Parenthood

Last night I heard from someone I truly care about but haven't spoken with in years. I was asked the generic "how are you" question and for once I tried to answer honestly.

I had to really think about it. Sean and I haven't had the time, energy, or emotional capacity to spare to really consider ourselves in the last few months. I guess I can't truly answer for him but I am fairly confident he'll agree with me.

Obviously we aren't fine; we have a critically ill child. I overheard a nursing report the other day when Avelyn had to be reintubated. The day shift nurse discribed me as worried and in her room all the time. She said it with a negative connotation that I don't feel was appropriate. Of course the nurse doesn't have children of her own. Even so, to work in this setting she has to compartmentalize her emotions and she likely doesn't realize she does it. I get it. I compartmentalize my work too, it's the only way you can cope with such heartbreaking work day in and day out. 

However, I try not to judge the family members of my patients and think all nurses should do the same. Everyone copes and handles crisis differently. Yes, I am nervous; I should be. My baby may not make it out of this hospital. Any parent in my shoes should be nervous. Yes, I rarely leave her side. Why should I? Being away and knowing she's struggling is harder than being present for it. While I believe more than anyone Avelyn will turn around, do well, and live a long happy life- I also know she is very very sick. There is a chance that this may be the only time I get with her. I don't ever want to look back and think I could've spent more time with her or that I missed something. 

So how am I? I am not ok. I am not fine. I struggle to make it through each day-sometimes each hour. Yet our struggle as parents pales in comparison to our baby girl's struggle. So we can't afford to fall apart. We can't afford to not handle the stress and challenges. We can't afford to lose hope. Therefore we won't fall apart. We will cope with every challenge and stressor and we will never lose hope. 

Very few things in our lives are simple these days but this aspect of lives as parents of a critically ill child is. Our baby needs us. So we are here and will always be. There isn't another option. She deserves so much more than the life she was born into. We can't do much for her right now. We can't hold her to comfort her. We can't tell her it'll be better soon. We can't feed her or really even change her diaper without assistance. All we can do is give her is our stability. 

It's not the parenthood I hoped for or that I would wish upon anyone. But it's all we know and it's what our baby needs from us. So for now we take each day as it comes and we survive. Our copeing isn't graceful, we often struggle but we're here and we'll continue to be. We have to. As her condition improves her needs will evolve and so too will we. It's the least we can do. She's been through too much for us to not step up to the plate and help her meet her full potential. 

So, how are we? We're trying. We're struggling. But we're surviving.

Life

I feel like our life has become a constant state of bad news since we learned of Avelyn's congenital heart disease. Recently it's gotten worse. She has really decompensated over the last few days. She had blood in her stool Thursday and vomited up her medications. She was also more irritable and seemed to be experiencing more pain. Friday things continued to escalate through the morning. Her pain quickly reached an uncontrollable level. It seemed to be originating from intestinal ischemia or lack of blood flow to her intestines. She was unconsolable and had to receive multiple doses of morphine. Her work to breathe got out of hand and she had to be restarted on the positive pressure support nasal cannula. Her blood was acidotic from poor perfusion and working too hard to breathe. By late morning it became clear that she needed to be reintubated. 

All these acute changes were initially attributed to an intestinal infection or again possibly NEC.

Through the day she continued to struggle even while ventilated. Her CO2 levels remained high while her O2 levels were low and she stayed acidotic no matter what was tried. She also continued to be pretty uncomfortable. 

She had a fever through the night and into the morning, spiking at nearly 103 with Tylenol on board. While it's improved some today she is still somewhat febrile. Today she was also uncomfortable and it's been difficult to control her pain without bottoming her blood pressure out or over loading her with fluid. The docs also tried to get an arterial line without success. (3 hours and 15+ sticks later I don't want to go into my feelings about that).

This morning her X-rays continued to be clear of any signs of NEC, blockage or pneumonia. Her lungs look pretty clear but cultures of sputum were sent just in case. She also had blood and urine cultures sent yesterday and today. So far nothing has grown but it takes up to five days for possible bacterial growth to present itself. 

