July Update

Lucas had his eye doctor appointment and his geneticist appointment. The retinopathy of prematurity is completely gone and his vision looks great. The next appointment is in September. The Geneticist said that Lucas does not appear to have the form of dwarfism called Rhizomelia. She believes that Lucas may have a condition known as hypochondroplasia that runs in families. Apparently, she believes I have it too and that I have passed it onto Lucas. However, if this is the case, we have a very, very mild form of it as we don't necessarily fit the description. At this point, the best way to tell is for me to go in and get the full body x-ray like Lucas did to have my bones measured. The only obvious indication is that my pinky fingers have only 1 crease where the joints bend, where most people have two. She stated that these diagnosis are more easily made in adults because the bones are done growing. The other option is to wait until Lucas is two and perform another scan. I personally do not believe this is the proper diagnosis because Lucas and I both appear to be proportionate, though shorter than possibly we should be.

On the eating front, for the last month, Lucas has been refusing to suck on the bottle or take oral feedings of his formula. We have started on level 1 baby foods to introduce new flavors and he seems to be taking them well. He doesn't seem to like it when we give him a taste of new textures like a small piece of hashbrown or cupcake. He reacts like we're sticking a worm on him! Hopefully as he gets older, this will get better. We continue to work with a feeding therapist at the daycare. He also now has a physical therapist through the daycare and is enrolled in OPS. OPS provides a program called the Early Developement Network that helps kids with learning challenges. He has a physical therapist and occupational therapist through this program. The hardest part about that is remembering all the appointments & keeping the house emaculate for the home visits.

Lucas has outgrown his 0-3 months clothes for the most part and is now working on the 3-6 month stuff depending on the brand. We're working on tummy time- lifting his head and trying to get him to use his arms to push up & sitting up time in the bumbo chair. Lucas has a significant gross motor skill delay and we're hoping with work we can improve this. So far he's making great growth progress. He reaches for objects, tracks objects, smiles, even laughs now. He knows his mommy & daddy for sure!  He has his own way of talking that is just so cute! Love my roo bear!!!

 

What is hypochondroplasia?

Hypochondroplasia is a form of short-limbed dwarfism. This condition affects the conversion of cartilage into bone (a process called ossification), particularly in the long bones of the arms and legs. Hypochondroplasia is similar to another skeletal disorder called achondroplasia, but the features tend to be milder.
All people with hypochondroplasia have short stature. The adult height for men with this condition ranges from 138 centimeters to 165 centimeters (4 feet, 6 inches to 5 feet, 5 inches). The height range for adult women is 128 centimeters to 151 centimeters (4 feet, 2 inches to 4 feet, 11 inches).

People with hypochondroplasia have short arms and legs and broad, short hands and feet. Other characteristic features include a large head, limited range of motion at the elbows, a sway of the lower back (lordosis), and bowed legs. These signs are generally less pronounced than those seen with achondroplasia and may not be noticeable until early or middle childhood. Some studies have reported that a small percentage of people with hypochondroplasia have mild to moderate intellectual disability or learning problems, but other studies have produced conflicting results.

Appointments, appointments

Lucas is still doing well adjusting to his home life. We started daycare at the Children's Respite Care Center which specializes in children with physical and mental development issues. Its one of the few places that will feed Lucas using his g-tube and luckily, Medicaid pays for it until he's one. He's still not eating half or more of his food orally (by bottle) most days, but when he eats, he's doing much better at not choking and we've gotten him to where he can eat breastmilk without the formula mix without choking. He has had some crazy spit up moments, like today when he spit up 5 times within 2 hours, but we've been lucky too that he hasn't had a fever yet or any infections.

At his last doctors appointment, the doctor said that Lucas hasn't been gaining enough weight. We increased his feeding volume again to get him more calories. We hope to get his weight gain under control soon so we can start introducing baby food. She said there is a small window for preemies to get them eating baby food before they start having issues accepting new textures and tastes so we want to start that very soon. Lucas got his 6 month vaccinations at this appointment too, which went better than I thought. He screamed for a few minutes and then went to sleep!

We have several appointments coming up. He has an appointment with the feeding specialist, the surgeon to check his g-button and see if he needs a bigger one, the bone study to measure his arms and legs,  the development evaluation with the Omaha Public Schools developmental network program, ophthalmologist apt. and the appointment with the geneticist to read his bone study. On top of that, we have mommy appointments, daycare scheduling, holidays and birthdays.  I think that the two things new parents should know is A. you will be tired for a long time and B. You will always be running around -- and yet, not burning more calories than before! Its still worth it :)

new pictures

Momma, Privacy Please

Hi Cheryl!

