Dempsey Update

Dempsey has already been home for 3 months!! Our little 5-month old has brought so much joy (& tears) to our little family. Though we don't have a ton of new information to share, we have gone to A LOT of doctor's appointments over the last 3 months and wanted to update everyone on how Dempsey is doing and how life has been with him home.

We also want to thank everyone for your kind words, thoughts, and prayers after our last post. As I was writing it, I told Nick that mayyybe 1 or 2 people might read it so we were completely shocked by how many of you read it and sent your love. It's been a hard year for us and the challenges associated with Dempsey are not over but it is so encouraging to have such great people in our lives.

Life at home 

When Dempsey came home from his second stay in the NICU at the very end of November, he was sent home on oxygen (fairly common among NICU babies). We had a large home oxygen tank in our apartment that had an extra long tube that allowed us to carry him around. We also had several portable tanks that came with a little backpack for traveling. Because Dempsey still has reflux episodes, he was also sent home with a hospital grade pulse oximeter. This allows us to monitor his oxygen saturation levels and heart rate at home. The idea was that if Dempsey had airway-blocking reflux, we would be alerted and could help him. THE PULSE OX IS OUR BEST FRIEND. Unfortunately, even with the pulse ox we were still too scared to sleep while he was sleeping. I had a lot of anxiety for the nighttime and kept getting the feeling that something terrible would happen. I was so afraid that the pulse ox alarm wasn't going to be loud enough to wake me (even though we have it turned up to full volume). So for the first several weeks after Dempsey came home, there was someone awake with him around the clock. On most nights, Nick & I would split the night in half (he would stay awake to keep an eye on Dempsey while I slept and then we would switch). This only worked while Nick was off of school in December. To help us stay awake, the person with Dempsey would stay in the living room with all of the lights & TV on while the other slept in the bedroom. We also had a ton of help at this point from family members. All of our parents would take turns visiting to help with 3 hour shifts at night. In the first 1-2 months that he was home, he still had frequent airway-blocking reflux but he was slowly learning how to handle it better and protect his airway on his own. Since he wore his pulse ox at all hours, we were able to catch it early and help clear his airway if needed. After working with his doctors (more on that later), now he can typically breathe through the reflux and only occasionally requires help (just last week he had a pretty scary moment where he had a really hard time breathing- one of our favorite baby items has been the NoseFrida to help clear the formula/mucus). In the last month, we started using the pulse ox only at night (so unfortunately, I don't really nap because he often falls asleep during the day without the pulse ox on and I am still not comfortable sleeping while he sleeps without it). Feedings require a little extra time/attention as well because of the reflux. We have to make sure to burp him frequently and then hold him upright for 30ish minutes after each feeding. And with how often babies eat, the time we spend holding him upright really adds up! And then the frustrating part is no matter how much we hold him upright or try and keep him from throwing up, he usually ends up throwing up multiple times between feeds anyways. So we end up soaked and smelly.

Dempsey's pulse ox/our best friend (Nick is reading The Nazi Doctors in case you were wondering about that...). 

Here you can see Dempsey's large home oxygen tank on the right and a bunch of portable oxygen tanks by the dresser. 

The frustrations of the oxygen tube. We were constantly adjusting and fixing it. 