She had an echocardiogram this morning too. The results aren't good. She looks to have pericarditis or an infection in her heart-one of her tricuspid valve leaflets. The damage is severe. She'll need surgical repair or replacement of the valve and soon. We don't know if the surgeon can repair it on top of the other surgical repairs she needs. This might mean an additional open heart surgery in her near future. However the risk of taking her back with an active infection are very high. However she is only declining at this point. We seem to really be in a tough place. We don't know what will happen over the next week. One thing is clear, she'll need to be on very powerful antibiotics for a couple months after her surgery and will need to remain hospitalized for the duration.  So our time here will likely stretch into the spring. We're so ready to take our Avelyn home and let her be a baby. She needs to catch a break. She's been through so very much and has endured so much pain. She's never known anything but pain, fatigue, suffering, sedation and conscious altering opiates. We're doing our best to stay positive but when the doc apologizes for "only giving bad news for a while now" it gets more difficult by the day. Please keep Avelyn in your thoughts. I'll try to do better about blogging more regularly. 

Living on the Edge

Avelyn has been struggling with withdrawals all weekend and continues to today. I see the symptoms on a daily basis at work but seeing each in my month old baby strikes a nerve. It's sad to watch someone so little go through withdrawals-to see her heart race; the sweat bead down her face; her breaths so fast and shallow; and the twitching of her little limbs. She's restless and irritable whenever her detoxing meds aren't covering her symptoms. Due to her anantomy and physiology her blood pressure naturally runs quite low-often times too low. This complicates what can be given for withdrawals because all the medications cause decreased blood pressure or hypotension to some extent. To combat the impact of the detoxing medication she has gotten blood, fluid and increased dosages of epinephrine. For now it seems to be working. 

Friday was a rough detoxing day as well as in general for Avie. Her perfusion to her intestines wasn't the best throughout the day due to the withdrawals. That evening she had a grossly bloody stool, which is indictive of not processing her feeds well and sets her up on the edge for future surgery. 

If she can't process feeds and grow she needs her unifocalization surgery sooner rather than later. Over the weekend the attending was suggesting the blood in her stool again would likely be the final straw that sent her to surgery. However new days bring new attendings a with new treatment plans and ideas. The current attending just started her back on feeds after another 48 hour NEC rule out. We still haven't heard from Avelyn's surgeon yet and may not until Thursday, unless something significant comes up. In the mean time we are trying to keep Avie as comfortable and relaxed as possible-which isn't easy given she's going through withdrawals. If she gets upset her body will naturally shunt more blood to her lungs and not her brain or periphery. Meaning she's at risk for decreased gut purfusion and NEC as well as another stroke. 

It's not an easy line to walk. We want her to grow and be as large as possible to give her the best chance at a successful repair but we risk her having another lactic acidosis episode, NEC, or stroke with each day we wait. Needless to say life is stressful. I doubt any parents have ever been more attuned to their child's cries as we are given these circumstances. 

To make matters worse I am nearing the end of my leave at work. Currently I am able to calm her more quickly and easier than anyone else. I guess all the time she spent in utero she became accoustumed to my voice and lack of rhymic movement-poor child lol. But anyway considering the potential consequences of her not settling-I rarely leave her room. It's often just not worth the risk. Granted some days, when she's doing quite well I'll venture out for a couple hours but even then it's never any longer. I can't even begin to consider going back to work now and being 5 hours away from her. Hopefully she'll make amazing headway in the coming weeks. In the mean time we'll be looking into other options. 

Sean and I are blessed that we've be able to be with her as long as we have. Many of these kids often have no one at their bedside. The nurses here are wonderful but can't attend to every cry every time. It hurts my heart to know any cries go unanswered but especially those of such sweet fragile little babies. 

CHD is Endured

A lot has happened since my last update. Most tragically a sweet little heart warrior named Skylar passed. She was born a couple days prior to Avelyn and was a true beauty. While we haven't really grown close to any of the other families here at Vanderbilt, we saw Skylar's sweet parents often in passing and traded updates about our girls. Skylar's passing has had me thinking a lot of how these kids battle each day for life and how they are often described as losing their fight when they don't make it. 

