Where did August go?

Between welcoming Ava Grace Peterman in to the world and caring for a miserable and sick Eli, Eric and I really don't know where August went! We're thankful it's September and praying for a better month ahead of us...

Ava Grace was induced on July 25th and arrived at 4:45pm at 7lb 3oz and 21.5 inches. Eli took a liking to her right away and laughed at her cry every time he heard it in the hospital. Coming home from the hospital, we were so fortunate to have such amazing family support to help us transition to a family of 4 and try to get some sleep. The first few weeks were really difficult because Eli would scream cry in pain a lot of the day... The biggest cause was probably his molars, but he was continuing to struggle with constipation and reflux. In the beginning of August, his constipation was very bad, which makes his reflux worse.

The new, 3rd drug we tried in July for reflux wasn't completely working for Eli (and not covered by insurance) - so we went back to a drug we tried previously for a week that seemed to work. We originally went off of it because it's complicated to administer, but after a long few weeks with Eli - we were willing to try anything to help him! A few days before starting back on this drug, Eli starting coughing a lot again... Which was beginning to remind us of earlier this summer with his reflux - first coughing, then vomiting. We were hopeful switching back to this old medication would help, but the cough just lingered and then got worse.

cuddles at the pulm office

We are SO thankful that we have an Outpatient Care Manager, Kathy, who helps us with everything!!! During the crazy month of August, I was probably on the phone with her or texting her every day about Eli's condition and updates. She helps us keep in contact with his specialist doctors and kept everyone in the loop about Eli so that his doctors could all agree on a plan of attack. Eli was seen by his pediatrician and his pulmonologist after his cough started, and all kept saying his lungs sounded good and hopefully it was a good sign that he was trying to cough something out. About a week and a half after his cough started, he started to cough up mucus... then started to vomit. While these things are manageable, with Eli's summer history there is a big worry about choking and aspirating. All not fun things to be constantly watching for and trying to care for a newborn!

On 8/24, Eli had been vomiting all day, but stayed relatively happy. However, in the evening, his behavior drastically changed and he couldn't stay awake after vomiting in the bath - so Eric brought him to the ER. It was SO difficult to not be there with him 24/7 like I am used to, but Ava could not be at the hospital and I needed to be with her. Being a mom of 2 is hard and emotional! As we've come to know, they said they would keep Eli for at least the night to monitor. Our same favorite ER doctor took care of Eli and ran a bunch of tests on him. Based on a very high blood test (lipase) and another slightly elevated blood test, it is very likely Eli had pancreatitis. He also tested positive for 3 cold-like viruses. All these things on top of his reflux, made it very difficult for him to keep down his g-tube feeds. During Eli's stay we had to run his feeds continuously (which means at a very slow rate and that he is always hooked up to his feeding machine). Even at this and only taking pedialtye, Eli was still vomiting after cough attacks. Eli finally got to come home on 8/31 (a week later), but not anywhere near his normal health or schedule. Eli is hooked up to his feeding machine 20 hours a day and still not taking his full strength formula (and is still having small vomits). He is also continuing lots of breathing treatments 3 times a day - albuterol, CPT, cough assist machine, and QVAR inhaler! It will be a long road ahead of us to get him back to his normal feeding schedule, not being hooked up to the machine most of the day, and for his cough & vomiting to go away. BUT he is HOME. Praise the Lord!

running outta here in my dreams

During Eli's hospital stay, we cranked out another EEG. During his hospital stay he had some uncontrollable leg shaking, so it's always good to have an updated EEG. Still no seizures - praise the Lord! And based on the results, our neurologist has decided to keep his Keppra doses the same and not go up... more good news.

Prior to Eli's hospitalization, we met with a outpatient nutritionist to talk about new options for Eli's feeds. Right now, he is taking toddler formula; however, reflux can be controlled by diet... So we wanted to talk about real food blends for g-tube fed children. After meeting with the nutritionist, I learned there are few options and we settled on a plan for one of the brands and mapped out what Eli's new day would look like for feeds. This made me very excited and hopeful because we'd be giving Eli real food blended in to drink form! Much more natural for him and better for his GI track developmentally. Unfortunately we got our delivery from home health of these real food blends the day we went to the hospital, so we have not been able to try them yet. Once we can get Eli back to his normal feeding schedule and have no vomiting, then we can try this new plan. We hope that this can also help with his reflux along with his new medication regimen. If we cannot get his reflux under control, we may have to look at a permanent surgery of moving his g-tube to a j-tube. We are not here yet, and praying we don't have to do this in the near future. However, we also don't want to see him in pain and vomiting any longer.

“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. Or which one of you, if his son asks him for bread, will give him a stone? Or if he asks for a fish, will give him a serpent? If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!" 
Matthew 7:7-11 ESV

Praises:

• Being home and back together as a family of 4!
• Amazing family & friends who serve us so well and love on Eli so much. Special shout out to our moms and Auntie Callie who watched either Ava at home or Eli at the hospital for me while Eric was out of town! We literally couldn't have survived these past couple weeks without our family or friends!
• No seizures and keeping his medication the same
• Kathy - our outpatient care manager - for all of her help and support... there are just too many things to list. She truly is a gift from God!
• Ava! She is such a sweet baby and an amazing sleeper - thank you Lord!

Prayers:

• Getting rid of his cough and vomiting to subside
• Getting back to his normal feeding schedule and being hooked up to his machine less
• Breaking his last molar... These things have been MISERABLE for him! Heartbreaking to watch him cry so much.
• Getting to try his new real food blends in the g-tube, and this & his current reflux medications being enough to control his reflux
• Eli's overall development - his eyesight,  his muscle strength and movement, interaction with his environment, communication, growth, etc.

dino nurse!

first haircut! bye curls!