Today was a day of mixed emotions, not in any particular order which diverged into a bit of a roller coaster ride. Nothing extreme with loops and turns, thank God.
Gavin and Greta had a nice day away from home with friends. It was nice to spend a day (my birthday, no less!) without refereeing their teasing and fighting. I guess that’s all part of being siblings, but it has certainly gotten old a long time ago! I’m running out of ideas to keep them entertained and occupied when they are here. A trip off to the zoo or the library was something I used to totally take for granted.
Other high points were the surprise visits from friends and the planned visit from my Muthr. (That afforded the luxury of more than 30 seconds in the shower! Aaahhh.) And a long talk with Karen Santorum who is always such an insightful pleasure to talk with.
The dip of the day was the phone call from Children’s Hospital calling with the results from Nora’s chest x-ray. I’m getting pretty good at deciphering what the news is going to be based on the caller’s tone of voice. And no matter how hard I try to change the outcome of what they are about to say with a chipper and upbeat tone of voice in response, the bad news comes barreling forth anyway. This news wasn’t anything that knocked me down to my knees, but not exactly what I wanted to hear either, mainly in part because I’m not 100% clear on what it all means. Based on the X-rays from early May compared to the ones taken this past Tuesday there is an indication that Nora has “chronic lung disease”. There were some areas of opacity in the X-rays that show this to be the case. It could be that Nora is aspirating her formula into her lungs which is causing the problem. The swallow study will answer that question, and the sleep study will offer some more answers. Both of those are scheduled for July. If she is aspirating, they will try to thicken her formula to see if that helps any. The good news, I guess is that maybe the aspiration is the answer to our question of why she desats. If we can fix the aspiration, maybe that in turn would fix the desats? This is just me guessing because I really don’t know. (!!!??)
After that phone call I was feeling a little down and out of sorts, audibly reminding myself that IN GOD I TRUST, IN GOD I TRUST, IN GOD I TRUST. He will never let go. In my quiet moment of prayer I was wishing I had someone there with me in addition to God’s presence. That was of course when the doorbell rang. God sent my friend Jamie as the perfect remedy for my dour mood right when I needed her. There are way too many instances of the right people at the right time lately for any of it to be coincidence. Makes me teary to think about it.
As the day draws to a close I’m so thankful for God’s grace and mercy, my hubzbind, my kids, my family and friends and for everyone out there praying for this sweet bundle of love.
“Do not be anxious about anything,but in everything,by prayer and petition,with thanksgiving,present your requests to God. And the peace of God, which transcends all understanding,will guard your hearts and your minds in Christ Jesus.” (Philippians 4:6-7 NIV)
We declare God’s wisdom, a mystery that has been hidden and that God destined for our glory before time began. None of the rulers of this age understood it, for if they had, they would not have crucified the Lord of glory. However, as it is written:
“What no eye has seen,
what no ear has heard,
and what no human mind has conceived”—
the things God has prepared for those who love him—
(1 Corinthians 2:7-9 NIV)
iwillcarryyou 
In my experience and as a pediatric nurse, I don’t understand why they are waiting to do the swallow study if they think she is aspirating. Kinsley did this often and ended up with frequent pneumonia and de-sats and trips to ICU. Aspirating is serious business. There are ways to help prevent this depending on her feeding skills and how much she is aspirating. The simplist thing is thickening the formula but maybe even a tube until she matures enough to swallow well. Some babies without anything wrong have this problem too. Also reflux can cause aspirating which can be helped with meds and leaving her in an upright position after eating.
II hate to aound negative but I would want that test done ASAP to prevent more complications for little Ms Nora.
Love the pic yesterday with the sunshining on her little head!!
My first thought, exactly, Amy!!! If aspiration is suspected, the swallow study should be done immediately. Why allow (and further more, why RISK) her to continue to possibly aspirate her feedings and cause issues?
On another note, Nora looks darling today and I cannot wait to hold her 🙂 Thanks for the post!