I think this sends the wrong message. Little Skylar and all the other kids who have passed with CHD have not lost their fights. To suggest such belittles what these kids have been through. CHD is not something to be beaten or won. It is a battle that must be endured. Some kids are born with more complex defects than others and must endure more if they are to stay with us. Sometimes it's just too must to ask a little body to endure. To suggest these kids lost their battle suggests there was something they could've done differently or that they could've fought harder. If I make anything clear I hope it's this, these babies can't fight any harder than they already are. They're the purest among us, no alternative motives exist for these sweet babies. For each and every one of them the fight for life is all they know. Each needs to be remembered and respected for such. Even survivors will forever live with the effects of CHD. There's no cure and surgeries don't completely "fix" defects.

Each child who passes from CHD is a true loss, to their families, communities, and society. The future they would've had is a true loss. The lack of research for CHD is a true loss. How can these kids lose a fight that cannot be beaten. No, each is a little wonder all hit/her own. They just had the misfortune to be born in painful circumstance. 

I stole the photo below from Skylar's sweet momma.  While it doesn't reflect our children's struggle with CHD if definitely reflects ours.

Grow Baby Grow!

The last week has been a roller coaster. Our girl had her heart cath and we were told that she needed to undergo a "unifocalization" procedure to bring the MAPCAs into her left pulmonary artery sooner rather than later. Sean and I expressed doubt, as its well known that kiddo's do better when they are larger. We trust the surgeon though and last week he seemed to think it was best to go forward with the surgery. It was a major blow. Sean and I were both terrified especially given her small size. 

As the weekend played out the blows kept coming. Avelyn failed extubation on Saturday, and when I say failed extubation-I mean she didn't make it five minutes. We're still not positive as to why but it was likely a combination of factors. These being atelectasis, pulmonary edema and thick mucous plugs dislodging and blocking her airway.  

Sunday brought it's own hard knocks. We learned that at some point in the last month our sweet girl has suffered an ischemic stroke. She has two small infarcts on her basal ganglia. Supposedly the infarcts are small enough and she is young enough that neither should affect her. However we won't know for sure until much later in her life due to the basal ganglia contributing to procedural/habitual knowledge and fine motor skills. These are things babies obviously won't express anyway. So that was a hard pill to swallow and makes our fear of her decompensation events that much worse. What if the next episode is worse and she suffers a more severe stroke? 

Moving into the Monday we learned the PCICU filled up so all the scheduled surgeries for Tuesday had to be canceled because there wasn't a PCICU bed to put the post op kids in. Given Avelyn already has a PCICU bed, moving her surgery up a day was tossed about. 

Then out of nowhere, Monday afternoon her surgeon switched gears and decided to give her one last shot to grow before attempting the unifocalization. Sean and I were thrilled. I literally felt exhilarated, sometimes you just know things will get better. Granted she was still intubated at this point but I felt a peace and knowing come over me in that things would start to turn around for our baby. Sometimes God's sends us signs that are just much more obvious than others, the canceling of her surgery felt like one of those obvious signs that I had been praying for.

Since then she's been doing better. She was extubated yesterday and has tolerated that well. 

Unfortunately it isn't all smooth sailing. Avelyn is suffering from withdrawal symptoms from her sedative medication that she needed while she was intubated. She has been tachycardic, restless and overall acting like a little jitter bug. For once I felt within my nursing element seeing the withdrawal signs. I may not know much within the ICU nursing realm, but I know psych nursing. I recognized the detox symptoms from the get go but again had to advocate my concerns to the team. It turns out that she must be pretty sensitive to already have detox symptoms because she was only on the precedex five days. It usually takes kiddo's a week to develop a physical dependence. Her providers seem to be doing better about listening to me and Sean's concerns. I guess if you call it right enough you get a bit of credit around here. 

Anyway so that's been our major concern today. I never thought in all my life that my acute psychiatric nursing skills would be put to use on my month old child. Life can have a sick sense of humor sometimes.

Despite the challenge of detoxing our sweet little baby we are so thankful that she is extubated, doing well and not currently staring down the barrel of an open heart surgery. If we can buy her a couple months she'll be in such a better place physically/anatomically to handle her upcoming surgeries. 

Please pray she continues to do well and grows like a champ! 

