Help the Hamilton Family

Campaign Created by: Ryan Hamilton

The funds from this campaign will be received by RYAN HAMILTON.

Goal: USD $14,000
Raised: USD $ 10,032

Early in July, Savannah started having off and on headaches. After a few days, they developed into fairly debilitating head and neck pain that left her spending much time in bed. 

After almost two weeks of these headaches, the Hamiltons went into urgent care. They quickly found that Savannah also had a fever and was told that it was likely a simple virus and it would go away soon. As the days went on, it became clear that this was more than a simple virus. While Ryan was gone on a work trip, Savannah got worse and went in to the ER with what was suspected as Meningitis. Once in the hospital, Savannah had almost every test possible done to try and figure out what was causing the pain and fever. Ryan landed back in Austin that evening and rushed to the hospital. After a long night, there were still no answers and we were told she would need to stay the night. 

As it stands now, Savannah has been in the hospital for over two weeks and spent the majority of that time in isolation. They expect she will continue to stay at the hospital for at least another week and then be moved to home isolation from there. They do not currently know how long she will need to be in isolation but are looking at around nine months of antibiotics. With her food allergies and Calvin (the Hamilton's puppy) at home things, are complicated, making sure she is taken care of and every need is met. 

Baby Hamilton is happy and healthy. There was some concern about pre-term labor, but they're monitoring baby closely. 

All of this to say, on top of the physical stress, the Hamilton's unfortunately are acquiring a lot of medical bills. We're asking community to please be praying for their family during this time, and if you feel lead, please donate financially; any amount would truly be a blessing to the Hamiltons. 

UPDATES

January Update - A New Year
January 6, 2023
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Hello Sweet friends and family,

I think I wrote an update a month or two ago and forgot to share it. Mom brain? Probably.

We hope you had a peaceful Christmas time and felt the nearness of our Saviour and the sweetness of His grace. 2023 now, can you believe we're here already? We are so ready for a new year, a fresh start, and yet a continuation of what God has been doing in and through us until now.


Our sweet baby boy, he is almost five months now, which is just a surreal miracle. He is smiling and "talking" lots (takes after both his parents). He is still being seen by multiple specialists to ensure his body continues to fight the infection. He is still on anti-fungal medicine. Takes it daily like a total champ. We recently saw his Infectious Disease Doc, who would like an update on tests and procedures on him. This month he will be admitted to the Children's Hospital for another Lumbar puncture, MRI, and multiple labs. We were told it will just be a one-day admittance and we are praying this is the case. They want to get all the tests done and out of the way, but we know it's a lot for our little man to go through at one time. I wish so badly we could say no to the lumbar punctures but we know it is the only way for us to know for sure that the infection has not crossed the blood-brain barrier. So, we trust the Lord with these procedures and entrust Him with the results. We have seen no evidence to make us believe that he has meningitis and pray it remains that way and his medicine is effective in his blood and killing off this infection for good. 

My health has slowly increased. It makes me emotional to think of how I was just a few months ago. I was so weak, over-exhausted, underweight, and struggling to adjust to being a mom while my body recovered not just from a C-section but also continue to fight my infection and heal from the Meningitis. My specialist put me on another leave as I was not ready to return to work, struggling with short-term memory loss, fatigue and physical weakness. I am so grateful for his role in our lives, he truly has been one of the best doctors I have ever had. Since that appointment, I have seen my health and strength improve so much. I had another lumbar puncture done in the fall, and the results were encouraging. My medicine is working and my body working hard to be healthier. The doctor would still like for me to have another LP in the next month or two and see how much more I have improved. When I saw him in December he said that my November appt really worried him, but he was extremely encouraged by my improvement since then. I feel so much more capable as a wife and mother, let alone, just a human. Though tired still, I have a little baby that doesn't sleep through the night yet, and I am able to do so much more than before. We are celebrating the long walks we take without me nearly collapsing in fatigue after. We're celebrating weekend outings that don't lead to being in bed the following day. God has been kind to us. It has not been easy, it's honestly been very hard, especially being away from family. Yet we cannot help but be filled with gratitude for all that God has done thus far and trust that He knows what is ahead of us in this New Year. 

