We have the swallow study rescheduled for Monday. When it was originally scheduled, we didn’t realize the urgency of the matter, which was why it was so far off. In the mean time I’ve figured out that Nora does much better when she drinks her bottle in a completely upright position vs. just being propped up a little. That prevents a lot of the coughing and sputtering, aspirating(?). Hopefully we get some answers Monday.
When I was younger, I casually entertained the idea of going into auto mechanics. Not because I was that interested in cars, but so I could be knowledgeable when I took my car in for repairs instead of subjecting myself to the risk of being being swindled. Or I could fix it myself. The same concept never occurred to me as it related to healthcare. I can’t exactly say that it’s any big regret that I did not pursue a career in the medical field (or auto mechanics). I realize we all have our different talents and callings in life. Neither of those are mine. Which is specifically why God puts other people in my life who DO know what they’re talking about as it pertains to Nora. I sooo appreciate all of the comments and messages, and everyone who has made themselves so available to help us. It’s so comforting to have input from qualified individuals other than just what the hospital tells us. I like the security of being able to request things that otherwise weren’t immediately offered or made available had I not been tipped off. It’s also very nice that I don’t feel like I have to call our doctors every single second with sometimes little, but genuine concerns. Thank you all of the nurse friends, doctor friends and Moms who have been down this road, or similar with your own children. What ever would we do without you!!??
Nora and I went for our longest walk ever so far of 2 miles this afternoon! Of course I chose to do this on one of the warmer days of the week at the hottest time of the day. Nora didn’t seem to mind! Nor did she seem to mind that her ditzy mother had the oxygen tank accidentally set on ZERO airflow the ENTIRE time!! 
For almost an hour she was without the oxygen flow, yet she was not lacking in color at any point on our walk or when I took her out of her stroller once we got home. It wasn’t until later in the evening when I was putting the tank away that I even realized what I had done!! Nora’s Guardian Angel must be very diligent and always on guard to cover for me when I screw up! Thank you!!!!!!!!!! Clearly, it’s a good thing that I am NOT in the nursing / medical field. {cringe!?}
Prayers for Nora’s little lungs and heart are greatly appreciated!
The one who plants and the one who waters have one purpose, and they will each be rewarded according to their own labor. For we are co-workers in God’s service; you are God’s field, God’s building. (1 Corinthians 3:8-9 NIV)
iwillcarryyou 
Im so glad that you were able to move her swallow test up! I pray that the formula is what is causing her lung infection and that they are able to fix her right up!!!
AND I am also glad that she did just fine without to oxygen!!
So happy that the tests were rescheduled. At least you will have some answers or at least some info on how to deal with aspirations if that is what is going on. Sounds to me like Nora is growing stronger every day. As she proved this evening for you.
Also never second guess yourself. Decisions we make are based on our knowledge at the time. As a parent we are constantly learning as we go. No one knows your children like you do. We can spend the rest of our lives wondering “what if I had done this or done something else differently”. Trust that you are doing a super job as Nora’s advocate. That is why she is yours. So give yourself a great big hug.
I have to say there were days when I truly thought I was loosing it. My daughter was adopted and I brought her home at 4 weeks. So on those days when I was drop dead tired or hadn’t had a shower for days, someone would tell me that I knew what I was getting into and what I had asked for. Maybe so but that did not stop my hiney from dragging from lack of sleep. Hang in there. And my advice… Take time for yourself and hubby. This is a long road. And trust that you are truly doing a great job.
Thanks for sharing the journey with us. I have truly forgotten how hard those early days were. And you make me count my blessings every day as I tuck my daughter into bed. She is also following your blog. And every day she asked me if I have read your posts. She celebrates Nora every day with you.
I can’t imagine all you are going through, but you do seem like a very strong and wonerful mother. You are doing a great job. I do however, understand the swallow studies and having a child who aspirates. My first daughter was born at 26 wks, weighing only 2 lbs. She did amazingly well, and no major complications, except aspiration. We have been through so many swallow studies with her, as she was on thickened liquids till the age of 3. Thankfully, she never got any infections from this, but I still think she has some minor aspirations to this day, which she is 5 yrs old. Hang in there. You will get through this as you have so much other stuff already. Also, I wanted to say, that my daughter did better feeding her in the side lying position, so the milk pools in her cheek and not the back of her throat, just a suggestion to try. When we did this, she wasn’t desatting like she would feeding he like a normal baby. Good luck and lots of prayers for her and her lungs and swallow study for monday, and prayers for her heart!
