold Wyatt for the first time. He instantly cried as well. And he got his turn to just sit in the chair, and snuggle with Wyatt, and feel the weight of him in his arms. 

The entire time we were holding Wyatt he was so awake and alert. His eyes were open, he was looking around, and looking at each one of us when we spoke. We told Austyn that our voices were familiar to Wyatt, and that he knew that we were his Mom, Dad, and Big Brother because he could hear us while he was in my tummy. It was so great to see Wyatt so alert and awake, since he is usually sleepy and when he does wake up, he isn't that alert. The nurse told us that us holding Wyatt would give him a large endorphin rush, and that it was really good for him to be held. She said that he may sleep for 8-12 hours after the encounter, because of all the endorphins and hormones that were released. She also said that my milk production would probably increase because of the encounter, because being so close to Wyatt like that had a huge affect on my hormones.

After we were finished, both DJ and I felt a huge high. The feeling was astronomical. It is almost unexplainable. We were both completely filled with joy. The only downside was that we were planning on eating some lunch with Austyn after we were finished with Wyatt, and when DJ came to bring Austyn back to the room, a couple more visitors had showed up, so my dad decided to just take Austyn home, and we didn't get to have lunch with Austyn like we had wanted to. I didn't get to say goodbye to him or tell him I love him before he left, so that left me a bit sad. The rest of our day was so crazy, we had visitors back to back the entire day, and we didn't get a chance to call Austyn, so I am now missing him like crazy. I plan to call him in the morning before he goes to school just so I can tell him I love him. 

We ended our day with Wyatt, and I sat in the chair next to his bed for 45 minutes or so, just holding his hand, and watching him sleep. It was so peaceful to just be next to him, watching him. 

It was such an amazing day, and a wonderful way to bond with both of our boys, who mean the world to us. I couldn't have asked for a better day. Tomorrow I am being discharged, and we are going to try to board at the hospital, so we can stay with Wyatt here until he gets transferred to the PICU after his surgery. Hopefully, we are able to do so, and aren't forced to go home each night. Fingers crossed it all works out.

 

Adjusting

It's the end of day #2 as heart parents. Making the regular trips from our room on the labor and delivery unit down to the NICU to be with Wyatt has become very natural and routine. Spending time with him, holding his hands, rubbing his head, changing his diaper, taking his temperature....it's all become so...."normal". Or at least it's become a new normal.

But along with that new normal comes all these new pangs of guilt. We have set care times where we are allowed to be more involved in Wyatt's care, and they are every 4 hours. When we go down for care times, we generally spend about an hour with him, and then let him rest. We feel so guilty for not being next to his side at all times, but at the same time we feel like we should leave him be, so he can sleep and rest and get as strong as possible. They are going to discharge me from the hospital come Monday, and we don't want to be away from Wyatt, so we are going to see if we can board at the hospital, in order to be closer to Wyatt until he has his surgery and gets transferred to the PICU. But then I feel guilty that we won't be home with Austyn. I know that this whole situation is difficult for him, too, and I so badly want to be home with him laughing and playing. But I can't imagine not being next to Wyatt through this entire experience. I sort of feel like no matter what I do, I'm not doing the "right" thing. It is so frustrating and heart breaking to know that I can't fully be the mom both boys need me to be, simultaneously.

I think Austyn is going to come visit us tomorrow and I am SO excited to see him! We talked to him on the phone today and he sounded so grown up, so big. Im sure that's partially because we've been spending so much time with his baby brother, but still. My little guy just doesn't seem so little anymore. I can't wait to hug and kiss him and love him when he comes to visit. We may also be able to take him to meet Wyatt for the first time, which will be great, and will be the first time we will be together as a family of 4.

All the anger and resentment I thought I had gotten rid of has returned in the past 2 days. It's hard not to be jealous of the families who's babies are healthy, who get to keep their babies in their hospital rooms with them. It's hard not to hate life for handing us such a shitty deck of cards. But as I say that, I also think that without these cards, we wouldn't have Wyatt. We wouldn't have this beautiful boy that we love so much. The boy who loves to hold our hands and have his head rubbed. Who smiles his 2 day old smile, with his little monkey toes, and his perfect little face. Who coos and looks up at us with his cloudy brand new eyes. Just starting this part of our journey makes it hard not to resent that we don't get to take our perfect little baby home tomorrow like all those other families get to do.

In all, I would say we are doing well. The days go by fast between being with Wyatt, and pumping, and trying to give myself the rest my body needs, and all the amazing people who come to visit us. Wyatt is doing so much better than we had anticipated, which has allowed us this great time to just bond with him and love him before his surgery next week. DJ and I's relationship is still very strong, and our communication about the entire situation has been great. He has definitely earned husband of the year award taking care of me while I heal from my C-Section, and helping to make sure I take care of myself, not just Wyatt. He also, of course, gets the Daddy of the year award for being so awesome to both Austyn and Wyatt, and for being so strong for them both.

I dread surgery next week, and seeing Wyatt with so many tubes, and intubated, and trying to recover. I dread having to put Austyn through that, and having to be away from home even longer. But I have to focus on the now, and be thankful that Wyatt is doing well, and that Austyn is a happy, healthy 6 year old. I have to deal with each bump in the road as it comes, rather than trying to deal with the future bumps early.

I love my family SO much! And I am going to do whatever I have to do to keep us ALL happy, safe, and healthy.

Our first day as heart parents

It is officially safe to say we are 100% absolutely in LOVE with Wyatt. Every moment we get to spend with him is amazing! Even though he is in the NICU, we are still forming that baby to parent bond. Just this morning he was a little fussy, and as soon as I gave him my finger to hold and started rubbing his head, he started sucking on his pacifier and cooing, calming down completely.