I'm sleepy sleepy

adjusting to home

Lucas has fit right into our family over the last two weeks. He has been sleeping and pooping and crying like a regular baby. His eating is getting better in that he doesnt choke very often and he's breathing while he drinks from the bottle like normal babies do, but he still only attempts to eat 2-3 times a day. When he does eat, he takes 1/2 to a whole bottle which is good. His g-tube site has healed well and our follow up is with the surgeon on Tuesday. They may replace his tube with a fresh one which is just a little more complicated than changing a belly button ring... So, not too bad. The doggies are a little jealous of the attention - mostly Suka, but are also enjoying being let out in the middle of the night. They don't mind his crying at all. We have taken our first walk, first zoo trip, a few baths at home. Lucas is still gaining weight and doing well. We see the pediatrician tomorrow to see about changing his feeding volumes & maybe formula, but nothing major. Lucas has been a bit fussy, but we think he's just growing. We won't be updating the blog as often because our hands are full and there isnt as much to report, but as we get updates on eating, eye doctor and skeletal survey I will post. Most likely it will be mainly pictures. Skeletal Survey- June 18 Optomologist - July 5 Genetic (review of skeletal survey) -- July 16

happily exhausted

Weight: 10 lbs, 10 oz Length: 21.5 inches We've made it almost 3 full days! It feels great to have Lucas home and to avoid going to the hospital to visit him. There's this fulfilling aspect of taking care of your child all by yourself! We've had one nurse's visit, met our pediatrician- very nice lady- and have been signed up for WIC to help get the specialty formula Lucas needs to gain weight. They did their charting and show that Lucas is in the 10th percentile for height and 25th percentile for weight for other preemies his corrected age. That means he's smaller than most other babies his corrected age (two months). But, when comparing his length to his weight, baby Lucas is considered a healthy, chubby little dude. He has been spitting up with every feeding but the doctor said she wasn't concerned because he is still gaining weight and he's not choking when he does it. Lucas is also sleeping a lot and starting to tell us more often when he is hungry. He is still only eating orally four times a day, but usually takes at least half the bottle when he eats. Mommy and daddy are definitely getting less sleep because even if Lucas doesn't wake up during the night, we still have to feed him every three hours, but in a few weeks, we can start working on getting Lucas to take more of his food while he's awake during the day. Our next appointments are with the surgeon for followup on the g-button and the feeding specialist on May 8, then the pediatrician again on May 11. I'm back to work next Tuesday with an adjusted schedule to allow me to work from home. Brandon's mom will also be helping watch Lucas for the next few weeks. I may take advantage of some nap time in there since getting off at 11, doing the 12 AM & 6AM cares will wear me out fast. Thanks again for all the well wishes. Its all coming together now!

I'm home!

Lucas came home around 2 pm Tuesday afternoon. The day was a blur unpacking, feeding, organizing, feeding, etc. We are super excited to have him finally here!. He mostly sleeps through the night but, we still feed him every 3 hours. At night he is fed through the button mostly. He's had some trouble with refluxing during his feeds and they almost kept him another day because he lost weight two days in a row. We agreed to two home health visits a week for two Weeks and see the pediatrician on Friday to get him home. The doggies will love that!So far, I'm both tired and yet too excited to sleep. The latest concern besides his weight is related to the first bone study. He has another scheduled in June and an appointment with the geneticist in July. They're concerned he may have a mild form of dwarfism called *rhizomelia which results in the shortening of or lack of symmetry between the limbs. We will find out more with time this summer.

Lucas's g button surgery is tomorrow. He will hopefully be home by May 1st. We have a lot of training to get through, but im cautiously optimistic. I cant wait to show him his room! Its been waiting a long time for him. Even though he's coming home, he will still need some isolation. We don't want him getting sick and editing up back in the hospital. He can still get overstimulated so caution is necessary. We will continue following the rule of just a few people at a time. For those who smoke, we have to take additional precautions due to Lucas's lung disease. We've verified he's smoke sensitive. This includes hand washing but also keeping him away from clothing that smells like smoke. If you smoke, plan to visit and hold the baby please check with us on precautions needed.

9 pounds

Lucas officially weighs 9 pounds! His head curcumference is 14 1/2 inches and length is 19 inches. He is still at children's hospital and did not get surgery. He has had many tests to determine what factors are playing into his ability to eat or not eat. The staff here ended up adding rice cereal to his breast milk every 15 ml and feeding him in doses. this has enabled Lucas to swallow a bit better and he's had more than three full successful feedings in the last few days. He is still on pathway x4 but since he is showing progress he will continue working on eating here. Surgery for the feeding tube is off the radar for now. A bone study they did showed that Lucas's upper bones in his limbs are shorter than they should be compared to the lower ones and there is a length difference between the right and left sides. After a second opinion, the doctors decided that it is not a significant enough issue to worry about now because they cannot determine if its an issue of prematurity or something else. He will be reevaluated in a few months. So, now we continue growing and working on feeds. He is meeting all the markers for a 5 week old development wise. For all his development milestones we will use his corrected age (due date of March 7) until he is two or three.

