First of all, thank-you and I apologize. Thank-you for all the kind words, texts, calls, visits, personal messages, meal donations and most of all for the prayers! You all have no idea how much everything means to us- and nothing goes unnoticed. Which brings me to my second point, I apologize. Sorry for my lack of blog/facebook updates lately and sorry for not always being able to respond in a timely fashion to your kindness. Your thoughtfulness means the world to us and I tell the girls about each and every one of you! They already know your names and have not met you yet. They know about the tasty ham loaf from momma Diane, the sweet cards from my former teacher Mrs Hardisty, how Amy and Mindy got their nursery decorated so cute, the Iowa State gear from Jessica Kinser, the Seahawk swag from Debbie Faaborg, Aunt Julie, and Kristine Karns, the adorable Christmas tree from Aunt Mindi and everything in between!
Since my last post we have gotten to endure the rollercoaster in full force. It truly does remind me of the Outlaw at Adventureland. You get told what to expect and the “rules” of the ride “Please keep your hands and feet inside the cart at all times. Make sure your safety belt is snug against you.” Then just before you take off, the teenage boy comes around and yanks on your safety harness to make sure you are good. “Have fun, enjoy the ride!” he says. That’s it. Away you go…. a couple quick little hills to get you prepared, then a sharp turn to the left which makes your butt slide in your seat, but not too far because your harness is so snug you think you can’t breathe. To the right you eye the first big hill…. The one that every person gets prepared for. After the sharp left turn you realize you are feet away from making the slow climb up the “BIG ONE”. You hear every anti-rollback device click-clack-click as you work your way to the top knowing the following 20 seconds you are going to scream so loud that the people in the parking lot or lazy river can hear you. You crest the top; you are ready to tackle the first drop- this is generally the initial and usually the biggest and fastest descent on a roller coaster- And…. it ….. Was…. all that and more!! A little bit of air time followed by a stomach drop, a loud scream as you try your hardest to keep your hands straight above your head….. (I’m sure a few of us did the challenge to see who could do the entire ride without holding on!!) And after that first drop the rest of the ride seems easier. You experience a few bunny hops or camel-backs, possibly a double down drop, then you get to the brake run section that slows the cart down before returning it to the loading platform.
(**Disclaimer** I had to google the above terms….. I am not that familiar with roller coaster lingo. LOL)
Knox and Lenox have had a couple of roller coaster weeks. They have endured all that was thrown at them like champions! I got a tad scared a few times but after a couple sleepless nights they are on the up-and-up and doing much better!
Week 5/ Dec 4-10:
Both girls were stable. Lenox only made it 24 hours without her nasal cannula and vapotherm. She went back on that with adjusted pressures throughout the days. During the weekend I asked the nurse if she thought we would be moving rooms soon and she wasn’t really sure. I told her I was excited to be on week 5 and I felt good about the girls’ status. She replied, “Five weeks is great, you are about half way done… and the next half is the long half.” What??? Longer than the previous 5…. How? I don’t understand how that could be. She explained that the next part is all about feeding and growing and those days get LONG. As a parent you can’t understand why they aren’t figuring this out… it’s eating… everyone knows how to eat! We ended this week with taking our infant CPR class; I like that they require NICU parents to take certain classes before the kiddos can graduate- CPR, Baby Care Class, Car Seat Safety.
Week 6/ Dec 11-17:
Feedings…..both girls are being fed through their feeding tubes and currently they are being fed a certain amount determined by their weight, gestational age, and how well they are digesting the food between feedings. They determine the digestion by pulling back on the feeding tube into a syringe to see how many mls of residual they each have. Right now they are taking their feeds over 60 minutes, every three hours. Eventually they have to be able to take their goal feed amount over 30 minutes. Which, doesn’t seem hard, right?? Well it is. It is like eating Thanksgiving dinner 8 times a day… and it’s hard for these little ones to breath causing all their stats to plummet. This particular week they were increasing the volume but not shortening the time frame.
Early in the week they both vomited and choked. Lenox did it before I got to the hospital in the morning. The nurse explained that he had done Lenox’s cares and had her feeds going when he went to work on Knox’s cares (diaper change, temperature check, blood sugar, blood pressure, abdominal girth, and residual checks) and that was when Lenox started doing a full on Brady and got in the teens and single digits with her stats. He left Knox and went to Lenox’s isolette and she had vomited- was choking- and had turned purple. He hit the “code” alarm in their room for extra assistance. My daughter was purple and they had to bag her to get her to breath. Later that day Knox started to do the same thing. Fortunately it wasn’t as severe as Lenox and she didn’t turn purple!!!
The middle of the week they again seemed to be doing really well and I was ready to start packing their room. The nurse explained that they try to keep one of the four twin rooms open in the event that someone delivers multiples. Plus I knew a couple of the moms on the maternity side that were pregnant with twins, so I knew we would be moved soon! Well, that didn’t happen this week.
