A Whole New World

This post contains affiliate links. For more information, see my disclosures here.

With everything going on in the world, I thought you would all be bored at home and need some good reading material, so, here is a Loghan update.

You probably noticed in some of my pictures that Loghan is wearing an eye patch. This is for her lazy eye. I have to admit, that kid can pull off looking cute in anything!

After wearing the patch for 2 hours a day, 6 days a week for 2 months, we went back to the eye doctor for a follow-up, but it did not go as expected. I thought Dr. Tufty was going to tell us to just keep wearing the patch and that her eye was correcting itself, however, that was not the case.

Loghan’s left eye wasn’t improving and he didn’t think it was going to improve with the patch. He wanted us to continue using the patch but cut down to 5 days a week and follow-up again in a couple more months. That led into his talk about the possibility of Loghan having to have another eye surgery this summer to correct the issue.

The surgery would be non-invasive, take approximately thirty minutes, and would entail them going in and cutting a small muscle in her eye. Her next appointment is at the end of April – fingers crossed that things have changed and Loghan won’t have to go through another (third total) surgery. However, if she does have to undergo, yet, another surgery, I am optimistic that she will recover lightning fast in her normal Loghan fashion. Nothing can stop her!

She squints when the sun hits her face, chases her shadow and let’s the wind blow through her hair…

Squirreledmom

On a lighter note, I feel like Loghan’s personality is really starting to shine these past few weeks. She is starting to make a few more noises but is still pretty quiet. She still isn’t crawling on her hands and knees but she is an army crawling fool. Finally, yet most importantly, she is loving the outdoors.

Now, if you know Loghan then you know that last summer (pre-eye surgery) she did not like to be outside. The wind bothered her. The sun bothered her. Truth be told, there wasn’t much she liked about being outside, period.

 Since the weather has been warming up, cooling off, and warming back up again, we have had a few opportunities to play outside. I wasn’t quite sure how it would go, but oh my goodness you guys, it’s like night and day difference. Don’t believe me? I think the pictures speak for themselves!

She wants to walk everywhere and touch everything and takes on the sun and wind head on, well, for the most part anyways! She inspires me so much to continue to spread awareness and share our journey. She reminds me that it’s okay to be who I am and gives me the strength to be an even bigger advocate for her and for those that don’t have anyone to advocate for them.

If you follow me on Facebook and/or Instagram (@squirreledmom), you probably already saw what I’m about to share but share again I will. Enjoy!

How she loves the outdoors…

She loves her car, the grass, leaves and rocks…

She squints when the sun hits her face, chases her shadow and let’s the wind blow through her hair…

She watches cars drive by and tries to follow them like a puppy, she holds my hand and leads me in circles and she puts a smile on everyone’s path she crosses…

She, wasn’t always like this.
She, has overcome more obstacles than most.
She, is my daughter.

Loghan.

Hearing for the First Time

This post contains affiliate links. For more information, see my disclosures here.

It’s probably been a week or two since I have given a Loghan update but if you ever feel like you aren’t getting your Loghan fix, you can check me out on Instagram @squirreledmom.

What can I say, Loghan finally got her hearing aids and we couldn’t be more excited! Her first ear molds were done during her last Auditory Brainstem Response (ABR) and unfortunately, they did not fit properly so we had to have them redone. However, we were able to program them, get them in and turn them on for the first time.

Once they were on, we instantly noticed she could hear better, so much so that it brought tears to my eyes. Our little Logi Bear – how she tugs on our heartstrings. She endures so much and never gives up and I cannot wait to see where this next chapter leads us.

After her appointment, I couldn’t wait to go back and luckily we didn’t have to wait long. They were able to get the new hearing aids within a couple days and we were back before the end of week. Again, we noticed a difference right away when the hearing aids were turned on.

One of the things we are hoping hearing aids will help with, other than hearing, is Loghan’s speech. I want to point out is that there are a few cases of others with RERE Syndrome that are non-verbal and if you know Loghan, then you know that her vocabulary is very short and consists of lots of ‘Ahhhs’ and blowing raspberries. At eighteen months old, that puts her behind the ball in the speech department, but I’m hopeful she will get ahead of the curve and keep on proving people wrong.

I know that we will not see instant changes vocabulary wise from Loghan since she hasn’t been hearing 100% since birth, but we are already seeing a difference with her response to commands. She is already responding to cues that she was not doing prior to hearing aids, like “clap” and “so big”. This makes me SO happy and shows what a difference the hearing aids are really going to make.

Loghan is classified as having mild hearing loss. To give you an idea of what that looks like on paper, here are the hearing scores she was given. The first number is how she hears without amplification and the second number is with amplification.

RIGHT ear:

Soft Speech: 41 – 98

Medium or Average Speech: 90 – 94

LEFT ear:

Soft Speech: 17 – 89

Medium or Average Speech: 65 – 93

Don’t be fooled by Loghan’s hearing loss being classified as “mild”. As mild as it may be, these hearing aids will help her pick up sounds she wasn’t hearing before, especially consonant and vowel sounds. Sounds that are key in developing her speech.

The path to getting Loghan’s hearing aids was not an easy one. Her scores from her first ABR left us just short of qualifying for them under Medicaid and our regular insurance doesn’t cover them either. No insurance covers them – it’s crazy! There is vision insurance, dental insurance, pet insurance…but yet, no hearing insurance. Mind blown.

Luckily, you can reach out for assistance to some great local resources. Some of them are income based while others are non-profit or charitable organizations. I reached out to a few (I will blog about those later) while we were waiting to do a second ABR to ensure Loghan’s hearing loss wasn’t progressive. The Sioux Empire Realtor For Kids provided us with a $750.00 grant toward Loghan’s hearing aids. This was great news, considering her hearing aids were going to cost just shy of $5,000.00.

After Loghan’s second ABR, her scores were almost identical, but one ear decreased just enough that we now qualified for her hearing aids to be covered under Medicaid. We are not hard up for money, but things do add up. I can’t imagine how stressed out some families must be about financial assistance if they have a family member with extra needs. It breaks my heart to think that some kids won’t be able to receive hearing aids because they can’t afford them and insurance doesn’t cover them. This needs to change.

Besides the cost, there are some other challenges that come with this powerful tool. One of them being, getting them in your child’s ears and staying there! Although there is this struggle, Loghan realizes that they help her so the only time she really tries pulling them out is when she is tired. She’s an ear puller when she gets sleepy.

Loghan is also a squirmy little one, however, we found a system that works and has helped our support system getting them in, out and to stay on!

  1. Turn them off.
  2. Put them in the hearing aid headband.
  3. Put the headband on. I found some cute ones from Etsy.
  4. Get YouTube ready!
  5. Put them in.
  6. Turn them on.
  7. Reward her for being good.

