6 months

Today it’s been 6 months since we handed our precious baby over to surgeons to fix his failing heart. What a difference 6 months makes! The days leading up to open heart surgery were filled with frustration and fear. These days are filled with laughter and learning. It’s amazing to look at Eli and revel at how far he has come. Today his heart is working perfectly, his scar is barely noticeable, and his smile is surely contagious. He truly is mommy’s little hero. ❀

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Finally living life

A week ago I was handing my precious son over to strangers. Strangers that I had entrusted with his life. It was the most terrifying thing I have ever had to do. What is interesting though is what happened afterwards. A calmness came over me. Yes, physically I had handed Eli over to the nurses who would care for him during surgery. But spiritually, I had handed him over to God. This blog has been a spiritual journey for me. I have felt many emotions towards God. I have questioned my faith often. Yet, when I kissed my son as he lay in the arms of a stranger last Tuesday, I was filled with nothing but faith. Pure, genuine faith. I’ve come a long way.

Eli is doing wonderfully at home. He has so much more energy now that he’s not expelling it all on just breathing. He smiles constantly and has become quite the chatterbox. He loves to play and wiggle. Tomorrow he has a follow up appointment at the cardiologist. I am expecting nothing but great news.

It is kind of surreal to be home with Eli’s heart surgery behind us. We had fully prepared to be in the hospital for 3 weeks (we were told he’d most likely be there for 2-3 weeks). Back in August, we found out Eli did have a heart defect. At first, we thought the defect was much worse (Disillusioned – August 1, 2012). Thankfully, a few days later, the defect was confirmed to just be a VSD (Great News! – August 4, 2012). Although a hole in the heart was welcome news compared to what we thought the defect was, it is still very scary to know your baby will be born with a heart that is not 100% functional. We tried to educate ourselves as much as possible about what could happen and what was likely to happen. Eli presented with heart failure within a week of birth. That was scary. Our main goal became to help him gain weight so he could be at a healthy weight to have heart surgery. When gaining weight became too challenging for him (and for us!) we knew it was time to go forward with the surgery. At that point, everyone was exhausted. We never had the opportunity to just enjoy our baby. It was all about feeding him and checking his color and noting how many breaths per minute he was breathing. When we came home from the hospital on Saturday I half expected to see the ‘It’s a Boy!’ banners. I felt like we were just bringing our son home for the first time.

Every year, we will celebrate Eli’s birthday then three months later we’ll celebrate his ‘Heart Day’. We’ll celebrate the day he entered this world and then we’ll celebrate the day he got to live in this world. Our son is truly living now. You can hear it in his joyous cooing. You see it in the vigor in which he kicks his feet. Today, I may have even heard a little giggle. All along this journey I’ve said that Eli is teaching us about living life. Finally, we get to watch him do just that.

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Anxiously approaching Tuesday

On Thursday, we had the pre-op appointment for Eli’s surgery. We met with the surgeon who explained what would happen during surgery as well as the risks. I chose to try and not listen much to the risks. He kept giving us the odds (1 in 600,000, etc.) of something happening. I finally stopped him and told him we don’t really pay much attention to odds considering we were the 1 in the 1 in 1000 parents who are blessed with a baby with Down syndrome. He took interest in our story and asked about how we found out about Eli, etc. It was nice that he actually seemed to care. He is a highly skilled surgeon and seems quite compassionate.

He told us Eli’s surgery is an “easy” one. That was comforting, considering. We will be away from him for 6-7 hours start to finish. I thought about writing about the details of his surgery but it may stress some of you out. The synopsis is that it’s open heart surgery to repair a large hole in his heart. His heart will be stopped and a machine will function as his heart and lungs. This is what terrifies me the most. That’s where most of the risk lies. But I have faith that the Good Lord will keep watch over our sweet baby. He will guide the surgeons and nurses in their care for him.

