Complications

Our sweet little Avelyn can't seem to catch a break. We have spent more than a month hoping and praying that this surgery, she only just survived, would be her ticket to better days. So far it just hasn't worked out that way. Yea sure, it's early. We're not yet two weeks out from surgery. But she seems to be running into complication after complication. 

Right now she is in the early stages of kidney failure. We don't know if the damage done will be permanent or not. Her left lung is collapsed due to fluid build up in her chest. This fluid is also causing her heart and trachea to shift to the right. The surgeon will be coming in today to place another chest tube that will hopefully alleviate the fluid pressure that's collapsing her lung and creating the shift. They also found a clot in her right subclavian vein. This clot and her fundamentally changed cardiac physiology are creating a whole host of problems due to increased veinous pressure. The increased pressures are causing her to have capillary leakage. The leakage is decreasing her cardiac output and therefore generalized purfusion ability-which is further stressing her kidneys. The capillary leakage is being drained by her right chest tube and her PD drain. She has fluid flooding out of both. So much so that the providers can't assess and replace the losses fast enough sometimes. Due to the amount of chest tube loss she is staying in a state of metabolic acidosis. They keep having to replace bicarbonate to balance the ph of her blood. She is also still requiring blood products. Yesterday she got another transfusion of red blood cells and immunoglobulins, today she is getting plasma. She also is requiring albumin every 6 hours since Friday. Plus she isn't tolerating feeds again due to all of the cap. leakage. The lipids from her breastmilk seeped out of her intestines into her lymph system and into chest tube drainage.

We're hoping things start to turn around soon but I don't think it's realistic. The clot in her subclavian vein may take weeks to dissolve. She is on an increased dose of heparin now, but that'll only prevent it from growing. It has to dissolve on its own. Who knows how much of her veinous pressure is due to this clot and how much is due to her new physiology. It's all got us pretty worried for Avelyn's overall well being. 

On top of these new worries she still has the old ones. The resolving (per head circumference measurements) subdural bleed in her occipital area. Worries for endocarditis and sepsis (although no lingering signs exist). Decreased gut purfusion. Difficulty managing pain and sedation due to her length of need and growing tolerance. When she is awake she's in a state of delirium. It's heart wrenching. 

We are so grateful our little one is alive and still fighting but damn....we really miss our baby and she deserves some peace and comfort. I sincerely hope and pray she starts to improve soon. She has a lot to do and see in this world. We can't wait for her to get to be a baby. 

To sleep comfortably, have a full belly, smile, laugh, be pain free and just do the things little babies should be doing-not fighting for survival.

Any Progress is Good Progress

The last couple days have been filled with big milestones and new worries. Avelyn had her chest fully closed yesterday morning. This is a huge deal for our sweet baby. Her surgeon had to spread her chest wider than usual to reach her MAPCAs that were far out in her lung fields. Her chest gaped a good three inches at its widest point, so we were expecting a staged closure, meaning partially closing it then coming back a few days later for a full closure. We're happy he felt it safe to fully close but it does make her more fragile given she doesn't have nearly the same room in her chest. The full closure puts a bit of pressure on her heart and lungs, meaning she has to stay sedated for a few days to allow her body to accommodate to the change. Sedating her has been a feat in and of itself. She's built such a tolerance over the last month, that it's forced the providers to get creative with her pharmalogical treatment plan. 

Another complicating factor is that Avelyn's kidney function has been declining over the last few days. It's due to her change in physiology mainly. Now that she has working tricuspid and pulmonary valves and a mostly closed VSD, her venous pressures are going up. This is causing her to get some ascities or fluid collection in her belly. I talked to her doc this morning, and won't go into the physiology of it all, but supposedly this is an expected occurrence. Her vessels should accommodate to the increased vascular pressures in the next few days and stop leaking as much. When that happens her kidney will naturally get more perfusion and regain function. Until then she'll be getting fluid replacements to try and rescue kidney function before her kidneys are actually damaged. She has a drain in her belly to drain off the fluid that collects in the paratenial cavity. This drain prevents a build up that would cause increased abdominal pressures and in turn increased thoracic pressures.

Another gigantic milestone for today is she'll restart feeds. It'll be very slow, only 5 ml an hour through her feeding tube past her stomach and into her intestine. The feeds will allow her body to recultivate her natural biotic flora and prevent intestinal infection common for folks on high doses of

Vanc, like c. diff. Hopefully she tolerates the feeds well and can have an increase in the next few days.