We have only had Loghan’s hearing aids for a little over a week so we are still learning, but I can’t wait to share what we learn and how she continues to develop. I know you are rooting for her right along with us and if you see us out and about feel free to say hi! Until then, don’t forget to follow me on Instagram @squirreledmom.

Left, Left, Left, Right, Left…

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If you’ve been staying tuned in to all things Loghan, then you know that walking is one of the obstacles we are trying to overcome. We work SO hard towards the goal of walking with different exercises, therapy and now, after a visit to a pediatric rehabilitation and orthotics specialist, the support of Surestep SMO ankle braces.

For those of you that don’t know, Loghan has RERE Syndrome and with that comes certain challenges. One of these challenges is walking. Out of the handful of people officially diagnosed with RERE there are quite a few that are or won’t walk. Some are said to be because of abnormalities of the brain while others cannot find an explanation as to why their little one won’t walk.

Loghan does have mild volume loss in her corpus callosum. The corpus callosum helps the right and left sides of the brain communicate to each other. Abnormalities to this part of the brain could affect her speech, walking, coordination and overall development, but we won’t really know much until she gets older. I was told not to worry about this as she is developing nicely and there are people completely missing the corpus callosum that are fully functioning.

She squints when the sun hits her face, chases her shadow and let’s the wind blow through her hair…

Squirreledmom

Let’s be honest, everyone can tell you not to worry but you’re going to worry. Worrying isn’t always a bad thing unless you let it consume you. I use it as part of my motivation to be more proactive and involved in Loghan’s development.

One way I have learned to find new ways or tips on ways to improve Loghan’s development was to talk about it. Yes, that’s right, TALK. It might be hard at first, depending your situation, but no one can give you advice if they don’t know. Talk to your family, friends, start a blog (ha!), join social groups in –person and online. Talk until people listen. Talk until people care. Just talk.

Talking and reaching out is how we got Loghan into her ankle braces. I went on a play date with the only other mom I knew, personally, that had a child that needed extra assistance. Once we started talking, light bulbs started going off and she referred me to one of the specialists that helped her daughter.

After I met with the specialist, she recommended the Surestep SMO ankle braces. Based on her evaluation she advised Loghan has hind foot pronation. In my MOMlingo, that basically means that her ankle bone turns inward and her foot turns outward. Her ankles are also a little weak, partially because she is so small. Everyone’s hope is that these will provide her some extra support to help get her walking, and guess what, they are!

I definitely don’t think the ankle braces alone are why she is on the verge of walking on her own but I do see a difference when she is wearing them versus not. I am hopeful she will not have to wear them forever, but for now they are a tool for her success, and you guys, look at these! They are just so little and cute…like her (The pic is from her very first day after getting them fit)!

Oh, and they make noise!

Maybe she’ll be a tap dancer – Ha!

Loghan received her ankle braces December 5, 2019 and we are still in her first pair. The nice thing about the type she has is that they are not full foot or leg braces so she can grow a little bit without having to get news ones quite so often. If your little one is struggling to walk, has lower muscle tone or other issues but you can see they have the desire to do it, check out your options. Where there is a will there is a way and Loghan is definitely finding her way to succeed!

This is one of Loghan’s first times walking in her walker with her shoes AND braces on!
This video shows Loghan’s improvement walking in her walker with her braces and shoes after only been wearing them for a month or so.

The Hearing Tests Continue…

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This is a follow-up from Loghan’s Story Part 8: Can You Hear Me Now? When I left you in Part 8, Loghan had just had her second Auditory Brainstem Response (ABR) Test. The first one was when she was a few weeks old and the second one was a couple weeks after her first birthday.

Loghan passed in both ears the first time around, but the second time around she failed both ears and had to go under general anesthesia for the ABR because she was having an MRI the same day. The results from the ABR revealed that she had minor sensorineural hearing loss in both ears – the left being slightly worse than the right. Sensorineural hearing loss is almost always permanent and in Loghan’s case is a result that stems from RERE Syndrome.

With Loghan’s hearing loss being mild, there were mixed reviews from audiologists whether she would benefit from having hearing aids. I immediately wanted to get them for her but the feelings were also mixed at our house. It also didn’t help that insurance doesn’t cover hearing aids and Medicaid also did not cover them because her hearing was not “bad enough”. I could go on and on about how I feel insurance is a joke, but I will refrain and stay on track.

Long story short, one thing everyone could agree on is that Loghan needed a follow-up hearing test in another 6 months to ensure her hearing loss is not progressive. In the time between that hearing test and this one, we continued to work with her on speech as did the speech therapist through the Birth to Three program (B-3). Although her speech has not progressed much in between hearing tests, neither my husband nor I thought her hearing had gotten any worse so we were hopeful going into this one that, that would prove to be the case.

February 10th, 2020 we headed to the castle for Loghan’s follow-up ABR. In usual Nagel fashion, we were early so we had some time to hang out before we got our room assignment. I definitely think Loghan is a morning girl like her mama, unlike her Daddy, but he did a good job entertaining her even though he wasn’t quite awake yet!

Once we got to the room it was time for more entertainment and interviews with the nurse and anesthesiologist. Since the ABR was the only thing Loghan needed to be sedated for this time, we were able to do the less invasive, up the nose anesthetic. This is WAY easier on everyone involved and less risky too. They simply squirt the “night-night” juice up each nostril and 15 minutes later, she was out like a light!

Once she was asleep for a few minutes, they called in the audiologist to start administering the test. If there are not any hearing issues, the test should only last a half hour, however, we knew this would not be the case for us. The test was around one and half hours, then another half hour or so for a couple other tests and hearing aid molds.

The ABR can be somewhat intimidating with everything they hook up and all the wires, so here is a rundown of what you will be looking at. There will be electrodes put on your child’s head. The electrodes are stuck to the skin and connected to a computer and will record brain wave activity in response to sounds that are played through the earphones. The person doing the test will see the results on a computer as your child sleeps that you can get a printout of when everything is said and done. If you are like me, you also ask a million questions while the test is going on because you need to know everything!

To test the inner ear, they will place a different headset behind one ear and in front of the opposite ear. Then it vibrates the bones in the middle ear and sends those sounds to your inner ear. I believe this is the test that told us Loghan’s hearing loss is sensorineural.

The next test is an eardrum test, where the audiologist will used a place an instrument called a tympanometer. The soft plug that goes into the ear will detect eardrum movement and the movement will be shown as a bunch of lines on the screen. The lines tell the audiologist how the eardrum reacted. Ask them to show you how it looked and what it means.

We’re almost done. Since it was recommended, after reviewing Loghan’s results, that she should get hearing aids, they need to make the molds. This was really cool to watch actually. They carefully place a soft foam piece with a string attached gently against the eardrum. Then, they inject the goop, as I call it, with a giant syringe and wait for it to try. After that, they softly pull out the mold, check the ear to make sure nothing is left over and plop them in a bag to get sent off for the mold. The last thing we had to do was choose colors. If you know me, then you know I chose purple!

