Milestones

Two weeks ago today Avelyn entered this world and in doing so forever changed mine. I feel I've lived a life time in the short span of 14 days. I became a parent and then nearly lost our sweet baby. Sean and I will never be the same. I don't think we could ever forget the feelings of ineptitude that raged through us as we could do nothing to help our child. I still don't feel like we have much of an opportunity to be parents. Sure we have changed a few diapers and gone to bat with her providers a time or two. But I look forward to true parenthood. I look forward to the mundane. I am ready to put life and death situations behind us. If only it were that simple. We'll have to relieve much of this in just a few short months and that's a heavy weight to bear.

As for Avelyn's progress, she's a little rockstar. She's off the ventilator and all positive support airflow. She's tolerating full feeds via an NJ tube, tomorrow we'll go to NG then work more on PO. She's off all her cardiac medications and is doing well so far. She had her chest tube pulled this morning and is breathing much easier now. The chest tube had been holding her back from taking deep breaths. It was painful so she was breathing shallower. But she never cried so to convince the nursing staff of her pain was a shiftly struggle. The only signs she's have were increased respirations, blood pressure and heart rate. She rarely cries, especially from pain. Most of the time it's because she's angry. (I guess she's a bit like me after all 😉). All in all she's a very sweet baby who is giving it her all. She's still fighting and we're still praying that before long she doesn't need to fight anymore and can be a normal happy baby girl. In the mean time we cheer her on and celebrate each small victory--whether it be a big cough, poo, or first smile--we celebrate them all. Please continue to keep her in your thoughts. She's doing much better and we're so thankful to still have our baby and for everyone's support. Much love to all for the new year! 

Sometimes there are No Words

Last night We came dangerously close to losing Avelyn. Again. 

There are no words to describe the feeling of seeing your baby actively dying in your hands. There are no words to describe sitting in the floor of sterile hallway knowing that your child is fighting for her life and not knowing if she'll make it through the hour. I would never wish it upon any one, and you can't understand until you've been there. I know many parents have experienced the opposite outcome and am forever grateful to still have my sweet baby. She is now stabile but is still so sick. She's the strongest individual I've ever met and I can't believe she's mine. She been through more in her 10 days of life than most ever will in long full lives. She has fought to stay with us and now it's time we fight like hell for her. 

Yesterday:

The day started with her chest X-ray looking worse on the right side, meaning she was having fluid, infection, too much blood flow, or simply trouble completely expanding that right lung due to pain/discomfort. However the doctors on call were really hoping to move her to the non-specialized floor. So she had the medication helping her heart beat more effectively stopped; had an IV access to the right atrium pulled by the surgical team (where she lost enough blood that questioned replacing it but in the end decided not to); she had her nasogastric tube (put in the night before because she couldn't tolerate enough milk by mouth) advanced into her intestine due to fear she was aspirating her feeds; she was diureased quite a bit (likely too much); and lastly she was started on positive pressure breathing treatments to force her right lung to expand. 

Despite so much going on yesterday she seemed to do pretty well except she was breathing too fast and not keeping her oxygen saturation quite as high as the providers wanted. She was started back on the high flow oxygen to help her perfuse and expand her right lung between breathing treatments. 

She spent more of the day awake and alert than she ever had before. Although looking back, it may have been a sign of restlessness from having to work too hard to breathe. She wasn't fussy and didn't let on that she was struggling though. She was coo'ing and studying our faces intently. With less fluid on board we could see that she seems to have my big round eyes. 

Around 6pm things took a turn for the worst. She got a breathing treatment and afterwards we noticed she was pale. We attributed a bit of this to her blood loss during the day. I was then helping the nurse change her diaper when I noticed her eyes roll, a moment later her saturations dropped to 30%. The nurse ran out of the room to find the doctor right as she quit breathing and her heart rate began to slow. I was holding her trying to stimulate her into breathing again. She was bluish gray and cold. Her body was lifeless for what seemed like eternity. Yet it was only seconds. By the time the doctor and nurse came back she was gasping with her mouth wide open and head thrown back. She continued gray and mottle and her heart rate continued to drop. The doctor called a code and the nurse began to bag her. My in-laws and I were rushed from the room.

Sean had just left the hospital for a moment to get fresh clothes, so he wasn't here. That made things so much harder. I spent half an hour sitting in a hallway without news, wondering if our was going to live or die and how and what I could possibly say to Sean. 

