Slow and Steady

Amelia is taking her sweet time, getting recovered. She deserves all the time in the world, but I just want to be passed all the roller coasters. Everyday is a roller coaster. She is either not awake enough(because of meds) to cough and clear her lungs, or she is too awake and could stress her heart out. So finding the balance is really hard. If her lungs stay gunked up, her sats drops and doctors stand over her bed. If she is awake and crying for more than 10 minutes, they rush to give her some morphine, because they don't want to risk her getting too stressed and needing to go back on the ventilator. As I typed this, her alarm started going off. It's usually her SATS, but this time it said apnea, meaning she wasn't breathing. This never happens, so I got nervous and a nurse came in and assured me that it's because her breaths are really shallow(meds make her sleepy), so the monitor just wasn't picking it up. The adrenaline rushes never stop. 

They're constantly tweaking something with her meds or oxygen. One med can come down slowly, only to realize that it drops her blood pressure, so it needs to come back up. Another one will spike her blood pressure, so go down on that one, oh wait...go back up, her blood pressure dipped again. They'll start to wean her oxygen a little and she will do fine and then she'll have to go back up because her SATS drop. It's just a frustrating struggle. Poor Amelia, I can't imagine how frustrating it is for her. Luckily, they're doing cluster care, meaning, all nurses and doctors come in at once and take a listen and mess with her, instead of coming in whenever and disturbing her right after she falls asleep. 

It will be a slow recovery, which I understand. It's just hard, because she recovered so fast last time. We had a meeting with all her doctors and nurses, and her surgeon said that the worse time to open a baby back up after heart surgery is 3 to 6 weeks after surgery. They reopened her at 3 weeks after her surgery. So not ideal at all. I understand that we need to be patient with her and just let her slowly recover, but I am just having such a hard time being patient . 

Her surgeon said that she needs a good amount of time to not be recovering from a surgery. She needs to just be a baby in a blanket for a while, before they'll consider the Glen surgery. It was mentioned that possibly the end of March she could go for her second surgery, which is what we're waiting for. I am in no rush. I just want to wake up at home, with Amelia right next to me, recovered from her second surgery. 

Life is going on all around us. I can't believe that it's almost February. Emma is about to be 2! Amelia is about to be 2 months old. I have gone home a couple times now, just to spend time with Emma in our normal setting. It's nice to do that, but it makes me miss it so much more. David went home last night and there was a big hold in our kitchen ceiling from the toilet running upstairs. When it rains, it pours. Literally. 

Prayer requests:

For Amelia is gain weight. They have her feeds fortified to 27k cals an ounce and that is super thick stuff. They add formula to the breast milk, so it's super thick. Her tummy doesn't like it  a whole lot. She just needs to consistently gain weight everyday before they'll come down on the k cals. 

She is really touchy with her medicine. It would be nice if she could start weaning off of stuff, and stay off of it. 

For her to be alert and happy more, so they can come down on sedation meds. She is so sleepy that she isn't coughing, which is bringing her SATS down.

Our kitchen ): There is an ugly hole in the ceiling. Pray that there isn't too much water damage.

AND FOR THE WEATHER! It's cold!! I am not asking for much, just maybe temps in the 30's would be nice. No more -30 wind chills, please.

Thanks for all the prayers, y'all. 

Love, 

Kelly

A few steps backwards

Imagine every time you took a breath, that your airway almost completely closed up. Now imagine that people were always messing with you, waking you up just after you fall asleep, and giving you nasty shots in your legs every 12 hours. Now, imagine only being 6 weeks old, and all of this makes you cry. Amelia is really swollen in her throat because of where ECMO went into her neck, and because of the breathing tube. The first few days after being taken off of the ventilator, she had a pretty bad stridor, and was working very hard to breath. Friday night she got so worked up and wouldn't calm down. Her SATS, which are very important, dropped down into the 30's. They're supposed to stay between 75-85, and can drop into the lower 70's when she is upset, but really shouldn't drop any lower than that. So you can imagine that the 30's is a dangerous place for her. When she had her first "event" in the OR a couple weeks ago, her SATS dropped into the 50's, but her heart rate dropped very low. This time, her heart rate stayed stable, which is good, so they didn't have to do CPR or put her on ECMO. They did, however, decide to put her back on the vent and let her body relax while it breaths for her. They wanted to get her on the vent to prevent her from having another "event", as they call it. Luckily she got stable really quick aftet that. The swelling from ECMO should be going down right now, so hopefully when they take her off the ventilator, she will have an easier time breathing. 

Her blood pressure did dip really low for a while on Sunday, so they're keeping a close eye on her. 