After clearing his nose

Sleepy Nick after staying up for his turn watching Dempsey

Several factors led our pediatrician to recommend that we keep Dempsey as isolated as possible (factors= premature babies handle illness differently- a common cold could hospitalize him, we don't yet know exactly what Dempsey's genetic diagnosis is and how illnesses plays into his syndrome- more on Genetics later, it's an especially bad flu season, etc). Nick went back to school in January and I stay at home with Dempsey. As all parents know, it is so easy to get stir-crazy staying in with a baby all day. I try to take Dempsey on walks but winter weather doesn't always make that possible. He is somewhat of a colicky baby and has an extremely hard time relaxing enough to fall asleep for naps. I really feel that his unexplained fussiness has to do with some discomfort that we just can't see or help with (like pain from the reflux, upset stomach, or other health complications that we don't know or understand yet). I had planned on working part time a few months after Dempsey was born but unfortunately, his schedule doesn't allow for it right now. Between frequent pediatrician appointments, extra shots, physical and occupational therapy and various specialist appointments, he has something on the calendar at least 3 times a week. Though we still try to keep him isolated, we have started bringing him out occasionally (to church or the store) while keeping him covered. Dempsey and I were getting excited to go on the annual Anderson trip to Mexico in March (we even got Dempsey's passport) but the doctor strongly advised against the trip- and we want to do what's best for Dempsey (though I'm a little bummed about it)! Because he is at a higher risk when it comes to RSV, Dempsey gets a monthly SYNAGIS shot to help protect him from RSV through virus-fighting antibodies. The medicine is delivered to us the day before the shot and then a nurse comes to our apartment to give it to him (he does not like it! the fluid is thick like honey going through the needle). I spend a lot of my time coordinating things like that, picking up his prescriptions, and trying to figure out hospital bills (warning- they send bills to collections pretty quick while you are trying to deal with life). But generally, we are so grateful for the progress that Dempsey is making. We see the Lord's hand everyday, though sometimes it seems to be hiding ;). The reality is that these little things add up to be pretty exhausting and frustrating, and it's easy to forget how much progress he has made. But when we do reflect on that progress, it's a lot easier to see the many blessings and miracles that continue to happen on a daily basis, and then we feel bad about getting frustrated. It's an emotional roller-coaster haha. Dempsey did get off oxygen in mid-January which was a major development and made life significantly more convenient for us! He is moving, smiling, kicking, and even laughing! 

Cuddles at home

Happy little guy

The day that he got off oxygen!

Dempsey's first laugh

Doctor's Appointments & Therapy

Dempsey has had follow-ups with several specialists, mostly through Children's Hospital. As luck would have it, we live very close to Children's in Colorado Springs. This was a HUGE blessing because we are still too scared to drive Dempsey anywhere without someone in the back seat with him to catch his reflux. With Nick back in school, I take Dempsey to most of his appointments by myself so can't drive. Children's is just a 15 min walk from our apartment and his Pediatrician is just a 30 min walk. We've had a few follow-ups in Parker as well (Nick drives with me to those). We have found Children's to be a great system to work with. They have an online portal called MyChart that I use for appointments, prescriptions, communication with doctors and test results. They always provide an after visit summary which is great because Nick can't go to every appointment but he can read the doctor's notes.

Because Dempsey dropped under 3 pounds after birth, he automatically qualified for a program called Early Intervention. It is awesome! Once a week, an Occupational/Physical therapist and/or Dietician comes to our apartment and works with Dempsey for an hour. 

Especially at first, we had a lot of appointments with the Pediatrician as well. She is awesome and we always feel sooo much better after we talk to her. She recognizes that Dempsey has some special needs and she has helped a lot with Dempsey's reflux and constipation (yes, he was majorly constipated throughout December which made his reflux even worse). We had to see her more frequently to make sure that Dempsey was growing. She shows us his growth chart at each visit, both for his actual age (4 months now) and corrected age (a little older than 5.5 months). The goal is that preemies should catch up to the size of their actual age eventually. Even corrected, Dempsey is on the very small side in most categories. Although his head was in the 75th% which is hilarious (for his corrected age, but still). They aren't too concerned with his growth because he is trending up with each appointment which is great. We also have to keep in mind that his syndrome may play a role in his smaller size.

Walking to Children's in Colorado Springs

Dempsey is used to getting poked from shots, IV's, blood tests, etc. Though his tragic cry makes the experience hard for mama every time! 

Shots always make him extra sleepy.

A little size perspective with his cousin (isn't she adorable?). Dempsey at 5 months (<1%) and Brooklyn at 2 months (99%- she is going to be tall! as are all of her siblings). 

Neurology

The first specialist we saw was a Neurologist back in December. The appointment was in Parker so Nick got to go with me. To re-summarize some info from the last post, there were a few reasons that Dempsey was referred to a Neurologist. 

1. Large fontanelle (soft spot) and extra fluid in his skull.
2. Brain maturity (Behavior, MRI and EEG performed in the NICU showed immaturity)
3. I forgot to mention this in my last post but they also found a small clot in Dempsey's brain while in the NICU. 

The Neurologist that we met with was pretty hilarious. He kept calling Dempsey a stud, didn't really filter his language and used some funny terms (that Nick & I have since reused). For example...

"Poor kid is sucking o's!" = on oxygen

"He's just over there smashing groceries" = I was feeding Dempsey his bottle

During the physical examination, Dempsey threw up (large amounts) on the Neurologist a few times. Typical but pretty funny. The information that we got from this appointment was what we expected- Dempsey is still a little too young to know exactly what's going on. He addressed the concerns mentioned above and said that Dempsey's large fontanelle is probably due to a genetic syndrome and it may help with the diagnosis. As for the brain maturity and clot, he said that it is pretty hard to determine anything at his age. Dempsey will probably not get another MRI/EEG until he is at least 2 or 3. In the meantime, we will see the Neurologist again 6 months from his December appointment. 