I had gotten through to Sean by the time the doctor came by to say she was "stabilized". Sean was able to listen over the phone to the doctor while he was on his way back to the hospital. We weren't allowed back in to see her for another hour. It wasn't long before we learned her lactate level was up to 15 showing extreme tissue hypoxia. But we are still not quite sure as to why. It could've been infection, infarct, blood loss, sepsis, poor lung expansion, heart failure and so on. She got an echocardiogram that had favorable findings. Her cardiac function and output looked as expected- leaving not a whole lot of answers for her episode of heart failure other than just over taxing her cardio-pulmonary system.

The night was tenuous, she trouble keeping her blood pressure up and had to have extra medications and fluid to her her perfuse. She also bit her breathing tube which caused her saturations to drop again to the point she needed to be bagged and masked but when she passed out she let go of the tube. 

Now she's all swollen again and the plan for the day is to get fluid off of her to make it easier to breathe. 

So far she is doing as well as we can hope for given the events of last night. She is diuresing and making headway. 

Sean and I are being pretty adamant that her providers allow her to rest and take things slower now. We aren't pushing to have her extubated today or even early tomorrow. She needs rest and time to heal. She was pushed too hard, too fast, for too long. We can't let that happen again.

The cardiologists seem to think that she can't expand her lungs well due to irritants- possibly pain, the chest tube, generalized neonatal weakness and all the stress she's been under since her open heart surgery. They do not believe it's a right sided over perfusion issue. The ICU doctors believe it's a right sided over perfusion issue causing fluid build up in the right lung. The cardiologist's explanations have made more since to Sean and I. Plus we have questioned the speed of the ICU team's interventions for days and have been ignored. To us the signs point to her being over taxed and undersupported after her surgery. Which as it turns out has never been done before. The surgeon had to improvise with her anatomy in order to optimize growth and expansion of her left PA. 

Through it all, she has fought valiantly. She has not been fussy nor has she cried much at all, despite being tapered from morphine early (we advised against it and were ignored), and being forced to breathe through the pain and discomfort. In doing this she could only manage short shallow breaths which eventually led to her event.

I've almost lost my baby multiple times in the short 10 days that she's been on this earth. Twice because she was pushed to do things she wasn't yet ready to do. She needs time to recover and heal at her own pace. Sean and I cannot and will not sit idly and watch it happen again. 

My child nearly died in my hands and there was nothing I could do about it. I don't intend to relieve the experience and I don't intend on losing my her.

As always, please keep her in your thoughts and prayers.  

Christmas Eve

This year I haven't thought much about Christmas. I have not had the emotional capacity or energy to. I know it's awful not to have gotten my child anything for Christmas but honestly, it's just too hard to buy her gifts and celebrate knowing what she's going through. I know this surgery, and all those that shall come next, are meant to give her life and health but each carries potentially fatal risks. So while we celebrate each a every victory and milestone of recovery- I can't help but feel our true Christmas will be the day we take our girl out of here for good. That day will be my Christmas miracle.
Needless to say, all I have wanted from the moment we learned of Avely's condition- is to have her happy and healthy. It's a huge want. A want that many parents of CHD kids never get to experience. We're lucky that it's still an eventual possibility for our girl. She continues to make strides in her recovery and we hope to get out of the pediatric cardiac ICU and into a less specialized and acute floor by the first of the year. 

As for specifics: 

Today has been quite the eventful day for our dear Avelyn Marie. She is slowly but surely making headway in her recovery. She started to urinate off excess fluid (which was given to her immediately post-op to get her blood pressure up) and hasn't let up! She's starting to look less swollen but is still retaining quite a bit in her belly, hands, and feet. 

All the extra fluid also makes it more difficult for her to breathe. It can seep into her lungs and also just weigh her chest down.

Once she started urinating the excess fluid it was time to work on extubation. She hated her breathing tube. Every time she would move her little head with it in she would fight and struggle against it, which would often upset her to the point of needing pain medication. Through the night she performed admirably on CPAP trials, which are done to gauge readiness for extubation. Although she got a bit worn out from all the trials, they were still able to pull her tube in the late morning. Since then she has been doing pretty well. Although she does have periods of breathing too fast. She's still in high flow oxygen and will be for sometime but she's improving. 

Since the breathing tube came out we were able to hold her for the first time since Tuesday. Holding her is a major process of managing the 2 central IV lines, arterial line, 2 peripheral lines, chest tube, 5 lead heart monitor, kidney and brain perfusion monitors, pulse oximeter, and high flow oxygen cannula. So we won't be able to do it much for now but I am beyond grateful none the less! 