I am anxious about seeing him after surgery. I’ve been warned that he could be puffy and will be hooked up to multiple tubes, IV’s, drains, and machines. I obviously will not be able to hold him. Luckily, as long as he’s intubated, he’ll be sedated. Once they are confident he can breathe on his own they will remove the breathing tube. After that is out they will decrease his sedation. I am so hopeful that he will not feel much pain. Seattle Children’s Hospital has a great reputation for pain management so I trust they will take care of his needs. He will most likely be in the CICU (Cardiac Intensive Care Unit) for 2-4 days then moved to the surgery recovery floor. His stay on that floor will last until he is ready to go home. Our total hospital time could be anywhere from 4 days to 3 weeks. We pray that Eli is a good healer and strong enough to go home sooner than later.

I have been sick to my stomach since we left that appointment. Although I was assured that he will be in highly capable hands, I am made anxious by thoughts of what poor Eli will have to endure. Thankfully, most children were born resilient and our son was born a fighter. This will be his biggest battle but he’ll have an even stronger heart to do it with. I have no doubt he will be victorious. He will one day wear his scar as a badge of honor. As Eli’s parents, we could not be any more confident of his strength.

We ask that you continue to keep our precious son in your prayers. We ask for prayers for us as his parents. We pray for strength. We need the support and love of friends and family more now than ever. It is not easy for us to ask for help. But we also know that our superpowers may fade. Super Mom and Super Dad may need Super Friends to swoop in and rescue us. We have been blessed to not go through this alone. Thank you for your continued prayers and good thoughts for our family.

I will update this site as time permits. I’m guessing there will be a lot of downtime. I may need an emotional outlet (which is what this blog has become to me). Please forgive me in advance for any rambling I may do.

Love and blessings always. xoxo

Just another pretty great Sunday

So we’re still challenged to get out littlest guy to eat. He just tuckers out so quickly. It’s sad. We have an appointment with the cardiologist on Wednesday. She was supposed to present his case to the cardiac surgery team to see if we could move forward with surgery. She was thinking the answer would be yes as he isn’t gaining weight anymore. The other option is the feeding tube.

Thankfully, Eli’s spirits are still up and he’s quite playful – when he’s awake! It’s hard to be disappointed that he won’t eat when he gives me this smile!

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He did hit his minimum fluid intake yesterday – thanks to the persistence of my awesome hubby! We’re back to needing to get up once or twice in the middle of the night (he started sleeping through the night at one month old!) but whatever it takes we’ll do.

In other good, albeit unrelated news, Eli witnessed his first Seahawks playoff win! He really was very interested in the tv. It could’ve been more that he was interested in what his mommy and daddy were yelling at for the first quarter of the game. Luckily, we have perfected our kid friendly cursing and Cody didn’t learn any new words! Although, he did say “son of a biscuit” (I say that) which cracked me up!
Looks like we may have another diehard football fan in the Harrington fam!

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GO SEAHAWKS!!!

The sun’ll come out…tomorrow

I am feeling a little overwhelmed today. Ok, totally overwhelmed. I could use some prayers. It is so frustrating to have a baby that does not, or cannot, eat. He acts hungry but then he gags on the bottle nipple or acts like he can’t breathe. Each feeding takes 1-2 hours! We usually have to change his bottle a few times to figure out which one will work for him that feeding. Then, halfway through the bottle, he falls asleep. His cardiologist, Dr. Vernon, likened his eating to running a marathon. Because of the hole in his heart he has to work harder just to do a simple activity, like eat. He’s exhausted. He is not gaining weight like we had hoped since he’s burning more calories then he’s consuming. And believe me, we are trying. He’s almost at the max caloric intake. We spend all day (at least it feels that way) trying to get him to eat. In the meantime, my toddler is watching way too much television and feeding his goldfish crackers (that he insisted on having for breakfast and I was too consumed with Eli to argue with him) to the dog – who is barking to go outside and puking up said goldfish crackers. I’m feeling like a failure as a mother. To both Cody and Eli. Heck, even the dog is suffering from my lack of attention. Cody just wants me to put the baby down and play with him. But I can’t. I’m too busy trying to make Eli eat. I know this is all temporary. Open heart surgery, God willing, will fix him. Dr. Vernon is thinking surgery will need to be in the next 3-6 weeks. In a perfect world he’d be double his birthweight before surgery. But, at this point, he won’t be 13 pounds until he’s a year old! I am terrified of sending my precious infant off to surgery but at the same time I am so hopeful to get to the point where he is starting to thrive.