All right, now that you have all that figured out – let’s wake sleeping beauty up. This is my favorite part. She has already been out for a couple hours so I just nuzzle right up to her and give her kisses all over until she wakes up and is like, “What the heck Ma! Knock it off!” She is so groggy and looks like grandpa when he’s had a few too many drinks on the weekend! She’s just so snuggly and you can guarantee that’s what we did the rest of the day. This was mainly because the medicine was still wearing off, but I wasn’t going to complain.

Now we patiently wait for the hearing aids to come in!

Loghan’s Story Part 10: ¡Eye Caramba!

This post contains affiliate links. For more information, see my disclosures here.

In this post, I’m going to talk about Loghan’s eye surgery and her super-human speedy recovery. If you missed any of Loghan’s story and want to catch up, click here.

To recap a tidbit from Part 1 of Loghan’s Story, on August 5th, 2019 Loghan was officially diagnosed with congenital entropion in both eyes and epiblepharon in her right eye. Entropion occurs when the edge of the eyelids (bottom eyelids in her case) turn in causing the lashes to rub against the eye. Epiblepharon is a lid anomaly where a fold of skin and underlying muscle push the lashes against the eye. Left untreated, these conditions can cause damage to the cornea, eye infections and vision loss. She also has intermittent Esotropia of the right eye, where her eye occasionally turns inward (“cross-eyed”).

  • Eye malformations are relatively rare, occurring in approximately five per 10,000 live births.
Hopefully you are able to see her lashes rubbing on her eyes. You might also notice the inward turning of her right eye.

Loghan’s initial pediatric eye appointment was back at the end of July at the Sanford Ophthalmology Clinic in Sioux Falls, SD. A few weeks later, we took a one-day trip to the Minnesota Lions Children’s Eye Clinic for a consultation. The consultation took 15 minutes max. The car ride was 8 hours total. You can about imagine how happy our squirmy and energetic child was sitting in the car that long, but we did what we needed to do (Baby Einstein was a lifesaver!).

At the consultation, they asked us some questions, put a colored saline solution in her eyes and then looked at them with a different colored light to make sure her eyelashes were not scratching her corneas. Baby’s eyelashes are still soft so they hadn’t caused any damage yet, however she did have sensitivity to light and wind due to this. Her eyes would also produce extra eye matter to try to protect her eyes from the irritation of the lashes being in her eyes. This was probably the most annoying part for her. That, and her eyes crusted over every morning so we were constantly wiping out her eyes multiple times a day.

After the Dr. Ali looked her over, he agreed that she would indeed need to have surgery. Loghan would need lower eyelid entropion repair on both eyes. It is a mouthful, I know! They advised they wanted us to wait until a couple months past her first birthday before they did the surgery since she was so small, but the surgeon told us she should get immediate relief, so that is what I focused on.

November 3rd, 2019, the day before Loghan’s eye surgery. As you can imagine, I was a little anxious at this point. I felt like the day would never come. We drove up the day before and stayed in a hotel near the University of Minnesota Masonic Children’s Hospital where she would be having surgery the next morning. We had to be to the hospital bright and early at 6AM, so driving up the morning of wasn’t really an option. However, we made the most of our hotel stay and made sure to give Loghan lots of love and attention.

November 4th, 2019, it’s time for Loghan’s surgery. We woke up at the butt crack of dawn and headed to the hospital. I say the butt crack of dawn because daylight savings had just taken place. Funny story – My phone never updated with the time change so we were up an hour earlier than we should have and didn’t realize it until one of the nurses made a note of the time for Loghan’s records. I have never had this issue and Paul’s phone updated so it’s no wonder everyone looked at us like we were nuts when we showed up so early to the hospital!

Since we beat most of the hospital staff into work that Monday, we had quite a bit of a wait before we could get into our room. Once in our room, a nurse did all the standard checks and we put Loghan in her hospital grade, ugly jammies that she could practically swim in (ha!). Even though the jammies were a sight for sore eyes (pun intended), Loghan didn’t seem to mind.

After the nurse looked her over, we had a visit from the resident anesthesiologist, followed by the anesthesiologist and the surgeon. We know how the process goes for these sort of things now. Check-in, get looked over, meet her team and then the hard part of being put under and wheeling her out of sight, but never out of mind. Then she has the procedure completed, gets brought out of anesthesia and placed in recovery. After that, finally, mommy and daddy get to see her again (my favorite part)!

In between meeting everyone from Loghan’s team, we had some down time to hang out, take a nap and play. She found fascination with our nametag stickers and the light-up vibrating toy the hospital provided. We do everything we can to keep Loghan occupied in times like this and try to keep everything as seemingly normal to her as possible. It takes a lot to be able to hide your emotions from your kids (for me anyways) but that’s why Paul and I have each other. When she finally does get wheeled off, we have each other to breakdown with and to help compose ourselves once we can see her again. Support!

Taking advantage of family time pre-surgery and Loghan REALLY wanting Daddy’s name-tag!

As Loghan’s team made their rounds one last time before surgery, the anesthesiologist explained how Loghan would put her under and for how long. The surgeon explained that they would make a small incision right underneath her bottom eyelashes, do what they need to do to ensure the eyelids will be everted, and then stitch her back up. Dr. Ali also marked both eyes to ensure the surgical team knew to do the work on both eyes. After the coloring session, it was back to snuggles and giggles until go time.

Snuggle time is over and the time had finally come. The anesthesiologist came in to get us and we walked with Loghan all the way to the surgery door before we had to say goodbye. The hardest part! Paul and I both picked Loghan up and gave her lots of kisses. Okay, who are we kidding, I gave her lots of kisses and then a lot more until I got “the look” that it was time to go. No use delaying the inevitable. It didn’t help that she had started to cry, so as I set her back in her bed it took all my strength not to look back, otherwise I would have lost it. As Paul and I practically ran to the waiting room, we did find some comfort in each other and that the entire surgery should take less than an hour.

In the waiting room, they had a TV set up with all the surgeries going on and what stage they were in so we could follow them through the process. We both snuck in a power nap and before we knew it, a nurse was coming to get us. It did go by faster than I expected – what a relief!

Off to recovery we went. Of the three times Loghan has been put under general anesthesia, she came out of this one the worst. She was not a happy camper, but I think some of that was because they had braces on her arms to keep her from rubbing her eyes, not to mention she just had eye surgery and was probably hangry!

I was able to calm Loghan down a little bit by breastfeeding her, but as soon as she was done eating it was right back to an unhappy baby. We tried removing the arm braces, treats, toys, singing – you name it, we tried it. One of the nurses mentioned that sometimes little ones just aren’t happy until they are out of the hospital and back to their normal environment. With that, we got Loghan to eat a bit of food and were given the go ahead to get on the road back home. One of the nurses even gave Loghan a balloon, which made her happy for a whopping 30 seconds, but it’s the thought that counts!