So that's the plan and happenings for now. We're proud of how well she's doing but all the changes make us uneasy. She has a long way to go and hopefully she continues to improve.

 Best wishes to all of you! Thanks for the thoughts and prayers! 

What a Week..

Avelyn has had a relatively quiet last couple days, compared to the last week anyway. Yesterday marked a week out from surgery. At this exact time last week, Sean and I thought we were losing her. We were waiting anxiously in the surgery waiting room for any news or update. We knew she was dying and that her surgeon was doing all he could. We were so numb, so broken. It was sickening-bad enough that I've lived it over in my dreams since. It wasn't until after 01:00 am that he came out and told us she needed to be placed on ecmo. She was bleeding too much and her little heart just couldn't keep up. At that point we were just thankful to hear she was alive. 

Since then she has had some rough times. She has continued to have bleeding issues, mainly due to extent of the operation (remember it was actually three procedures at once) but also due to still needing heparin to keep her newly reworked vessels patent. She has also had pain and discomfort, her pain medication has had to adjusted frequently. Her chest remains open under a thin transparent antimicrobial film. She is still too swollen with fluid to close it. If her surgeon closes it too soon it will place pressure on her heart, which could lead to permanent damage. 

She has been diureasing fairly well though. Hopefully her chest can be closed in a day or two. That'll be a good day. Her lungs are still pretty sick but are making progress. Her peak pressures are not as high, this means the vent doesn't have to use as much force to ventilate. She is requiring a lesser percentage of oxygen than she was a few days ago. Currently she is at 40%, Saturday it was 60%. Room air is 21%. After her chest is closed and she recovers a bit she'll have to get down to room air percentages before extubation. 

She is still having some issues with lower lung lobe expansion/collapse. The providers this is due to a combo of atelectasis and fluid pushing in on the lungs from the thoracic cavity. It's getting better though. The respiratory therapists are also still suctioning bloody secretions from her lungs. It's likely from the time she was in surgery and on ecmo. For a couple days her bleeding was just out of control.

She had her last scheduled head ultrasound this morning. It came back unchanged. She still has a small subdural blood collection in her occipital lobe area but it hasn't grown and should reabsorb as time goes on. 

That's about all the news I have for now. It's late and sleep doesn't come easy these days. Thank you all for the well wishes, prayers, support and concern. I don't know if we would have survived these last eleven weeks without it. 

Avelyn has touched so many people; it's so humbling. I am extremely honored to be her mom. I cannot wait to learn what parenthood outside of these walls entails. I am sure it won't come easy, knowing us it'll be an adventure. 

Sean and I are so very blessed. We still have our girl and she is recovering. After the week we've been through-that's really all we care about.

Thanks again for everything. 

Much love to each of you. 

The Rollercoaster that is Our Lives

The last week has been a ride of ups and downs. Last night Sean said, "I don't think I'll ever have to ride a Rollercoaster again.." I couldn't help but agree. After all of this, I don't think much will phase us once we get our baby girl home. This week ran the gambit of terror, darkness, optimism, and hope. Right now we are siding with optimism and hope but are still taking each hour cautiously. 

Avelyn is doing much better. She's off ecmo which is an enormous blessing. She is still bleeding quite a bit but it seems to be slowly but surely improving. She still has an gaping open chest cavity and is on high ventilator settings. Her oxygen need is much higher than it has ever been but supposedly that's typical of kids just off ecmo. Her just body just needs to readjust to doing it all on her own again. Her lungs are still recovering from the trauma of her surgery, being on ecmo, and being so over loaded with fluid. Through the night she had to have multiple fluid bolus' to keep her blood pressure within range. Again supposedly that's normal as their little bodies adjust to the major change of the ecmo machine being removed. 

And like I mentioned above, her chest cavity is still open under a thin transparent dressing. It's unnerving to watch her her heart beat but I couldn't be more over joyed to either. She is alive and still fighting, what could be better than that?Hopefully as she gets more stable in the next couple days she can get a lot of fluid off and her chest can be closed. 