This is obviously a bummer, I feel so bad for the poor thing. She just can't catch a break. Today they are doing an ultrasound on her kidney's, an echo, and putting a picc line in her leg. The picc line in an IV that has a catheter that goes pretty close to the heart. This kind of IV can stay in for a long time and carries less a risk of infection. The last thing Amelia needs right now is an infection. 

Things to pray for:

~Her blood pressure, we really need it to stay stable. 

~Her swelling. It would be nice if her swelling would go down a lot, so that when they take the tube out, she can breath comfortably. 

~The ultrasound on her kidneys. Unfortunately, these surgeries can cause the kidney's to take a hit, so we're hoping that they have bounced back just fine. 

~That they can get the picc line in easily. They tried last week, but weren't able to get passed scar tissue from the picc line that they put in after her first surgery. 

~David, Emma, and I all miss each other. Terribly. ): 

Thanks everyone, for your encouragement and prayers. We love and appreciate you all very much. 

Love, Kelly

Off the ventilator!

We've reached a wonderful milestone! Amelia was taken off the ventilator. She was so uncomfortable by it. I forgot how hard it is to see her one the vent, even if she isn't in pain. It's hard to watch her just look around, but she can't coo or cry. I hate seeing those groggy, confused eyes. SO when her doctors felt comfortable taking her off of the vent, I was obviously excited! 

They removed the breathing tube yesterday morning and it's been a little rocky. She has LOOKED really good, her sats, blood pressure, pulses, and heart rate are all great, but she has a really loud strider. It basically sounds like she is struggling to breath. For hours, it was hard to tell if she was in pain, going through withdraws, or if the difficulty breathing was ticking her off. Since they took the breathing tube out, there is likely swelling, causing there to be a strider. Her strider goes away when she is positioned well and calm. The second she wakes up and starts crying, she gets angry. Poor thing. It is so incredibly frustrating to not know what is wrong or what you can do to fix it. The nurses kept giving her morphine to calm her down. I hate that my tiny baby has to have narcotics to calm her down. What the heck happened to simple tylenol? Not Amelia, she has so much pain, and probably withdraw, that she requires morphine. Poor sweet girl. 

Today is less frustrating. I got here this morning and she was upset and still had a strider. They were treating her with morphine every time she woke up, because she would wake up super angry. So the had ENT(ear, nose, throat) come and do a scope of her vocal cords and throat. That was no fun for her. I got to hold her for the first time during the scope. They stick this camera down her nose and look at her airway and vocal cords. It was pretty cool to be able to see that. It showed them that she is VERY swollen. Basically when she cries, her airway almost completely closes...which you can imagine is awful and frustrating for her. Now that we know this, we wait. Wait until the swelling goes down. So she is on a steroid to help her swelling, and morphine when ever she needs it. 

After the scope, I got to sit with her for a good while and rock her. She was out the second they were done. After a little while, she woke up and was angry, but I was able to console her, and then she was awake and happy. No crying! I love when she can be awake without crying. I have missed it. Her nurse got her a mobile and she was watching it and following it with her eyes! So sweet to see her do "normal" baby things. There is nothing normal about a baby having IV's and open heart surgeries. 

Thank you, everyone, for the prayers. She is doing SO WELL! Doctors are so happy with her. It's a much lighter atmosphere when a doctor walks in. We're not all on edge or nervous all the time. It's a much better feel. 

Things to pray for:

~That she continues to do well. 

~It would be nice to get by with her not going through withdraws.

~I miss Emma and David ): 

Thank you so much for your prayers

Love you all, 

Kelly

One month of Amelia

  

Shortly after the last picture was taken, Amelia was taken down to the O.R for her G-tube. You all know the rest.

This is her first month. It's been such a roller coaster. Amelia has been through so much. I can't imagine going through any of this in one lifetime, let alone the first month of life. Girlfriend is strong and I cannot wait to see the person she becomes. Here's to 100,000,000 more months (;

Thank you, again for your prayers.

Love, 

Kelly

One Month

Amelia is doing well. She is behaving herself while she is still in the critical stages. 2 nights ago she had what nurses thought to be a seizure, but nothing showed up on the EEG. The EEG is constantly hooked up to her head. The doctors have said that it's possible that the seizure happened below where the EEG leads can pick up, but the fact that it has only happened once, and everything else looks good, is promising. Her head ultrasounds are also promising. 

I'm home for the first time in a month. I can't do anything for her, and I need a break. David all but forced me to leave. (: I need to be home for a couple days and recover from everything. I could also use some serious Emma time. 

Amelia was wide awake and moving when I left the hospital . I think this is the hardest part of everything. Seeing her wide awake, she can't move, can't make a noise, but she can feel. She can't let us know she is in pain by crying, we have to wait until her heart rate and blood pressure rise before pain medicine can be given to her. It breaks my heart to see her groggy eyes. I can tell she is confused. I want nothing more than to pick her up and comfort her the way I am SUPPOSED to. I look forward to the day that we get back to "normal". When I can rush over to her when she cries. 