And the Blows Keep Coming

Avie's cardiac cath ended up being  purely diagnostic. She has two arteries coming off her aorta and going to her left lung that shouldn't be there (MAPCAs). However she needs the blood flow they provide so her next surgery will also have to include removing those from the aorta and grafting them to the left pulmonary artery. Finding and grafting these arteries is very tedious and time consuming, it makes for a much more complicated surgery. The one bit of good news is left pulmonary artery looks to have maybe grown a bit-which means the shunt is working in that respect.

The two MAPCAs coming off the aorta are stealing blood that's supposed to be perfusing the body, instead it's going back to the lungs or "over-circulating". It isn't good news to have these MAPCA's but it was expected that she had at least one, we're glad it's not more.

She's got a long road ahead of her, she's pretty sick. The MAPCAs are what's causing her to be so unstable right now. Avelyn's cardiac surgeon believes she won't stabile as long as she is in her current state-meaning  she needs another surgery before she can go home. He doesn't feel confident in her ability to truly stabilize without the danger of having another episode at home. The surgery would be next week and would likely be just finding and connecting the MAPCAs to her left pulmonary artery. Which has had some growth. He may be able to place the conduit to creat a right vebtricle outflow tract but probably not. He definitely won't be able to close the hole in her heart between her ventricles. That's because there's no guarantee the MAPCAs will survive the surgery let along grow afterwards, so the VSD would serve as a sort of pressure release pathway if they didn't. This means another surgery would be needed later in the future. We wouldn't know when until seeing how she does. 

Obviously Sean and I are having trouble taking all this in. Avelyn is having trouble recovering from her heart cath procedure now, or at least is recovering as quickly as expected. However it's likely due to her specific anatomy working against her. Maybe she'll do better recovering from a surgery that would alter her anatomy theoretically to her benefit. While the doctors believe she can handle another surgery so soon, I can't help but question it. She's still so small. She hasn't even gained back up to birth weight yet. She's so fragile and decompensates so easily. Granted a lot of this is because of the MAPCAs which the surgery will be addressing. It's all so terrifying. How much can we put her little body through and expect her to recover from. I don't know but I think we're likely reaching that limit. She's not even a month old yet and will have been through two major open heart surgeries.

Yet we don't seem to have a choice.  We can't risk taking her home in her current state. She's a prisoner here until we can help in some way. Is this the right path. I don't yet know but our hands are tied. All we can do is pray it is and that she'll finally get some relief and stability. We trust her surgeon whole heartedly but our faith is surely being tested.

Please pray Avelyn finds relief and peace. Pray for our and her medical team's guidance. Pray her surgeon can locate and incorporate the MAPCAs well. Pray for his steadiness of hand and clear mind. Pray for Avie's little body to heal and for the MAPCAs to grow after incorporation. 

I have faith that these are all possible outcomes for our sweet baby. We appreciate the prayers and support already lifting up our little Avelyn more than I could ever describe but please don't stop now.  Much love and blessings to you all.

Handoffs

I just handed my child of to surgeons once again. It's only a heart cath this time and I thought that would make it easier. It doesn't. She started to cry as I let her go and she was wheeled from the room. What do you do when you can't protect your child? She doesn't understand why I let her go. She doesn't understand why she can't be picked up and soothed. She doesn't understand why she is woken every couple hours. She doesn't understand why she is in pain. She doesn't understand why she can't catch her breath. The struggle is all she knows.

I can't make it better. Sean and I would do anything to ease her pain and suffering but we can't. She alone has to fight this war if she is live. We can't do it for her even though we would in a heart beat. It's not fair. It's not right. 

She deserves the life of every other baby on your news feed. She deserves peaceful sleep. She deserves comfort and love when she's scared, tired, in pain, or hungry. She deserves reassurance that her situation often prevents us from providing. She deserves a full belly, not to be  hungry and without food for half her life. She deserves vitality and strength not lethargy and stagnant growth. She deserves her biggest annoyance to be a diaper change not multiple surgical interventions and recoveries. 

Her short life has brought mine into perspective. I am sure all parents feel that way. Yet most can't really value health until it's absent. I see and hear so many complaints and worries that seem so insignificant.

So your kid made a mess while playing and expanding his/her cognitive abilities. So you're sleepy because your baby was up to eat every three hours. So your kid is a picky. So you can't get anything done for holding your baby. 