Her white blood cell count was elevated this morning. Yet, she's already on such high doses of antibiotics and an antifungal that I think it's just the stress of all that happened yesterday. The doctors haven't rounded yet, we'll see if they feel differently. She had a subdural bleed in her occipital area while on ecmo. That's why there was a mad dash to get her off of it yesterday. After a CT scan we learned it is quite small but at first we didn't know that. With the amount of heparin (anti-blood clotting medicine) needed to run the machine, there was a risk for it getting worse and causing brain/neurological damage. She'll be monitored everyday for a while to ensure it doesn't grow and eventually reabsorbs. She also had a belly x-ray a couple days ago that looked suspicious. NEC was a concern, yet again, but they hope to have ruled it out. 

So that's where we stand now. Like I said she is doing so much better but still has so far to go. We couldn't be more proud of our baby girl's determination to live. We're taking it all day by day, but she continues to be a miraculous little wonder. Our prayers have not gone unanswered. Please keep them coming. Love to all. 

When the World Stands Still

Avelyn has not been improving as we hoped. This morning she started to bleed a considerable amount again. So much so that the surgeon had to open her back up for "exploration" in her room. He found some of the areas that were bleeding and added more stitches. As far as we've been told that's improved things for now. However due to all the bleeding she had to receive a lot more blood products today. The additional fluid and blood products have made her lungs sicker. She had a lot of fluid and blood in the lung fields which prevents adequate expansion and causes pulmonary hypertension. The docs are hoping this will start to clear in a day or two. 

She handled the exploratory surgery well considering all she's been through. It lasted a couple hours and we were told her blood pressure and heart rate remained stable throughout. Her heart function is improving as far as we know, but the more fluid she pees off the better. That will make less volume her little heart has to pump once she comes off ecmo. 

The ecmo machine is currently doing almost all of the work for her heart and lungs. It drains blood out of her right atrium via gravity, oxygenates and removes CO2, and then pumps freshly oxygenated blood back into her aorta. It's an amazing machine-yet I can't help but hate it. More specifically I hate that my daughter needs it and therefore I hate to look at it. 

It's all hard to see. Right now our baby's chest is open under a transparent dressing. We can literally see the thud of her little heart. It's unnerving for her to be so exposed. I worry about the potential for trauma and infection, especially given the damage endocarditis has already caused her. As a parent you aren't meant to see your child's organs, or to see them lie lifeless while you remain helpless. 

I wouldn't wish what our baby is going through on anyone. Yesterday she woke in pain. Her silent cries with that open chest tore through us. We demanded her to be further sedated with pain medicine, not that the nurses weren't already working on it. I hate everything about our situation except that we still have our baby and more importantly that she can still recover. She is still fighting and will pull through. We just have to give her time to heal. 

In the mean time Sean and I are doing our best to be there for her and remain steadfast. It's not been easy. There's been a huge out pouring of support, most of which is helpful. Sometimes though people say cruel things with kind sentiments out of ignorance. It's annoying. We know people don't know what to say to us and that's alright. Before being in this situation I wouldn't have known what to say either. 

However if one more person tells me "everything happens for a reason" or insinuates our baby is in this tortorous situation because Sean and I can handle it, I won't be able to say "thanks" and move on. I don't mean this to be a rant; I am truly not angry about it. I know people mean well and that these things are often said out of ignorance. Yet if I don't speak out and the same things are said to someone else in pain, it'll be my fault. 

Again, I truly appreciate the thoughts, prayers and positive sentiments sent our way. I am very grateful for so much support. Please don't assume I am lashing out. We just don't need the old southern sayings thrown way out of context. Thanks for understanding. Much love to each of you.

Our Greatest Thanks and Appreciation

Thank you for everyone's support and prayers. The out reach for our sweet baby has been awe inspiring. She is still extremely critical but she is making steps toward stabilization. We are so thankful for the existence of the ecmo machine but so wish it wasn't needed. Hopefully Avelyn will continue down this road without anymore detours.

Today her bleeding is continuing to improve. She is also handling her diuretics well, although the team is taking it slow. Her blood pressure is still quite sensitive to fluid changes so it'll be a slow process to get all the fluid off. If all stays on this track we're hoping she can come off ecmo in a few days.