Once we got settled into the car and on the road, Loghan settled down and was able to take a short nap. I rode with her in the backseat as daddy played chauffer. We wanted to make sure she didn’t rub her eyes and didn’t want her left alone right after surgery for a four hour car ride. Surprisingly, she didn’t sleep as much as we thought, which made the car ride feel a little longer. I was constantly grabbing her hands to keep them out of her eyes and we had to make a pit stop for some drugs, aka Tylenol. We were to alternate Tylenol and Motrin and didn’t have any with us.

After we got some meds in her, Loghan settled back in and we chilled out and watched some Baby Einstein. I will say it again – Baby Einstein was a lifesaver on this trip for us! What was even more eye opening (again, pun intended), was just how much I noticed a difference already. Dr. Ali had told us she would have immediate relief, but this was amazing! She was giggling at things on Baby Einstein that she had never giggled at before. My heart was happy!

When we finally made it home, it wasn’t long before Loghan zonked out and we all took a much needed nap. I was surprised when she did wake up that she didn’t try to mess with her eyes too much. Her eyes were still a little gunky the next morning but the next day they were practically gunk free. It was like magic, and besides a little puffiness and a little black and blueness, you wouldn’t even know she had just had surgery.

We kept the next couple days at home pretty low key. Visits from grandmas and grandpas made our day and there was no shortage of love for Loghan that’s for sure, and she deserves every little bit of it! Now the only thing left to do was heal.

You know I couldn’t leave out pictures with Grandmas and Grandpas! Enjoy! (Top left-right: Grandpa Tom, Grandma Linda. Bottom left-right: Grandma Marti, Grandpa Jim)

Healing would be the longest part of the process. Dr. Ali advised that healing would take upwards of 6 months, but at 3-4 weeks it would be barely noticeable and the sutures would be gone around 4-8 weeks. We were given eye ointment we had to rub on her eyes three times a day for a few weeks and were told to ice her eyes as much as we could, if we could find a way to do it. If you are wondering how I accomplished this, the answer is breastfeeding and the soft beaded gel packs. I used the ones my wonderful husband got for me, for my breasts, when my milk first started coming in. They worked great and this was the only way I could get anything cold over her eyes. The doctor also said we could try a washcloth dipped in ice water, but that didn’t go over very well.

The booby icepack breastfeed session at it’s finest, ha!

Besides icing and ointment, there wasn’t a ton of restrictions. We weren’t supposed to get her face fully wet for a week, especially in the bath tub. They didn’t want the bacteria from the bath water to get in her eyes, so for the next week Loghan had a wet washcloth head rub instead – she didn’t seem to mind! Other than that, all of our follow-up appointments with Dr. Tufty will be in Sioux Falls, which saves us time, money and our sanity.

Loghan’s first follow-up a few weeks later went as smooth as could be. Dr. Tufty said everything looked great and we didn’t have to schedule another appointment for three months. That’s one less reoccurring appointment for the Nagels – Woohoo!

Another picture from her follow-up appointment. I think she knew we wouldn’t have to come back for a while!

Pictures from her follow-up appointment. I think she knew we wouldn’t have to come back for a while!

All this good news is cause for celebration. This little girl, my goodness, you wouldn’t think Loghan even had surgery with how happy she was, even after only a few days. I remember telling friends and family that she handled her surgery better than most adults would and they didn’t disagree! From here on out, things are looking up for Loghan and the Nagel family!

I will leave you with a before (left is the day before surgery) and after pic (right is two weeks after surgery). Try and tell me you can’t see a difference! Heart = Happy!

This is the last post in the Loghan’s Story series but I will continue to use this thread to share updates about Loghan. Thank you for following our journey and don’t forget to subscribe!

Loghan’s Story Part 9: RERE Syndrome – Explained

This post contains affiliate links. For more information, see my disclosures here.

I’m going to start this post by recapping a tidbit from Part 1 of Loghan’s Story. If you missed any of Loghan’s story and want to catch up, click here. On August 28th, 2019 we were told Loghan has Neurodevelopmental disorder with or without anomalies of the brain, eye, or heart (NEDBEH) also known as RERE Syndrome (arginine-glutamic acid dipeptide repeats). It’s a mouthful, right?!

In a nutshell and in my best MOM lingo, the RERE gene is responsible for making a protein that gives instructions that are critical for normal development before birth. According to her geneticist, RERE is a newly discovered condition with only 18 published cases and only 30 people worldwide that have been diagnosed to date. With little to go from, what we do know is that it explains her birth defects and developmental delays.

There is a plethora of birth defects possible with RERE syndrome. Below is a list of birth defects specific to Loghan’s diagnosis.

✔ Diaphragmatic hernia

✔ Entropian, both eyes

✔ Esotropia and Epiblepharon, right eye

✔ Hypotonia aka low muscle tone

✔ Mild sensorineural hearing loss in both ears

✔ Mild volume loss in the posterior body of the corpus callosum

✔ Mild nonspecific T2 hyperintensity in the periatrial white matter

✔ Delayed development of speech and motor skills

In Loghan’s case, she has a duplicate “G” at the 3,741st letter of the RERE gene. The normal sequence is TCGGCCCG and for Loghan it is TCGGGCCCG. RERE is also considered “de novo”, which means it did not come from either parent. This is actually something that helped ease some of my MOM guilt. You might be thinking that I shouldn’t feel guilty, but when you are confronted with a situation such as ours, guilt is just one of the many emotions I have gone through.

If you are wondering just how this happens, rest assured that I was thinking the same thing. Mutation occurs in the egg or sperm cell before fertilization, or immediately after fertilization, however, there is a <1% chance that this would happen again in future pregnancies. RERE is also considered autosomal dominant, which means Loghan has a 50/50 chance of having a child with RERE in the future. Even though that is a long ways away, it is still a scary thing to think about.

With all of this is on the table, let me explain some of the big words, in my best MOM lingo of course. The mild volume loss of the corpus callosum could mean multiple things. This is basically the connector that communicates between the right and left side of the brain. This can affect things such as walking, talking and coordination.

The T2 hyperintensity, or bright spot, is just saying there is a spot in the brain that is different from the rest. From what I have read, this can be associated with forms of physical disability such as muscular strength, fine motor coordination and slower information processing. This could help explain Loghan’s lower muscle tone and developmental delays.

With all this being said, we will not know the extent of Loghan’s developmental delays until she gets older. All we can do is be proactive and treat her symptoms as they arise. One way we are doing that is by making her DIY parallel and monkey bars she can use at home and at daycare. She is also doing physical therapy twice a month through Sanford Pediatrics and is enrolled in the Birth to Three program where she gets additional physical therapy sessions weekly and speech/food therapy and education as needed. I will talk more about the free programs in future posts.

I’m optimistic that we are ahead of the game and with the team of doctors she has following her and our own support system of friends and family, little miss Loghan is going to thrive. As a mom, I am out to prove everyone wrong and if you know me, you know I’ll do just that! Loghan might be little but she is strong, stubborn and has a mama that will fight tooth and nail to get her what she needs to succeed!