Hi alesia, so blessed by you and you family. I have 2 kids both born premature after 2 complicated pregnancies. I have been a hospital based occupational therapist for 12 years. I have a few thoughts about navigating healthcare. Most large systems, probably like children’s the doctors and therapists have emails. I’ve found emailing questions to the doctor if he or she will allow gets you an answer from the horses mouth. I always ask a doctor if they answer emails before I do it. Most of the younger one do. I found with my son who we thought was having seizures for a year and a half was having a movement disorder that he outgrew. I emailed the pediatric neurologist and she helped answer questions herself. You can call any pharmacy like Walgreens and ask to speak to the pharmacist for specific questions about side effects . When you go to the doctors office try to bring a list of questions that you wrote ahead of time and write the answers they tell you. I found with specialist especially thing can get complicated and most don spend that much time but if you have questios written they sem to always answer all of them. You are agreat mother. Always trust your instincts. I agree with the other posts, spech therapy can be very helpful in refernce to positioning for feeding as well as other techniqt
Have a great day. Karen
Ha! I, too, have been a pediatric OT for 12 years and was going to leave some advice. Glad to see that Karen covered it so nicely up there ^! Ongoing prayers for you and yours.
As an aside, I thought of you almost reflexively this Thursday evening. I provide home-based OT services and my service area has doubled recently while we look to hire a new OTR to replace one who resigned a few weeks ago. (prayers for her young daughter who battles cancer). I was driving an unfamiliar county road and multitasking (lesson learned,) when I realized all too late that I was fast approaching a sharp curve in the road. At 6mph, I didn’t have enough time to break AND turn, so I elected to break and steady myself for direct impact with the barricade of 5 telephone-poll-size posts full speed ahead. Once airbags deployed and I realized that I was okay, I exited the vehicle, made appropriate phone calls and assessed the damage. Let’s just say that my escaping that vehicle unscathed was nothing short of a miracle. My little car hopped a 20ft wide by 5-6 ft deep ditch to impact those poles. The vehicle, being as small as it was, took the impact like a heavy weight! The front end was gone but the cab itself, perfectly intact. I KNEW the Lord’s hands were all over this ❤ but that's not where you come in. I went to the ER for the dreaded physical exam as per company policy. As I walked in, I had the urge to walk OUT again, but I resisted. I live in a riral area and many people use the ER for minor emergency needs, do It was crowded and the staff was frazzled as it was nearing shift change. The clerk was a particular "jewel", barking orders, flat-faced, impatient, and bordering on rude. I told my co-worker who had accompanied me to the ER, "I'm sure she deals with garbage all day long. What do you expect?". This is where your sweet family comes in: an hour and a half later, the clerk calls my name to take my insurance info. (I JUST had a realization but will save it for the end!!). She asks all of the badic questions without lifting her head to make eye contact. Then she looks up, "What happened to you?" I answer, "I was in a car accident and I'm here to be checked out in accordance with company protocol, but I'm fine, ma'am." "when did the accident happen?" she asks, looking at me still. "today, at 2:50. I ran onto a pole at 6mph and I walked away without a scratch," I said, smiling (because I was truly amazed.) the clerk jumps up and loudly states, " what a testament! Oh YES!! This is a beautiful testament!! God is using you!! You know why?! (at that point, she had stretched fully across the counter hugging me and pulled back enough to place my face in her hands, looked deeper into my eyes than any human ever has, and continued to speak) It's because you have a pure heart!! You are here to help others.". She pulls back gently, sits down, and remains in her state of awe. She repeats, "what a testament!" a few more times and concludes with, "you must share this." and this is when I thought of Your sweet girl. Thanks to your daily testamony, my heart was receptive and I simply KNEW that God had chosen this woman, who's name as it turns out, is Nori, to make perfectly clear to me that He is ALWAYS with me and His will is that I live and continue to do what I do :0).
