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!

Busy July!

Well... Eli is soaking up all the attention he can get before his sister arrives! Like every year, we went up to my best friend's lake house for the 4th of July. On the 3rd, Eli got to take his first boat ride and loved it! He enjoyed the day outside and went to sleep perfectly fine. But... Starting at about 11pm on the 3rd he starting coughing and woke himself up at about 2:45am from all the coughing. He couldn't stop coughing and started to struggle with breathing at about 5am, so we ended leaving the lake house early to start heading back home near the hospital. After talking to the pediatrician on call, it sounded like maybe he was just having an allergic reaction to something and needed some breathing treatments. Since it was 4th of July, there were no offices to go to... so if his breathing didn't get better we would have to go to the ER. While it seems to get a little better when we got home, Eli was bad again in the evening, so we ended up in the ER. Thinking we would just get an inhaler/ breathing treatment and head home... We were surprised to find out Eli had a little fluid in his lungs (pneumonia), an ear infection, and tested positive for the common cold! He was/ is the HAPPIEST baby I know with all those things! (They also tested him for Whooping Cough, which thank the Lord he did not have!) Needless to say, we ended up staying in the hospital for a few days.

For about a week he had to take some new medications for his pneumonia & ear infection. We have now added some breathing treatments to his daily routine: CPT 4 times a day, cough assist machine 2 times a day, and a QVAR inhaler 2 times a day. He also has an albuterol inhaler as needed if he has any more cough attacks/ allergic reactions.

very scheduled baby with his treatments & meds

While it's never fun to be in the hospital, this time around was pretty amazing because God is building such an awesome community for us at Lutheran General Hospital. This time around we did not get our favorite ER doctor, but he still stopped by our room to talk to us for 5 minutes and get all the update on Eli. When we were in our room, the next morning I "met" our resident doctor, who is actually a woman we know from the NU football community! (Fun fact - she took our pregnancy announcement photo for Eli after a NU football game.) Some of the nurses at Lutheran are getting to know us and one of the respiratory therapists remembered us from January when she had to do CPT on Eli then! And best of all, our guardian angel, Kathy, stopped by to see us. She was our care service coordinator on our case December - February. She helped us with getting appointments, referrals, and everything once Eli was diagnosed and our life was a little crazy. Annnnnd this week, we found out she's back on our case! She is going to help us not get readmitted and figure all this breathing/ reflux stuff out with Eli. :)

At least he thinks CPT is funny...

dancing at my GI appt

We left the hospital still not fully understanding where all of Eli's mucus, congestion, and coughing is coming from. The best guesses were still reflux, possible allergies, or maybe something in his anatomy is blocked/ not allowing him to breathe properly. Thankfully we were able to answer the last question a few days out of the hospital at Eli's first ENT appointment. Our ENT was able to scope quickly down Eli's nose and throat (which was not very fun for Eli), and saw that everything in his anatomy is perfectly fine! So his best guess is that Eli's reflux is causing all this congestion... Which is also causing his coughing, hiccuping, spit up, and choking. The hope is that if we find a better reflux medication for Eli, all of this should go away. Our pediatrician went to work last week trying to find what that better medication would be, but with Eli's growing team around this reflux issue (pulmonologist, ENT, & GI) and insurance issues... this has been tricky. However, we were able to try a temporary new reflux medication starting last weekend to hold us over until his GI appointment today! And after today, we are feeling much more hopeful as our GI doctor will be taking over all his reflux issues and has many medication ideas for us to try. So as of this upcoming weekend, Eli will be trying another new (his 3rd) reflux medicine! The hope is that this alone will fix all his symptoms, but if not there are other medications we can try to add with it to help.

Eli also had an EEG last week! This was only a one hour EEG that he was supposed to be sleeping for, but putting him in a car for about an hour (to drive down to Christ Hospital where our neurologist is) and expecting him to stay awake is near impossible. Even after pulling over, blasting music, playing all his musical toys, and trying to make him dance... He just fell right to sleep in the car with a smile on his face. So needless to say, he did not sleep during his EEG. However, our neurologist was able to get some results from it. It was not bad or good... NO seizure activity; however, some increased peaks for chances of seizures. His EEG in April showed these peaks as well, but they are more elevated this time around. Because of this, we will not go down anymore on his Keppra and will redo an EEG in September with possibly talking about going up on his Keppra again to help control those peaks... Which should ultimately help him with his development. Our neurologist is a little concerned that Eli is not developing overall more than he has... But also understands that he has had a lot of complications along the way!

EEG hair :)

Praises:

• So many amazing doctors on Eli's team, all trying to figure out what's best for him!
• GI taking over his reflux needs and finding us better options.
• Congestion and spit up are getting better on the 2nd temporary reflux medicine he is on.
• No vomiting for a little over a week!
• Amazing family & friends who serve us so well and love on Eli so much.

