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:
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.
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!
We went in for another level 2 ultrasound on Tuesday. Our little boy was very active. The doctor was impressed with his muscle tone and his strength. Everything looked great! Even his heart!!! Dr. Case did confide in us that at the 17 week scan he was quite concerned that what he suspected to be a heart defect (Atrioventricular Septal Defect, or AVSD) was going to be a large one. So we went in to the scan hoping for good news but expecting the worst. For once we received good news!!! The defect, if there even is one, is very small – so small in fact he’s not even sure if it’s there. We have another ultrasound scheduled for July 31, I’ll be almost 27 weeks then, to see if it’s actually there or not. If it is, or if it’s still inconclusive, we’ll get an echocardiogram of Eli’s heart done at Children’s Hospital in Seattle. I am so thankful for the wonderful doctors that are along this journey with us. They truly have our son, and our family, in their best interest. I can certainly feel the love.
If you asked me a month ago, I would’ve said I regretted finding out that Eli had Down syndrome prenatally. It took away the joy of the pregnancy. Instead it was filled with worry, grief, and anger. Today, I am happy to report, the joy is back! I love feeling my baby boy kick at me. I giggle when he has hiccups. I love hearing Cody tell people Mama has a baby in her belly. I no longer try to hide the fact that I’m pregnant by wearing baggy sweatshirts (thank goodness since summer has finally arrived in Seattle!). I proudly shop for maternity clothes and will talk about Eli to anyone who asks. I will talk about Eli. I may or may not talk about the Down syndrome. That is just a part of him. It is not all of him. He is my baby and I am so proud of him. So proud that his kicks are strong. So proud that he impressed the doctor. So proud to hear his strong heartbeat. I have a feeling this is only the beginning of things he does that make me proud. Today, I am one proud mommy of both my boys.
So I’ve been struggling the last few days. I have this overwhelming feeling to pack up my little family and run – run far, far away. That obviously won’t fix anything since I’m pregnant and my worries are all about my baby growing inside me. I feel like I’ve been in denial. Like I’ve just been saying how accepting we are of this whole thing because that’s what everybody wants to hear. I want everyone to see how ok I am with all of this. And most of the time I am. But all of a sudden I’m filled with anxiety and fear again. What if we don’t have all the support we thought we were going to have? What if we can’t afford to provide all the care needed for our baby with special needs? What if…
On the beach last month Chuck and I promised to stay in the moment and not worry about the future so much. In theory, that’s a wonderful idea (and it’s worked thus far), but you can only ignore your fears for the future for so long. At first our fears were centered around the very distant future – Would our son live with us forever? Could he get a job? Get a high school diploma? Go to college? But then we realized we didn’t know anything about our Eli besides the fact that he has Down syndrome. Why worry about things we have no way to predict? We’ll do everything we can for Eli so he has the best possible life, and future. But now my worries are more centered around the next few years. Will he walk? Talk? Be able to feed himself? Will I have a
“toddler” for the next 5+ years??? I adore my oldest son, Cody, but we’re only at the beginning of the toddler stage and it’s challenging! I don’t know if I can do this for a few extra years, or worst yet, forever. I worry about how different our lives are going to be. I like our life now. I don’t want it to change drastically. What will that do to Cody? Will I be able to give him even half the amount of attention he gets now? I want to focus my energy on getting my baby well (he has a suspected heart defect – an ultrasound will either confirm that suspicion or give us great news on July 3rd). How can I focus on one child without taking my focus off the other? I’m sure this is a concern of many moms facing the birth of their second child. And I know it’s normal and obvious that the first child will not get all the attention of the parents anymore. But our case is different than most. What if Eli needs to spend extended time in the NICU at birth? How do we spend time bonding with Eli and keep Cody feeling secure and comforted? We are a very attached family. He’s never spent the night away from us. He’s only been with a babysitter (his Nana or his Grandma) a few times for a few hours. Everyone says how unhealthy that is for all of us but we just like being together. Now I’m scared that he will feel abandoned when Eli arrives.
I remember the overwhelming fear that hit me the night before my scheduled c-section with Cody. We were cuddling with our two dogs and I said to Chuck, “I don’t want our lives to change. I like it the way it is!”. I laugh thinking back to that night because our lives are so much better now! That next morning my heart exploded with love for my new baby. I have never experienced a love so great. I keep trying to remember that. I was fearful of change before Cody’s arrival. I’m fearful of the change that will occur with Eli’s arrival. Will it be different? Of course. But my heart has room for more love.
I’ve heard it said that once you receive this diagnosis for your child you go through a mourning period, grieving the loss of the child you thought you were having. Sadly, I am all too familiar with grief. I know it goes through stages. I know it comes and goes. I will not beat up on myself for going backwards in my grief. I know tomorrow, or next week, or next month my feelings will once again be different. I am so thankful we received Eli’s diagnosis prenatally. Many people have to deal with this roller coaster of emotions all while trying to bond with and care for their baby when they find out at birth that their child has Down syndrome. I can only imagine how difficult that must be. So, I am grateful to be able to go through this now, when Eli is completely unaware. I pray that when he arrives my heart will once again be exploding with love and everything will truly be ok.