We are actively seeking health this year. Not in a shallow New Year resolution sense of diet fads and gym memberships that will become useless in a month but as an intentional lifestyle pursuit. Whether it's increasing our water intake, avoiding foods that do harm to us or getting more sunshine and fresh air. I can't make my infection disappear. I can't guarantee Jameson will never get a cold, or Ryan's neck won't get sore from his office job. But, we can work at stewarding the bodies God has given us to the best of our abilities. So that's our aim, in wholly surrender to Him of course. 

We covet your prayers for health for all three of us. For our infections to be completely gone. For mental health as we have experienced quite a bit of trauma through all of this and in other areas of our life this past season. For smooth testing and good results for buddy. Peace for lumbar punctures (the anxiety they bring me...). And ultimately for God to be glorified in all of it. 

It has been a hard and scary season, and yet so so sweet just having such a loving, caring, intentional, PRESENT God. If you don't know the hope we have in Jesus, our prayer is that you would come to know the saving power of Jesus, His promises of what is to come and His grace even in the storms. 


Much love to you all. 

Again, thank you for your prayers, and financial support. We cannot express how much it means to us. 




September 29 : A Long Overdue Update
September 29, 2022
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It's been a month since we last updated y'all and a wild month it has been.

Beginning of September we moved from our beloved one-bedroom apartment to a blessing of a rental home, with space for Ryan's office, a guest room for family, and a nursery for JJ once he transitions to his crib. Oh, and a yard for our golden, Calvin! My parents, whom I haven't seen in two years came and flew in for an extended visit. Jameson got discharged from the NICU on September 9th. My symptoms have returned and I am battling painful headaches and neck pains again. Ryan was not given paternity leave from his company so he has been working through all of this while still being SO involved (I struck gold with this guy). Having my parents here has been a gift, they have helped us finish up our move, cooked for us, and held Jameson so we could get some rest or fresh air. They leave next week and I will miss them so much but am so grateful for our time together. 

September 23 we were blessed with a weekend away as a family of three. Jameson's first "Trip" though it was only 1.5h away, it was good to learn how we will travel with a baby. It was such a sweet time to get away, from the boxes we've neglected to unpack, the medical paperwork, and get into the hill country. Unfortunately, we all came home with colds.

September 24th was Jameson's due date. It felt surreal to think that he would have still been in my womb until around then. Life would have looked so different these past 6 weeks, but we know God is sovereign and He allowed things to play out the way they did. And we are just so grateful to have our little buddy around - we are obsessed with him! 

September 27th was my birthday. Ryan and I both took a moment to be grateful I'm still here, that I didn't have bacterial meningitis, and that we went with our gut and sought medical care. I am 28 now and though I have always been one to not really have a plan and "play it by ear", now more than ever, I feel like life is unpredictable and what's most important is to stay rooted in faith, be diligent in the word, fervent in prayer and care for our neighbors. Not to neglect the making of plans by any means, but hold plans and expectations loosely. I'm grateful to be here. Though some of my symptoms have returned, and my capacity is much lower than it once was, I am grateful to be here. A believer, a wife, a mother, and so many other things. 

 Ryan and I saw my ID doctor a few weeks ago, and he has ordered another lumbar puncture(😭) for me to see how the medication has been fighting the infection. When we mentioned the return of my symptoms, he said I can expect this for the next year but the lumbar puncture may help relieve some pressure in my neck and head by draining some fluid. (I would love your prayers for this procedure, I hate it and it feels traumatizing every time, especially when you have to sign off each time that you understand the risks of paralyzation etc.). Though a year sounds like a long time to be in pain, it gives us a bit of a timeline to work with, though we hold it with open hands and pray it be sooner and not longer. My brain is a lot slower than it once was, I more often miss jokes, lose my train of thought, get overwhelmed with sounds and lose focus during conversations. Being a people person this has been hard for me, as I know it comes across as rude. So if you are local to us or we Facetime and any of this happens while we're talking know it's not intentional.  