By the end of the week, Knox had a bloody stool. The doctor immediately requested an x-ray that morning and they did not like what they saw. During this entire journey I had decided that until the doctors say they are concerned, I won’t be concerned. They showed me the current x-ray compared to the x-ray from earlier in the week, and I could see a difference…. I didn’t know what it was that I saw, but I could easily see a change. They then explained that they were concerned now and feared she had NEC- Necrotizing Enterocolitis.NEC Information from WebMD Immediately they suspended her feeds, which they anticipated would be for seven days, and put her on three different medicines. They explained that they were putting her back on the CPAP machine and possibly would have to intubate her; they also inserted her PICC line back in her leg. WOW! What just happened?? I was preparing myself to move rooms and now NEC?? This would be the first time I really had the wind knocked out of my sails. She was diagnosed on Friday, December 14th and we were at the hospital until midnight when they finally decided they were not going to do surgery and let the medicine try and work first. They felt they caught it very early and the issue was only affecting her first two layers of her gastrointestinal tract. Had it made it through to the third and final layer they would have been doing surgery that night. Praise God for their keen eye and hast response to her slight change.
Week 7/ Dec 18-24:
The girls remained stable and Knox was handling her treatment plan well. The start of the suspended feeds and medicine
was rough…. Probably more for me then her. She cried out of hunger the first couple days and that made my ‘momma-heart’ hurt. I knew it was best for her not to eat, but that was hard to stand by and watch her and not help her. She had a replogle tube inserted when they took out her feeding tube. The new tube would pull out any secretions and gases that would enter her stomach. So she literally would have nothing pass into her GI tract. By the middle of this week they felt both girls were stable enough that they wanted to try them both without the CPAP and vapotherm… and they DID IT!! They have remained off of their breathing assistance machines! PRAISE GOD! A week later, December 21st, they did a repeat x-ray and the neonatologist was still not happy with it, so they extended her medicine and continued with suspended feeds. Heart broken. The positive from that day…. We got to move rooms!!! YAH! I had the help of Grandma Verna to get stuff organized to move and the next day they had us down the hall. We are now closer to the NICU family lounge and the receptionist station in the middle of the figure “8”. The room is smaller, and the view isn’t as great… but I honestly like it better. Closer for me to go fill up my water bottle multiple times a day…. Plus I get to see people walk by! I have made friends with some fellow NICU parents and now I can see them and they stop in and chat. Before I was stuck back in a corner and I felt secluded. Plus this is good for the girls. They need to get more familiar with noises and sounds because our house is anything but quite!! Que, Russell and Wilson… and Miss Penny too! And good thing we moved rooms… the twin momma that I have gotten to know on the maternity side had her baby boys over the weekend, and they got my girls’ room!!! It all truly happened in perfect timing!
By Monday, December 24th Knox got a follow up x-ray and her GI tract looked better. The doctors are going to slowly introduce feeds again and started her with 7mls every three hours. So far she is tolerating it well. Talk about the best Christmas gift… a healthy report!!! :) The doctors are requesting that I try a dairy-free diet to see if that will be easier on her tummy. SO…. if you have any wonderful dairy-free suggestions, I would love to have them!! Coffee creamer is at the top of my list to get today!
Earlier this week the girls got to celebrate CHRISTMAS! Their first Christmas from NICU room 222. We all enjoyed snuggles and Lenox even tried to nurse. No real progress with that but it was an attempt! My nurses have said they are acting more like 35 week babies rather than 37 week babies. So I was hoping for them to be home by their due date, January 13th… but now they think I should add a couple weeks to that. Then if they are home by their due date, it’s a bonus!! So…. hopefully by Papa’s birthday (three weeks after their due date) they are home, completely settled in and ready for a party!! ;) Like I have said before, I do not want them home a moment too soon!! I think back on the prior couple of weeks… vomiting and choking, whoa…. Then the NEC… would I have noticed that??? Of course this makes me question my competency as a mother! It's all honestly intimidating!
Do you ever look back at times in your life and think, how did I survive??? I have had a few of those times. But then, when I am beyond the moment, the struggle, I realize I am stronger and am better for having gone through said situation. This time of year I always think about my grandma Jo a lot. She passed Dec 16th, our birthdays are January 7th, and for the most part growing up we spent a large percentage of the winter months at the hospital with her. Grandma had Crohn's disease and by the time I was three or four she had an irreversible surgery and a colostomy bag. As a young child my grandma and I did everything together. So when she would get sick, I wanted to be with her. I wasn’t a fan of hospitals… mostly just the needles... but if that was where my grandma was, then I was going! I couldn’t do much to help her… but I could rub lotion on her back, I could comb her hair and we could play bridge in the newspaper (honestly, I don’t know how she played that but it was fun watching her), and Adam and I would decorate her room with so many finger weaves that we could have sold them for a small fortune, I’m sure! All of that walk down memory lane to say, God had me go through those moments with my grandma to be able to go through these moments now. My inpatient journey and our NICU time. When I was younger I didn’t understand why grandma was so sick. Why did she have to be cut open SO much? Why does she need 15 plus different surgeries? Why did they cut out her entire large intestine? Why?? I feel like God is sitting back now saying… now you can handle your own hospital journey and maybe help a few people along the way. Just in the short time I have moved rooms I have been able to connect with a family a couple doors down. They too have a 29 weeker and are full of many questions and concerns. I’m sure they ask their nurses and doctors, but sometimes it is nice just to talk to a “mommy” and ask the other questions. Or just to talk about our experiences and see the similarities and the differences. I pray for all these little ones in the NICU, many of which are having a much harder journey than my little girls! And I pray for their families too, this is not something anyone wants to have happen with their little miracles, but it truly is amazing to watch everything unfold just the way it is suppose to.
As a friend from church would say, this is a God Wink. So true!! As we flounder around in the tough moments questions everything, He is calmly by our side waiting for us to lean on him, then we can see the why and his beautiful timing for all things.