Both DJ and I anticipated that these first few days would be really difficult and tearful. But both yesterday and today have gone much better than we expected. Wyatt is doing SO well in the NICU. His O2 Stats are amazing, always in the 90's. Anything above 70 is good for Wyatt, so the 90's are tremendous! His heart rate is steady, and he is doing all the things he should be doing. 

We were able to help his nurses give him his first bath this morning, which was amazing. He isn't eating by mouth, but I am pumping and the NICU is storing my milk for his use later on, hopefully. Every 4 hours we are able to go help the nurses take care of him, checking his temperature and changing his diaper. 

Austyn was able to come visit me in the hospital last night. He was pretty freaked out because he went to bed Wednesday night with everything right as rain, and then woke up Thursday morning with his mom and dad at the hospital. I think to a 6 year old, anyone in the hospital is dying or seriously injured, so the thought of his mom being in the hospital really scared him. Once he was able to see that I am fine, just healing, and that I am still the same old mom, he felt much better. He is going on a little camping trip this weekend to help keep him occupied and entertained, and we are hoping on Monday we will be able to introduce him to Wyatt.

All in all, we are doing well. Wyatt's strength is absolutely amazing and uplifting. I am healing really well, and have rebounded from my C-Section well. We have had a ton of visitors and support both through the blog and through Wyatt's Facebook Page! We are absolutely amazed with how many people are sharing Wyatt's story and praying for him, and we appreciate every one of you. 

I will do my best to update the blog as much as possible throughout our stay here at the hospital. Again, DJ and I appreciate each and every one of you and your support. Wyatt thanks you too....can't you tell by his beautiful little face?

Happy Birthday sweet boy

Around 11 last night I had a hellacious contraction that lasted 10-15 minutes. Afterwards, I laid back down in bed figuring if I was in labor I wouldn't be able to sleep. I woke up at midnight to another hellacious contraction and my water breaking. So I woke DJ up and told him I thought we needed to go to the hospital. We called my mom to come over since Austyn was sleeping, and we called my best friend to let her know, and we headed to the hospital.

It was around 12:30 when we left the house. We got to the hospital, got to labor and delivery, and eventually they checked my cervix. I was dilated to 8! So things got crazy. There were tons of nurses and doctors everywhere, and my contractions were closer and closer together.

We went to the OR, and I eventually got my spinal block. I had a contraction while they were putting it in, and cried out in pain. DJ heard me from outside the room and panicked. He knows I am good with pain so the fact that I was crying out was not good. DJ got to come back in, and it was operation time.

Wyatt was born at 2:13 am. He came out crying just like any other baby. DJ was able to cut his cord, and they brought him over to me so I could "hold" him and kiss him before he was taken to the NICU. He looked amazing, was crying normally, and was breathing on his own. In the NICU, he got his catheters inserted into his belly button, and started giving his prostaglandin. They administered vitamin K, checked his blood sugar, etc. They said his hips are a bit weak and they may put him in braces until his bones start to fuse. He is doing well, all things considered.

I am waiting for the feeling in my legs to come back from my spinal block, and it is currently shift change in the NICU. Shift change is over in about an hour and I should be able to go be with Wyatt then. DJ is doing well, he's very tired since we didn't sleep, but doin well.

We are so excited that our boy is here but we are so afraid of what is to come. We're here for you Wyatt, I promise!

Listening to your gut feeling

This morning, I was driving to work, and I was thinking back to the beginning of this pregnancy. January 26th, we got our positive pregnancy test, and I couldn't believe my eyes. I yelled for DJ to look at it, and he saw two lines too! I cried the moment he said it was positive. We were both SO excited.

Then, as time went on, I didn't feel as excited as I thought I should. I had expected to have this overwhelming sense of joy. I expected to be consistently excited to be pregnant. We had waited for that positive test for over a year- where was my excitement? I shrugged it off, thinking my brain was just playing tricks on me.

Then the paranoia kicked in. I was constantly paranoid that something was wrong. I was terrified of miscarriage, or some other terrible news. We had our first ultrasound, and our little peanut was perfect. But still, I couldn't shake the paranoia. Then we had our blood work done for down's syndrome and what not, which all came back negative. I thought maybe that was what I needed to start feelin better. But it wasn't. I still had the paranoia. I had told DJ about it, and we decided I had spent too much time on trying to get pregnant forums, and had read too many other sad stories.

So even though I was telling myself of was all in my head; the doctors said everything was fine, I couldn't shake the nasty feeling I had. May 22 was the day we received Wyatt's HLHS diagnosis. We took Austyn with us to that appoinment, thinking it woul be neat for him to see his baby brother or sister, and to be there the moment we found out if we were having a boy or a girl. But I had a bad feeling about tht too. I remember thinking "what if we get bad news, I dont want Austyn to see my reaction, see me cry,etc." But, again, I ignored the thought. My intuition had been right. Something was wrong, very, very wrong.

That day I finally admitted to my best friend that I had had this paranoia the entire pregnancy. She said that she too had had a bad feeling the entire time. We were both just too afraid of our bad feelings to tell the other about them.

I recently learned of a girl we know who is newly pregnant and had some cramping and things. I immediately said "if she feels like something is wrong, she needs to listen to that gut feeling". In our case, even if we had gone to the doctor earlier than 20 weeks and demanded more testing, our situation would be the same. HLHS isn't the kind of thing you can "fix" if you catch it early. There was nothing we could do then or now to change the outcome. But still, I wish I had listened to that gut feeling rather than shaking it off for 20 weeks.

Hindsight is always 20/20 isn't it?