I would love to be shower-less, sleepless, at my messy home covered in spit up and have my girl in my lap breathing easy with a full belly. Instead my girl has never been outside of the hospital, she fights for breath, is on total parental nutrition because she can't tolerate taking food by mouth, and we're in constant fear she'll decompensate and end up being reintubated.

And what's more sad is a lot of babies here have it worse-some have it much worse. It's so hard to look into the faces of the parents who's kids are sicker than mine. What's there to say? They may never get the mundane moments at home we all long for. They may never send their babies to kindergarten or see them run and play. While so many parents long for excitement, we pray for the mundane. We pray for peace. Our daily wish often is just the hope of being able to hold and rock our babies. It doesn't seem like much to ask but in these circumstances it is a mighty blessing. 10ml of milk by mouth is a blessing. Diapers without blood are blessings. The sound of our babies crying is a blessing. I know that sounds crazy. But until you've watched the silent struggle of your child trying to cry while ventilated-you just can't understand. 

In the last four weeks I have learned that often times our blessings come in such tiny packages they are easily overlooked. Therefore you have to dig to get past all ridiculously superficial and materialistic fluff to find true blessings. Blessings of health, love, comfort, reassurance, peace, and the joy of just being with the ones you love. 

I encourage everyone reading this to take the time to dig. Don't wait until you're forced into a handoff off to appreciate th mundane moments. Don't take small blessings for granted. Love earnestly and wholely. It's all that really matters.

The Known and Unknown

Two nights ago we had another close call with Avelyn. It's difficult to think about, let alone write about hence the two days past. Anyway she had been having a pretty good day. Her continuous feeds by NG tube had been bumped up and she seemed to be tolerating that alright until the evening when she got a little gaggy. When she started gagging I went ahead and turned them off. Not a half hour later she started to have a bowel movement and became increasingly upset. There was no calming her, she continued to escalate for a few minutes. I tried everything. Then I noticed her cry started to weaken, not like she was calming down but like she was becoming lethargic. I had been watching her monitor and vitals throughout this whole process too. At the point her cry started to weaken her pulse started to trend down. It was in the 190's when she was upset and slowly it started to come down, simultaneously she was getting paler and mottled but still trying her damnedest to cry. The combination of symptoms had me very concerned very quickly. I used the call light and said "I need a nurse now! My baby's heart rate is dropping." 

Now you'd think that would get a pretty concerned response or an immediate action. Nope. The response I got was "ok the nurse will be in in a few minutes."

True story. I was pissed. I waited less than 30 secs before putting her down on the bed (she is connected to a lot of wires and leads so she can't go more than a couple feet from the bed), at this point her pulse was dropping close to 100 bpm. I rushed out of the room to yell for help. The nurses were behind the desk laughing at something. I don't think the medical receptionist had even told them I called out, let alone my message. Four came in. As they came in I said she's going into lactic acidosis. She's done it before and had to be bagged and reintubated. They insisted on getting multiple blood pressures because the readings were within normal limits. I feel like it took me yelling "something is wrong get the doctor!" before she was paged. Then it seemed like I had to tell the doctor multiple times that she was obviously very acidotic before she called a rapid response for the ICU team to come up. By the time the ICU team came up I was ready to start bagging her myself. I don't think the floor provider or nurses realized how ill she was or how tenuous her state. I did. I had seen it before on December 26th. Even though I caught the episode very early on I couldn't help but think I was going to lose her do to their inaction. It's the worst most gut wrenching feeling in the world and it's becoming way too familiar. 

Thankfully she was in a better place before the event started and therefore didn't decompensate as much. Her lactate still got up to 10.9 and she still nearly had to be reintubated but got by on high flow or positive pressure administration. 

That night she got blood and medications to balance her ph back out. She then got blood again this morning and has seemed to be doing better since then. 

Despite looking and seeming a bit better after the blood administration the doctors are still worried. Worried about what may be going on that very mild anemia and seemingly normal baby things like pooping, crying, and eating can push her into such a dangerous and sickly state. So they think it's best to push up the cardiac cath to tomorrow. She'll go in tomorrow morning for what will likely be just a diagnostic cath, to get a good look at her specific anatomy and physiology. Mapping her heart and vessels will allow them to make a better and more specialized treatment plan and timetable. Right now there are so many unknowns-it's horrifying to think of all the possibilities. At least once she has the cath we'll know what we are facing, even if it's not the news we hope for. 