Please just keep us in your prayers. Today, the song ‘Tomorrow’ from the musical Annie comes to mind.

The sun’ll come out tomorrow
Bet your bottom dollar
That tomorrow there’ll be sun

Just thinkin’ about tomorrow
Clears away the cobwebs
And the sorrow ’til there’s none

When I’m stuck with a day
That’s gray and lonely
I just stick out my chin
And grin and say, oh

The sun’ll come out tomorrow
So you gotta hang on ’til tomorrow
Come what may

Tomorrow, tomorrow
I love you tomorrow
You’re always a day away

The sun’ll come out tomorrow
So you gotta hang on ’til tomorrow
Come what may

Tomorrow, tomorrow
I love you tomorrow
You’re always a day away

Tomorrow, tomorrow
I love you tomorrow
You’re always a day away

So for now I’m going to stick out my chin and grin and sing show tunes at the top of my lungs. Yep, that’ll make me feel better. πŸ˜„

Doctors and specialists and therapy – oh my!

Sorry that I was in such a raw state emotionally last time I posted. This is a hard road to travel – having a newborn who is “sick”, constantly waiting for the other shoe (in our case, shoes!) to drop. When I started this blog I committed to be open and honest with my emotions – good and bad. Life isn’t always rainbows and unicorns and I can’t pretend that I’m always perfectly ok with what has been blessed upon us. Please understand that I passionately love my children and when I speak of life being unfair it is not me I am sad for – it is them. I can handle anything. As a mother I just want to shield them from any unhappiness and pain that I can.

Eli did not respond to the initial Lasix dose of 0.2cc’s twice a day so now it’s been upped to 0.4cc’s twice a day. I really pray this helps him. He’s still eating like a champ but his breathing is labored. That is really the only sign that he’s in heart failure currently. Hopefully this increased dosage will help and it will buy us more time. We really want him to be bigger before handing him over for surgery. He doesn’t necessarily need to be but I’d definitely feel a little better if he was. So, our job continues to be to fatten our little guy up! Cody happily participated in feeding him last night.

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We received a referral from Eli’s pediatrician for an ENT (Ear, Nose, Throat dr.) so we’re waiting for them to call us back to schedule an appointment. I’d really like him to be seen by them before having his follow up hearing test. He’s a very snuffly boy so I’m convinced that part of his hearing issue could be contributed to his stuffiness. They told us in the NICU to not suction his nose unless absolutely necessary because it could cause damage to his very small nasal passage and nostrils. The night he failed his hearing test he sneezed and we had to suction him. He seemed to be much more aware and alert after that! Sounds far fetched but both Chuck and I noticed it. He was definitely not our same “Snuffleupagus” after getting some of that yuckiness out, that’s for sure! He seemed to actually feel better. Today, unfortunately, the stuffiness is back.

We also have an appointment scheduled for his Early Intervention evaluation. Early Intervention (EI) is a program provided by each state in the country. They offer therapy services (physical therapy, occupational therapy, and speech therapy) based on the needs of the individual child. This service is available to any child that they evaluate and deem that it is necessary. Usually, Down syndrome is an automatic “in”. Once they evaluate Eli they’ll decide what services he needs and how often. Then the therapists will come to our house for each appointment. It was very important to Chuck and I to find an in home therapy program as we feel it will be more beneficial for Eli and our family to use the tools we already have in our home. Plus, they can include Cody in the therapy process. Who better to teach Eli than his proud big brother?

