Tori did very well today. The total time from when they took her back to do the IV and the time we left the hospital was about three hours. Thankfully … Continue reading MRI is completed…now we wait again.
Jesus – As I sit and rock this precious baby, I am reminded of all you have done in our lives to bring us to this moment. You brought me … Continue reading A Mama’s Prayer…
On Monday morning, we got up early so that we were ready to go if we had any chance to get her into the neurologist early. I called the office right at 8:00am only to find out that they did not have any pediatric neurosurgeons or neurologists in on Mondays, but the scheduler said that she would have the Physician’s Assistant look at the CT scan and call me if she could provide insight.
She called me an hour or so later and told me that she sees enlarged ventricles which have produced extra fluid around the brain.
The original theory by the pediatrician and the thing the ER doctors said wasn’t there.
Remember that we went to the ER because she wasn’t eating well that day and because the pediatrician suspected fluid.
When the doctor came back with the ct scan results we specifically asked if it showed fluid. She said no. She kept saying “brain abnormalities” and we respected her honesty about not being a neurological expert. But we left freaked out.
The PA said that we would obviously learn more tomorrow, but that we shouldn’t be too worried at this point because it seems like it will be easily treated.
We felt relieved, angry, worried that they were wrong, annoyed that we have been so freaked out that our baby was going to be permanently affected, and yet hopeful that she is going to be just fine, all at once.
We didn’t post about it yesterday because it wasn’t conclusive and it wasn’t the neurologist who told us that information. We didn’t want to give false information only to retract it. We apologize for not saying anything but we thought it was best.
Our pediatrician personally called us to get an update and was so relieved to hear what the PA said. I had called earlier in the morning to let them know about the “brain abnormalities” comment so he was concerned enough to call us himself. He said he hopes they will treat it ASAP because that is what is best for Tori.
That brings us up to today.
The neurologist said that there is extra fluid in and around the brain and that the ventricles are enlarged. He said that this normally doesn’t affect development so he thinks something else may be going on.
He worked his magic and got us an MRI appointment for tomorrow at 3:00pm. He was prepared to admit us to the hospital so that they would have to do the MRI overnight. But they managed to rush it.
The doctor said he would try to read the MRI and get back to us by tomorrow evening.
So we wait again, and we still don’t have complete answers, but we have progress.
Update: they just called and moved the MRI up to 10am tomorrow.
Thank you all for your prayers! Please keep praying.
We are praying fervently that the neurologist/neurosurgeon will call us in the morning and tell us to come right in. I’m sure it wouldn’t be detrimental to wait until our … Continue reading Praying for tomorrow…
We potentially still have 72 hours until we see the neurologist unless they can squeeze us in on Monday. Enough people are praying for that to be the case, so … Continue reading Hurry Up and Wait…
Tori didn’t eat very much today, so I called the pediatrician around 2:30pm to ask what we should do. Given the concerns about her head, he advised us to go … Continue reading A Small Update…
This is likely going to be long, but it is mostly for our benefit anyway because I want to remember everything that has happened thus far in case we need to recount it later.
The first five months of Tori’s life were so joyful, despite her hatred of sleep for the first three months and my accompanying sleep deprivation. She was rarely fussy – only when super tired – and she smiled and talked all the time. She was meeting and even exceeding expectations in terms of milestones. I posted photos and videos frequently because she just kept getting cuter and cuter.
In the middle of January I began to notice a change in her demeanor. She was extra fussy and had gone back to not sleeping much at all. She was clingy and I couldn’t put her down for more than a couple of minutes, if that. She had also started to have “volcanoes” again after eating – where she would throw everything back up all over me.
I was admittedly frustrated with it all because I couldn’t shower, cook, eat, or anything else without her crying because I wasn’t holding her. I didn’t think about the possibility that she wasn’t feeling well. This has been my first experience with feeling “mommy guilt” because I had no idea that she was not feeling well.
There are ranges for each milestone and I hadn’t worried about the fact that she wasn’t even trying to meet some of them yet. But when I started to see friends post photos and videos of their babies, close in age to Tori and some younger than her, achieving milestones that she hadn’t yet even attempted, I started to wonder.
One day I realized that I hadn’t seen her smile or heard her talk in about two weeks. I joked with Brennan that we must not be funny anymore because she just wasn’t laughing or smiling.
I looked back through my videos and the last one of her talking and smiling was on December 29th. I read online that babies will often stop talking when they are working on another milestone or when teething, so I didn’t think much about it during those two weeks. But, combined with her other behavior changes, it was time to call the doctor.