Right now I have to put my trust in God that everything will be okay. It's not always easy, but worth it. 

Prayer requests:

No more seizure scares!!

That she remain comfortable. My biggest fear is that she would be in a ton of pain and nobody can get in under control. 

For my time home to be just what I need. 

Thank you, everyone, for your prayers. 

Love, 

Kelly

Redo

Right now Amelia is stable. She is doing as well as possible, while hooked up to the ECMO and ventilator. 

Today she went into the cath lab, to have dye shot into her Aorta while pictures were being taken. This would show them if anything was twisted, clogged, or closed off. There was also a possibility that they were going to be able to unclog the shunt and put a stint in the shunt to hold it open. Everything looked wide open, except that there was a clot on one end of the shunt. There was still blood flow, but a clog was forming. Unfortunately, they were unable to safely get into the shunt and do what they needed to do.

SO, tomorrow Amelia will be going for round two. She is going to have her shunt replaced. They're going to have to open her back up. It's more complicated since she has scar tissue now. It's risky. 

Prayers for a successful surgery, please. Her surgeon is confident that if this surgery goes well, that she'll pull through. 

We're obviously very saddened that she has to go through everything all over again. She'll likely come back with an open chest, she'll have chest tubes, and all kinds of wires and IV's....all over again. 

We won't be leaving, most likely, until her next surgery, the Glen. The Glen is typically done around 4-6 months. 

Thanks for your prayers and encouragement. 

We love y'all,

Kelly

Not according to plan

Amelia went in for a very basic surgery. She came out on an ECMO bypass machine and right back at square one.

I was in the middle of a conversation with a cardiologist, talking about discharge instructions, and in walks another doctor. He is out of breath and asks to have a word with the cardiologist. When they leave the room I see a lot of scurrying nurses. They were whispering "what's going on?". The doctor walks back in and says "there's been a complication, it's very serious and that's all I know." Really? I called David, who just started back at work, and he came as quickly as he could.

This morning, before the chaos, Amelia's SATS were a little lower than desired, so they did an echo on her. Everything looked great. The shunt that was put in her heart during the original surgery(http://babyheart.in/tag/blalock-taussig-shunt/), was wide open and everything looked good. A couple hours later they took her to the O.R.

So they started anesthesia and she handled all of that well. After 45 minutes they were just about to start the procedure when all of a sudden her oxygen levels bottomed out. They had to start CPR, but while all this is happening, her organs, most importantly her brain, wasn't getting any oxygen. BY THE GRACE OF GOD, this happened in the O.R, but more so,  her cardiac surgeon was in the room right next to her and he was able to run over quickly and get her hooked up to the ECMO machine. She was out for 25 minutes. Right now we are waiting to see if this had any effect on her brain. So far, so good, but it's early.

So what is believed to have happened is, the BT shunt just up and decided to clot. The BT shunt provides blood to get to the aorta, which gets blood to the rest of the body. This complication is the biggest threat to these babies. If this had happened anywhere else, she would have died, most likely. I cannot wrap my mind around that. 

We're back at square one. They're going to have to go back into her heart and redo everything. She'll need a new BT shunt. There will need to be a bunch of tests, but right now it looks like surgery will be on Friday. \

I am so grateful to God that everything lined up well enough that she was in the O.R when it happened and that her Cardiac surgeon was just right next door to her. I am going to be honest though, I am so pissed. We were so close. I could see the light at the end of the tunnel. For the love, we were talking discharge instructions when this happened! I am still in a cloud of information. I feel like I could sleep for a week. 

Right now our prayer request is that our sweet girl would have NO damage to her brain or other organs. We need her body to rebound well from this so that she can go into surgery in the best state possible. 

She has been through so much already, I am heart broken to have to watch her go through all of this again. 

Thanks, everyone. 

Kelly.

Waiting waiting waiting...

It's been 20 days since Amelia's surgery. 20, CAN YOU BELIEVE IT? Part of me feels like it was yesterday, and the other part feels like it's been months and months. It's very weird, time moves so slow when you're sitting in a hospital room all day, everyday, but then you look back it's been almost a month since it all started. The whole reason I started this blog, was to be able to look back on all of this and see how far we've come and to see all that God did in us. God is so good! My newborn underwent the most complicated open heart surgery possible and the doctors are talking discharge just 20 days after. We serve a big God, who is not limited. I am in awe of Him and my strong little heart baby. 