Prayers:

• 3rd reflux medication does the trick! Hoping he doesn't need to be on others as well.
• Getting reflux under control so that we can start food by mouth again (this has been on hold since it makes him vomit with the reflux).
• Eli's overall development - his eyesight,  his muscle strength and movement, interaction with his environment, communication, growth, etc.
• Continuing to not have seizures and in the near future getting these spikes under control.
• Preparing for baby sister and Eli's adjustment to her arrival!

“for God gave us a spirit not of fear but of power and love and self-control. Therefore do not be ashamed of the testimony about our Lord, nor of me his prisoner, but share in suffering for the gospel by the power of God, who saved us and called us to a holy calling, not because of our works but because of his own purpose and grace, which he gave us in Christ Jesus before the ages began,” ‭‭2 Timothy‬ ‭1:7-9‬ ‭ESV

If all of this wasn't enough going on... Eli is getting 2 molars! His other 8 teeth have been no problem - just some drool. These have been a little different for him and we are remembering that our happy baby can cry! 2 molars = lots of cuddling and drool. 

Just waiting on sister to arrive...

Had a blast at Levi's 3rd birthday party!

15 months!

Very overdue blog update - thank you for continuing to follow our journey! We appreciate each one of your prayers, thoughts, encouragement, and kind words!

bubble baths for
my cold!

So as our last blog update explained, Eli had a great month of April! Unfortunately the month of May was rough for all of Team P. Eli had probably 2 colds that lingered the entire month of May. With a simple cold for him, comes lots of vomiting and congestion... Which meant I was up 2-4 times each night suctioning out his mouth/ nose to try to prevent vomit! The timing was also rough because Eric was out of town M-F doing a huge solar install for a school district (follow GRNE Solar on social media to see some cool pics and videos!). May of course was also the end of my school year, which is always crazy, and trying to get ready for maternity leave since I won't be returning right away in August. Needless to say, the Petermans did not sleep much in May.

Thankfully at the end of May, Eric and I were able to get away for an early 5 year anniversary trip and babymoon to Bermuda! MorMor and Grumpa took on Eli duty for the week. It was wonderful to sleep again, and I think my mom was thankful to get some sleep once we returned! While Eli was with MorMor and Grumpa, his cold seemed to be getting much better... So we were hopeful for a better June! ...but we were wrong. Our first day back with Eli, he vomited a few times - seemingly out of nowhere. For the next 2 weeks, this pattern continued. Lots of vomiting, big spit ups, congestion, and coughing. However, he was definitely not sick! He's pretty miserable and sleepy when he was sick, but he was happy as can be and would often smile after vomiting. All of this congestion and vomiting unfortunately landed us back in the hospital (for less than 24 hours - praise God!!!) on June 13th. Eli gave us a good scare after choking on mucus and he stopped breathing and turned purple... This kid will always keep us on our toes (even at 8 months pregnant)! This hospital trip as I said was less than 24 hours and a much different feel than our usual visits - since Eli wasn't sick. We were able to meet with several doctors and specifically the pulmonologist who was able to confirm many of our suspicions about his mucus & congestion. With everything that has gone on in June, it definitely seems like Eli's reflux is back (he had it pretty severely as an infant). The extra congestion could be from seasonal allergies or just his muscle weakness preventing him from clearing all his mucus from past colds and reflux. Whatever is going on with him, we left the hospital hopeful that his new medications will help! One med for reflux and one med to dry up his mucus. After 5 days of taking these, we are seeing that they are working! No vomiting for a week :) There is still some lingering congestion and small spit ups here and there, but nothing like what the past month and a half has been for us. I felt like I was doing laundry every day to clean vomit towels, sheets, and clothes...

Last week, Eli had his 6 Month Review for Early Intervention - time flies! If we haven't said it enough already, we LOVE our Early Intervention therapists and they have been such an amazing resource for us in this crazy time. While progress has seemed very slow with Eli's therapies, it was SO nice to have all 6 (yes I said SIX) of his therapists in one room at the same time to discuss the progress that has been made! December to now has seen its many challenges for Eli, but despite all of those, he IS making gains! Here are some of the highlights from our meeting and things we are remembering to celebrate with our little superhero:

• Eli used to always have his hands in fists (best bet to explain this that he does it for a sense of stability/ control), but we are seeing them open more and more... which means he is relaxing more, being more aware of his body, able to grab toys, practice feeding himself, etc. We were beginning to talk about getting him hand braces through Early Intervention to help him keep his hands open, but we are not going to do that anymore!
• Eli is able to stay on tummy time more and more (although new teeth often makes it more fun to chew on his hands than pick up his head)! He used to easily get frustrated after about 10 seconds, but now can just lay on his tummy comfortably and is working on picking his head up for longer periods of time and higher!
  
• At the end of May, we had a very excited Saturday morning when we got some rolls out of Eli! This still doesn't come natural to him when he is on his tummy and needs some reminders of how to roll, but LOVES when he is able to do it on his own... Eli is very proud of himself when he achieves something!
• Eli's Developmental Vision Therapist has been a great resource to the whole team. To many it seems like Eli is still seeing nothing, but his Vision Therapist has assured us that he is seeing some things and using his vision at times! We're learning that the color, distance, and positioning can all affect how we get his visual attention. He is definitely using his other senses as well to help him understand his surrounding - especially his hearing.
  