The two hours with her in my arms was the best Christmas gift I could ever imagine. 

In some of the photos you can see the excess fluid collecting in her little face and neck. It's been hard to see her so puffy and I'm glad she making strides towards getting it all off. Please keep our little Avie in your thoughts. She's fighting her damnedest against an uphill battle that she doesn't understand nor deserve. This kid is the strongest individual I've ever known and she's only a week old.

Much love to you all and Merry Christmas!

Early Recovery

Avie's shunt surgery went well considering but she had some post operative challenges that were tough to handle.

At first she was hypotensive, meaning they couldn't keep her blood pressure up. Then she had a lot of trouble with lactatic acidosis, meaning her pH was off and she had too much acid in her blood. Her acidosis trouble lingered for hours and had us terrified. Her lactate level got pretty high and the doctors couldn't get it to come down despite trying multiple methods. This lab is indicative of tissue hypoxia and cell damage. So it could've had multiple causes, a minor cause, or a very dangerous/significant cause. At one point a cerebral ultrasound was preform to rule out a stroke. Sean and I watched in horror-especially after learning results wouldn't be back until the morning. At another point we were told that if the lactate level didn't come down they would have to preform an echo and cardiac cath to look into MAPCAs, which could signal the need for additional surgery. She wasn't in condition to handle another surgery so soon, and though we didn't speak it aloud each of us couldn't help but have thoughts of losing our baby. So needless to say we were both a wreck.

After agonizing hours of tweaking epinephrine, morphine, melrinone, insulin and multiple other medications- the level finally showed improvement. 

With all the potentially sedative medication cut back she also started to move around a bit and open her little eyes. I can't describe how heartbreaking it is to see your infant

cry silently past a breathing tube and not be able to do anything about it. I mean nothing. She can't be held. She can't be swaddled. She has very little surface area not covered with a monitor, IV line, or major incision. Too much noise or voice stimulus also isn't recommended. It's crushing to wonder why your baby is crying after having such an invasive surgery. Is she in pain? Is she scared? Is she struggling for breath? Is she uncomfortable?  Is she hungry? Is she feeling all the above? I'll never know- all I can do is watch her struggle. 

Looking at such a little baby you can't help but think she is too precious to undergo so much suffering. It isn't right,. Yet her pain is also her pathway to life, so how can I not put her through it. If she doesn't endure these atrocities she'll never know life's beauty. The irony is cruel. And I feel cruel. I feel cruel for having signed the consent. I feel cruel for standing by watching her suffer. I feel cruel for doing nothing.  That's all I can do.  Nothing. 

As for now she is still on her ventilator and is fighting it. She is having some trouble with weaning. Probably partly because she is also having issue with peeing off a lot of the extra fluid she has on board. She's super puffy and looks so pale. She doesn't look like the same baby. My baby.

My sweet precious baby who hasn't yet seen her first week of life.

We're hoping she continues to improve and stays as comfortable as possible. Please continue to keep her in your thoughts but also pray for all the little babies on this floor-many of whom seem worse off than our sweet girl. These kids are undeserving of illness and pain,  and yet are fighting for their lives. Hold your kiddos close this Christmas and love them fiercely.

Open Heart Surgery

Avelyn's surgery was yesterday. It was the most difficult day the three of us have ever had. We thought the surgery would be the worst of it but her recovery has proven us wrong. 

Once the surgeon opened her up and got her on the heart-lung bypass machine he took a good look at her heart and surrounding vessels. Turns out her ductus arterious was formed in a way that favored the right side and leaving he left underdeveloped further past what the echo cardio grams could pick up. The artery has a significant narrowing out closer to the left lung which has encouraged smaller accessory arteries (reffered to as MAPCAs) to grow. This is bad, as the small accessory arteries steal their blood supply from the periphery. The surgeon was able to clamp the largest and most accessible MAPCA but he full expects more that he couldn't see or get to. 

To help the left side grow, he fashioned her BT shunt to favor the left side. This increased blood flow to the main left pulmonary artery should also encourage the MAPCAs to recede. If they don't her surgeon will have to manual find and clamp them off during the next surgery. 

So what does all this mean?

Well it means that plans reverted back to the original staged repair meaning in 4-5 months she'll need another open heart surgery for a full repair. 

I apologize for these tardy posts but things have been hectic. I know there are those out there waiting for updates but often times I cannot pull myself away from her bedside to write. She's just to fragile and precious to leave or to divert my attention away for long. 