I am sure I'll blog tomorrow to update and/or as a distraction for  myself during her procedure. This whole experience has been a lot to handle, and it's been so hard on our little one's tiny fragile body. Pray she can find peace and vitality soon. She needs to grow to be ready for her next major surgery in just a few short months. All these setbacks could have dire consequences if they continue.

Ps I am too drained to proofread. Sorry.

Best wishes to all.

Somer

Weighted Woes

Avelyn has been doing pretty well over the last few days. But unfortunately she's still passing blood in her stools-on and off anyways. This has been concerning because it prevents a complete rule-out of NEC. She has also been running a bit hypotensive on and off which puts her at higher risk for NEC. Plus she's been over perfusing her lungs and not perfusing her body as well as she should or could theoretically-this puts her at an even higher risk for NEC. So as usual the worry has yet to subside. Despite all this, clinically she looks good. Her providers have been extremely conservative with her feeding given all the above but she is finally met her goal feeds yesterday and handled it well throughout the day. 

Yet given she's still more than a pound under birth weight there's a lot of concern about her putting on weight. As she's at such a high risk for NEC and her intestines are showing signs of irritation, it was decided she may not tolerate formula fortication of her breastmilk well. So instead of adding formula to her breastmilk the amount of breastmilk will be increased a bit. So that's what we're doing today. So far she's handling it but it won't be until tomorrow until we really know. If she handles it well then we'll have to try and start moving into bolus feeds. She'll likely have to go home with the NG tube to ensure growth.

That's because cardiac kiddo's have to work so hard to eat. Sometimes they expend more calories eating than they get from their food so they do better with feeding tubes. It'll be a temporary nasogastric tube, not a stomach or g-tube. Sean and I just want what's best for our skinny little baby. She needs to grow as much as possible before her next open-heart surgery, which is only a couple to a few months away. It'll be a very intensive surgery with another lengthy recovery and high risks. In the mean time she'll have to have a cardiac cath to assess her vessel anatomy in more depth and hopefully ballon out her left pulmonary artery that needs to grow before her next surgery. 

So long story short little miss has a ways to go yet but she is making headway and we're quite thankful for that!m Love to all of you and thank you for the positive support and prayers. Our friends and family are more amazing than we ever realized! 

Hunger Pangs and Pains

We'll all the tests, labs and X-rays we were waiting on today came back inconclusive for NEC-so we're doing it all again. Meaning the providers believe it best to withhold feeds another day, allow her gut to rest another day and repeat the labs and tests in the morning. This hasn't been easy on the baby. She is so hungry. We've tried to stay on top of her pain but that's been difficult with her being so hungry. She's been getting very upset most of the day. We finally had to relent and restart oxycodone because she was just too uncomfortable. We had been trying to stay away from opiates because her belly is upset already but it was just too much. She needed relief. 

Right now she is not showing clinical signs of NEC which is good but her X-rays show possible abnormalities and her lactate level is somewhat elevated again. We've been questioning the providers all day as to potential possibilities of cause other than NEC. We hadn't shared this (because we've been trying to come to terms with the potential diagnosis ourselves) but Avelyn had an abnormal DNA screen come back a few days ago. She tested positive for the abnormal cystic fibrosis gene. The test is inconclusive in and of its self. It tests for the mutated gene but doesn't tell of a person is only a carrier (one ressive gene) or had the disease (two ressive genes). The gene itself is fairly common in Caucasian populations with 1 in 36 being a carrier. Sean and I don't know who passed the gene or if we both have it. We'll have to be tested before and if we decide to ever have more children. If Avelyn does have cystic fibrosis we're in a whole new arena I can't comprehend or handle the thought of right now. It would be extremely hard on her already over taxed little systems to deal with CF. We've been praying no-stop she's only a carrier. 

Until this issue with her bowels she had not shown any clinical signs of CF (although many infants don't) so the providers weren't concerned. Since she has had issues with her bowels I have been pretty adamant about getting further testing-now rather than outpatient as initially planned. I don't want her to be suffering with a disease that they could potentially start to treat. However her current clinical signs are necessarily in line with usual CF symptoms either.