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Chuck and I were just talking about the fact that our 3 week old baby (today – Happy Birthday Eli!) has more doctors in his short little life than the other three of us have combined. Crazy! Our job as his parents is to make sure he is always in the care of the best doctors. That takes a lot of work and research but our boy is most definitely worth it! I’ve heard that the first year with a child born with Down syndrome is the hardest as far as doctor visits, specialists check ups, etc. I’d say so far this is very true. In his short time at home (2 weeks) we’ve already been to 7(!!!) doctor appointments. Wow. And we’re adding in two more specialists. At least we’ve got lots of eyes keeping watch over our boy! We just want him to have the very best start at life. We want him to have the best so he can be the best.

Prayers and good thoughts please!

Today I come to you asking for prayers. Eli had his cardiology appointment today. At less than two weeks old they already see signs of heart failure. That sounds somewhat scarier than it actually is but it does mean his heart is working a lot harder than it should be. Especially when he eats. His cardiologist, Dr. Vernon, likened it to running a full sprint and trying to drink water at the same time. But, our little fighter gets through each feeding like a champ! Today she noticed his breathing was fast and deep. To buy us more time before open heart surgery, she has put him on Lasix. That should help keep the fluid off his lungs and help his heart to not have to work as hard. She has also increased his caloric intake by having us add extra formula to his feedings (both breast milk and formula feeds). After his second post birth echocardiogram, his VSD (hole in his heart) has shown to be “quite large”. Dr. Vernon suspects he also has a small ASD (hole in a different part of the heart) but it can’t be seen by the echo. She believes it is so small that it will only require a stitch to repair.

Having him go on medicine so soon has kind of knocked the wind out of our sails. We thought he was doing so good! On one hand, I’m happy he’ll get some relief and hopefully not have to work so hard to eat and breathe. On the other hand, once meds are started surgery becomes more imminent. I know he has to have the open heart surgery. I know he will be better after surgery. But I am scared to death to hand my precious baby boy over to strangers to cut open his chest and repair the main organ of life. I trust in the Lord. I know the surgeons that will handle our son’s surgery will be guided by His hands. But it still terrifies me. It once again seems like one step forward, two steps back.

So today, I ask for your prayers for sweet Eli. If you don’t pray, please send out a good thought on his behalf. Eli could use all the positive energy we can muster!

A former co-worker, now friend, offered to take newborn pictures of our sweet boy as a gift to us. Here’s a few that she took of our cute pumpkin:

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Can you stand the cuteness?!?

Thank you friends, family, and those of you who have embraced our family from afar. This journey is made a little easier because we know Eli has all of you in his corner.

xoxo Melanie

Great news!

What a roller coaster of emotions this journey has been so far. Just two days ago we thought baby Eli had a rare and possibly complicated heart defect in addition to the Down syndrome. Today we had an echocardiogram done to confirm this diagnosis. Although he does have a heart defect, it is not Tetralogy of Fallot as previously suspected. Upon further inspection of his heart through ultrasound by the cardiologist, we finally received some good news. He has a small hole in his heart, called a Ventricular Septal Defect (VSD). This is different than the hole we thought he had previously, which is an Atrial Ventricular Septal Defect (AVSD). She did not see any signs of the AVSD. She did see a possible muscular VSD as well but that will close on its own. If future echocardiograms show signs of Tetralogy of Fallot it will be a very mild case and not as serious as we thought earlier in the week. But, as of today’s echo, she is pretty confident we are only dealing with VSD. Obviously we would prefer Eli to not have any heart defects but as heart defects go this is the most common and “routine” to treat. It will require open heart surgery between 1 and 4 months of age to patch the hole. He’ll most likely have a hospital stay of 2 weeks to recover. He may spend a few days in the NICU at birth but that will be more for the Down syndrome, not the heart defect.

So today we rejoice in this good news. The last two days were filled with despair. Today is filled with optimism. Once again I am confident that everything will be ok.

Thank you for all of your prayers. Today God proved to me that they really ARE working!