It has been too long since I have updated on what’s been going on in our lives. I apologize. The last few months have been busy and every time I try to sit down to write, Alden wants to help. He is currently napping, so hopefully I can get a good few paragraphs down.
Alden’s health seems to be exceptional these days. He had an echo done a couple months ago which showed no pulmonary hypertension- this is really great news. He hasn’t been on any medication for ph since he left the NICU and his strong little heart seems to be doing exactly what it needs to be doing. The muscle on one side of his heart is a bit bigger, but it is no cause for concern. He also had a lung perfusion scan which measures the amount of blood being pumped from his heart to his lungs. It showed that his left lung isn’t actually getting very much blood flow to it which helps explain why he sleeps so much (other than his breathing tiring him out so quickly). We were informed that there are some medications that can help with the blood flow, and we will know more about that when he goes to surgery/pulmonary, or CDH, clinic on October 1st.
Alden has been off oxygen now for 6 months and is doing really well. Since he has been walking he breaths louder and we can often hear him, so we try to sit him down every now and again with a quiet toy to help get his breathing back under control. It only scares me if I let it. We have 4 oxygen tanks here just in case he needs extra support and the pulse ox machine to check his oxygen levels if we feel he needs it. He never looks blue unless he’s really cold. But even then he doesn’t need support. I am so proud of him. And really grateful he is thriving.
His weight exactly where it should be, too. He is 19 lbs 14 oz and 30 inches tall. He is falling in the 27th percentile for weight and the 50th percentile for height. Even his head is in the 50th percentile. He sure has a chunky little body! His high calorie diet seemed to work in his favor for the last 5 months. He is officially done with formula and is drinking whole milk. It is taking a bit to transition him to whole milk since it’s a lot thinner than the formula, but he seems to drink about 2-3 oz at a time. He takes about 4-5 bottles a day. When we go to clinic we will reevaluate his progress and make any changes necessary should he need them. However, he looks so good so I am confidant they will send us on our way without any special dieting instructions.
Alden LOVES to eat. I mean, absolutely LOVES food. Almost any time once of us sneaks to the kitchen outside of normal meal times, Alden KNOWS. And he comes flying around the corner and yells because he thinks we are getting food. He is such a character! I am convinced he thinks he has to be eating ALL DAY LONG. He loves animal crackers, graham crackers, chocolate milk, mashed potatoes, scrambled eggs, grilled cheese, green beans, carrots, yogurt, applesauce, and spaghetti. He enjoys feeding himself and is learning to hold his sippy cup by himself. We will be introducing meat into his “diet” soon as well. His diet may not seem healthy to most, but with CDH kiddos, they burn a lot of calories just breathing with their small lung, so all the calories and fat we give him the better. At least until he is able to maintain keeping his weight up without all the extra help.
We just discovered that Alden has 4 top teeth. He’s had 2 bottoms for a couple months now and that’s all we thought he had! Yesterday I decided to feel his gums and sure enough, 4 teeth were up there. He has been hiding them well! You can’t seem them when he smiles or eats, or talks…so maybe that’s why we assumed he didn’t have any.
Alden’s personality is just the best. He is truly the happiest kid I know. He is VERY independent and plays well by himself. He loves his blocks and trucks, and enjoys playing catch with our dog, and us. He really likes his cousin, James, and follows his everywhere. James is his first best friend, besides Sean.
Aside from caring, playing, and keeping up with Alden, Sean and I have been hanging in there! I started working in April at a local coffee shop and when Sean got a new job, we decided it would be best if I stayed home again with Alden. Our schedules wouldn’t work out if we both worked and Alden would have had to be with a sitter, or go to daycare which is definitely not something we are comfortable with. So at the end of July I was home again. Working really helped with all my anxiety and took my focus off of what all can still happen with Alden. I feel a lot better these days, but some days are still hard and…dark. I try to focus on Alden and how/who he is NOW instead of 1 year ago..even 6 months ago. Anyways, Sean now works for a pest control company full time, and at Costco (Wireless Advocates-the cell phone kiosk) part time. Things are busy but it’s just what we have to do for a season to make things work financially.
About a month ago Sean tested for police and passed with a good score. After that we just waited to hear back. So far Tumwater, Olympia, and Mason Country have sent him applications which he has filled out and sent, and Olympia responded saying he is eligible for the next phase. We are PRAYING he continues passing and receives an offer. This is Sean’s dream, so please keep him in your prayers.
As most of you know already, we have a healthy daughter on the way. I am 21 weeks pregnant and a lot of my day is spent thinking about how in the world we are going to care for a brand new baby at home without nurses and machines. It is really scary to me, as you can imagine. We are currently trying to decide where to deliver, and have settled on a name for her, which will be announced at birth.
I wish I could update a bit more, but I hope to soon. Thank you all for celebrating Alden’s 1st year with us. His life means so much to us. XOXO