I will continue to post updates to Loghan’s story as she learns and grows or if we learn new things about RERE syndrome. In the meantime, the next post in this series I am going to talk about Loghan’s eye surgery.

Loghan’s Story Part 8: Can You Hear Me Now?

This post contains affiliate links. For more information, see my disclosures here.

When Loghan was born, she failed her initial hearing test at the hospital in her right ear. In this post, I will talk about hearing tests in my awesome MOM lingo and the outcome for Loghan. If you’ve missed any of Loghan’s story and want to read more, click here.

If your baby fails a hearing test in the nursery, the nurses will tell you that it is normal, as there could still be fluid in their ears from birth. I’m sure the nurses are always trying to keep things positive given the fact you just gave birth a few hours ago. As new parents, all you want (or at least all I wanted) to do is enjoy your time with your new bundle of joy worry free!

Since Loghan failed her hearing test in the nursery, that meant we had to do a follow-up appointment a few weeks later. For us, that meant a visit to the Ear, Nose and Throat (ENT) doctors at the Talley Building. Once we were all checked-in, we proceeded to a room to complete her Auditory Brainstem Response (ABR) Test. Being that Loghan was a newborn; they did not have to sedate her to do the test as she slept through it.

When they do the test, they put small sensor stickers on areas of her face and place tiny little earphones in her ears. When everything is in place, the audiologist plays sounds through the earphones and the electrodes measure how the hearing nerves and brain respond to the sound. It is rather intimidating seeing your baby hooked up to all of the equipment but two hours later, we were done. One of the reasons it took so long was because they had quite a bit of technical difficulty completing the test. Nonetheless, the test was complete and the results are immediate – she PASSED both ears! I was so relieved!

As time went on and the issues with Loghan continued to pile up, relief started turning into distress as I started noticing hearing discrepancies from one ear to the other. To ensure I wasn’t going crazy, I took a video and sent it to my husband and a couple of close friends. They agreed that they saw what I was talking about, so we scheduled a follow-up hearing test.

This time when the audiologist completed the hearing test, Loghan failed both ears. I was terrified but skeptical because Paul, myself and others all knew she could hear. I was also told that these tests are not 100% accurate and she would need to be further evaluated. YAY, more appointments!

On September 27, 2019, we headed to the castle, yet again, for her ABR Test – this time under general anesthesia. Once they reach a certain age, the hearing test is too difficult to complete when they are awake because they are too squirmy and she is not at the age where she can communicate whether or not she can hear something. We also decided that since Loghan had to be put under that we would get an MRI done at the same time, since with an MRI she would also need to be sedated.

We arrived at the Castle at 7AM, hoping that we would be able to have both tests completed. Loghan had been fighting a cold for two weeks and they told us that she could not have a fever, cough or cold if she was going to be put under. Thankfully, when we met with the anesthesiologist he said she was well enough to do the tests. We hung out in the room trying to keep Loghan happy until the MRI started at 8:30AM. This is a long wait for a tired and hangry baby. She wasn’t allowed to eat after midnight.

Similar to her surgery, we were wheeled down to the room for where the MRI would be conducted, only this time it was in an actual bed and not a wheelchair. Daddy was not far behind but practically ran out of the room when they asked if we wanted to watch her be “put to sleep”. It made me giggle a little bit, but in all seriousness, I totally get it. I laid Loghan’s head down on the giant table and held back my tears as I gave her Eskimo kisses. I then left the room to try to catch up with Speedy Gonzalez, who was already down the hallway on his way to the waiting room.

We had the option to leave and go get food or something since it was going to be a few hours between the MRI and ABR, but who were we kidding, we weren’t going anywhere. We made small talk, surfed the web, chatted with friends and eventually got to the point where I just flat out started to annoy my husband to death, but we got through it.

The waiting room was right outside the room where they were going to do her ABR test so we caught a glimpse of our sleeping beauty in between procedures. This helped ease my mommy heart a little, but time started dragging more and more as the day went on. The last hour was the worst and my patience was running thin. Then, just when I thought I was going to go bust down the door myself, the door opened and they told us everything went well and we could come see her.

Loghan was just waking up when we walked in the room and she was groggy but super cute! I crawled into bed with her and she gave me the, “Where am I?” look. Even though she wasn’t being put under for anything major, it’s still serious business putting anyone under, especially at her age and size. Loghan is such a trooper though and she comes out of anesthesia so well, so that makes it a little easier on my mommy heart.

In the room, the audiologist shared the results from the ABR. I was hoping for the best but expecting the worst. Thankfully, they revealed that she had only mild hearing loss in both ears and that it should not affect her speech. However, they did state that they would like to continue to monitor her hearing and complete another ABR in another six months to ensure the loss is stable and not progressive.

With the ABR results out of the way, the MRI is the last piece of the puzzle in terms of checking out all of Loghan’s organs that could have been impacted by the RERE Syndrome (I will discuss this in a future post). Her heart, lungs, kidneys and bladder all checked out to be in normal working order, however, this was not the case for her brain.

Again, I was hoping for the best but expecting the worst. Her MRI showed abnormalities BUT only mild abnormalities. I will now provide you with the doctor lingo and then translate it the best I can with my MOM lingo. The doctor advised that there is mild thinning of the corpus callosum and an area of a bright signal on one side of the brain, which probably represents where the brain is developing insulation. These are all expected findings for someone with RERE Syndrome.

Now, here is my best interpretation, after talking with her geneticist, to all the scariness above. The corpus callosum helps the right and left sides of the brain communicate to each other. Abnormalities to this part of the brain could affect her speech, walking, coordination and overall development, but we won’t really know much until she gets older. I was told not to worry about this as she is developing nicely and there are people completely missing the corpus callosum that are fully functioning.

These statements might be a comfort to some, but to me they undermine the seriousness of her condition as it relates to her syndrome. I am not trying to be pessimistic but I do not want anyone to create false hope for something that might not happen, like walking or talking. I want to be optimistic and proactive and address the possibility of these things not happening by monitoring her development and by introducing her to the needed therapies early to help her progress developmentally in every way!

So far, Loghan is doing Physical Therapy through Sanford twice a month and was recently enrolled in the Birth to Three and Family Support programs. These are free programs at the local and state level. They will help us get Loghan where she needs to be, including additional physical therapy, occupational therapy and education assistance. I will talk more about the free programs in future posts.

I know I have mentioned RERE Syndrome quite a few times now and some of you might be wondering what that is. If you Googled it, you are probably as terrified as we were, but with any genetic disorder, there are variances in severity. In my next post, I will explain RERE Syndrome and what that looks like for Loghan. 

Loghan’s Story Part 7: There’s No Place Like Home

This post contains affiliate links. For more information, see my disclosures here.