With my parents leaving soon, we are learning how to do this whole parent thing without the extra hands. When we got James home, we realized there were a lot of things we needed that we didn't even think of or just hadn't gotten yet. The baby industry is hard, I never wanted to have a million unnecessary gadgets and toys for my baby but we learned quickly that some of those things are a necessity, either for him or our sanity. I know every family and child is different but if you have kids and had things that you consider a must for your babies please let us know. Other than that we're still navigating all our follow appointments, Nephrology, Infectious Disease, Pediatrician, etc., and waiting for all the bills to come in still. We will be seeing the Pediatric Infectious Disease for Jameson next week and are praying for a good report.

I think that covers most of September. Friends, family, we are so grateful for your love, prayers, and financial and emotional support. Keep it coming we are home but we're not out of the woods yet. We would not have made it through this season without y'all and your prayers. 

August 26: Some Good News
August 27, 2022
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How about some good news for a Friday.

Yesterday, we met with one of the Pediatric Infectious Disease Doctors (Jameson has a team of three) who gave us good news! Though they found antigens of Coxy in his blood, his spinal test came back negative! Which means the infection has not cross the blood brain barrier, as it has for me! They will continue to do regular tests on him, including another (if not multiple) lumbar puncture to make sure if anything changes they are aware. 

So what does this mean? Well Jameson has Coccidiodalmycosis and not Meningitis. The ID doctor said he'll have to be on the anti-fungal meds for at least a year, but potentially longer. She apologized saying she understands that's a long time, both Ry and I laughed with sighs of relief. 1-4 years feels much more doable and like nothing compared to my lifelong diagnosis. This felt like real good news to us and we pray it stays out of his brain. 

Today, his NICU doc (whom we are so grateful for), notified us that us calcium levels are back to a healthy level(!!) and his nurse had fed him 1.5x his normal feed amount all by bottle without needing his feeding tube. So they are taking him off the diarrhetic and lowering his IV fluid that they had put him on to flush out the calcium, and then increasing his feed amounts. They’ll monitor his levels in making these changes and if his calcium levels stay normal, they will switch him back to the fluconazole (anti-fungal med) and monitor that transition as well. If all is well and levels stay in good range, and he can do his feeds solely by bottle (with a bit of nursing here and there) then he can be discharged as long as no other complications arise. 


I asked the doc if he has a timeline in mind, and he said maybe a week but also its hard to know as in his 20+ years as a NICU doctor he has never had a baby with Coxy so this is all new to him as well. As much as I want him home, we move next week, and it would be oh so lovely to be moved into our new place and bring him home to a nursery and some peace, instead of a moving mess but we trust the Lord’s timing in that. We have learned to take each day as they come as things change so quickly.

All in all we feel encouraged. Still heartbroken my infection passed onto him but so grateful for some of the news we have received. 

Things to continue to pray for:

- The infection would stay out of his brain

- Jameson’s calcium levels stay in a healthy range

- He is able to take a full feeding on the bottle

- Jameson handles the fluconazole well

- Continued wisdom for the doctors to know how to treat and care for him.

- Strength for Ryan and I amidst all the transition, appointments, follow ups and needs to be met.

- The medication would continue to fight the infection in my brain and that it would have no impact on me and symptoms would not return.

Things to Praise God for!!!

- His lumbar puncture tests came back negative for infection!!!!

- His calcium levels have dropped significantly in the last several days

- He’s gaining weight! (Even though it’s just grams, I think his cheeks are getting chubbier)

- God has provided us a house to move into 

- The incredible doctors both NICU and Infectious Disease that we have had

- Jameson may be coming home soon <3 


Jameson's ID docs are having a meeting together on Monday so we will have more updates I'm sure next week, if not sooner. 

We are SO appreciative of your prayers. I'm sure we've missed repsonding to many messages just know we read them and treasure the prayers and encouragement SO much. 

Love you all! 

August 24: Results We Didn't Want
August 25, 2022
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I'm rocking Jameson in my arms while he sleeps so peacefully, he has no idea of the chaos that surrounds him. Constant beeping from monitors, cords and tubes head to toe, and doctors giving news we didn't want to hear.