April fools and happy Easter

One thing you never quite get used to is the uncertainty. Lucas did not have surgery Tuesday and will not be having surgery this week most likely. He is being evaluated by the staff here. He had two big tests Monday and Tuesday to check that his stomach and parts are all where they should be and to see how he is eating. They confirmed what we suspected which is that he is aspirating his milk when he eats. Right now they have started putting rice cereal with his milk to thicken it to try to help him eat better. It seemed to help initially but now he's back to just taking a 10-20 ml by mouth. Because its Easter weekend, his surgery discussions will take place next week but we had our first consult with the surgical rep today and all agree that unless Lucas miraculously improves his eating over the next few days, he will still need the g button. Its very likely they'll also do the surgery to shrink the opening from the stomach to the esophagus to help reduce the likelihood of aspiration and spitting up. Its been an emotional and trying week, more than I expected. we are ready for our son to be home and continue to hope for the best. He did come off oxygen about an hour after he arrived at Childrens and has done very well off it. we will post more when we know more. Happy Easter from Lucas and family. Thanks Donna for the card!

surgery and other updates

*correction: Lucas's surgery has been postponed pending testing, probably til Friday.

Lucas is scheduled to be transferred to Children's hospital tomorrow. He will have surgery on Tuesday to put a g-button into his stomach so that he can come home within 1 to 2 weeks. The g button is a port that goes straight into the stomach to which a tube attaches and allows us to feed him while he's sleeping and when he won't eat. This marks a turning point towards bringing him home and to his care. we will have to learn how to feed him a new way and also things like the CPR and how to read the monitor he will come home on. He will most likely remain at Children's until he comes home. Updates today are that he weighs 8 pounds 1.4 ounces, he is 19.5 inches long and his head is 14 and 1/4 inches in circumference. He's grown out of all his preemie outfits and almost his newborn clothes.

Important things to remember for us are that soon when he comes home, it does not mean he is not fragile. Because he is a micro-preemie, he will be at a higher risk for infections, and thus cannot be around a large population of people or kids. He should have limited contact with people who have colds. Kisses on his face and hands are no nos for all but mommy and daddy at this point, but you can give kisses on his feet if you cannot resist (trust me its hard). Hand washing is critical and we will have masks as well as hand sanitizer at home. He will be coming home on oxygen as well. This means conventional daycare is not an option. I will be doing all I can to adjust my schedule to keep him at home until hopefully he comes off the oxygen. We have a lot of doctors visits and developmental visits in our future but we're very close to bringing him home!

There's more growing than just flowers this spring!

Lucas is getting big! He weighs 7lbs 6 oz. Head circumference is 14 '' and he is 18.25 '' long! He has decided this week that he is going through a fussy phase. He wants to be held all the time and fights taking his bottle. His feeding progress has gone back a few steps from a few Weeks ago. Because of this and because he is now almost 44 Weeks gestational age, we will begin discussions about getting a "g button" surgically placed. This is a feeding tube placed directly into the intestine for the feedings he won't take by mouth. He will likely come home on oxygen too. So, we're having to consider different arrangements initially for his care when he comes home including needing oxygen tank set up, in home nurse visits or respite care services. These are possibilities, but nothing is certain right now. We know he's growing and becoming more aware each day. He will be getting his 4 month immunizations some time this week and probably also getting a special eye exam called a fundoscopy exam.

42 Weeks gestation, 17 weeks old

Length: 17 1/2'' head circumference: 14'' weight 7lbs 3Oz Lucas took two full bottles for mommy and daddy yesterday. He is doing better now that they increased his oxygen to 40%. He is back on diuretics to help him breathe easier. He is still growing. There's talk of him coming home on oxygen and having a feeding tube put in his tummy so he can get his feedings at home if he's too tired or unable to eat. I try to explain it like this: eating for a baby is like running a mile, eating for Lucas is like running a mile while smoking a cigarette.

Happy St Patricks day

Lucas weighs 7 lbs 3 oz today. The hospital loaned us a swing that rocks sideways and he was given a bigger crib so he can be placed in different positions. His head is starting to flatten on one side from laying on the same side all the time. They've increased his feeding volume to 2 ounces every 3 hours and reduced the calories to 24. They reduced him back down to 4 feedings offered orally a day because he truggles with knowing when to breathe. I told them they just need to let him suck on the nipple first with no milk. They said they can make a note but its one step back. Baby is scheduled for an MRI of the brain and he will be circumsized next week sometime. We still have a ways to go to get him home. He was weened on his oxygen, but still destats a lot if he is totally off it. Still growing and sleeping and doin the doin dudes and dudettes!