Help Morgan and Johnny with baby Lilliana's needs

As a lot of you know, I became a grandma recently. But it has not been an easy road for anyone in the family. First, Morgan's water broke at 29 weeks. We went to the hospital to confirm it. IVs were started right away; she had to get 2 steroid shots for Lilliana in 48 hours, precautionary for if labor started. She went into labor and they couldn't stop it. Morgan had to get magnesium to develop the baby's brain better and a power-packed antibiotic dose because of infection risk to both mom and baby.

Next, we moved to the antenatal room to try to keep her in. Our goal was 34 weeks: bed rest, limit moving to bathroom trips, and non-stress tests every 4 hours for 20 mins. Morgan also needed blood drawn every 3 days to eliminate the possibility of infection. She was a trooper; she just kept going for her Lilly Bug. However, after so much and not having great veins, they had blown so many lines that they placed an IV in her foot. That didn't hold, then when that blew, she got a midline. Her midline clotted after just 2 days. She was started on blood thinner shots to the stomach twice a day (if you've ever had them, you know they're not fun). But she kept going. Morgan was then placed on another IV. It did not hold, so another midline was placed on the other side. Then her blood pressure meds weren't controlling her blood pressure. She was placed on the highest doses of blood pressure meds. Even with this, she was running too high at 180/100.

At 32 weeks, she noticed decreased movement from the baby. We had an ultrasound done, and she was okay but had very little amniotic fluid left. It was at this point they told her the baby is diagnosed with IUGR (Intrauterine Growth Restriction). We were scared. At 33 weeks, she started having small contractions. And with each contraction, the baby's heart rate would dip. It did this for each non-stress test. We were terrified. Morgan made it to 34 weeks and immediately started contractions and dilated to 1 cm. She was moved to a delivery room, and induction was started. First, meds to soften her cervix for 24 hrs. Then the Pitocin was started. She labored all day with no progress or improvement. She was still dilated to 1 cm. Morgan was being flipped and flopped all over, hoping to help keep the baby's heart rate from dipping with each contraction. They tried placing internal monitors with NO pain meds or epidural, so they could get a better reading, but she wasn't dilated enough, and the pain was too much. They gave her an epidural and were then able to place internal monitors.

At 5:50 am on February 3rd, she was told the baby's heart rate was still dropping, and they were going for an urgent C-section. She was prepped and rushed back for the procedure. She was told they didn’t know if she would be able to see the baby before she went to NICU. It would be dependent on how the baby was doing. The C-section was performed, and thankfully, she was able to "hold" Lilliana (the nurse held her by Morgan's head so she could snuggle as much as possible). She was able to snap a pic, and Lilliana was rushed off to NICU. Morgan had to wait for her epidural to wear off, so she was unable to see her baby for 10+ hours. When she was able, she went to see Lilliana, where she found she was on CPAP for distressed breathing and on a feeding tube. She was unable to hold her daughter but was told she was 4 pounds 8 oz at birth.

Day 2 in NICU, she was able to hold her baby for the first time. Shortly after, the baby was diagnosed with jaundice. She needed to be under her blue light in her covered isolette. Three days later, she could be out of her isolette 1 hr a day.

On day 5, we had high hopes as Lilliana was trying to come off the CPAP. However, she was placed back on after only a day. We were all bummed but taking everything in stride. After a few more days on CPAP, Lilliana came back off the CPAP but had to go on forced air because she was still having a hard time.

Finally, her time came, and she got off the air and moved to a big girl bed (an open isolette) and could wear clothes for the first time.

It was shortly after that we found out she had a heart murmur. An echocardiogram was done, and we found the baby has a hole in her heart (VSD). A few short days later, we had a scare where the baby turned grey and had to be moved back to an enclosed, heated isolette again. Tests were run, but it's still unknown what happened.

By this time, Lilliana had been in NICU for a while. They were agreeable to start baby feeding. But every time she tried to eat, her heart rate and oxygen saturation would drop. This is when we found she has swallowing difficulties. Morgan had to stop breastfeeding and pump so she could add thickener to the baby's milk in a bottle.

Lilliana had to have 80% or more feedings by mouth for 2 days to get the NG tube out and then for 2 more days to go home. We never got above 72% one time. Morgan and Johnny were trained in how to place an NG tube and how to use it. And after a very long 49 days in NICU and over a month in labor and delivery, she was allowed to go home on an NG tube and still on thickened liquids.

After a very long and trying time, we were just able to remove the NG tube as a TRIAL. We are all hopeful...

Lilliana is receiving occupational therapy, physical therapy, and has been diagnosed with a lip and a tongue tie. Unfortunately, this surgery is not covered by insurance. This is vital to have fixed ASAP to help the baby eat more easily and be sure her speech develops correctly. This is why I created this GoFundMe. These two kids (Morgan and Johnny) have been through it. You know all about the baby and Morgan. Now let me tell you about my son-in-law Johnny. This man spent every night in that hospital with my daughter. He's kind, gentle, and a hard worker. He woke up at 5 am to go home and take care of their animals, then get ready for work. Work all day, go home to take care of animals, rush off to get Morgan food that was edible, and head back to the hospital. He was and is an amazing son and father. When the baby went to NICU, Morgan sat vigil with Lilliana 8-10 hours a day. And Johnny was spending every spare moment next to her.

So, these kids have been through the wringer. Morgan obviously went off work earlier than expected and can't yet return. Johnny is working constantly. Chad and I, as grandparents, are doing as much as possible to help them, but I'm currently out of work due to a work-related injury. I am on a fixed income and can't help a lot there. We are hoping to raise enough money for little Lilliana to get her tongue and lip ties taken care of and possibly help the kids with the buildup of expenses that have occurred over this time.

Thank you to anyone that can donate.