Our newest Glitter Gremlins also belong to the Preemie Fight Club with Aiden
I don't want to take too much of your time, but you all know that both our kids are preemies. We also have been open about donating to different things and people. We don't share this because we want any praise or ass pats. We share this because it is so important to share these stories, support our communities, and practically and tangible help those around us.
In an effort to do that, we are going to talk to you about a really special family in our world. Natt and Andrew have been a huge part of our community for a long time, and it has been so hard to watch them walk this NICU journey with the twins and not be able to do much to help them.
For the month of June, we will be donating all tips and 15% of all profit to Natt and Andrew in support of the fight they have ahead of them for the twins.
I'm also going to take just a second to update about this: we typically donate 10% of all profit to the Trevor Project for the month of June. We will still be doing that, but we will be splitting it between June and July. We will be donating 5% of all profit for two months to the Trevor Project. The Trevor Project is the world’s largest suicide prevention and crisis intervention organization for LGBTQ (lesbian, gay, bisexual, transgender, queer, and questioning) young people.
So: without more stuff from me...here's Natt, Andrew, Remi and Mara's Journey. (Trigger warning for our readers: infertility, graphic content, sick children)
Andrew and I were both not supposed to be able to conceive. He was told he was infertile and I was told that it would be a million tries before I would and even if I did conceive I would not be able to carry full term and would be hazardous to my health and the health of the baby. At the time I just didn't listen and didn't want to believe the doctors (20 yrs old, kinda rebellious at the time)
-November last year 2021, I find out I am pregnant. Due to all the holidays and short staff in a small town, I wasn't able to get in to see a OBGYN until December and I was 13weeks along. We walked in. Confirmed I was pregnant. And went in for our first ultrasound. I laid back and was ready to meet our little one...except BOOM there's TWO! We were both almost too shocked to speak since twins don't really run in our families. Anyways we go home and the next week I pass a palm size clot and was freaking out about the girls, they didn't have me scheduled for another 3 weeks for a 16 week but got me in the next day. Found out that I had a bleed inside near one of the placentas causing a subchorionic hematoma. But both babies were okay. So we were sent home and this is where I was put on bed and pelvic rest for what would become the rest of my pregnancy. I continued to bleed and was scared pretty much every day. There was one day where I was bleeding heavier than before and went to the ER because it was just not stopping. Heart rates were a little low but babies were okay. Sent home.
-Beginning of January we go in for my 16 week appointment and we find out ITS GIRLS! Still on bedrest and still have a clot and hematoma. We also find out that I have Vasa Previa and my placentas are really low. I have to go see a specialist and do more extensive ultrasounds to make sure each baby is where they need to be.
-Week 18 the MFM OB took about 2-3 hours of ultrasound. She was worried that the placentas would not move and would cause issues with birth. The umbilical cords were not in a good location either, VCI, velamentous cord insertion. Vasa Previa and VCI are often found together.
-From week 20 on I start going to appointments to do an hour long NST, non-stress test, on the babies once a week.
-At week 23 we found out I had ICP, Intrahepatic cholestasis of pregnancy, which is a serious liver disorder and can cause still birth. So due to that my MFM suggested we continue the weekly NSTs and to keep a close eye. Still on bedrest and pelvic rest. I passed another clot around this time also, not as large as the first. They told me to just remain on bedrest and it would be fine, but I was freaking out anyway.
-Week 25 MFM appointment is another 2 hour ultrasound to check the placentas and make sure babies are okay. MFM tells me that she's worried the placentas won't move to the locations they need to be by the time the girls come, so she suggests that if they don't move, to be admitted to the hospital at 28weeks for daily NSTs especially with the cholestasis.
-Week 28 comes and I'm all packed up, go to our appointment and nothings changed, girls are still okay other than heart rates were a tad low again. But the placentas didn't even move a millimeter. So I'm admitted to the hospital and they start doing NSTs every 8 hours. And we plan for a 34 week scheduled c-section. (Beka here to insert she is at the hospital hours away from Andrew (her husband) in North Dakota, in the winter.)
... insert rolled eyes and a blank stare here... because that obviously didn't go as planned...just like everything else lol (Natt, I love this so much lol)
- April 7th, 29 Weeks 3 Days. (Birth day) Woke up, normal day, waddling and a bit sore on the abdomen but okay. Do the first round of NSTs, and the nurse asks me if I'm feeling okay because she was seeing contractions on the monitors. I didn't feel anything so they kept the monitors on me just in case. Hour goes by and I start feeling a slight pulling feeling. So they have me call Andrew just in case. Tell him to get ready to come. He starts finishing what he was doing at work then goes home to shower and get on the road. (We live about 3.5 hours away from the hospital) I'm freaking out at this point and having small panic attacks. Another hour goes by and I can start feeling the contractions slightly now. The nurse tells me to let her know the second they get painful at all or if anything feels off or different. She leaves and not even 10 minutes later I'm smacking my call light from low jabbing pain. At that point they call it, they can't make me or the girls wait anymore and I'm prepped and rushed to do an emergency C section. I didn't have anyone I knew there and I was having a panic attack. People everywhere running around, multiple people talking to me and having me sign things. It was chaos and I hardly remember any of it. I just remember being scared out of my mind and alone and cold...very cold... my panic attacks were causing my whole body to shake so they had to basically make me be completely out of it. All I remember was being told I was doing good and to breathe and I heard both of them cry then they where taken away, I didn't even get to see them. Thankfully a nurse did take a picture of each of them before they were wheeled off.