Brennan and I had just been talking about how she felt heavier and we were so thrilled to see her growing since she had been so petite thus far. So, when the nurse came to weigh her at our appointment and she had only gained two ounces the month prior, I started to be afraid. My five month old only weighed 11lbs 9 oz.
The doctor reweighed her to verify the unbelievable number on the scale, and it was accurate. He did the rest of the measurements and found that her head had continued to grow – meaning that her brain was getting the nutrients it needed – even though the body growth had slowed. Her body was now in the 2nd percentile and her head was in the 97th.
As I described her behavior and symptoms, he suggested that we try reflux medicine as everything pointed to an acid reflux issue. It appeared that she was only eating enough to get the hunger pains to go away, explaining the lack of weight gain and her frequent feedings. It also explained the rest of the behavior changes so well.
He wrote a prescription for baby Zantac. He said it could take 7- 10 days to take effect and up to two weeks to see a change in behavior. He said if the meds didn’t work, he wanted to have an MRI of her head done to address the lack of development and the regression of talking and smiling.
I left the appointment feeling encouraged because the diagnosis made sense, but I still had doubts and found myself worrying that something else was wrong.
The next day, she had an upper G.I. study at the hospital and everything looked good.
I am not a worrier or a fearful person at all. But, around day 7 of the medicine, with no changes or improvement in behavior, fear began to take over. My brain kept thinking about the what-ifs, the worst possible scenarios. I found myself in tears at one point thinking about losing her to whatever this could be. I had to pray and pray to fight the fearful thoughts in my mind.
One thing that has surprised me about motherhood is the depth of my emotions in regards to and love for Tori. It has driven me to prayer more than anything ever has. I combatted the fear with prayer and with truth – that God is sovereign and in control – but also knew I needed to take action.
Around day 8, I really started to question the effectiveness of the medicine because she still seemed to be miserable. I also continued to sense that something more was going on. But, since she was sleeping a bit better and had been slightly less fussy since we started the meds, I waited it out.
By day 13, I knew I had to make another appointment because she seemed to be in real pain now, and the sound of her cry had changed. She was also waking up with a cry that sounded like she was either having a nightmare or in extreme pain.
This brings us to yesterday. I took her in to the doctor and she was crying when the doctor came into the room.
As he listened to her, he said she definitely was in pain. He did her measurements again and found that she had only gained an ounce in two weeks, despite the fact that we had started to introduce solid food at his suggestion.
After listening to my observations and listening to Tori, he is now convinced that she is indeed in pain, and he thinks that it’s from migraine-like headaches that are possibly being caused from fluid on the skull. This would explain her getting mad and then throwing up, too, because she is feeling nauseated. And who wants to learn or try new things with a migraine?
The doctor said that this all makes sense with the jump in her head size that happened at two months. We had an ultrasound of her head then to check the fluid levels and everything was fine.
He also said that there is part of her soft spot that is a strange shape which usually indicates a fluid issue. He said this doesn’t normally show up until 6 to 9 months, which would explain this so suddenly occurring as well. He said this would also explain not eating very much because she’s in pain, as well as missing the milestones lately.
We have an appointment with a neuroscientist on Tuesday to hopefully get an MRI – for which she will have to be sedated. This is our way of getting around the ridiculous wait time to have one done at Hershey Med (May 6!).
I didn’t think to ask what the next step would be if the doctor is right, which I now think was wise. I have stayed away from Google and refuse to look this up. I am not thinking about anything except for bringing comfort to Tori as we wait.
I feel so much more at peace now, even though I should probably be freaking out. I am so thankful for the Holy Spirit nudging me and helping me see that I needed to pursue testing and treatment for her. Of course, once we know the results and the course of action to be taken, I may freak out. But, for now, “it is well with my soul.”
We are choosing to trust God in all of this and praying for relief for our precious baby. We know that she is being prayed for by hundreds of people and we feel so supported by our church. They are bringing us meals for the next week to ease the burden of cooking during this troubling time. ❤️ Such a wonderful and humbling blessing.
We are also thankful that it seems like she has only been in pain for one month and not six.
Please pray with us and for us. Pray for quick answers, for healing, for comfort for Tori, for wisdom for Brennan and me, and for the Lord’s leading in all of this.
This parenting gig is not for sissies.
Note: just because we have made these choices doesn’t mean that we are judging those who don’t! All parents have to make the decisions that work best for their family.
The number one thing I have heard about raising kids is how expensive it is. Between diapers, formula, wipes, etc. it can really add up during the first few years of life. On average, parents who choose (or need to use) formula will spend thousands of dollars just to feed their baby. Diapers on average will cost $3,000 per child from birth to potty training. I don’t have links to prove this, but I have heard these stats enough to believe them.