It’s day four in the castle and Loghan is in recovery mode! In this post I will talk about Loghan’s post-operation recovery and what the first few days at home were like. If you’ve fallen behind, you can catch up on Loghan’s story here.

Since surgery went so well, we were back in our room and surrounded by our parents. The first night was the easiest since she was so tired from the surgery and still fighting off the anesthesia. I don’t even think I opened but one eye as the nurses came to check on her that night. Some nice, uninterrupted sleep was much needed.

The next morning she was still pretty out of it, but on a plus note, she could breastfeed again. I had been pumping since we got to the hospital since they took Loghan off my breastmilk and on an IV to get her fluids. I was so excited to start feeding her again but it was also a challenge. Thankfully, the nurses from my breastfeeding support group were only a call away. If I didn’t tell you just how much these ladies impacted my life in an earlier post, take this as my word that they did. One of the lactation nurses came right over and helped me find some good positions for Loghan to feed in. It was hard, given the fact that half of her tummy had just been sliced open, but we eventually made it work. Once I had feeding figured out and Loghan was officially off oxygen, it was time to start thinking about the possibility of going home.

Day six, one of the coldest days of the year, they gave us the good news that we could go home! Excited and anxious all at the same time, we left the hospital and ventured back to our house. After five nights sleeping restlessly in the castle, I couldn’t wait for a hot shower and to sleep in my own bed, but before you leave they tell you a million things to try and remember and have you fill out some paperwork before sending you back to reality.

When you get home there are not any nurses coming to check on you or answer your questions. The only one there to make sure I’m doing things right and reassuring me that Loghan is okay is Paul. I probably don’t tell him enough, but he really is the rock for our family. He keeps the crazy, aka me, reigned in and puts itty bitty and I as priority #1. We are pretty lucky to have him as a hubby and daddy.

The first night was probably the hardest. It was harder than bringing her home for the first night after she was born. She was so tired and she would moan in her sleep and wake up. I could tell she was uncomfortable and in pain so staying on top of her Tylenol and Motrin were key. Those were the only things we could give her for pain since she was so little. What else made staying on top of her meds difficult was that she didn’t like them and would spit them up. To this day, she still hates meds and spits them up!

The next day I spent questioning EVERYTHING. Was it okay that she spit up? What if her temperature spiked? What if I couldn’t get her to eat or take her meds? I re-read her paperwork a million times and called the nurses at least two or three times just to make sure I was doing things right and that I wasn’t just over reacting about anything going on. The last thing I had to do to feel like we were back at home and in a routine was to give her a bath.

I don’t really know why I was so nervous about giving her a bath, but I was. I suppose it was probably because I just didn’t want her to be uncomfortable, but inevitably, I started the water and we got through it. There was surgical/skin glue over her incision, which made it easier to work with in the tub. As long as I didn’t let her soak in the tub it was okay.

Another squirrel moment! After Loghan’s surgery, the surgical team advised I could go back to a normal diet, however, the GI doctor said to stay off dairy. Confused, I called my NEW pediatrician and she advised to go with what the surgical team said. Although skeptical, I started eating a few things with dairy in them. Loghan started showing symptoms of being sensitive to dairy so back off it I went. I wasn’t mad that I was back off of dairy. What I was mad about was that, still, after everything I had been through, there seemed to be disconnect between the doctors and myself. This whole experience has left a bad taste in my mouth for the healthcare system, which makes me sad. Now, I know that there are some amazing healthcare staff out there but I have had one too many bad experiences to date. It’s more about the processes and what not that they follow then the people themselves. I have a lot of respect for all of my nurse and doctor friends out there!

Back to the story! After the weekend, I decided it was time to go back to work. If you think it’s hard going back to work after maternity leave, try going back after your baby has surgery. It was NOT fun to say the least. I was so worried about her every minute I was there. The only thing that made it a little easier was that we have family as daycare. This helped tremendously and put my mind a little more at ease knowing we had people that loved her watching over her making sure she was taken care of. I can’t tell both of our families how much we appreciate them for everything they have done and continue to do for our family.

Just like riding a bike, I got used to being back at work. I still didn’t like it…I still don’t like it, but you do what you have to do for your family. After a couple more weeks, Loghan started to bounce back. She was finally getting back to her smiley and happy self and I couldn’t be more happy. She is the light of our lives and I don’t know what we would do without her!!!

Now that we are all getting back to a normal lifestyle you think Loghan’s story would be over, but it’s not. Loghan’s story continues as we wait for genetic test results, eye surgeries, hearing tests and an MRI. Our journey is just getting started. The next post in this series will talk about Loghan’s hearing tests and MRI.

Loghan’s Story Part 6: It’s Go Time

This post contains affiliate links. For more information, see my disclosures here.

It’s go time! Well, not quite, but this post is going to fill you in on some things to expect if you ever have a child that, heaven forbid, needs surgery. I will talk about pre-operation, the operation itself and the rollercoaster of emotions we went through. If you’re not sure you know why there’s an operation going on, you can catch up on Loghan’s story here.

Saturday, January 26th 2019 and Paul has arrived, my pre-Paul’s arrival support crew has left and we’re finally on the right track. The surgeon explains he wants to wait until Monday when the full PEDS staff is there to do her surgery. We don’t disagree as we want all hands on deck in case something goes wrong. He explains what he will be the one to do the surgery and some things to expect. Then he leaves us to our thoughts and an entire day of waiting.

When you have an entire day to do nothing but wait…you think. Why our daughter? Why us? What if something goes wrong? What if, what if, what if! It’s not a very fun game and I don’t recommend you play it. If you can, try to stay focused on the positives, the end goals and how much better everything will be when it’s over. It’s easier said than done, but it can be done.

One of the things we instantly thought of is the cost. How are we going to pay for this? Fortunately for us, we have good insurance but there’s still that deductible you have to hit, which isn’t cheap. Then you also have to account for things insurance might not cover or maybe you don’t have insurance and need to figure out finance options, if any. These are all valid questions to find answers to.

My best friend Jessica actually started a donation page for us through Facebook and was able to help alleviate some of the burden for us. Any little bit helps. The last thing you want to worry about is money when you have a loved one that is in the hospital. If you or someone you know could benefit from a fundraiser, Jessica used PLUMFUND. She said it was easy to use and had the least amount of fees.

Now that we had some of the initial financial questions out of the way, I guess it’s back to waiting. Paul is running to and from the castle and home to hang out with our furchildren. He also needed a good night sleep since he was traveling, and there was no way anyone was going to get me to leave. I stayed with Loghan every night. Don’t worry, I had Paul bring me some clean clothes and I showered, at least once!