I'll post some details of her recovery later. 

The photos below are the last ones of her unscarred chest and her just after coming up to the Pediatric cardiac ICU. 

Preparing for the Unpreparable

I can't believe my baby is four days old. These four days have flown by in the blink of an eye and yet I feel I have known Avelyn for a lifetime. She is doing her best to grow and be strong but her little heart seems to be holding her back. Her surgery was switched back and forth between the 21st and 22nd four times, due to scheduling conflicts and a more urgent case. It's been hard dealing with the back and forth but I am glad for the extra day of growth and relaxation for Avelyn before her surgery.

She has been doing her best to rest, which is not as easy as one would think due to life in the NICU. There's a lot of poking and prodding of these babies- all necessary to provide safe care and treatment but that doesn't make it much easier to handle.

One thing I may not have mentioned yet is how she over heats quite easily due to medicine she is taking (prostaglandins) to keep her ductus arterious open. Holding/snuggling her-which she loves (especially her daddy's snuggles)- often causes her to run too hot which causes her breathing to accelerate. She has been having trouble with tacynpea (breathing too fast) the last few days already. 

Yesterday they discontinued her feedings for a while for fear she had an infection starting in her intestines due to shunting of blood away from the area. She wasn't happy about it, in fact she was quite upset. She wore herself out telling us just how upset. It was heart wrenching. Not long after all of her labs and tests came back negative and her feedings were restarted at half the volume. While this helped she still wasn't to happy. It wasn't until late this morning that she was able to eat her regular 25 ml every 3 hours (which is still not much but all little CHD kids can handle safely). She is going to struggle with being NPO past midnight tonight in preparation for surgery.

Sean and I are still trying to wrap our heads around how wonderful and beautiful she is let alone what will happen tomorrow. Leaving her here at the hospital when I discharged yesterday was the hardest thing I have ever done in my life. I know it's necessary and what's best for her but no mother should have to leave the maternity unit without her baby. It's torture and yet I have it so much better than many moms- including my own mother who experienced the loss of my oldest sister (Avelyn Marie's namesake) at birth. My love goes out to every mother and father who has ever felt such a feeling. 

If any experience could top leaving her here, it's handing her over to be cut in the morning. Again I know it's beat and she won't remember it- but I can't help being terrified. She's so small. Her heart is the size of a walnut and her vessels are mere millimeters. I completely trust her surgeon and am confident all will be well but I am terrified for and angry any baby should have to endure such. Infants are pure innocence and magic. The are so resilient and strong but yet so fragile and weak. The thought of any baby experiencing pain, strife, and struggle has always been hard for me to bear. The thought of my child, my one and only baby girl-who I wish to protect from any harm or pain, going through such a complex and risky surgery is nearly unbearable. And yet we must put her through this pain and struggle to keep her. It's a situation that brings about feelings too complex for words. 

In this Sean and I are helpless. All we can do is hope and pray for the best and that we've made the right decision for her future.

We appreciate the grace and blessing already bestowed upon us. Tomorrow may be too hectic and I may be too emotional to update the blog but to promise to post as soon as I can. Until then please keep our sweet girl in your thoughts and prayers as always. 

Avelyn's first day

I called through the night to check on our girl repeatedly. She mainly did well, she kept up her O2 Sats, rested and kept her IVs intact running her life saving prostaglandins. 

Her sweet daddy was then able to spend the whole morning with her and help her reach some very important milestones- like her first feeding and poopy diaper! He also met with her cardiologists and learned that her MAPCAs look clinically insignificant and her pulmonary artery branches still look good. That with her size makes her a good canidate for skipping the BT shunt sugery and moving straight to full repair. 

The surgery is currently for Tuesday and will have too many challenges and risks to list. She will be on the heart lung machine for at least two hours and will endure more trauma to her little body than most endure in a lifetime. However her prognosis coming out is positive for her to grow into a more normal and healthy life. We have met with her surgeon rice now and have every confidence in him and the Vanderbilt team to truly work God's wonders on our sweet baby girl.

In the mean time she is tasked with learning to eat and trying to rest and grow as much as possible. She has the spirit of a little fighter and seems bound to prove she is a wonder all her own. 

Avelyn's Arrival

Well so far our little Avelyn has shown a pattern of making things interesting. We checked in to Vanderbilt at 9pm Tuesday to start the induction process. We were told to hope for an early arrival on Wednesday. Needless to say things didn't work out that way. Avelyn came into the world via csection at noon on Thursday the 17th after 38 hours of labor-21 of which without any progress. 