Our sweet boy. He is doing so well in all the things you'd hope for in a newborn. He's getting the hang of nursing, gaining weight, regulating his own temperature and yet we got confirmation today of what we've been praying against. Jameson's blood has presented Coccidioidal cells. They also received the results back on the placenta, which also was positive for Coxy. The doctor said he would need to be on the anti-fungal medication for months, probably years. They don't know if he has meningtis as the spinal test results haven't come in yet but he hasn't presented symptoms so that gives us a bit of hope. A large portion of people who have coccidioidal are asymptomatic, and we are praying that this is the case for our little man. 

This diagnosis in a newborn is so rare, the NICU doctor that relayed the test results didn't have many answers to questions we had. Tomorrow morning we hope to speak to the Pediatric infections disease doctor and understand in more depth what this means, and what it means for Jameson's future. 

In all honesty, I have felt cheated. When I was in antepartum and recieving my diagnosis, we were told multiple times by several doctors that there was little chance the infection would pass on to baby. To be here now and hear these results feels heartbreaking and so frustrating that we weren't prepared for this. Yet, as I have been meditating on Psalm 139, that God knit our little peanut together in my womb, God is not unprepared for this. He knew and allowed this. We don't understand why, and maybe never will. We certainly have to process and grieve that Jameson is recieving the same news I recieved just weeks ago, we know God is involved and sovereign. We're walking so blindly but have so much reason to entrust our baby to Him. 

For now we'll keep visiting our boy in the Nicu, snuggling him when we can and praying that God gives us a miracle, that we can bring him home soon and fully enter into parenthood, and that we can lean on Him for strength when we feel so weak. 

I cannot say thank you enough to each of you who have been there for us, prayed for us, offerred to help us move (did i mention we're moving in the middle of all of this),giving towards our needs and bills, driving me to the hospital to see little man while Ry's at work, taking care of Calvin. We're so humbled. Y'all have given us space for moments of relief, moments of normalcy, moments of respite and we are so grateful for that. 

We'll give update when we hear more from the infectious disease doctor hopefully tomorrow.

Please continue to join us in prayer for our little guy.


xoxo 

August 20: Tests and More Tests
August 21, 2022
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We were originally told that there was almost no chance that my infection would be passed to the baby as it was in my spinal fluid. However, since Jameson was born we have been informed that there have been cases where this has happened. So though Jameson’s vitals are stable, they have gotten infectious disease pediatrics involved and begun testing him for Coccidioidal. This includes heart ultrasounds, blood tests, an autopsy on the placenta and unfortunately a lumbar puncture. (After having two, I’m so grateful he’s too young to remember any of it). His spinal fluid is to going UC Davis and the placenta is going to the University of Washington for testing. We know from my experience with testing, the results take a while to come in. In the meantime to be precautionary they have put him on fluconazole which is the same medication I have to take for Coxy. 

I was discharged on Thursday, and he was looking good. He was making strides and surprising all the nurses. He was off his CPAP and breathing on his own by day two, regulating his own temperature, no more IV and the feeding tube was moved from his mouth to his nose. We were able to bottle feed him and try nursing (his preemie coordination is still getting the hang of it). Things were looking really well and it sounded like he could be discharged by the end of next week. However, later in the day on Thursday I received a call from the NICU that his calcium levels were high and a cause for concern. More labs and tests were immediately ordered. 

Trying to figure out what is causing the high calcium levels, the doctors decided to put him back on IV fluids to try and flush out his kidneys and the extra calcium. They are curious if it is the fluconazole upping his levels so they have switched him to another anti-fungal that’s often used on Coxy, Amphotericin. This drug must be given intravenously. If they see improvement with the switch of meds and come to the conclusion that it was the fluconazole causing his high calcium levels, they will have to keep him in the NICU longer to be able to administer this other drug. They are fairly certain that if it is fluconazole, I won’t have to change my treatment as not enough would be transmitted through breast milk to cause issues. 

We are praying that his levels go down and that I have not passed the infection onto him. Please join us in prayer over these things.

Please also pray for us, we’re tired. Our adrenaline has worn off, it’s been a long month and a half, and everyday feels like there’s a new hill or mountain to climb. Yet, we still see God’s faithfulness, His provision, and know He is near. We know we need Him, every day and every hour. 