Late Sunday afternoon my Dad and Delores (my dad’s wife) finally got home from Mexico. They walked in to the room while Loghan was having an echocardiogram (heart ultrasound) done. I immediately turned to hug my dad and started crying, mostly out of relief. It was hard having the two most important men in my life absent at the time of Loghan’s diagnosis. Now that both of them were home, I felt a little more at ease about Loghan’s upcoming surgery. On a side note, Loghan’s heart ultrasound came back normal. Sometimes with diaphragmatic hernias, there can also be issues with other organs such as the heart and lungs. Her lungs are also fine.

As Sunday came to an end, we started to think about Loghan’s surgery the next day. We were speechless, we cried, we got angry, we laughed – it’s a whirlwind of emotions really. We don’t know what to expect but we’re hopeful everything will go smoothly and that Loghan will feel so much better once this is over. One more night to get through – I think we can, I think we can, I think we can.

It’s Monday – surgery day. Loghan was scheduled for surgery relatively early and the grandparents came up to give kisses, snuggles, and then headed down to the waiting room to wait for us. Waiting for the nurse to come and get us to go to surgery seemed like forever. When they finally did come, they came in with a wheelchair. As I sat down they handed me Loghan and then the nurse and Paul walked us to the surgery ward across the castle and into the hospital. We met the surgical nurses and one of them happened to be a friend I play volleyball with occasionally. I already felt uneasy about handing Loghan over to a complete stranger to get anesthesia so this made it a little easier.

I handed her off and as they wheeled her out of the room, I immediately grabbed Paul and started crying. After I composed myself, someone escorted us to the waiting room where our parents greeted us. I was shocked when no one, not even me, cried. I don’t like crying in front of people but there are exceptions. Anyways, the time actually went by quicker than I thought and after no more than an hour or so, a nurse came and got us to meet with the surgeon. The surgery was over already!

We didn’t know what to expect. Was this a good thing that it didn’t take very long? Did they find something else wrong? All questions swirling in our heads as we waited to talk to the surgeon. Thankfully, my friend that was in surgery with Loghan sent me a text to let me know that everything went really well. A few minutes later the surgeon came in and let us know surgery had gone well. He said that the hole in her diaphragm was the size of a quarter and they put everything back where it needed to be and stitched her back up, with no mesh needed and only three or four stitches. Mesh would have been necessary if there wasn’t enough diaphragm to stich by itself.

He also stated that because it went so smoothly that we could go back to our room after recovery and that staying in the PICU (Pediatric Intensive Care Unit) was not needed. I’m starting to like this guy! Off to recovery we went. I was relieved to see Loghan and was even more relieved when I saw another nurse that I knew on her recovery team. Having people you know watching over your little one makes the journey so much easier and I am so thankful for that! It lets you breathe a little easier.

I sat in a wheelchair again and a nurse put Loghan in my arms. She was making little whining sounds through her breathing mask as she was coming out of the anesthesia. It was really cute. The nurse wheeled us back up to the room and once we got adjusted our parents came in. The hard part is over.

I’ll wrap up this post with a few tidbits that might be good to know if you ever have to stay at the castle.

✔ Parents ARE Visitors.

✔ There are only a certain amount of visitors allowed in the room at any given time. This means that if you are at the max and mom or dad left the room, that mom or dad cannot re-enter the room until someone else leaves. Confused? See first bullet: Parents ARE Visitors.

✔ Parents do not eat for “free” unless you are a breastfeeding mama so bring snacks or recruit people to bring or order you food.

✔ If you HAVE to have the nurse get you something for your baby, make sure you bring it home. You paid for it.

✔ They won’t let you use your own baby care items, like Aquaphor. I would not mention you use it and just use it when they are not in the room. Otherwise, they make you buy it from them.

✔ Breastfeeding mamas: If you have to pump, they make you labels and will store it for you in a secure area. They have strict rules on timeframes and will only FREEZE it so make sure you understand their rules.

✔ You cannot sleep with your baby or even look like you are sleeping. I wouldn’t even close your eyes because they will catch you!

✔ Bring comfort items for you and baby from home!

undefinedThere’s no place like home…there’s no place like home…there’s no place like home! In my next post, guess what, we get to go home!!!

Loghan’s Story Part 5: An Incidental Diagnosis

This post contains affiliate links. For more information, see my disclosures here.

We made it! It’s time to find out just how Loghan’s diaphragmatic hernia was incidentally diagnosed and what led us to finally admit her to the Children’s Hospital (Castle). If you’re just joining me, please check out Loghan’s Story here to catch up!

January 23rd, 2019, I picked Loghan up from daycare and headed home but something felt “off”. She was acting lethargic and refused to nurse and I had decided to leave my breast pump at work. With Paul being out of town this week for work, I dialed up one of my best friends, Denise, to come hang out with Loghan while I ran to get my pump. If you are a nursing mama then you know what I’m talking about when I say, “I thought my boobs were going to explode!”

When I got back home, Denise also made the comment that Loghan seemed really tired and “out of it” but she didn’t have a fever or anything so I was wishy washy about bringing her to acute care. I was also leery about going in because of the multiple times I had gone in before for issues and getting the same canned response that I just had a fussy baby. However, my MOM tuition was telling me to go in, so off to the clinic we went. They checked her over and ran some tests and of course, everything came back normal and I was told to follow-up with Loghan’s pediatrician if I still had concerns.

Fast forward two days later and I still had concerns. I toted Loghan off to the clinic, yet again, and prepared myself for more fussy baby remarks and that is exactly what happened. Loghan’s pediatrician said she looked fine and that she was just a fussy baby. She then advised to bring up her eating concerns with the GI doctor (see my previous post about my feelings towards him) at our next visit.

I not so politely told her that I wasn’t going back to the GI doctor when he barely looked at her and didn’t run any tests the last time we were there. Since she could obviously tell I was upset, she offered to call the GI doctor and talk to him. After about a 10-minute conversation she came back in the room and told me that she and the GI doctor thought that I should admit Loghan to the hospital. What?!

How do you go from telling someone they have a fussy baby to now thinking they need to be admitted to the hospital? This didn’t make sense to me and I didn’t want to make the decision alone so I called Paul and put him on speaker phone with the pediatrician. Paul is now just as frustrated as I am because we have done so much back and forth with no answers that it is getting ridiculous. If we were going to admit her to the hospital then we wanted to know what the plan would be when we got there. She couldn’t tell us that. Inevitably, the decision was mine because I was the one there with her. With a million things running through my mind, I decided that I wanted to go home, think about it, and see if I could get her to nurse.

Before I left, her pediatrician decided to tell me that if I chose not to admit her and came back for a weight check on Monday and she hadn’t gained weight that she would pull the ‘medical necessity’ card and call child services. I bet you can all guess how well that went over – it didn’t. I was shocked to say the least, especially since I had been to see this particular pediatrician 10+ times with nothing but a fussy baby diagnosis. Frustrated, concerned and frankly, pissed off, I stormed out of the clinic.

