Sorry for the delay in the post...we are remodeling the bathroom and it's been late nights working...I am hopeful to share about Jack's dedication and the beautiful morning it was...so stay tuned! Here is a general overview of what the past month has looked like...
On June 25th, Jack turned 3 months old. Luke turned 2 years and 3 months and he has officially entered the world of tantrums and meltdowns. I could feel the stares of those around me as I disciplined Luke after he darted from the elevator to the escalator while I was pushing the double stroller in the mall last week. He is still trying to figure this new transition of having Jack in the family. I have tried to spend one on one time with Luke because I know he is trying to do his best to adjust as we all are...along with being a toddler. We have some sweet, tender moments but it's amazing how a meltdown can suck the energy out of you.
Well in the past month we have had a few appointments that have helped us explain some of the concerns we were having. He did the swallow study at Children's and it was confirmed that he does aspirate. Easiest way to explain it is that when he swallows it doesn't always go down the right 'tube' and when he aspirates it goes down his trachea and could go down into his lungs and likely cause pneumonia. The speech pathologist that did the study told me that what we have to do is thicken his milk to a honey consistency to prevent aspiration. After she told me this she continued to say that it was hard for her to tell me but there is not something out on the market that is safe to thicken breast milk. The two products, thick it and simply thick it, was recently taken off the market for causing infections in infants and no longer safe. I looked at her with disbelief. What? You are telling me that I can no longer give him my milk? All I could envision was our deep freeze that is over flowing with over 3 months of frozen milk. I had worked my tail off pumping so that if Jack wasn't still very strong at nursing (he burned more calories than he took in) that I could have enough milk for him for months after I decide to stop pumping. My eyes filled with tears. I had accepted the fact that I was only nursing him 1/day and the rest pumping and now she is telling me that I have to stop giving him my milk all together. She suggested that we switch to formula and rice cereal. I would have been fine with this decision if I hadn't put so much work into the past two months and able to give him the benefits of breast milk. I had to believe that there were moms out there that would never give this up so I did a little research.
After a couple days of searching the internet for a safe thickener I came across Gel mix. It's an organic thickener made from Carob bean. I called Jack's doctor and he said he would look into it. After doing his own research he said he couldn't recommend it because it hadn't been out very long (less than 5 years), but that he couldn't see anything wrong with it. It's USDA approved and he could understand if I chose to use it.
So after 4 weeks on it, I can tell that he is getting stronger. It is a process to get a bottle ready but I can tell it's helping. With getting bigger and stronger, I am hopeful he will no longer need the thickener down the road. A blessing in disguise with this whole thickening is that it is helping his muscles with his swallow and which I was told can help later with speech development. We have an appointment at the U of MN next week with another speech pathologist that gives us information on more things that can help his swallowing. It's called a feeding clinic. When the doctor was suggesting we do speech...I kind of looked at her and was thinking...Lady, he's only 2 months old...I don't think he is going to say much right now. She was referring to swallowing...gosh, I am learning a lot! :)
The occupational therapist comes out 2/month and also his ECSE (early childhood special education) teacher. The local school district provides services from birth-21 years of age and I called them when Jack was a week old. At this age, they work on anything from neck strength, rolling, holding, supported sitting, etc. His ECSE teacher is helpful in reaffirming his growth. Both of them have said that he is doing great and that he is definitely strong. They were also amazed that he was rolling over at 6 weeks! He continues to get stronger, rolling over numerous times throughout the day, spending time on his tummy, slide line laying, and holding and grasping things.
We visited the ENT on the 13th of June. It was a very good appointment. Luke actually saw Dr. K for his tubes when he got them at 15 months. He explained what he would be looking for and also what he saw from the report of the swallow study. He said that Jack didn't aspirate that badly and that he thought that he has potential to get stronger in the 8 weeks before our follow up visit and could get back to nursing. He had to put a scope down his nose to see about the reflux, laryngomalacia, and snoring. He said that it was a little irritated from the reflux and that he will grow out of the laryngomalacia. He prescribed Prevacid for the reflux and a nasal spray for the snoring. Both of them have significantly gotten better so we are so excited to see the progress. Dr. K has worked with many kids with Down syndrome and wants to see Jack every three months to monitor if there is fluid in his ears and check his ear drums (his ears were too small to see anything) as hearing loss can become a factor.
I have come to understand that each doctor has their recommendations but ultimately we have to make a decision on what is best for Jack. I truly respect the doctors we have worked with so far, but I also know that unless they have worked specifically with Jack on numerous occasions, they are going off their experience and some generalizations. I don't think I would ever have formulated this opinion two years ago with Luke. I was a first time Mom and I just believed everything to be true and followed everything they said. But I do believe that as parents we have a right to share our feelings if something doesn't feel right. I left the swallow study thinking I didn't have any other option and had to make the change, and then after a day I got kind of angry. I got frustrated and thought, I am going to see what is out there. I asked a few other Moms what they did, what they thought, and what their advice would be. Sometimes it's best to ask the professionals...Moms!
Some have asked how I am doing. I think they are mostly referring emotionally. I have had some really great days. Jack smiles a lot which melts my heart. He loves to cuddle his head right on my shoulder. I will catch Luke going over to Jack and resting his head on him and giving him kisses. It's adorable. I am falling more in more in love with Jack and I really can tell you that he is the sweetest baby! He rarely ever cries, if he does it sounds more like a cat's meow. It's cute! :) He is an amazing sleeper...I know this is such a gift...he has been sleeping for 6+ hours for the past two months. He usually goes to bed around 8:30 and wakes up around 5:30am to eat and then sleeps until about 8am. This has all played into the emotional piece. I don't function well on little sleep. We have enjoyed the summer with play dates, going to the park, coloring, playing catch, hanging around the house, time outs (ugh...not fun), and swimming! I am excited to meet and connect with a few families with kids with Down syndrome this summer too!
I have LOVED running! Honestly, the time early in the morning, when the city is not awake yet, the sun is shining, and the quietness has been amazing. I listen to my favorite KLOVE station on I heart radio and it's a time of worship for me. This gives direction to my day and strength for the daily climb.
Here is one of the songs I ran to this morning...just gave me such encouragement and I hope it does for
you too! There are times that I doubt the ability I have to be the best Mom to Luke and Jack. I often go back and read the comments and encouragement that we got right after having Jack. Many people expressed that we were the best parents for Jack, that things would be fine, that God chose us for him. Sometimes those words helped me believe in me when I didn't believe in myself. Thank you.
Remind me who I am by Jason Gray.
May we always remember who we are to Him...Beloved!