I have had a lot of people ask if there is anything we need or anything they could send to Avelyn. While Sean and I can't think of anything pressing, we could never turn down support for Avie. That being said she really isn't in need of anything material. However we would love to be able to convey to her someday how many people her story has touched and how we all support and believe in her. Therefore if you'd like to send her books with an uplifting messages and/or signed encouragement letters each would be very appreciated. We plan on keeping them and giving them to for her for years to come. With that in mind, there's no single age appropriate timeline, just whatever book inspired you most as a child, adolescent, teenager, or young adult. We'll just give each to her when she's ready for it. Hopefully this can be a positive act that stretches far into her future. She will always have to endure and overcome challenges from this experience and her CHD. We hope to use literature and you all's positive encouragement to build her spirit and strength enough to rise above any limitations she may face. 

Also if you all could continue to share her story with those around you to bring awareness to the horrors of CHD and what our babies go through to survive we would greatly appreciate it. 

We are receiving mail here in Nashville at 

Somer Pickel
7100 Sonya Drive
Apt 6913 Box 373
Nashville, Tn 37209

Thank you all from the bottom of our hearts for every bit of prayer and support already bestowed upon our precious baby. She fights on with vigor and determination that can only come from a blessed spirit. 

Much love to all of you. 

Also if you feel so inclined any donations to the children's heart foundation (http://www.childrensheartfoundation.org/) or Kari's Heart foundation (http://www.karisheartfoundation.info/) would be extraordinary. 

The Dementor's Kiss

I have started so many blog posts over the last day and a half that I ended up deleting. I just don't have any idea what to say. I have been encouraged to share Avelyn's journey-the good and the bad. I want to share what she is going through, what we're going through, and what CHD does to sweet babies.

But how do you explain the unexplainable? How do you describe the darkest hours of your life? I kept trying but couldn't seem to get the right words onto the page. I rambled on and on without ever conveying the darkness. Yesterday I gave up trying. I figured it would come to me later if I was meant to write it. 

Avelyn is sedated, so I guess it doesn't matter but I've been reading to her just in case she can hear me. I want her to know someone is here. Someone she recognizes is here. 

I've been reading the Harry Potter books to her throughout her hospitalization. Currently we're well into in the third: The Prisoner of Azkaban. If you've read it then you know all about the Dementors, the guards of the wizarding prison called Azkaban. While reading to her I found the words I was looking for. Granted they aren't mine, but they perfectly describe the emotions that have clung so tightly to me over the last day. 

According to J.K. Rowling, "Dementors are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them... Get too near a Dementor and every good feeling, every happy memory will be sucked out of you. If it can, the Dementor will feed on you long enough to reduce you to something like itself... soulless and evil. You will be left with nothing but the worst experiences of your life."

Avelyn update: Avelyn was in the OR from 0830 am until past midnight. Her actual surgery went as planned. Dr. Bichell was able to find her collateral vessels or MAPCAs and bring them into her pulmonary artery. He repaired the tricuspid valve, inserted the pulmonary outflow tract conduit, and repaired the VSD- although he left a small hole there as planned. Before they finished the surgery, they did an ultrasound of the work which showed microbleeds. That prompted them to go back on the heart lung machine so Dr.Bichell could add more stitches to try and curb the bleeding. The second time she came off the heart lung machine she seemed to do better. However she started bleeding acutely not long after. At that point (which we only just learned today) she arrested and needed chest compressions until they could get the heart lung machine reconnected for the third time. She was then monitored closely for hours, and ultimately needed to be placed on ecmo to allow her heart time to rest. Through the night and morning they couldn't control the bleeding and so she had to get blood, platelets and plasma multiple times. At one point opening her back up "for exploration" was discussed. Instead her heprin, which keeps clots from forming in the machine, was stopped for 5 hours. In this time she started to clot off the bleeds in her body. But now she is at risk for clots being thrown from the machine. She is now being checked for brain bleeds and appropriate neurological activity due to the all the risks she was exposed to over the last day. So far nothing new has been found. Currently the team is still chasing her bleeding, although it's "under-control". Her blood pressures also still seem labile. Her chest is open to allow her body room to swell without putting pressure on her heart. This puts her at higher risk for infection. Best case scenario she'll be on ecmo into the weekend and have her chest wound closed early next week. We haven't a clue when she may be extubated. I can't wait to hear her little voice again or see her pretty blue eyes. 