Here are the doctor's exact notes to summarize the appointment:

"I think he's a stud. Tone is fine. Head size is nice, fontanelle may help indicate [genetic] diagnosis."

You can really see Dempsey's heartbeat since his fontanelle is so large.

Gastrointestinal

Although we found a few solutions to improve the severity of his reflux in the NICU, Dempsey was still having some major issues so we were referred to a pediatric GI doctor. The combination of his reflux and constipation led us all to believe that something needed to change. 

Constipation- Throughout December, Dempsey would go days without pooping so he was extremely uncomfortable, fussy, and extra reflux-y. We tried all of the tricks recommended by the call-in nurse (tummy massages, legs squats, warm bath, rectal thermometer,...) but nothing seemed to work. We started trying a few new solutions with guidance from Dempsey's Pediatrician (adding milk of mag to his bottle, glycerin suppositories) and those did work! But it got to the point that we had to use a glycerin suppository every other day in order to get him to poop at least every 48 hours. This isn't really a sustainable solution so we switched to giving him some liquid stool softener in his bottles twice a day. This seemed to work so we continue to give him lactulose every day to keep him regular. 

Our Pediatrician and GI doctor suspected that the combination of reflux and constipation might be due to something wrong with Dempsey's anatomy so an upper GI study was ordered. On the day this was performed, I had to make sure that Dempsey didn't eat anything for 4 hours beforehand (which wasn't fun because he is very used to a 3 hour schedule). I had to wear a lead vest while they fed him a bottle of barium and watched it move through his system (Dempsey was pretty much screaming the entire time and I was in charge of holding his head and keeping him calm... which was an impossible task). It was so interesting- On the screen I was able to see the little bit he ate go down his throat to his stomach and within seconds, come right back up! The radiologist said, "Yep! And there's that reflux!" He also noted a slightly low lying position of the ligament of Treitz (upper intestine). This can cause major problems if the position gets worse but for now, he noted it as an anatomic variation. In a second followup with the GI doctor, he said that it's definitely something to keep an eye on (basically, if his puke is green or another bunch of terrible things happen down the road, that it may be because the intestine is twisted so we just have to pray that doesn't happen)!!!

Reflux- A major help to Dempsey's reflux has been his reflux medication (a compounded variation of Prevacid), which particularly helps with the pain. He gets it twice a day and we are constantly adjusting his dosage with his doctors as he grows or gets worse. 

We also knew that Dempsey had an allergy to milk protein. Therefore, I was on a dairy-free, soy-free diet so that I could occasionally breastfeed in addition to his hypoallergenic powder formula. One of the first things that the GI doc brought up was that some babies with milk protein allergies also show improvement when corn is removed from their diet. So we tried a new formula that is pretty much as hypoallergenic as it gets! It comes in "ready to feed" liquid form (in liter containers). We quickly learned that the investment in a bottle warmer was well worth it since we had to store open bottles in the fridge and wait for the bottle to heat up while Dempsey impatiently waited. We did see some improvement when Dempsey was switched to this new formula. Not only in the amount of reflux but he seemed to gobble it down faster (he was seriously the slowest eater of all time). So they added corn to his list of allergies! Unfortunately, both doctors told me that pretty much everything has some form of dairy, soy or corn so if I wanted to keep breastfeeding, I would essentially need to grow my own garden and exclusively eat from that (not realistic in our apartment). They reassured me that though I can't breastfeed anymore, the few months that I did will help Dempsey and he will be just as healthy on formula! I was pretty bummed at first but Dempsey's reaction to the new formula was worth it! 

Dempsey occasionally still has some feeding issues. There are times when he is so hungry but screams with or without the bottle in his mouth. The physical and occupational therapists were over at the apartment the other day during one of these hard feedings and they suspected that he was either aspirating or feeling overwhelmed/disorganized during the feeding. The reality is, there are still a lot of unexplained issues but we are working through them and continuing to see the GI every few weeks.

From the appointment notes: "The following issues were addressed: Acid reflux disease, Constipation, and Feeding problem."