Thank you so much to everyone who has prayed, given, watched our dog, cleaned our apartment, checked in with us, let us weep over the hard and rejoice over the small victories. We feel like we truly have a village behind us. We have been humbled in learning to ask for help without feeling like a burden to others. God truly created us for community and so many of you have shown us that gift. One thing we have been asked about frequently is a meal train. Due to Savannah's severe food allergies having others bring us food is simply not on the table. However, we have set up a meal fund in our baby registry to help with the cost of groceries. If helping with food is something you have been wanting more information on feel free to head over to our registry to learn more. 

We also do not have many of the things we were hoping to have by the time our little peanut came along. We will be updating our registry shortly to better reflect the fact that we have a boy (yay!) and that we have a premié. Feel free to take a look and give if you feel called (or can't resist buying cute baby things 😍). 
https://www.babylist.com/ourbabyhamilton

August 14: Oh, Baby!
August 21, 2022
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August 14 (34 Weeks Pregnant)

Around 5:30/6am I woke up Ry and said, “you can keep sleeping a little longer but I think we need to go in”. All night I had been having contractions but uncertain if they were Braxton hicks or not as they were inconsistent and not that intense until early morning. Ry got up and we both hurried to pack hospital bags as we were not expecting me to go into labor for several more weeks. By the time we left the apartment the contractions were intense and only several minutes apart. 

We check into labor and delivery and got hooked up to the nst monitor. The nurse came in a few minutes later saying I was definitely having contractions and baby looked fine. The doc ended up coming in ten minutes later saying baby’s heart rate had dropped multiple times and that we needed to go into delivery that day. I clarified he meant c section. We had planned and hoped to do an unmedicated birth so I cried as the doctor told us we’d be in surgery in 45 minutes. 


The c-section went smoothly, and out came our sweet baby, Ryan announced the gender to the room. A boy! We had felt it was a boy for most of my pregnancy and had struggled to agree on any girl names but had a boy name picked out from when we were first married. 

Jameson Baker Hamilton

Born at 11:11am on August 14th. 4lbs 6oz and 17inches long. 

They showed us our sweet boy and immediately had him in the nurse's hands, no skin to skin, no holding him.  They cleaned him, checked his airways, etc. They finished stitching me up and by this time Jameson was swaddled and on a CPAP machine. They let us hold him for a brief moment before whisking him off to the NICU. Ryan went with them and I went to Recovery.


Ryan was able to be with him for an hour or so before rejoining me. I didn’t see Jameson for nine hours after he was born. It’s so surreal to become a parent but not see your child. When we were able to see him again he was in the incubator with CPAP, IV and feeding tubes. He was stable but 34 weeks and needing to develop more. I was exhausted after a night of no sleep, surgery and the rush of all that happened so quickly. Ryan was such a champ, as he has been this whole time. 


After the smoke had cleared and Jameson and I were both stable we came to find out that during the c section they discovered the placenta was partially detached, which can become fatal for baby. God doesn’t always show us why He allows things to happen the way they do but when he does it is so clear what he is doing. Though a c-section was not our plan, Jameson was born in the perfect timing. And, in the perfect way, the Infectious Disease doctor told us there is less of a chance of transmission of my infection via c-section than vaginal birth, which we did not prior to having him. 

God’s hand has been all over us and this sweet boy's life. 

August 4 : Discharged and Cryptococcal Meningitis
August 6, 2022
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Savannah:

We had been told by the infectious disease doctor when he diagnosed me that I should be able to go home Thursday. They just wanted to observe for a few days how my body was receiving the meds. With this meningitis, I'm not considered at risk of being contagious so I don't have to be in isolation and that makes outpatient care a lot easier. But after everything happened with baby and I the days following we figured the OB would probably want to keep monitoring us and keep us longer. Thursday morning the doc came in and said I get to go home. So I texted Ryan and as soon as he finished his meeting he was at the hospital packing up my things and excited to take me home. But what does it look like now that I'm home? What even is Cryptococcal Meningitis?

