Boy is that an understatement. Simply having a Preemie after a completely healthy baby is as well. They are so small and tiny. In some cases, she is the size of Big JaMonkey’s dolls. I feel like I’m going to break her. I’m glad she is my second child because I would be a hot mess as a brand new mom right now. I’m still a hot mess but I’ve accepted that the NICU is the safest place for her right now and she is doing so well in there.
I didn’t get to hold Lil’ JaMonkey for four whole days. They took her out of me and passed her by my face to weight her and then rushed her to the NICU. When they took her, her heart was beating at 290 beats a minute. A very unsafe rate. A normal resting heart rate should be around 100-150 beats per minute. When the cardiologist came to see us in the recovery room he tried to explain to us what they were planning on doing for her. I honestly couldn’t tell you everything they said because the terminology and medications they were naming were just swirling through my head like a foreign language.
They had to give her a few doses of meds to try and slow down her heart. The way they described it was that there was an extra nerve firing on her heart, so it was causing it to beat uncontrollable. The medication would work but for only short amounts of time before it would spike back up. By the time they rolled me to my postpartum room, they had gotten it down to a steady 170. They started to name all the other things that were wrong with her along with the things I should expect due to her gestational age.
Along with the SVT (Supraventricular tachycardia) she also had CHF (Congestive Heart Failure). The CHF was caused by her SVT being so high. It wasn’t circulating her system the way that it was supposed to. She also had some fluid near her abdomen that they saw on the ultrasound before she came out. Her lungs were very premature so they would have to breath for her along with pumping Synthetic Surfactants them because she had not developed them yet. One of her kidneys are larger than the other. She had a little Jaundice as well so they put her under the Bili Lights.
Once they found the right dosage of meds that kept her heart from spiking (Tachycardia), she started having drops in heart rate (Bradycardia) that are common in Preemies, and they normally bring it back up on their own. So far they have been giving her SVT Medications through an IV. They don’t want to switch her to the oral medications until they know she is taking all of her meals well and digesting properly.
As of today, she is still going back and forth with her heart rate. Sometimes it drops, and sometimes it spikes, so they just monitor her closely. They have taken out her arterial lines, ventilator tubes, and the oxygen lines to her nose. She is breathing completely on her own now!
The Picture above is after the ventilator came out but she still has the oxygen tubes in her nose. The picture below is one of the most recent. She still has a few wires and tubes but not as many as she started with.
Poor little thing! I can’t imagine how difficult it must be to learn all of this while still taking care of big sister. You’re so very strong and handling it all so very well!
I’m doing better because I know she’s in good hands. They have to figure out the kinks with her SVT and reach a full gestation age before she can come home.
Awwwww what a little trooper! The super firing heart nodes are just what my husband had. He had a wee procdure and is tip top again.. even running marathons!.. She is going to do great.. I feel it!
Maddie
Yep but that will be years down the road 🙁 Right now we are just trying to get her dosage correct.
She is doing GREAT! I’m so glad to hear (read) it. She looks like a fantastic sized preemie! Hope she keeps doing great. Like I said I’m hear if you need anything, even if I’m too far away from physical help, but to talk or ask questions.
Stay strong! Praying she gains strength daily!
Just found your blog while randomly searching for a tutorial. I just wanted to say I will be praying for your little one. I know how hard it is to have a baby in the NICU. My son was delivered early, but at 35 weeks. He was in the NICU for only 17 days, but each day apart from him was agony. Especially since he was my first. He’s had his battles and ups and downs since he was born with Hydrocephalus, but he is so strong today. I hope it’s okay that I pray for you and your little baby girl.
Thank you so much!
I know this blog is old but im praying you will respond to it. My baby boy was born a micro preemie at only 25 weeks on sept 25th. He has been doing amazing for a micro preemi he was off the vent the first 6 hrs of life and has stayed off it he is truly a fighter. Anyways last night the weirdest things started to happen his heart rate started to go up and then back down. They kepht an eye on him and then finally called the cardioligist when it wouldnt stop. They cardiologist said that he had SVT and he diagnosed it as atrial ectopic tachycardia im been doing a ton of reaearch and this just isent common in preemies. You were the only thing i could find so im hoping you can tell me what was the ouctome of your little one did she outgrow it or what ended up happening?
Just emailed you.
In same position with our baby boy 31 weeks and has svt the first two medicines haven’t worked now they are waiting on the third . What a roller coaster God doesn’t prepare hou for this at all.
Any good news how is your daughter doing now adays ?
Hey Cheyne, It took a few combinations and tries for them to get the right balance of medications. She ended up on an adult medication that needed to be specially compounded by a pharmacist. When we left the NICU, she didn’t have any more SVT attacks. It was the craziest thing, but I think they found a good balance for her meds as well. She was clear of all medications and no longer had to visit the cardiologist after six months. She hasn’t had a single SVT episode since. They did tell me that it could present itself later in life, but she will be able to tell me her heart feels strange at that point. It was really scary, but our cardiologist was amazing and made me feel much better about the issue. When you learn how to control or stop an episode, it becomes a little easier. Hugs to you and your family. You’ll be in my thoughts.
Thank you for your words ya he’s having spells with different medications of normal then it’ll spike to 220 for 1-2 hours then every now again it’ll dstat to zero but they said that’s ok cause it’s briefly 3-5 seconds n jumps back up. So nerve wrackin
Your story hit me right at home. I just gave birth to 33 week preemie twins. Twin b was diagnosed with svt it is so scary watching her heart rate got up and down. Do you have any advice on how to handle this ?
Congrats on your new bundles of joy and chaos. Trust your cardiologist. They will throw big scary words out there but they deal with this a lot and it is manageable. Babies can handle a lot more than we think and sometimes the procedures to bring them out of SVT seem scary but they work. Do a lot of skin to skin kangaroo care (cuddling). It helps them heal and you feel better.
Just curious how your LO is now? My preemie baby had an SVT episode and a brady episode. I noticed your post is from 2012, so curious how things are now as I’m looking for advice/a positive story. Thanks.
She never had an SVT attack after we left the hospital. She did have some Brady because she was so little. She was cleared from cardiology after 6 months. They told us that it could happen later in life but so far she is great!
Thanks so much for the quick reply! That’s great to hear the good news. Was she placed on medicine for the SVT?
Yes, she was on two medications. I can’t remember the names, but one was for adults and had to be specially compounded. They never changed her dosing even though it should have with her weight changing. So as she grew she was weaned off the meds naturally. It all seems crazy to think about now because they had so much trouble with the SVT while in the hospital. Hard to break the episodes, hard to find the proper dosage. I thought we would be struggling with this for the rest of her life. Now we just fight bad colds because her lungs were underdeveloped from being born prematurely.