At his first GI appointment

Young Dempsey getting medicine

Cardiology

Dempsey saw a Cardiologist in January as well to check up on his 2 heart murmurs. He got another echo and EKG (again, I was in charge of holding his head and keeping him still although he was much calmer during these tests than he was during the upper GI when he was starving)! The good news is that one of the murmurs had resolved on it's own! He still has a small patent foramen ovale (the other murmur) which the doctor said was normal in about 20% of the population and it should resolve as well by the time he is 1. He will have another echo and EKG in 6 months from the time of this appointment. 

EKG

It left a few marks but he's a champ

Ophthalmology

Last month we saw the same Ophthalmologist that examined Dempsey in the NICU. Although he was opening his eyes a lot more frequently than he did in the NICU, he still isn't able to open them all the way. I'd say that most of the time when his eyes are open, about 75% of his pupil is exposed. Since visualization is so important to the development of an infant, we were pretty concerned about this. Dempsey got his eyes dilated and the Ophthalmologist did an examination. He did note that Dempsey has ptosis in both eyes and as a result, astigmatism in both eyes already. He also noted the frontal bossing in Dempsey's skull (his forehead protrudes a bit) and said that the bossing could be adding pressure on Dempsey's eyes, making it too hard for him to open them all the way. Interestingly, he also mentioned that he thinks the Geneticist will find Dempsey interesting (that seemed to be a theme among all of the specialists that we saw). Basically, if things do not improve, the Ophthalmologist has a few options for proceeding: 

1. Dempsey might need baby glasses to correct the blurriness from the astigmatism so that it doesn't affect his development. (Though this wouldn't be the end of the world because baby glasses are adorable).
2. Dempsey tries with all of his might to open his eyes more by raising his eyebrows. The Ophthalmologist said that there is a surgery that connects the muscle that controls his eyebrows to his eyelids so that when he raises his eyebrows, he would actually be able to open his eyes more. This is an option for down the road. 

We will see the Ophthalmologist again in a few months. 

Side note: When Dempsey has bad reflux, his eyes open wider than they typically do for whatever reason (like he's scared) and they get all red and watery. We call them his "reflux eyes" and it is the saddest thing. 

We love this pic of him in the eye exam chair.

This picture shows how wide Dempsey typically opens his eyes

Urology 

Our first Urology appointment is in April. They will see if Dempsey's big enough to do the surgery to fix his hypospadias (and get circumcised).

Genetics

The big one. We were looking forward to this appointment ever since Dempsey was born. We were especially eager to meet with the Geneticist after our Pediatrician, the NICU doctors and each specialist told us that they felt Dempsey may have a genetic diagnosis. We didn't expect much out of the very first appointment because Genetics is very complicated. But the Geneticist definitely did her homework with Dempsey's history and was as brilliant as everyone said that Geneticists are! We talked to a Genetic Counselor first. We discussed family history (which wasn't much in the way of Genetics) and some of Dempsey's unique characteristics. Then the Geneticist came in to do an physical examination of Dempsey. She pointed out several symptoms that we never noticed before (new ones are in green)!

1. Fused toes (his second and third toes are slightly fused together on both feet).
2. Curled fifth finger (his pinky finger is naturally curved on each hand).
3. Wide-spaced nipples
4. Arched eyebrows
5. Simian Crease in both hands
6. Large fontanelle/frontal bossing
7. Ptosis in both eyes
8. Feeding issues/reflux
9. Growth restriction
10. Small/disproportionate size
11. Hypospadias 
12. Heart murmurs

We were surprised to hear her say, "Your son definitely has a genetic diagnosis. And I can't say that to every parent." She also confirmed that Dempsey does not have Achondroplasia (Dwarfism). After a quick break to gather her thoughts, she already had a list of the first round of syndromes to test. There are 4-5 syndromes being tested right now- some are closer matches than others. Some of the syndromes are more rare/severe than others. Though almost all of the syndromes have some level of health complications or mental/learning disabilities associated with them. We decided not to worry about these syndromes until we know Dempsey's diagnosis (no use freaking out about the symptoms of a syndrome he doesn't have). In fact, we don't even know the name of all of the syndromes. None of them were a perfect match. Each syndrome has a few of the symptoms from the list above and each syndrome has symptoms that Dempsey does not have. That's what makes Genetics so hard. We have done some research on the syndrome that is #1 on her list right now. It's one that is not quite as rare as the others- it is associated with heart issues and an increased risk of cancer (particularly Leukemia), about 50% of the people with it have some level of mental disability, most have learning disabilities, and appearance is affected (for example, typically short in stature) but there is at least a chance of a relatively normal life. We will certainly share more if this ends up being Dempsey's diagnosis. We were told that we will get the first round of results in 1-2 months from the time of the appointment in early February. If all results are negative, they will do another round of testing on a different set of syndromes until they find an answer or we choose to discontinue testing. 

