After 70 days in the NICU, what a humbling experience and week it has been! Lilliann is over 38 weeks in gestation and was unexpectedly on her way to discharge over the weekend. Lilli has not had an apnea episodes since the 29th of June and after having her NG tube removed Thursday morning. Unfortunately she had a Brady/apnea episode not related to eating a few hours away from going home…therefore our apnea watch restarted and she can’t go home for about a week now, as long as she is free of any more episodes during this week. She is the boss and showed us right in time she really wasn’t ready to go home, she must have felt rushed, like we thought. As frustrating and upsetting as it was to finally be there and after being there all night with her for it to happen last minute, I’m glad if it did have to happen it was there and not at home. NICU babies here can’t be discharged on a monitor, that got discontinued about 5 years ago one nurse told us. Thanks to parents who relied too much on the monitor itself rather than their own baby and body language and would think all of the false alarms weren’t the real deal once it really happened. We pretty much can tell when Lilli is going to have a Brady and can usually proactively prevent it.
Lilli passed her car seat test by sitting (mostly sleeping) in it with no issues for almost 2 hours! We are also all trained in infant CPR and choking now. Lilli had her 2 month vaccines last week and did just fine with them, no breathing complications one bit! She’s really close to hitting 5 lbs which is almost big enough for her amazing nesting days wrap we have for her and can’t wait to use (the company is awesome and reached out to me via Instagram regarding our situation.) Lilli is also close to fitting into her ergo 360 carrier too! It’s amazing watching her grow and see how far she has come. A few things we have to keep an eye on is Lilli had a hearing test Sunday and barely failed in her right ear but the equipment they used had been acting up. So she will get checked again in a few weeks. She also has higher blood pressure for a small preemie, a normal sized adult its normal but higher than it should be for her age and size so she is on a small dose of daily blood pressure meds with her vitamins and fortifier for the breast milk. We have to take a trip up to OHSU in Portland in 3-4 months to see a specialist about it. Her kidney scan was totally normally so they don’t think that is the issue, they are just being cautious and preventing any long term issues she could have from uncontrolled blood pressure problems. We were left in the dark and didn’t even know about them monitoring her BP until they prescribed her meds (which is expensive and has to be compounded due to the low dose), that is a little frustrating. Sometimes we aren’t informed/told about things going on with our child and have to always ask questions to get the answers. We as parents are Lilli’s voice and have to put our foot down for her when we sense something isn’t right, like her being over fed a few times (hello spit up!)
💛💖(Sweet little Lill in yellow)💝💛
Garry is so calm with her and was holding her when her Brady episode happened and knows just what to do to get her out of it, I’m the one who goes in freak out mode so I’m glad he’s always there to help. Garry keeps telling me whenever I feel discouraged that it’s ok, Lilli isn’t even supposed to be born yet and is still kicking butt! I told him after going home without her and crashing out for a well needed nap Sunday after the failed discharge that look at it like I was having a false labor since I still would be super pregnant. Many women go to the hospital thinking it’s baby time only to be sent home with no baby yet. That was what we experienced, I’m thinking. Lilli will
be ready on her time and we want her 100% ready and healthy for going home. She is truly the boss after all, in charge of everything!
This last week really has made us turn on turbo speed and get everything we need officially set up this week we are just fine tuning! So to our prayer army please continue to pray for our little family that we can finally go home here soon with Lilli on board! I was supposed to start my parental leave this week but because of the events that happened over the weekend I decided to keep working until she is officially discharged. As hard as it is to keep up the busy weekly schedule it will all be worth it in the end. I’m glad I’ve got at least 3 weeks in of work (to help our finances) until her homecoming. I’ve got to keep myself distracted otherwise I might go crazy. 😜
(Happy tube free face girl cheesin’) 😍
If we survive the NICU stay we can survive anything! People think they can relate and unless you’ve been in this situation you really can’t. We are still parents and get no credit sometimes. We will cherish our baby even more now thanks to working so hard and fighting to get her home! Last week we got out for a while and enjoyed the Fourth of July for the last time just being the two of us. We so badly wished Lilliann could be around all of our friends and family for the annual parade and firework show, next year we will celebrate big time! It was hard seeing all of the cute babies and pregnant women walk around since that should have been us! Oh boy do some babies look huge compared to our Lilli bug! We also had our last date night until Lilli gets discharged. Since we couldn’t celebrate Garry’s birthday a few weeks ago, months ago I got him tickets as his present for a meet and greet concert to one of his favorite rappers B.o.B! We had a blast! We’ve been wanting to see one of his shows forever and so glad he came to town and we got to meet him and hang out up close and personal before the show! It was totally worth it and he is an awesome person! It was truly our last hurrah! 🎶❤️🎤