Georgia 10 months

Our sweet Georgia Peach 10 months looks good on you.  Today July 10th is Airway Disorder awareness day. We have come so far and yet we still have so far to go. Half your life ago we were in the Pediatric ICU at Primary Children’s Hospital. You were getting your first and second of five chest tubes. Up till that point in your hospital stay you didn’t even have an IV.  The next two weeks in the hospital were by far the worst days of my life. But in that time I also saw the depth of your strength. I saw many miracles. Your life hanging by a thread.

You were pulled from the slippery slope of… dare I say it… Death. More than once. More than twice. Looking back I thank Heavens that I just happened to not be there the two times that it got really bad. Being able to imagine it is bad enough. The monitors alarming, your skin changing color, the nurse yells “Code Blue”, blue lights flashing, emergency PICU team flooding the room. Chest compressions. Bagging your breaths. Watching the monitor. Sixty long seconds. They did it. You came back. The second time it was a similar story but 90 seconds of compressions. And again you came back.

They watched you so closely. Every beep and blip we watched. Many other times you nearly coded but because they watched you so closely they were able to stop these episodes before they became “codes”. Again and again you came back. You chose to fight, you chose stay. I know it was your choice. You have communicated your needs to me so very clearly from the beginning and I have been your advocate. In order for you to come home from the hospital I learned how to place an NG tube so you could be fed. After one week at home you pulled it out! You came home with a serious addiction to morphine and I made medication charts set alarms on my phone and slowly weaned you off, took you to appointments and tried my best to keep up with everything.

Because you spent the first 5 months of your life fighting to breathe you missed a lot of physical development milestones. You started home therapies. The best speech, occupational and physical therapist came to our home weekly to teach us how to help you. And every day we worked with you to get your strength back.

When you went into the hospital you were exclusively breastfed. When you left the hospital you were 75% NG tube fed and 25% bottle fed. No more nursing. That was a hard pill for me to swallow. You are my last baby. I was planning on nursing you for years. Especially after how sick you were I just wanted to hold you close and nurse you. Helping us both heal emotionally and physically. But that was not in the plans for you. Not only was nursing too exhausting for you we discovered at your one month follow up appointment that even with all the progress you had made you still didn’t swallow safely. You aspirated everytime you ate. From that time on every bottle you drink has been “nectar thick”. This helps you to swallow the right way.

As months went on we expected things to clear up and for you to grow out of these issues. I noticed that you were constantly congested and for several months we tried allergy medicine, sinus sprays, and suction with no relief. You got bloody mucus poops, after many tries we eventually landed on a special order amino acid based formula. You continue to get rattle in your chest multiple times a day, and have had various signs that there is some issues with your breathing. For those reasons the doctors told us it was safest for you to hold of on introducing foods until things settle down.

After consulting the pediatrician we got you back into the ENT at primary children’s hospital. He did an endoscopy and found that your Adenoids were a 75% obstruction in your sinuses. He also didn’t like the way you sounded when were crying. Based on all the information we gave him He had us meet with all the specialist from the Esophageal and airway clinic. A plan was made for an Adenoidectomy, a bronchoscopy with bronchial lavage and an gastrointestinal scope with biopsy.

So in 10 days on July 20th (one day shy of 6 months from when you were first admitted) we will head up to Primaries early in the morning for these procedures. I will once again watch them roll you away and trust their exceptional skill. We will wait in that all too familiar surgical waiting room, this time thankfully your life will not be in such jeopardy. We hope to solve some of these problems and get a clear path to your optimal health. I really hope that this will enable you to swallow safely so you can eat more than only thick formula and just breathe easier.

You are incredibly strong and I have every confidence that it will be hard but you will recover from this. You’ve done it before. You will continue to shine your beautiful light giving proof of God’s Miracles. Your strength and perseverance through hard things is nothing short of inspiring. Thank you for choosing us, choosing to stay even though it’s hard. I know that God has a plan for you and I can’t wait to see what great things you will do. I will continue to do everything in my power to get you there.