Schnuelle Twins Support

Crystal Ramm is organizing this fundraiser.

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SCHNUELLE TWINS UPDATE 3:
More amazing pictures!

Samuel wide awake!

A sleepy Liam...
Another sleepy Liam. This nursing thing is exhausting...
Snuggles with Daddy!

Samuel bottle feeding! What a champ!

Snuggles with Mommy!

From Kayla:
We will have been in the NICU for 4 weeks this coming Saturday. They boys are now 36 weeks gestation. I’ve learned that in the world of “preemies” there is an age difference for babies that are born early. Liam and Samuel were born 8 weeks early so they will naturally be 2 months behind their peers. For example, if babies are supposed to roll over at 4-6 months, then the twins will probably roll over at 6-8 months..etc.

It has been a long voyage here in the NICU. I sleep, eat, talk to the medical team and care for these little ones, however, the sleep is lacking. The twins are doing well. They had a busy week growing and eating. They have been switched from a fortified milk to a high calorie/ high vitamin formula that has to be given to them twice a day. This is to ensure that they get extra calories so they can continue to grow. They both got their feeding tubes out and are either getting nursed each feeding or they take the vitamin formula. It is working because both boys are over 5 pounds.

They had a landmark day on Sunday because Joey gave them both their first bottles. It was pretty cool to see these little guys pick up a new skill so quickly. With premature babies they are bottle fed very differently than term-babies. They have to be held on their left side and they only get two or three sucks before the bottle is tipped down. This is because the part of the babies brain that tells them to “suck-swallow-breath” is not fully developed. So what they tend to do is hold their breath until they can’t breathe and then we have a blue baby on our hands. So for the boy’s first bottle we had the Speech Specialist help us and work with the boys to teach them a rhythm. They will eat like this for several weeks and then they will eventually lay on their backs and take a bottle like a full-term baby.

Liam and Samuel also have had several meetings with the OT and PT ladies. During these visits we work on positive reinforcement. The boys have had lots of “negative” stimulation since birth so these specialists work to ensure that the boys don’t reject certain stimulation. For example, since they each had several IV’s and blood draws in their feet, oftentimes, premature babies hate to wear shoes and socks. They gave me the example of a toddler who refused to put on his shoes and hated to have his feet touched.

The people that work at this facility are incredible and I cannot say enough great things about the staff. Each day we get a new nurse and it has been impressive to learn from them and discover why them became NICU nurses. It is an impressive group of professionals and we feel very lucky to have them care for our boys.

Landmarks:
· No IV’s - taken out during week 1
· Moved to open beds- week 2
· Maintaining their temperatures- week 3 accomplishment
· Both boys now have their feeding tubes removed- beginning of week 4
· They have passed their hearing screening.- beginning of week 4
· They have been tested and graded on the Occupational Therapy and Physical Therapy charts and they will continue to be monitored for the next few years to ensure that they reach all the milestones- week 4

We are hopeful that both boys will be discharged together and hopefully that will happen sooner that their expected due date. This has been a long journey and I’m missing home and homemade food. Each day is another big accomplishment and I’m hoping that the boys stay healthy and continue to grow and gain weight.

Can't wait to use these!

Stay tuned for another update…

SCHNUELLE TWINS UPDATE 2:
Take a look at these beautiful new pictures!

Liam

Samuel at Bath Time

Liam at Bath Time

Left: Samuel, Right: Liam

From Kayla:
Week two has come to an end. Liam and Samuel have made great progress. They are still trying to maintain their temperatures and Samuel is having more problems with this than Liam. Their body temperatures should be between 97.4 and 98.4 but sometimes Samuel uses all his energy to try and eat then his temperature drops below the minimum threshold. When this happens he has to spend one hour of snuggle time with mom or dad to try and move his temperature back up. If this fails, then he has to go back in the incubator for a few days. So far he has managed to raise his temperature back up within the hour time limit, so he is still able to be in an open bassinet.The doctors have increased the boys feedings so that Liam is eating 1.5 oz and Samuel, 1.2 oz every three hours. The boys started working on nursing this week and they are both proving to be very aggressive eaters. They only have enough energy to nurse for 3-5 minutes at a time before they become fatigued and fall asleep. They will continue to take most of their feedings through the nose tubes but I’m hoping that within a few weeks we can lose the feeding tubes and go strictly to nursing!

Joey and Lane have been going back and forth from home to Omaha to see me and for Joey to snuggle with the babies. This is the longest that I have been away from Lane - ever! It has been very difficult because my heart is torn between room #2 at the NICU and home. But I’m thankful that Lane is in good hands and I’m thankful for everyone who has watched him, helped us here in Omaha and helped at the farm. We even have a great neighbor who goes over to our house and feeds our dog (Kobie). I think Kobie has enjoyed this because according to Joey he has put on a few pounds.

Happy Lane!

Week three is underway and I’m hoping that we keep making progress but we are finally at a point where I feel like the boys are stable and that everything will be okay.

Samuel

Check back for more updates…

The Schnuelle's are now a family of FIVE!

First of all, thank you so much for taking the time to visit the Schnuelle twins site!

