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!!!