Another potential cause is my diet and my history of diary allergies. Sean was smart enough to bring that up to the nutritionist today. I hadn't thought of it as very relevant, except when it was suggested to fortify her breast milk-I requested nondairy based. But anyway diary allergies are often genetic and its possible that she is more sensitive than I am. Meaning her gut could be reacting to the very small amounts of diary I consume that cross into my breast milk.

Another potential cause and our hope is her little guy is still trying to process food in general. We've stopped and started feeds for prolonged periods of time 3xs now. All the stopping and starting is hard on her little healing and developing system. These two days off feeds could be doing her more harm than good but it's necessary to prevent the worst complications should she have NEC.

So we're in for another long day and night with a sad and very hungry baby. She needs her nutrition more than most any other baby to heal internally from surgery. We're already seeing outward signs of decreased healing with her incision opening back up. She needs to get the all clear tomorrow. I don't like thinking of her little surgically altered heart being stressed without adequate healing proteins. She's a strong girl but she isn't invincible. Please pray for peace and a fully happy belly. 

As always, much love to you all.

Somer

Step Ups and Steps Back

Avelyn has been progressing with her feedings over the last few days, but she has also been getting increasingly more fussy. Sean and I have tried to stay on top of her pain management, so we don't think it's mainly due to post-surgical pain. The worst of fussy spells seemed to correlate most with gas, bowels or possibly reflux. When she cries she is at risk for desaturation plus all of her straining puts more stress on her little post-op body which likely makes her pain worse. To make matters worse Sean found blood in her stool this morning. While this could amount to nothing serious, as a cardiac baby she is at a high risk for Necrotizing enterocolitis or NEC-which is essentially necrotic intestines due to poor perfusion. 

Since the blood was found in her diaper this morning, all feeds have been held, X-rays were taken and labs were drawn. We won't know for sure if she has NEC until morning. We're really hoping and thinking she doesn't. If she does she'll have to restart IV antibiotics and TPN, which means we'll likely have to go back to the ICU. 

Over the last couple hours she has rested and rocked comfortably in her Grandma Shelley's arms. In the mean time Sean and I are bracing for a long night of uncertainty with our hangry little baby (and yes, it's been confirmed-she has my temper 😳). Please keep her in your thoughts. She's been though too much to have to deal with intestinal issues on top of everything else.

Moving Along

In the last few days Avelyn has really been making progress. She has been tolerating full feeds via her feeding tube into her stomach. Right now she is still on continuous feeds, in a couple days she'll move to bolus feeds. She'll need to tolerate bolus feeds before we can give her more by mouth than we currently are-which is just 10ml 3x a day. 

Despite all the progress there's still a lot to worry Sean and I. She is still tachypnic (breathing too fast) often, although she doesn't do so quite as frequently or quite a s fast as before. She has been retaining too much fluid the last day or two-which can through her into fluid overload. She's very sensitive to fluid overload because she can start over circulating her lungs (which will wear her out from effort) and not perfuse the rest of her body. It's a delicate balance to perfuse her other organs, including kidneys, enough to have her diurease excess fluid off but not get her saturaturions too high to cause over circulation. The doctors have been adjusting her Lasix everyday looking for the best dosage and frequency. In the mean time Sean and I are watching her fluid levels very closely. 

One more mishap and she has to go into the cardiac cath lab and it's still just too soon. If she went now they still wouldn't be able to do any interventions to help her because she's not far enough post-op, it would only be doagnostic. We want her to get the most out of each procedure she has to go through so the further we can push the cath date the better for now. 

Our little Avelyn moved out of ICU today, which has been a very stressful blessing. We're glad she doesn't need the more intensive specialized care anymore but the last time they tried to move her out of ICU was the day she crashed. So we have been quite apprehensive about the move. I know she is better than she was on the 26th and has really made improvements, but being without the constant observation and monitoring is concerning. I am sure many parents feel the same after an extended ICU stay. You can't help but get dependent upon monitors and specialized care for peace of mind-if you can call any moment of thought peaceful while your kiddo is in the ICU anyway. 

Long story short- Little Avie is making great strides and doing her best. She of course still has a long way to go but we are proud and so grateful for her improvements. Thank you all for the well wishes, positive thoughts and prayers. We appreciate each and everyone of you.