When we found out that we were pregnant, we knew that I would stay at home with the baby (and all future children), which would mean a slight loss of income. So, being the frugal person that I am, I began to research ways that we could save money and still make life great for our children so that our budget would not be greatly impacted.
By cloth diapering, using cloth wipes, and breastfeeding, we spend very little, if any, money on our baby each month.
If you had asked me a few years ago if I would ever cloth diaper, I would have said no! It sounded awful and like so much work. However, I have several friends who have cloth diapered and they blogged about their experiences. As I read their blogs, I realized that this was absolutely what we needed – and wanted – to do.
We spent less than $300 up front for our cloth diapers. We have 21 diapers and at least 20 extra liners. Since they need to be washed every 2-3 days anyway, it’s the perfect amount of diapers for one child.
Because Tori is exclusively breastfed (which is also free), washing the diapers is simple: you put them right into the washer. The poop of breastfed babies is water soluble (and doesn’t stink!), so you just do a cold rinse cycle and then add your detergent and wash on hot. So while we have increased our water bill by about $4 per month, we are saving so much more than that!
In addition, Brennan’s step-mom and her daughter-in-law made us cloth wipes for our baby shower. Again, never thought I would use cloth wipes! They are so wonderful and so good for baby’s skin, though! No chemicals, no waste, and you wash them with the diapers. Even our pediatrician said to not use disposable wipes because of the chemicals.
Tori rarely has any diaper rash and she seems to prefer cloth to disposables based upon her demeanor during diaper changes. We do use disposables at times and have them on hand for babysitters who may be uncomfortable with cloth.
The best part about using cloth is that these will last until she is 35 lbs, and we can use them for all of our children! That means a savings of $11,700 if we have the four kids we would like to have! Granted, if the next baby is born before Tori is potty trained we may need to buy a few more, but we are still saving thousands of dollars.
Kids don’t have to be expensive. It’s all about what your priorities are, I think. You can choose to use disposables, which are easy and convenient, but expensive, or you can choose cloth, which require a little bit more effort and time but save thousands of dollars. We have chosen to save money while also keeping our daughter’s skin away from chemicals, and it is working well for us.
What steps have you taken to save money while raising children?
Answering Your Kids’ Toughest Questions: Helping Them Understand Loss, Sin, Tragedies, and Other Hard Topics by Elyse Fitzpatrick and Jessica Thompson is an essential read for any parent. Parents are the first people that their kids will talk to (in most cases) about things they encounter in life, and this book gives age-appropriate responses based on what the Bible says about each topic in an effort to help you adequately answer their questions.
What I loved the most about this book was the fact that they chose some of the hardest questions children might ask and they tackled them thoroughly – questions about divorce, sexuality, death, suffering, etc. I want to be prepared when our children ask us questions like these, and I know this book will be a fantastic resource.
I received a copy of this book from Bethany House in exchange for my honest review.
“There’s no way to avoid the intrusion of popular culture into our homes and families, but we don’t have to let these instances exploit and influence our children. Instead, we can use those unplanned opportunities to instill conscience, character, and faith into the hearts and minds of the children God has entrusted to our care.” (pg. 2)
In this day and age, you can’t be too careful when it comes to the things to which children are exposed. The battle to protect their innocence is a difficult one to fight. This book by Marybeth Hicks is invaluable! While I am a few years away from having to put the teachings of this book into practice, it’s definitely not too soon to start preparing for what’s ahead.
More than ever, kids are exposed to content and concepts in the media and the surrounding world that go directly against the Bible and Christian values. How can parents use these instances as opportunities to teach? This book breaks it down in clear language and talks about areas such as media, school, friends, sports, family, and the real world and how you can use these situations to build character in your child.
I especially enjoyed the chapter about media because it is an ever-growing part of everyday life. More than ever, people are connected to screens (whether through smartphones, television, etc.), and it’s increasingly difficult to avoid exposure. I agree wholeheartedly with this quote: “As Christians, we’re called to integrate our media consumption into our lives in ways that support our faith and values, and not as a perpetual temptation or an avenue of corruption.” (pg. 61) After reading this chapter, I feel better equipped to teach our daughter when the time comes.
It’s incredibly important to guard the hearts and minds of our children until they are old enough to maturely handle the content, and this book provides great advice about how to accomplish that. If you’re a parent of children under the age of 18, I highly recommend this book.
I received a copy of this book from Howard Books in exchange for my honest review.