They had to take a lot of blood (well, a lot for a baby) in order run their tests. The first vein that they poked did not provide all of the blood that they needed (which I guess is normal for his size) so they had to poke him a few times. Nick and I had to help hold him down :(. So far, we have the results of 5 different blood/radiation tests in Dempsey's MyChart portal but we don't know what they mean! Some of them seem to be normal, while others show numbers outside of the "normal range". I'm sure we will learn what they mean at our next appointment. 

She also ordered a Skeletal Survey (x-ray of Dempsey's bones) to see if his measurements are still disproportional like they showed during pregnancy. I took Dempsey to Radiology the following week. Again, I wore a lead vest and held him in position while they took several images. They pushed a clear paddle on his wiggly hands and feet to get clear pictures. These were the results of the x-ray:

"IMPRESSION: Rhizomelic shortening without skeletal findings of achondroplasia."

which basically says that his long arm/leg bones are short/disproportionate but his skeleton does not show other signs of Achondroplasia. 

From the Genetics appointment notes: "The following issues were addressed: Short stature, growth retardation; Congenital anomaly of finger; and Fused toes."

Hearing the Geneticist say that our son definitely has a genetic diagnosis brought both Nick and I a lot of mixed feelings. Initially, there was almost a sense of relief that we would be getting answers- that there was a reason that we could point to that explained why things have been so hard. But that relief was pretty short-lived when we realized it meant that the challenges are far from over. This is something that will be part of Dempsey for his entire life. Dempsey didn't just have a list of unique characteristics, there was likely some sort of mutation that could affect his health and ability to learn & function. Once we have a diagnosis, we will generally know what to look out for but every person with each diagnosis is a little different. We won't ever know what to expect (which is true of any parent but whyyyyyy?). We know that some parents have it so much harder than us so I never want to come across as ungrateful for the tender mercies that we've seen with Dempsey. There are so many parents of children with Down Syndrome, Autism, cancer, and other illnesses/disorders/disabilities. We hope to learn from them (& any parent) and make each other stronger. 

There is an LDS Primary song that has been pulling at our heartstrings lately. When I was pregnant with Dempsey and we were told that he might have Achondroplasia, my niece was actually singing this song in the car on the way to a hike and I was bawling my eyes out. I've always been extra sensitive/emotional when it comes to bullying or making someone feel different (I seriously don't usually cry during movies but I cried during "Happy Feet" when the main penguin was made fun of because he couldn't sing like the rest of the penguins). Anti-bullying ads are my kryptonite. It's really hard for me to think about Dempsey looking or feeling different. In the end, I know our differences are what make us special and I feel that Dempsey is going to be able to do great things. And for every mean kid out there, there will be tons of amazing ones who will be great to Dempsey.

I'll Walk with You

Words: Carol Lynn Pearson, b. 1939. (c) 1987 IRI 

Music: Reid N. Nibley, b. 1923. (c) 1987 IRI

If you don't walk as most people do, 

Some people walk away from you, 

But I won't! I won't! 

If you don't talk as most people do, 

Some people talk and laugh at you, 

But I won't! I won't! 

I'll walk with you. 

I'll talk with you. 

That's how I'll show my love for you. 

Jesus walked away from none. 

He gave his love to ev'ryone. 

So I will! I will! 

Jesus blessed all he could see, 

Then turned and said, "Come, follow me." 

And I will! I will! I will! I will! 

I'll walk with you. 

I'll talk with you. 

That's how I'll show my love for you.

A family friend also sent us the classic poem for parents of children with disabilities, WELCOME TO HOLLAND by Emily Perl Kingsley, which we found to be beautiful as well. This is not at all what we expected when we decided to grow our family but we love our little Dempsey Bug and he is worth every hard moment.

As we learn more about Dempsey's diagnosis, we will definitely keep you informed. Thanks again for your love and support. Hopefully we will know more in a few weeks! 

Happy right before all of the blood was drawn.

Shortly after being told Dempsey has a genetic diagnosis

Here you can see Dempsey's frontal bossing

Just some cute pictures of Dempsey