I agree. I work at children’s and know they can move up the swallow study and you should request it or have an answer on why they are willing to wait. Def Don’t wait till July. If she is aspirating it can sometimes be a fairly simple fix and not correcting it can cause big problems. Don’t stress but do get some answers. Love that precious face and those little cheeks!
^^^^Agreed!!! That was my first thought as well. Why would they make her wait! (another nurse here :). Sometimes as parents, we have to be our child’s advocate! Go get ’em, Aleisa!! Oh and happy belated birthday! Praying for you and your family! Thanks for the updates! Your faith and gift of writing is astounding!
Look at that little grin in the first pic! I love her little cheeks! I will pray specifically for her little lungs and trust that our God will guide the doctors in finding a solution!!!
All will be good… The Lord hears us all and anwsers all our prays. Nora Rose is the Lords little angel and he will protect her from all suffering. Happy birthday to you.
HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY DEAR ALEISA, HAPPY BIRTHDAY WE LOVE YOU!!! I LOVE THE PICTURES YOU POSTED TODAY OF OUR LITTLE NORA ROSE. I AM NOT A NURSE, BUT I CERTAINLY AGREE WITH AMY. THEY SHOULD NOT WAIT, IT SEEMS LIKE THEY SHOULD TRIY TO FIX THE PROBLEM NOW. I WILL SEND EXTRA PRAYERS UP WHEN I GO TO BED. PLEASE KNOW THERE ARE SO MANY PEOPLE WHO LOVE YOU, AND ARE PRAYING FOR YOUR WHOLE FAMILY. GOD HEARS OUR EVERY PRAYER, AND I KNOW HE WILL WATCH OVER YOU ALL. HOPE YOU GET SOME DESERVED REST TONIGHT, AND THAT TOMORROW WILL BRING BETTER NEWS. GOOD NIGHT AND GOD BLESS.
I read that you said Nora is on formula?? I think you should look at human milk for or 4(I don’t remember exactly) human babies, or eats on feet…on facebook. Its basically mommies donating their extra pumped milk for FREE!! So helpful. And sooooo much better for babies!! Especially babies special and unique like little Nora!!
Happy birthday to you btw!!
If you need any further information feel free to email me Aleisa! andrearodriguez70@yahoo.com
I agree with other commenters, If there is suspicion she is aspirating the swallow study should be scheduled immediately. As in, today. I have learned to be my medically complex child’s advocate. While I do think that CCHMC is a fabulous healthcare facility and I am grateful every day to have it in my city I have had to push to get care my child needs in a timely manner. This is the nature of the system, not a judgement of CCHMC. I have been on this road for 9 years–please let me know if I can help.
Glad you had a birthday free of refereeing! Will certainly continue praying they find answers for Nora and the best treatment possible. God Bless!
My son had airway penetration, not full blown airway aspiration (the liquid would start to go into the airway but he was almost always able to get it all back out with each swallow). I had to start thickening his formula- we had to start with “honey” consistency and have been weening it back slowly over the last 6 months. He is set to have another swallow study in July to see if he is able to start having liquids without it or if we need to continue with less thickener. It definitely is an easy solution to a dangerous problem and I would think that a specialized hospital would be able to do the test much earlier than that- we’re from that Mansfield area and my son had his done at Galion Community Hospital without much delay. I have really enjoyed your blog- what a remarkable little girl your Nora is! I think of her often and pray for her daily 🙂
As a rule of thumb that we have learned, don’t ever schedule through the scheduling center but through the individual departments. This way, you are usually talking to someone who has a nurse close by that can answer any questions. We regularily ask for appointments to be pushed up and once when we didn’t, our Urologist was livid and had some words with the nurses. If possible, check out the Liberty campus. It’s less busy, beautiful, and you will be in and out faster than the main. They can’t do all of what we need for Russell, but they can do some of our appointments and it has been worth the drive.