The last 36 hours has been too much to take. We've faced the high likelihood of our daughter's death. We've felt that as a true possibility-again. It's been awful, more awful than I could've ever imagined. 

Below is a picture of Avelyn right now. I don't necessarily want to share it because to us, this isn't her. However this photo shows the ugliness of congenital heart disease. It shows what my baby has to go through if she is to have a life. It shows her pain and struggle. It shows her strength. She will never be a normal kid. She's destined for more than that. She's an inspiration and the wonder of my life. As I have said before, she truly couldn't be loved more.

Tomorrow's Summit

Oh tomorrow. Tomorrow. It shall surely be the hardest day of all three of our lives. Avelyn will have her unifocalization, pulmonary artery/valve graft, VSD repair and tricuspid valve repair. Her surgery is expect to last anywhere from 8-12 hours. She will be placed on the heart-lung machine. Her heart will be stopped to do the repairs but I can't let my mind go there. 

This repair is so risky. It's essentially three surgeries in one, complicated by her small size and active endocarditis. Needless to say, we're terrified. Today has seemed surreal. We're going through the motions but our minds wander where they shouldn't. "What if's"creep in unannounced making my stomach drop. I just keep staring at my baby struggling for breath and fighting her ventilator hoping beyond hope that things will change after tomorrow. I hope this surgery allows her to heal and doesn't make things worse. She deserves to be able to heal and grow. She deserves peace, health and vitality. She deserves comfort. She's so uncomfortable. Even heavily sedated she stirs with pain, fear, and generalized discomfort. We've gotten her providers to increase her pain and sedative medication, which has helped but still she's often restless. She strains against the vent, silent screams that pierce your soul. I miss her beautiful eyes and long to see them but feel guilty when I get my wish because she's so uncomfortable.

I was asked this morning how I feel in preparation for tomorrow.  I had a dream last night that might explain better than I can.

Sean has been reading and watching a great deal about alpine climbing recently, which is likely why I dreamt about our situation in such context. 

In my dream the three of us were climbing what seemed like an 8,000 meter peak. It was cold and we were in blizzard conditions. It was just the three of us. Sean and I could barely make each other out through the blinding snow. I had the baby wrapped snuggly in my arms and was terrified we'd lose her. She wasnt doing well and we were trying our best to save her. We were trudging through deep snow up the mountain via a ridge line. As we climbed we straddled steep drops on either side. I was so angry that we were in this situation. We were all so tired and weary. We couldn't stop or we wouldn't make it. As we climbed the ridge got narrower and the drops steeper. The higher we went the weather began to lessen. We could see the beauty of the summit that awaited us. The last bit would be the hardest part but we had to summit, Avelyn's life depended on it. 

I woke before we summited and couldn't go back to sleep. I stayed awake staring at Avelyn and thinking back upon the dream. 

I feel we're still on that peak. Tomorrow we'll climb the last stretch-the hardest stretch. We're weary. We're angry. We're determined. We'll summit. We have to. Avelyn will make it through her surgery and we'll get to be the parents we long to be. 

Yet recovery won't come easily. I am not fool enough to believe it will. There'll be hiccups and holdups along the descent. Often times it's the most dangerous part of a climb, as too many people rush it. We won't. We'll take it slow. We'll savor every moment of the journey because one day soon we'll look back at the peak we've just climbed with awe. We'll point to the summit and tell Avelyn her harrowing tale. How she triumphed and persevered. We'll tell her how strong and capable she is. We'll ensure she knows of those who's journey led them into the clouds. We'll be sure she remembers each of their names. We'll be sure she knows how blessed she is to have survived and how much she is loved. 

Above all we'll never forget our climb. How could we? It's been an experience I couldn't wish upon anyone. 

I look forward to such beautiful hindsight. 

I know I should look forward to tomorrow. I know this surgery is life saving for my daughter, and I am so thankful she has the opportunity to have it. It's so hard not to dread it though. It's such a risky surgery. It will be so long and complex. So many things can go wrong. 

As I often say, she is our little precious wonder. She's our world. All we truly have. She couldn't be more loved.

Please keep her in your thoughts and prayers over the next couple days. She's in for the fight of her life. 

Our Little Hero

The last few days have been an odd combination of quiet, busy, and stressful. Overall Avelyn has been a bit better but new problems keep trying to creep in and disrupt her stride. 