• Eli's Developmental Therapist is beginning to teach him how to activate his own toys, and when he is able to... again he is so proud!
• Unfortunately his Speech and Nutrition therapies have suffered with all the congestion for the past month and a half... however, Speech is teaching Eli to feed himself with a spoon and he loves it! Again, Eli is very proud when he gets the spoon in his mouth, and he likes to play with the spoon :)
  

On Friday, Eli had his 15 month appointment at which I had to fill out a developmental survey. While I probably could have sobbed as I circled "not at all" for EVERY. SINGLE. ANSWER... I instead laughed my way through it. God has given us a sense of peace about where Eli is right now and how to celebrate the small things. I laughed while filling it out because no test or piece of paper can tell me how special, awesome, loved, and brave our little Eli is. This past month I finished a book called "A Different Beautiful" by Courtney Westlake (highly recommend!!), and in this book she talks about raising her daughter with special needs and what it feels like to fill out the developmental scales... When we assess our children on these standardized tests, "we can never learn to accept and celebrate anything that is outside of our realm of normal. We can never fully appreciate the amazing uniqueness God has placed in this world." (p. 77) We are learning to thank God every day for the amazing uniqueness Eli has brought to this world and we are so excited to watch him find God's purpose for him in this life.

Lastly, if you want to find Eli this summer... He most likely be in our yard enjoying the weather! He LOVES being outside and this swing set and pool have been a nice addition to our yard for him :)

Praises:

1. New medications helping already with his vomiting!
2. Progress in Early Intervention therapies!
3. Me being off for the summer and maternity leave - having lots of time to be with Eli and watch him learn and grow.
4. Eli has become quite a good sleeper - becoming more consistent with naps (and easily falling asleep for naps!) and sleeping 10-11 hours at night... If you knew Eli as a baby, many would have thought these days would never come.

Prayer Requests:

1. Constipation... This has been an on and off an issue for Eli since birth. It got very bad in May - he was in a lot of pain and fussy most of the day because his tummy was bothering him. We unfortunately had to start Miralax (which can be pretty normal with MD and muscle weakness); however,  I would like to try to have him on the least amount of medications as possible! The Miralax worked like a charm and often too well, so we are now trying essential oils and massages to make him more regular. If possible, we'd like to not have to go back to Miralax consistently! 
2. New medications to be the help we need for the congestion and vomiting.
3. Eli to be able to start taking more purees by mouth so that we can lessen his time on the feeding pump.
4. Continuing to build strength and better head control - this is all still pretty dependent on his mood and we'd like to see more consistency in his head control/ strength. 
5. Team P preparing our heart, minds, and home for a new addition next month!

Mother's Day picnic!

Twinning on Father's Day

Aunt Hanna was my nanny for a week in May!

 Visited Aunt Meg & Uncle Nate for a short week! I had a lot of fun and even took my first pool nap!

Found out that my sis may be in the 75%ile!

Met my friend Rory from AZ!

Romans 5: 1-6 "Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. For while we were still weak, at the right time Christ died for the ungodly."

Good Month!

Eli has had a great month! This is the first month in a LONG time that he has not vomited and has been relatively healthy!!! Because of this, we are starting to see amazing gains. Eli is definitely getting stronger and doing better at tummy time. He is also starting to wiggle and move more on the floor. He loves music, bouncing, and dancing! He also LOVES this nice weather we've had... He could live outside if we let him!

Our nutritionist has been a great resource this month helping us with his tummy pains, constipation, and trying new/ more food. As of this week, Eli is officially one of the few 1-year-olds on a DIET! ;) He has been gaining so much weight this month that we don't want to start hurting his other therapies (PT/ OT) or limit his strength/ movement gains. His "diet" will be starting to do more food by mouth for calories and less formula through the G-tube! We are very excited for this change because Eli has been liking taking purees by mouth, and we'd love for him to start to wean off of G-tube feeds.

A few weeks ago, Eli enjoyed his second Easter. It was a wonderful weekend at church and then being with family. Eli got to meet his cousins from out West and loved meeting his younger second cousin, Amelia!

Eli had a 24-hour EEG in the hospital on Monday/ Tuesday this week (4/24-4/25) and it went WELL! He is still seizure free since the beginning of November (the only time he had seizures was the 3 days in the beginning of Nov). Our neurologist was able to compare this EEG to his last EEGs, and he saw progress in that there are more organized patterns and faster patterns than the EEGs before. Eli still has some pattern changes that make him at risk for seizures, but we are NOT looking at an epilepsy disorder and this is something he should grow out of. Because of all this good news, we are starting to lower his last seizure medication... he will do another (shorter) EEG to update on progress after the slow 8 week lowering medication schedule... and then can maybe start looking at removing him completely off of this last medicine. God is good!

Psalms 145: 18-21 "The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desire of those who fear him; he also hears their cry and saves them. The Lord preserves all who love him, but all the wicked he will destroy. My mouth will speak the praise of the Lord and let all flesh bless his holy name forever and ever.