Cryptococcal Meningitis

A type of fungal meningitis that is extremely common in the desert states (Southern California, AZ, New Mexico, Nevada and West Texas) you get it by breathing in dust that contains the fungus. Last year Ryan and I went on multiple road trips camping through these states, off-roading most evenings to find a spot to camp. It is very likely I got it in my lungs then and it moved to my spinal fluid. They strongly believe that my pregnant state is what activated things in my body. 50% of people in Albuquerque have been exposed however it doesn’t become serious. Unfortunately, that’s not the case for me. 

My head aches and stiff painful neck were strong evidence for Meningitis. There are other types of meningitis that are much more dangerous and severe and need to be treated immediately or else it can be fatal. However, fungal meningitis if treated properly is not as damaging. 

Because the infection is in my spinal fluid it does not pass through the placenta to baby, and that is a sweet gift. 

The treatment for Coxy is unfortunately life long. I will be on a common drug in a high dose (but its safe so it’s not even close to the threshold of what is a dangerous amount to take) for one year and then after a year we will cut the dose in half and I will take that daily for life. 

Getting news that you have a lifelong diagnosis is not fun, we were actually hoping my TB test would come back positive because we didn’t want this to be the outcome. However, we know God knows what’s happening and none of this comes as a surprise to Him. There are other hardships that come with this diagnosis and treatment that I won’t get into now but were hard pills to swallow. But we are trying not to borrow worries from tomorrow. God has been with us each step of the way, and He’s not leaving us now. 

As for now, I am still in pain, my headache is still there, I still have been fevering and have been told to continue to rest. I’m not sure when I will be able to return to work or when the meds will start taking affect and I notice a difference. I have to continue follow up with the infectious doctors, get weekly labs done and of course take the anti-fungal medication daily. 

I’m sure y’all have many questions, and trust me, we do to do. We are still wrapping our minds around it, researching coxy and cases around the world, and asking doctors for as much info as they can give. I am a rare case as I am pregnant and there are no studies done on pregnant women with Coxy just anecdotal evidence for things. 

Please continue to pray for healing over my body, that baby would stay safe, and that the doctors and ourselves would have wisdom moving forward. 

August 3 - Tough Day
August 6, 2022
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Savannah:

The day started out bright and early with the nurse from labs coming to take my blood. This was to help rule out any infections as the night before my temperature had dropped significantly. They needed blood cultures and so they had to draw blood from both arms. Unfortunately, one arm had an IV in it and the nurse had to draw blood from my hand. She could not find a vein and had to try in my hand multiple times. I don't do well with needles or blood and so that was a rough start to the day.

Later that morning I was sent to the optometrist for an eye exam and had my pupils dilated. 

In the afternoon the nurses decided my IV line should be swapped for a new one as I had been there for a while already. My nurse tried two or three places and had no luck. So she called in another nurse and she also had no luck. So they called the Picc Line nurse to come in and use the ultrasound to find a spot. By this point, I think I had been poked six times. The Picc nurse came in and tried two spots and again, no luck. By now I am not doing well and the nurse assumed it was her machine so she gave me a break and went to get a new machine. While she was gone I was called in for a second MRI. The first one I had was 30 minutes and thankfully this one was only 8. 

After the MRI, the PICC line nurse returned with a machine and got it first try, I almost cried I was so relieved. It was such a long day with too many needles but thankfully all the tests eventually came back negative for infection. The belief is just that the Coxy meds are working and my body is responding to it. 

August 1 - Diagnosis
August 3, 2022
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Savannah had a second Lumbar Puncture and had her diagnosis confirmed, Cryptococcal Meningitis. Also sometimes referred to as Coxy. They immediately wanted to get her on treatment meds. Though it's not the diagnosis was not what they wanted, they are grateful for an answer to why Savannah has been feeling this way and knowing relief is on its way. 

Later that day, Baby's heart rate dropped the nurses immediately had her on oxygen and an IV.  After a few minutes, the heart rate went back up to normal. She also had her cervix checked to ensure she wasn't going into labor. Thankfully, she had not dilated at all but they kept her on the monitor all night to make sure baby's heart rate stayed normal and contractions didn't get too intense or painful. 

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