I am so very greatful to you for your posts and your strength. Your daughter is one of God's beautiful perfections and you, His soldier. Keep up the good fight! Thank you for your every syllable and thank God for Nora's every breath ❤ ❤
-Erin
Glad it worked out to reschedule. It will hopefully give you some answers or some other cles to the bigger puzzle. Always follow your gut instinct- God made parents to understand. What’s best. Aspiration can be silent – meaning that the person does not show any signs ( coughing, choking, wet or gurgly vocal quality like they need to clear their throat during or after eating, or the person can show signs. The great thing about the study is that it will show what is happening when she swallows- which will help give ideas to make her the safest when she eats. Having her more upright us definitely a great strategy! The speech therapist at the swallow study may give you more suggestions too! I pray that it all goes well, that answers are found and that sweet little Nora does not mind the taste of the barium in her milkies during the study on Monday! prayers to your sweet family for fun days together this weekend and peace that God never leaves you alone. Have a fabulous day!
Im sorry. Using my phone on the above comment. I was traveling 65 mph :0) not 6mph (kind of changes the story a bit.)
Love the precious pictures.
You have them! Praying for good results! Can not wait to watch sweet Nora again!
i love watching Princess Nora daily, prayers sent every day to this charming little lady and huge hugs to her loving family oxxoxox
I agree with those other blogs that say to trust your instincts as I feel that it is God’s Spirit speaking to you. Don’t be hard on yourself – you definitely are not a ditzy mother and have shown that over and over again with the tremendous job of mothering/parenting that you and hubby have done. I love the picture of little Nora in the arms of her teddy bear. It is a reminder how we all are in the arms of our Lord and Savior. I will be praying for you and Nora for the swallow test on Monday. We have a family in our church that has a child that they did that with and have been thickening her liquids for sometime and she continues to do better all the time. Your faith and love is definitely carrying you through these trying times. Wow – 2 miles for you and Nora ….way to go. Jackie
I thank God that He looks over our children when we do have a “ditzy” moment…not that you are, of course, but I’m sure you are sleep deprived and it is hard to remember everything when you don’t get much sleep!
So glad the swallow study has been moved up.
This is in reference to yesterday’s post…you mentioned your older children have been bickering a lot. We have 8 children (including a newborn) and yes, the older ones bicker. I’m also stuck at home quite a bit right now because of a C-section and not having the energy to get out much with everyone. I have found that my kids do better if they have a schedule…we arrange things so that we eat at the same times every day, and they have a regular routine of activities through the day. It gives them a variety of things to do but also gives them the stability as they know what will be happening next, at least roughly. I’m just throwing that out as an idea for your older kids. Ours are getting a little stir crazy these days but the routine does seem to help them be at peace with being home a lot.
Thank you so much for updating the blog every day. It is so encouraging every day to see Nora’s sweet little face and to know that she is doing OK.
These early days will definitely be the hardest on your emotions and stamina, so hang in there. It does get easier & God will continue to strengthen your faith in Him. *** This is very basic, but just in case you are too sleep deprived……Be sure that Nora is well rested and in a good mood around the time of your swallow study. When we went for our swallow study, Lilliana fell asleep on the way to the hospital & it did not go well. When a baby is crying, they will naturally aspirate some liquid into their lungs. Have a good weekend & give Nora a kiss from Lilliana.
It is encouraging that Nora did so well during her walk without the oxygen. Hopefully the swallow study will provide the missing link to the desaturation problem. Many young babies need to be in an upright position when drinking not only to prevent aspiration but it has also been helpful for infants who are prone to ear problems as gravity helps keep liquids from backing up into the sinus cavities. I have known many babies to do better when in the upright position. When my children were young we were encouraged to put them in an upright position for about 30 minutes after they had eaten to help prevent any residual liquid from coming back up.
This is my first time responding to you and I just want you to know that your story has given me many things including a greater appreciation for all of God’s gifts to us. Too often we take for granted the every day occurrences in our lives until it is brought to our attention how precious those things are. Thank you for sharing your story. My grandchildren, (Mackenzie age 9, Peyton age 8 and the twins Braedan and Elijah age 5 love looking at the videos and listening to the updates about your very special daughter. They join me in prayers for her and you that God continue to grant all of you strength and courage to face each day as it comes.