Her challenges started before her first breath. She was mostly silent and motionless for what seemed like forever-although her daddy lied to me about this fact. Her color was a dusky purple/blue and we endured the silence in terror. Finally we heard a neonatologist shout they needed to insert a breathing tube. And while we knew things were serious we knew at least she would breathe. 

She was then whisked quickly to the NICU for care and stabilization. She was supposed to also have a central line placed through her umbilicus but that also didn't go well. Later that night when I got to finally see her she was over breathing her ET tube so it was removed and she tolerated it well. She then had a couple IVs placed after her first infiltrated. She had to be stuck multiple times to establish each of the IVs. Seeing such a new baby covered with bruises isn't easy. 

Later in the after noon after her echo, we also learned that she has some MAPCAs associated with her tetralogy of fallot/pulmonary atresia. We figured MAPCAs would make her case much more complicated with a less positive prognosis.

Playing the Waiting Game

Sean and I just returned from Vanderbilt where we received some potentially promising news. Our little Avelyn is growing well, and seems to be within the 90th percentile across the board of measurements. Her estimated weight is currently 6lbs 9ozs, at 33 weeks 5 days gestation. She is still quite active and looking more and more like her daddy by the day.

As for her medical conditions, her airway is still looking good-although she didn't cooperate much for ultrasound assessment. She seems to be a little shy about showing her neck. As for her pulmonary atresia and ventricular septal defect, she is doing as well as can be expected. The most recent echo confirmed she does not have a pulmonary valve and the root of her pulmonary artery is too small to be of any use once so ever. However we did confirm some good news though. Her left and right pulmonary arteries are of normal size/diameter and are in the correct place (these are the vessels that run from the pulmonary artery root to each lung). This is great news that makes her prognosis much better as it means these important arteries will not have to be crafted from her other major vessels. 

The best news we received is that considering her stellar growth rate and the condition of her pulmonary arteries after the bifurcation, she may be a candidate for skipping her BT Shunt surgery (which is essentially a surgery to create an artificial ductus arterious). The BT shunt surgery is meant as a temporary means of providing oxygenation/perfusion until she is larger and stronger enough to handle the more serious surgery of valve and root artery graft placement and ventricular septal defect repair (patching the hole between her left and right ventricles). Skipping the BT shunt repair and going straight into the more major cardiac surgery will be much harder on her little body initially. Therefore not many babies qualify for this option and very few doctors preform this surgery on newborns. However the potential benefits of doing this surgery earlier are numerous. She would have one fewer open heart surgery-meaning less scar tissue development, less opportunity for infection, a month or more less time spent in the ICU, and no 4-6 months of chronic hypoxia or low oxygen perfusion. Sean and I would also feel much better taking her home to Johnson City from Nashville, as after the valve and artery graft she should have normal oxygen levels. 

We are trying not to get our hopes up, as very few babies are candidates for skipping the BT shunt surgery. We won't know if she qualifies until she is here a couple days or so. In the mean time we are focusing on ensuring she stays in-utero until her scheduled inducement date of December 16th. While there's not a lot we can do on this front, we are monitoring her very closely. That means while here in Johnson City I am having weekly ultrasounds, biweekly midwifery, and non-stress tests. At the first sign of labor or fetal distress we have to head to the hospital here in town and on to Nashville. 

So all in all we are praying she continues to be a little rock star baby and just stays put like she needs to. 

Thank you all for the continued thoughts and prayers for our sweet baby. I know that many babies are born into far worse circumstances than our little one and thank God every day that our little one will be provided a fighting chance at life. So we really appreciate the out pouring of love and support shown to us and Avelyn more than I could ever express. It is amazing to see how many lives she is already touching before she has even entered this world.




On a lighter note we learned that Avelyn is already flexing her weirdness muscles. She is currently head down in utero but also has her feet and hands up next to her head. Her strange positioning made getting decent images difficult, which has become a pattern for stubborn girl.
 

In some of the images you can see her little foot on the left side of her forehead :)

Not out of the woods but we've found a path.

Earlier this week we made another trip to Vanderbilt. We of course had high hopes, but with all the information we've gotten so far we remained guarded. Sean and I were both sick which of course made the trip all the more challenging. 