I have been given the special privilege of sharing the big news that Kayla went into labor on December 27th and gave birth to twins, Samuel James (4 lbs 8 oz, 16.5 inches long) and Liam Daniel Schnuelle (5lbs, 20 inches long) on at 3:24 pm! The twins refused to stay in their safe and comfy home any longer and were born at 32 weeks gestation (eight weeks early). The doctors have prepared Joey and Kayla to expect their baby boys to be in the NICU at Bergan Mercy Hospital in Omaha for a couple of months (original due date was February 19th). Now that Kayla has been discharged, they have been moved into a non-medical sleeping room at the hospital so they can be near the twins at all times.

Liam recieving light treatment

Samuel recieving light treatment

Overall, the twins have been through some rough water but are doing really well and seem incredibly strong (in my bias opinion) for premature babies. Joey and Kayla are beyond grateful for the incredible care they are recieving from Bergan Mercy as well as the huge amount of emotional and physical support they have been given from everyone. Family and friends have spent the past week trying to help out best that we can; providing physical care for Lane (Kayla and Joey's 2 year old), food, groceries, transportation, hastily forgotten cold weather clothes, etc. Many people have asked what they could do and how they could help. After spending only four days experiencing and witnessing this emotional whirlwind of fear, relief, tears and utter exhaustion this family is going through it is completely apparent that other than prayers, monetary gifts are the most helpful at this time. Joey will be commuting back and forth between Diller and Omaha so they can get Lane back into some sort of daily routine (this has been pretty hard on the little guy as well) but also help support Kayla and the babies.

I am one of MANY people who would do anything for Kayla and Joey. They are two of the most generous people I know and always the first people in line to help friends and family with ANY situation, big or small. After a little pursuasion I was given the blessing of starting this fundraising site to help them with expenses, medical and otherwise. Joey and Kayla have made it clear that they will figure the expenses out one way or another (payment plans, etc.) and that they are simply relieved and thankful for modern-day medicine and the incredible team of specialists taking care of their family.

If you would like the chance to help this incredible family, donate, any amount. If you simply cannot donate at this time, than please leave words of encouragement for Kayla and Joey! The next couple of months will be mentally and physically exhausting for them.

Although Kayla and Joey welcome family and friends, Samuel and Liam are not allowed visitors at this time for precautionary measures, but prayers are especially welcome.

Samuel & Liam spending time with Daddy

Beautiful Momma & Samuel

From Kayla:
Twin News - Week 1:
Samuel came into this world with a bang. He was the twin at the bottom of mama’s belly and was breech. Evidently he was tired of being squished by his bigger brother Liam so he broke mama’s water and made his way into this world early. Liam is pretty chill. He has a plump little belly and his favorite time of day is snuggle time. The neonatologist has told us that the boys are probably identical, however, there is no way to be 100% sure without genetic testing. They look very similar except one has a higher hair line than the other. We think they look very similar to Lane when he was born (black hair and navy blue eyes). Both boys have very long legs and big feet and hands.

They both initially struggled to breathe and were intubated (breathing tube) immediately upon birth. Samuel was extubated (removed from breathing tubes) within a few hours and Liam followed the next morning as they were both weaned to room air. They have remained off breathing support and have very little apnea. The doctors have been giving them caffeine on a daily basis which encourages their brain to continue breathing on its own. Premature babies often forget to breath and the caffeine helps stimulate the brain so they remember.

In addition to caffeine the boys have been given two other meds. Both boys were put on two different antibiotics as a precaution and to help them fight any infections. The antibiotics were administered via IV’s. The IV’s have been super scary. On a premature baby, the IVs go bad within 24 hours. So the boys each had IV’s in their feet, hands, forearms and Samuel had one in his head. They have bruises all over and are tired of being stuck with a needle. They finally got their IV’s removed on Friday January 2nd and both boys smiled all day long.

The twins have feeding tubes that go into their noses and down into their bellies. The feeding tube is how they have gotten their food thus far. Their diet consists of breast milk and calorie packs. The nurses add the ‘calories’ to the milk which then gives each baby four extra calories at each feeding. Premature babies need extra calories to help them maintain their temperature and grow. They get to eat every three hours when they get a diaper change and all their other necessary checks.

They are in incubators and are constantly being monitored for heart rate, pulse and oxygenation. Every once in a while the monitors will go off if one of the twins is in a deep sleep. It scares us to death. The boys have had very few “episodes” which means they do a great job remembering to breath.

Both Liam and Samuel love to snuggle with mom and dad. They will sleep on us for hours if we let them. This first week has gone quickly and both of us are thankful for the amazing doctors, nurses and staff that have made this a pleasant experience.

Twin News- Week 2:
On Monday January 5th, we had two big things happen. The boys got baths! Yeah bath time, and they have maintained their temperatures well enough to be moved to an open bassinet. This is awesome because it is much easier for us to pick them up and care for them. It also means that Liam and Samuel are making good progress and are quickly approaching a time when they can eat on their own without feeding tubes. They are still getting full feedings and we are hoping that the rest of the week consists of growing, snuggling and eating.