For instance she has spiked a fever and become restless and tachycardic at the same time of day for the last 5-6 days. It's weird. It has become so predictable that Sean and I brought up the pattern with the doctors in rounds and predicted it's occurrence yesterday. (We love the attending and fellow here this week. They really listen to our concerns and truly try to answer our questions. I feel a little bad that we usually try to make the most of their weeks here, so we ask them more questions than the other docs.) 

Also, I noticed another new symptom early Tursday morning. Avelyn's pupils weren't equal; the left was 2-3mm larger than the right. This can be a sign of serious brain damage, so I began to panic a bit-albeit inwardly. I called the nurse to see, she called the nurse practicioner who ordered a head ultrasound. The ultrasound came back unchanged. Meaning no new obvious stroke damage. The next morning it happened again, along side her usual fever and also accompanied by hypotension or a low blood pressure. 

This time our favorite attending and fellow were here. I asked the nurse to get one. They seemed confounded because she didn't seem to have active stroke symptoms, she was acting realitively normally for an intubated and sedated 2 month old anyway. They ordered blood cultures and a CT scan. Her temperature kept going up and she didn't settle as easily as she normally does. When they wheeled her down to the CT scan it made me so nervous. I can't stand her out of my sight. I know she is in very good hands but she's ill-critically ill. I know of too many babies who passed or had serious crashes around here. It was a long hour and a half. When the results came back clear a couple hours later an EEG was ordered. This was to see if the difference in her pupils could be attributed to seizure activity from her previous stroke or possibly new "mini-strokes" which could damaged areas too small to detect without an MRI. After 18 hours worth of live EEG feed with no seizure activity, despite multiple times episodes of her being awake with uneven pupils the neuro team signed off for now. Then optometrists were called in. They couldn't find any evidence of her infection traveling to her eyes or any obvious ocular damage in her left eye. So after all the tests and such findings suggest it could be a damaged nerve, sedative related, or nothing. We don't know and don't know when we'll find out. Good news is she isn't having seizures, hasn't had any other strokes detectable by ultrasound or CT scan, and her infection hasn't traveled to her eyes or brain.

So along with this unanswered question, we still don't know what her pathogen is. The cultures taken this week and all previous cultures remain negative. We still don't know why she is spiking a fever everyday at the same time or why she'll also get hypotensive during these episodes. She's a little medical mystery, which is unsettling. Oo and the pupillary difference is back today. :/

Other than all this, she is doing "better". She's maintaining her oxygen saturations a little better and isn't requiring as many PRN medications. So that's reassuring for her surgery this next week. It's still tentatively scheduled for Tuesday the 16th. 

The photos below include Avelyn's first bow, her EEG "super hero" get up, me holding her for the first and only time in weeks, and other photos where she just looked especially cute 😉

Cliff Hanging

I guess I should start by saying that our perspective of "well" has changed drastically in the last week. When we've been asked how Avelyn is doing Sean and I have both been telling people "oh she's doing a lot better" or even "she's doing well..", but it seems to have given the wrong impression. We say this because last weekend and into Monday and Tuesday, we were on the cusp of losing her. So in comparison she is doing well and better but she is still so very ill. 

She is still ventilated and having trouble maintaining her oxygen saturations and temperature. However the swings she has in both aren't usually as drastic or frequent as they were a few days ago. She now requires oxygen with her ventilation nearly constantly to stay within her goal saturation range of 75-85%. Before endocarditis she managed this on room air. 

Blood cultures were taken nearly everyday for a week and have remained negative, which has positives and negatives. The positives are the negative cultures mean she isn't sloughing bacteria into her blood stream that could spread to other areas of the body, and likely that the infectious bacteria is slow growing- meaning not the more nasty bugs that are more difficult to treat. The negatives are without a positive culture the team doesn't know which bacteria they are treating. Meaning- they have to use stronger and more broad spectrum antibiotics than if they knew the specific bacteria. These drugs are harder on Avelyn's system- especially her kidneys and delicate inner ear structures. So the labs have to be followed very closely to ensure the antibiotics themselves don't do her serious harm.