As I left, I called my best friend Jessica and balled hysterically while cursing out the pediatrician and telling her what had just happened all at once. I bet it was a great ugly crying moment for anyone observing the rare spectacle! After she calmed me down and I got back home, I tried feeding Loghan and was relieved when she ate. Unfortunately, a few minutes later she had one of her projectile spit-up episodes and then was so tired she fell asleep in an instant. This is when reality set in – I needed to admit her.

I called the clinic and had her nurse (who I love) start the process to get her admitted to the castle. If the situation wasn’t already stressful enough, the two most important men in my life (my husband and my father) WERE NOT HOME. Not only was my husband in another state, but my dad was in another country. I decided to call my mother-in-law, also Loghan’s daycare and grandma. Of course Linda rushed over and helped me put together a bag and get the dogs settled (we have two huskies) and out the door we went.

When we checked in at the castle they sent in a couple of nurses and a resident to talk with us about what was going on with Loghan to try and figure out what was wrong and where to start. I’m now going to preface this next part of the story by saying I already felt like no one was listening to my concerns prior to arriving at the castle and it was no different at the castle. This day and the next couple days are some of the most frustrating and stressful moments of my life.

First things first, when the resident was talking about Loghan’s condition he used the term “Failure to Thrive”. I don’t know about you, but those are not easy words to hear whether you are a first time parent or not. The reason for that terminology, as I was told later, was because Loghan was having trouble gaining weight. On that same note, she had never lost weight either and she was following her own growth curve.

After talking over all of the symptoms with the castle staff, the decision was made to put in a feeding tube. This was not my decision. We sat in our room for at least two to three hours waiting for them to get Loghan ready for a feeding tube. This was their masterplan on what they thought they needed to do to figure out why she was having such difficulty gaining weight. Not only did they want to put in a feeding tube, they also wanted to take her completely off my breastmilk and on formula only. If you are a breastfeeding mama you are probably crying right now, like I was. It was one of the hardest things to hear and I made sure they knew I was against it. The formula they wanted to use was also one we had tried mixing with my breastmilk in the past to fortify it and she would not drink it. She then went on a bottle strike for a week after we tried to force her to drink it for a couple of days.

After I lost the battle with the feeding tube and breastmilk, the time had come to put the feeding tube in. I went with Loghan and held her while they put it in. This was optional, but I wasn’t letting her out of my sight. Soon after that, they hooked her up to start pumping in the formula, but before each tube feeding they wanted me to try to bottle-feed her first.

Let me tell you what I told them was the problem with this plan. There were a few things actually. One, was the formula itself. I told them she wasn’t going to drink it. Second, they wanted ME to try to BOTTLE-feed her each time prior to using the feeding tube. I laughed at them and said she wasn’t going to take a bottle, especially from me and probably not from them either. Third, they wanted to feed her every three hours. She never ate every three hours for anyone nor did she act hungry in that amount of time.

As I lost more battles with the castle staff, the time came to feed her for the first time and I was dreading it. I tried the bottle and she wouldn’t drink it. The nurse tried the bottle and she wouldn’t drink it, so, on we went to starting the feeding tube. Within five minutes of the feeding tube being on I had to page the nurse because she started spitting up. They came in and adjusted the settings and tried again in another three hours and the same thing. Again, they adjusted the feeding tube and again she spit up. Finally, they decided to take an x-ray to ensure the feeding tube was in the right place. They moved the feeding tube up a bit after that and she still spit up after turning it on. I had to plead with the nurse to skip trying the bottle at 2am so we could all get some sleep. Loghan was exhausted and I was exhausted and upset that no one was listening to me and I’m sure her daddy was getting tired of my texting him all night long. He was still stuck out of town on business trip.

Below are some pictures from our first couple of days in the castle. From left to right: Loghan and me being sleepy taking a simu-yawn selfie, my sister Andrea with Loghan (after the feeding tube was in place) and Loghan just being cute.

After an exhausting night it was time to move on to plan B, which no one knew what would be until I mentioned to one of the doctors the same thing I had told the acute care nurse, pediatrician and GI doctor over a month ago – that I could feel gassy bubbles under her ribs. Cue the incidental diagnosis. That same x-ray they reviewed for the feeding tube placement was re-reviewed and then they came in and explained that they wanted to do an additional x-ray because they thought they saw something, but said it could just be something on the outfit she was wearing. I immediately thought something was wrong and then when they came to do the second x-ray they didn’t allow me to be in the room like they had before and I instantly started to worry. Then, when the x-ray was completed, I asked the nurse if we could feed Loghan (because I was trying to keep her on her schedule as much as I could) and she asked me if the x-ray team had been in to talk to me yet. I told her that they had not and she told me that they would be in shortly to explain. RED FLASHING LIGHTS started going off!

A few minutes later, a couple nurses entered the room and I knew something bad was coming. It still kind of feels like a dream but I remember it like it was yesterday. I was in the room with one of my best friends, Krista and Linda. One of the nurses proceeded to tell me that in the x-ray it was “cloudy” where it should be clear by Loghan’s left lung but they couldn’t tell me anything more than that and a doctor would be in to discuss it further. Of course, the minute the nurse leaves Krista is on her phone using Google to try to find out what the nurse was eluding to and we come up with a diaphragmatic hernia. I know, we should not self-diagnose, but the doctors were taking, what felt like forever, and I was super impatient and stressed out.

A while later an entourage of doctors gathered in my room to explain that Loghan had, none other than, a diaphragmatic hernia. If you have followed this story from the beginning, please excuse the explanation. The doctors explained that Loghan had a hole in her diaphragm and a majority of her intestines traveled up under her left lung making it hard for her to breath. I was horrified and relieved all at the same time. I was terrified because Loghan was going to have to have a major surgery but felt a bit of relief that someone had finally figured out what was wrong. Four and half months later and I finally had my answer, but now the hard part.

I had to call Paul – remember he is out of town on business. I called him up and he was just boarding his flight so I had like a minute to get out that Loghan had a hole in her diaphragm and had to have surgery and then he had to go. That’s it. That’s all the information I could get to him. I can’t imagine what was going through his head, especially when he proceeded to get stuck on the runway for an extra two hours.

After I called Paul, I called my dad, who was in Mexico. He tried reassuring me that everything would be okay and that he would be up to the hospital as soon as they got home. After that, my Aunt Betty Jo and Sister, Andrea came up to the hospital for additional support. I didn’t want Loghan to get the feeling that something was wrong – I needed to be strong and happy for her.

Finally, what seemed like forever, Paul walked into the hospital room. The minute he walked in the door the three of us held each other and cried, cried…and cried some more. Well, Paul and I cried, Loghan probably thought we were crazy, but the only thing that mattered was that he was there with us.

That night we hung out as a family. There were more tears and questions we wanted answers to, but, there were also some laughs and lots of napping! Loghan was snuggly with her daddy and my nerves were finally starting to settle a bit. My mommy heart had taken a beating but I was just thankful we were all together.

After that, it was time to prepare for surgery, which I will talk about in the next post of this series.