Prayers for little Nora but also for mom and dad. Many of us have been in similar situations and it means a lot to have the support and encouragement from others. Little Nora is in good hands with her mom and dad and especially God in her corner. I am not a nurse but I do agree with the previous posts. Sometimes you just have to do a little pushing on your own if you feel their is a reason to do so. Don’t let central scheduleing keep you from getting the help Nora needs if she needs help sooner than they schedule it. Also, even though many tests are run and many doctor visits take place, keep in mind that God is in control and Jesus is the Great Physician. It is amazing what God can and will do in our lives. I love looking back and remembering the doctors shaking their heads when they see what God can do, such as my son and I surviving Placenta previa and my son’s Kidney starting to grow and function instead of disolving. They are only tools in our world and God uses them. We have some great doctors and nurses and others in the medical field but beyond that we have God and the power of prayer. Praying for total healing of little Nora 🙂
God has this! Nuff said. God Bless. I’m waiting for the swallow eval and sleep study before I comment. I think this is just another mountain Nora will simply and gracefully conquer. Have a blessed day!
Love those precious chubby cheeks! Prayers to all of you.
First of all, I love your blog. I follow it daily. I don’t know you at all, nor do I remember how I stumbled upon your site. I have, however, been captivated by sweet little Nora and I eagerly anticipate each new post here in Madison, WI.
I think you are doing a WONDERFUL job as a Mom. You are exactly what Nora needs and are clearly making the best choices for her. Never doubt that! Not being in the medical profession myself, I can sympathize with how frustrating it can be to trust the doctors and nurses and never feel completely sure of their advice/direction. I will pray that God will place doctors and nurses that will be honest, patient, and thorough in giving Nora and you the absolute best they can. I can see that God has already given you a community that is supporting you and that is such a blessing! I will continue to pray for you, Alesia, and for your whole family.
Psalm 25: To you, O LORD, I lift up my soul; in you I trust, O my God. Do not let me be put to shame, nor let my enemies triumph over me. No one whose hope is in you will ever be put to shame, but they will be put to shame who are treacherous without excuse.
Aleisa – I had a lot to tell you. I sent you a Facebook message. 🙂
OMG! She is getting so big! Love those cheeks!
Stay strong, with every diagnosis you are one step closer to a healthier baby! Be blessed 🙂
Thank you for the blessed reminder of ALL the blessings (good and hard) in my life!
Sometimes I just want to shout out “If you don’t want me to be anxious or worried…then stop sending me things to be anxious or worry about!!!” 🙂 Hoping you find your answer at the swallow study and that the thickening agent works well for Ms. Nora.
#1 – I agree with the PPs. Why are they waiting for the swallow study? Do they have a reason? I think I would ask if it can be moved up. If for some reason it can’t, at least you’ll have your answer.
#2 – as troubling as your phone call was, just try to remember, it’s one step closer to figuring out what’s going on, which is one step closer to fixing it. All part of the process.
Hang in there!
Hello. You don’t know me but I follow along your journey via this blog. I am a Speech Pathologist and I deal a lot with swallowing disorders and its one of my speciality areas. As others have stated, you should get the swallow test done immediately. The aspiration could be contributing to the desating but it doesn’t always have to. Its so important to get that test done and fast! Thickening liquids is not the only treatment but it is one. Positioning is also a big deal with aspiration. Good luck and I hope you get to the bottom of this soon!
Hi Aleisa! And, Happy Birthday, Belated! So sorry to read that the phone call was not what you wanted for your Lil’ Sweetie. I’m a former Pediatric RN…I’ll say no more. Totally Trusting that He is carrying Nora in the Palm of His Hand and that things will happen in His Perfect Timing. Just continue to be a Warrior Mommy for your girl! Kiss her for me. Love, Jo
Hello I have been following sweet nora story for some time now and have to say I think they shouldnt wait for the test it should be asap….. You have a very beutifull baby fiel