She'll be on antibiotics for 6 weeks. The team would prefer to wait that time to open her up to give her the best possible chance of not spreading infection elsewhere in her body. But she can't wait that long. Everyday she is at risk for decompensating or having a serious event, including stroke. She is still dropping her oxygen saturations to dangerous levels. She has to have an external pace maker hooked up at all times because when she does this sometime her heart tries to give out. She's been "paced" half a dozen times this week because of this. It's terrifying leaving her in this state but she has to have enough antibiotics in her system to treat the infection or the bacteria will just reek havoc somewhere else in her heart after they close her back up. She can't afford that. 

So we're back to playing the waiting game and feeling like we're dangling above a cliff. It's the definition of a rock and a hard place. There's not an easy or safe path. She's so fragile right now. But like I said at the start, she is doing "better". She's not being paced or bagged multiple times a shift anymore. The events are less frequent and severe but they still happen and will continue to until she has a surgical repair of her damages tricuspid valve and heart in general.

This weekend a pleural effusion was added to the mix. So now she's uncomfortable from that often times.

So in short, she's hanging in there and we hope to hold the course for another week and a half or so until her next surgery. Sorry to be brief, there's been a lot going on this weekend. Best wishes to all.

To the New Momma who Caught Me Staring...

To the mother of the crying infant, I know you saw me staring. I'm sorry but I couldn't help it. When your baby started to cry while I was getting my lunch, I could focus on nothing else. I couldn't help but stare, even after you caught me looking. I know you likely mistook my stare for judgement. You were trying your best to calm your hungry little one. I saw the anxiety and fatigue in your eyes.

I wish I could've managed a reassuring smile, but in that moment your baby's cries had me on the verge of my own melt down.

You see, my stare wasn't based in judgement or annoyance. It was based in envy and a deep longing- a longing for exactly what you have, the normal challenges of entering motherhood. 

I too should be trying to calm my young infant while making a not so smooth transition into motherhood. The dark circles under my eyes should also be from late night feedings and early risings. I too should be anxious about my first breastfeeding experiences in public. I too should have the emotional capacity to care about my surroundings.

Yet as much as I wish it, that's not my life. 

Although I too  am a new mom our lives couldn't be more different. 

Why?

Well, my baby was born with congenital heart disease. 1 in 100 babies are. My baby suffers from tetralogy of fallot with pulmonary atresia and MAPCAs. She has already had one open heart surgery and needs a few more- with the next likely being within the next week. She also now has endocarditis, which is an infection of her tricuspid heart valve. My baby girl is so very sick, so sick that each day is a victory. 

So for me motherhood is fraught with challenges I never imagined just 10 short months ago. 

For me motherhood is:

-Wishing I could touch my baby, let alone hold her, instead of just gazing at her little intubated body from a distance. 

-Praying she doesn't have another ischemic stroke resulting in more brain damage. If she's stimulated at all she drops her oxygen saturations into dangerously low levels.

-Missing her big blue eyes. It's been days since we last saw them.

-Longing for her to be able to maintain homeostasis. She now constantly swings from over 103 degrees to below 95.

-Anticipating each morning that we'll be told "We can't wait any longer, we have to take her to the OR". She has an active endocardial infection, so surgical action right now is extremely risky but so is being so very unstable hemodynamically. 

-Learning the mechanism of action for the multitude of drugs that are being pumped into her tiny body to keep her alive, as well as what all of her monitor readings mean.

-Listening to each doctor's report hoping for answers but only finding more questions. 

-Standing at her bedside for hours, wishing we both could be anywhere else.

-Apologizing for all the pain and suffering she's been through but knowing that there's nothing I can do about it.

-Promising her a life full of wonder, smiles, and adventure for when we can get out of this hospital. And hoping beyond hope I can keep the promise.

-Watching her monitors and being thankful for the hours that she rests comfortably without "an episode" of desaturation, hypotension, or inability to maintain homeostasis. 

-Remembering her sweet smile and wishing to see it again some day soon. 

-Dreaming of a future where she is free of montiors, IVs, feeding tubes, infection and life support in general.

So now can you see why I was staring? Like I said, I wish I could've offered reassurance. I know it's not easy being a new mom under any circumstances. And while I may be envious of the most new mom's transition into motherhood, I am still grateful to have joined your ranks. 

My baby girl is all I could've ever hoped for. She is amazing and perfect in every aspect but one. 

Best wishes to you fellow new momma. You're doing great. If I ever see you again, hopefully it'll be me with the hungry baby in my arms.