Right now we're playing the waiting game. All of the really important stuff looks good. Her saturation levels, her heart rate, and her blood pressure is all great looking. So we're waiting on her to gain weight. She was eating by mouth so well for 2 days and then flipped all of a sudden and isn't taking anything by mouth anymore. Amelia's heart surgeon(Dr. A), who we love, told us that he wants us to go home and the best way to get us there is for her to have the g-tube put in her belly. Amelia needs to gain weight and be bigger for her second surgery(Glenn), she cannot afford days where she isn't eating well. Regular babies can get cold's and or some sort of sickness and not eat well, and they rebound from that well. Amelia cannot get sick, period, and she cannot, not eat. SO the g-tube is an insurance policy, basically. We get all the nutrition in her that she needs, she grows, and gets nice and strong for her second surgery. All the while we'll be seeing a speech therapist who will help Amelia feed well by mouth. She won't have the g-tube for the rest of her life. She will have it at least until her second surgery and based on how well she is eating, then, we'll see. 

At first, I wanted to fight it so hard, but it's what is best for her. Bigger, stronger, babies learn things better, and I have no doubt that, just like her awesome recovery from a serious surgery, she will regain the ability to eat by mouth. Girlfriend is a fighter. 

Although we get to go home soon, it's not over. We have a billion doctor appointments that we'll have to go to. David and I will have so many things that we'll have to do at home. Our bedroom is going to look very similar to Amelia's hospital room, except we'll have a comfortable place to sleep at night. (: We're going to have multiple machines in our room. It's going to be very strange and tiring at times, but like I said, I cannot wait to look back on this as a distant memory. I cannot wait to see how far we have all come. 

David and Emma have gone back home. David started work today and Emma has been floating from family member to family member. I was so worried about her adjusting to everything, but she has been a rockstar with all of this as well. Our children are incredible, I tell ya. My mother and father in law have helped SO much with watching her AND our dog. I don't know if we'll be bringing him home with us when all of this is over with (; All of my in laws have really pitched in and helped us out and we're so grateful to them. We really are so blessed with everyone that we have surrounding us. 

Thank you for continuing to pray for our sweet girl. 

Things to pray for:

Amelia's upcoming surgery, tomorrow at noon. She is having the g-tube put in. It's very routine, but I still hate my newborn going under a second time. ): Pray that everything goes well and that she heals quickly so that we can go home. 

I'm all alone in Madison. So that sucks. Pray that I don't lose my mind! (: 

David started work, again. Pray for grace. It's not like he had a months vacation, he barely slept the whole time, too, and now he is waking up at 4 am working hard all day. Plus it's crazy cold outside, and I hate that he has to go out in it. 

Love, y'all!

Kelly

A small bump in the road

I knew it was going to happen at some point, but it's still very frustrating. 

On Monday, we started oral feeds and were told to take it easy because her swallowing needed work. She was working too hard to swallow. Babies work really hard to eat and can burn more calories than they're putting in. For Amelia, that's a big deal. She needs to gain weight really well. 

We started around 10-15ml, and after a couple feeds, she was doing really well with her swallowing and coordination. She made it clear that she wanted more by mouth, so we went really slow and let her drink as much as she wanted in 30 minutes. The most she took was 1.5 oz. It was awesome, and I was so excited because she wasn't having to take much through her feeding tube. She did well for 2 days and then yesterday she started throwing up after oral feeds. She is taking longer to start feeding and then she started having trouble swallowing again. She has thrown up her feeding tube, which has to be replaced. It is not comfortable for her and it's awful to see her have to go through it. 

Last weekend Amelia was inconsolable and her doctors thought maybe it was withdrawal from her sedation medicine, so she was given medicine to help with the withdrawal. It made her incredibly sleepy, so they took her off the medicine. They think that she could still be withdrawing and that's what is causing the issues. She was put back on the withdrawal medicine at a smaller dose. We're hoping that she won't be too sleepy and that she'll start eating better. If not, the doctors don't know why she is having trouble.

This whole process is such a roller coaster. I am so tired of being in this hospital. I am tired of Amelia being poked and bothered. I am grateful, though, that we're in such good hands. I just want everything to be fine and to be home. 

Right now we're needing her to eat well because if she doesn't start eating well by mouth, they're going to schedule her for surgery to have a G tube put in her belly. On one hand, her having surgery would be so frustrating, but on the other hand, a feeding tube would get us home faster. She'll have it put in and then we'll learn everything we need to about it and then go home. We really don't want to go home with the NG tube in her nose, because it bothers her a lot, and if she pulls it out, we'll have to learn how to replace it...no thank you. In a perfect world, this medicine would be what she needs, she would be able to eat really well, and when she gets weaned from this medicine, she would still do well. Then she would gain weight and we could go home without any feeding tubes. 

So there it is...that is our update. Please continue to pray for sweet Amelia. 

Thank you, everyone.

Love y'all, 

Kelly