Donna Jean Eno
Hello! I heard about you and your beautiful daughter on face book from a friend who did our family pictures which came out so beautiful. Dear I don’t even know how to start, I am the mother of a beautiful boy with trisomy 18 or I was? We had the blessing to have with us an angel of God in our family for almost six months. We didn’t know anything while I was pregnant about our baby cause he is going to have problems, everything was going good, he was growing fine, my pregnancy was fine till we had him, after he was born they found out cause he is having a heart murmur and few signs which they thought he might have a problem, so the next morning he was transferred to a more specialized hospital for kids and they did all day tests on him, just by Monday we finally find out he has trisomy 18 syndrome and they said its nothing to do about this and we can take him home, so we did take him home on Hospice. We thank God we had no problems with him being home other then eating and not gaining weight, he was for almost six months our new born baby. We loved him so much, he was a special baby, he was an angel. But thru all this time God gave us the peace, His peace and strength to can go day by day and thanking God for him every single day. Also from beginning we prayed to God about this, at first it was a sock but God wanted us to trust Him in any way He is going to work. So, my husband and I talked about it and said God knows what’s best for us, we knew and believed He can heal him or He can take him home. That’s what it kept us going our trust in God and His love for us. He was born on December 16th 2010, his name was Jacob Daniel and he was with us for just 176 days, we loved him so much and we still love “Our little angel” and we can’t wait to see him again. At his funeral we had a brother from our church who was preaching at the grave and the morning before the funeral a voice was telling him to take a paper and pen to right, so he did and it was “Letter for my parents” witch to us in those moments was like taking the pain away. We thank God because He loves as so much and got us closer to Him allowing us to take care of His angel in our family. So I just want to let you know in everything just trust God, we never know why God allows to happened this in our life, He always knows better, but what I know God wants us to be pure gold before we meet Him, so he has ways to work with each one of us. Maybe this was hard for you to read it, but its what God put in my heart for you this very early morning when I got up in the middle of the night thinking of you. I am attaching the letter we received from our angel.
“Letter to my parents”
Mom and dad I want to tell you that I am well.
Here in the presence of Jesus is so much
love. It is true that when I was with you, I felt
love, your tears, beautiful words that you have
said, your arms that kept me with such
tenderness…
You know, although I was only a few days with
you, I come to you with a special message. I
was too young to tell it to you in words, but
through my body I have spoken. God loves you
a lot, and He wanted to love Him more and live
close to Him every day.
I look at you, my dear parents, and I am here
beside Jesus and believe that you have
understood his message. Mom and dad, my
departure should not sadden you, a day will
come when we will meet again in this
wonderful place, then in those moments full of
joy of reviewing, I will be able to tell you with
words how much I love you and how much I
thank you for your love and your care. Even if I
was a few days with you, the intensity of the
emotions and feelings, makes me feel like I
lived a long life among you. Now in closing, I
will gladly kiss you my dear parents and you
my dear sister.
Your son and brother, Jacob Daniel Pop.
MY FACEBOOK MESSED UP YESTERDAY, AND I DID NOT GET MY LITTLE NORA ROSE FIX. FINALLY ABOUT 10 MINUTES AGO I WAS ABLE TO GET ON. I AM SO HAPPY THAT YOU AND NORA HAD SUCH A GREAT WALK, AND THAT SHE DID IT WITHOUT OXYGEN. I LOVE THE PICTURE OF NORA AND HER BIG TEDDY BEAR. THAT IS ONE FOR AN ENLARGEMENT. I WILL BE PRAYING EARNESTLY FOR MONDAY TO GO REALLY SMOOTH, AND THAT THEY GET TO THE BOTTOM OF WHAT TO DO. ALEISA, PLEASE DO NOT EVER QUESTION IF YOU ARE A GOOD MOTHER. I DO BELIEVE THAT YOU ARE ONE OF THE BEST. YOU HAVE REALLY BLESSED ME AND MANY OTHERS BY SHARING YOUR BLOGS EACH DAY. I ALWAYS GO BACK IN THE NEXT DAY AND REREAD YOUR BLOG, PLUS EACH MESSAGE EVERYONE POSTS. IT SEEMS THAT YOU AND YOUR FAMILY HAVE BEEN A BLESSING FOR SO MANY. LITTLE NORA ROSE HAS BROUGHT SO MANY PEOPLE ALL OVER THE WORLD TOGETHER IN A VERY SPECIAL WAY, WITH THE HELP OF HER MOMMY. I THANK YOU AGAIN SO MUCH FOR SHARING YOUR WONDERFUL FAMILY WITH US DAILY. I KNOW GOD IS WALKING BESIDE YOUR FAMILY EACH DAY, AND HE WILL NOT LEAVE YOU. BEFORE I GO TO BED TONIGHT, I WILL CHECK TO SEE IF I CAN GET MY NORA FIX BEFORE RETIRING FOR THE DAY. LOVE AND PRAYERS TO YOUR WHOLE FAMILY.