 

The first appointment was for a fetal MRI. I have had MRI's before but this was different. Me being sick (but not allowed to cough) and shoved into a pediatric sized MRI machine while nearly 8 months pregnant nearly sent me into my first panic attack. I think Avie felt my distress and started trying to help break free. Although I appreciated her spunk and effort it more than doubled the time it took to get appropriate images. 2 hours later we finished up but by that time I had a fever and was in a cold sweat.  Yet it all turned out to be completely worth it.

We learned from those images that little Avelyn does not have an airway obstruction. Although she may have some slight stenosis or narrowing of her airway, at this point it is not seen as clinically significant. This is such a blessing as it means our baby girl will have a voice and should be able to eat and breathe normally. Aka no tracheostomy or feeding tube! We should also be able to avoid the EXIT procedure and also have the possibility of a more natural birth experience. We'll still have to relocate to Vanderbilt to ensure our baby girl is delivered into the most capable hands as possible but we won't have to leave as early as we were expecting. 

So from a medical standpoint our girl isn't out of the woods by any means. She will still be born with critical heart defects (pulmonary atresia with a ventricular septal defect) and there's still the possibility of a chromosomal disorder (DiGeorge Syndrome).  However at least now she will have a real fighting chance and be able to go into her heart repair surgeries stronger and more equipped to heal. 

We thank you everyone for all the support and prayers provided to our sweet little Avelyn. She is already proving to be a feisty girl with a strong spirit. She is growing well despite her challenges. Currently she is in the 91st percentile for size! No kidding, she is over 4lbs at only 30 weeks gestation 😳 and it's not due to gestational diabetes, she just a big strong girl. The doctors say with all the surgeries she will need, bigger is better. They will let her grow as much as possible and then induce at 39 weeks, if she doesn't decide to come before then. In her case it's better to need to deliver by C-section and for her to be bigger than induce sooner so I can deliver naturally. We'll see how it all goes. We only want what's best for our baby girl.

Lastly we learned that she's pretty cute if I must say so myself. She seems to have Sean's mouth, my nose, and a head full of hair 😍 We'll just have to wait and see if it's a head full of ginger hair or dark like her dad's. Either way she's our little blessing and she couldn't be loved more. 

The unthinkable.

In early September, at our 25 weeks gestation sonogram, Sean and I heard the news no parents should ever have to hear. "There's something wrong with your baby's heart." We weren't really told anything in addition to that. Instead we were told that an appointment would be made with a pediatric cardiologist to diagnose and investigate the issue with our baby's heart. After preforming a fetal echocardiogram, the pediatric cardiologist subsequently referred us to Vanderbilt for more specialized care and confirmation of the diagnosis. The fetal cardiologist at Vanderbilt confirmed what the doctor her in town suspected. Pulmonary Atresia with a Ventricular Septal Defect. If that wasn't bad enough we were told that she may also have other birth defects including an upper airway obstruction or laryngeal atresia, and/or a chromosomal disorder.

In a couple weeks we will return to Vanderbilt to have an MRI. The MRI will investigate the potential  airway obstruction. If there is an obstruction, things will become much more complicated for our little one. The pediatric surgeon stated that babies with either of these disorders have a hard time, and the combination doesn't bode well in terms of prognosis. If she does have the obstruction Sean and I will have to relocate to Nashville as we will not be able to risk going into labor away from Vanderbilt. She will have be delivered via what's called an EXIT procedure- meaning she will have to have a surgical intervention to establish an airway while she is still connected to her placenta. Her heart defect will only complicate this procedure.

We won't know until she is born whether or not she has a chromosomal disorder to top it all off. The chromosomal disorder she is at risk for is call DiGeorge Syndrome. It was described to us as spectrum disorder that has a wide range of severity. Most of the time it affect mental and immune function. The last thing our little Avie needs is to be immunocompromised.

All of this has been quite difficult for Sean and I to process and handle. There are still so many unknowns. We don't know we'll get to bring our baby home, and if we do get to bring her home if we'll ever hear her sweet voice or laughter. She has the potential to be quite ill if she does make it through. However if she only has the congenital heart defect than her prognosis is positive. She will face have multiple open heart surgeries (the first couple being in her first 6 months of life) in her life but she should grow to be a happy, relatively healthy child with the appropriate interventions and care.

Please keep our sweet Avelyn Marie in your thoughts and prayers. She needs all the support she can get.

I will do my best to update this blog as time progresses and we learn more. I want to keep all friends and family who love us updated, but have found it taxing to contact everyone individually.