Mara was born at 2:32pm, 2lbs 10oz 14.6inches long
Remi was born at 2:35pm, 2lbs 7oz 14 inches long
I was sent to a new room and I passed out. The nurses woke me up about 30 min later to check on me. Andrew showed up about that time too.
He went up to see the girls and sent me pictures. I couldn't see them till my legs came back...which wasn't till almost 9-10pm. That first standing up hurt like a B*TCH! But we got to go see the girls then.
The girls were intubated and put under jaundice blue lights immediately. They were almost translucent and so tiny. Their feet weren't even as big as my thumb yet. They had lines in their belly buttons and cords everywhere.
April 10th, still under jaundice lights, but Mara was put on a new NAVA machine for air because she was at least attempting to breathe on her own.
April 11th- we find out they aren't doing well with feedings and are pretty much throwing all of their food back up that they try to give them and breathing was getting worse due to a valve on the heart being open too big. With almost all term babies this valve closes on its own shortly after being born, but this valve was not wanting to close or even move. The girls were having daily echos to watch this closely but they determined that they would need a heavy treatment to help the valve close. This treatment is known to be somewhat common with babies this premature but it could be hazardous to other organs. Andrew and I were a hot mess at this point... Andrew couldn't be there with us AND a Major 3 day blizzard was rolling in and I couldn't go see the girls for a few days. Mara did decently better with her first treatment but Remi however had no change with the first three round treatment and we were told that she might have to be sent to Mayo if she didn't improve to get a surgery to close the valve. But before they do that they wanted to do another round of the treatment first. It was a very scary time and I know I'm leaving out alot of detail but I'm struggling to remember alot of it.
April 12th Remi is extubated and moved to the Nava. Like her sister. And both girls are given PICC lines.
April 14th I decided to brave the winter storm and there was a break for about an hour in the snow. 3ft of snow wasn't going to stop me. Although it almost did. The girls were a week old and I wasn't missing that. I was able to do skin to skin with Mara for the first time with all her lines, it was so scary and I could barely move but it was so worth every moment of it. The blizzard came back around so I ended up having to stay at the hospital over night. The nurses found me a place to lay for a few hours to get some sleep. I only slept like 3 hours.
April 15th remi gets her last doses of her treatment and echo done to recheck the valve.
April 17th we get results back from the Echos, Mara's isn't closed but close enough that they can start her back on feeds. And Remis is still a bit more open than they would like so they wait a day to see if anything changes.
April 18th- happy merry Easter! It was snowing on EASTER! Daddy was able to come down and see us. Remi got another echo and the valve started closing a TINY bit on its own so they started her on a tiny amount of food to see how she would do. Daddy got to hold Remi skin to skin.
April 19th- girls got moved from the bay and into their own room together! Mara gets moved to Hiflo instead of the NAVA.
April 23- I got to hold the girls together for the first time. Mara gets her PICC line removed. Both girls are tolerating feeds slowly. Remi starts having more Apnea spells later this night.
April 24th- HUGE winter storm comes through taking out over 2800 power poles and over 200 miles worth of lines in the western ND region. Andrew is stranded with no power (which takes almost two weeks to get back from this date)
April 26th- both girls are now having apnea spells and reflux issues. They are monitored more closely with their O2 and pressures along with feeds which they lowered to see if it would help them remember to breathe not having as full of a belly. Both girls are now 3lbs.
April 29th- I go home for a few days. The girls are doing well on feeds and they started giving them more feeds and upped the O2 instead of lowering feeds so they could gain weight faster.
There weren't really many changes after this
May 19th 6weeks old. Mara is 4lbs 11.9oz Remi is 4lbs 9oz. Remi pulls her tubes out all the time and now has to wear mits to keep her paws off everything. Mara is doing better and not having as many apnea spells and Remi is still having quite a few a day. Mara got to do bottle and breast feeding but had some latching trouble but remi took off right away to the bottle. Wasn't able to breast feed her yet. Both girls are still having reflux as well.
Sick for a week can't go to hospital but the girls were doing better. Less reflux and less spells.
Hasn't really been any other updates other than both girls finally hit 5lbs on the 28th!
They are just working on getting breathing down and eating better. They both get to bottle 4 times a day if they are awake enough and not refluxing too much. Mara hasn't had any spells in about 2 days and Remi is only having them about once a day mostly at night right after a bottle feeding.
I came home for a few days again to try to set up the room a bit better for when they do get to come home.