Baby G Inside Out

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Happy girl! She's up to 6lbs 5oz at her surgeon's appointment today at 9 weeks old. Overall they are happy though she is still in just the 3rd percentile for weight. Matilda has started to smile at us which just brings such joy! In this, her 2nd month, she likes: funny faces from her family, kisses, her swing, being wrapped in the baby carrier, tummy time with her siblings, the Wheels on the Bus, and especially eating! She dislikes: poopy diapers, being alone for too long, and being hungry. Who doesn't?! #gastroschisis #gastrobaby #hibaby https://www.instagram.com/p/CJ9-uEDrhDY/?igshid=10z9wjus8wn4y

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It has been a full life since the last update. Matilda is growing, #praisethelord! Enough so that last week we actually didn't have any medical appointments - for the first time since early fall! It hasn't been without a lot of work for all of us, but work well worth it! As seen in the bottom left pic: pumping, feeding Matilda, and loving on all 3 kids have been our top priority. Typically feeding is by bottle as she just can't get enough calories from straight breast milk, a not-uncommon effect of the #gastroschisis. Matilda will likely continue to be small for a long time, but hopefully will maintain her own little growth curve. She's at the point now where full-length #preemie clothes are mostly too short, though the Made with Love 💕 onesie is a preemie and fits great. She's long but still so skinny so most newborn clothes she swims in! As you can see from the top pic, Matilda's belly is healing!! All that's left is an #umbilicalhernia which is relatively common and may not need to be surgically fixed for a long time. She has another surgeon appointment coming up next week where hopefully we'll learn more. It's been a very different journey than with our older kids. I myself had never bottle-fed either of them, & our 2nd never took a bottle at all! It is a blessing that Matilda can nurse, and does some each day, even though it's not enough to get her growing. It gives me new appreciation for those who bottlefeed, and especially those who #exclusively pump. SO MANY DISHES!!! Our schedule still revolves around a variation of the #triplefeeding but thankfully I'm able to pump enough milk in less sessions than I had been, so we've got some more time than we did. We're starting to make a new normal for ourselves! We're slowly starting back up with #homeschoolpreschool, getting outside, and mostly are looking forward to the New Year and getting to see Matilda grow! Oh yeah, and eventually (little by little) tackling the laundry mountain and general household chaos that has grown up while we're here in #newbornland! #growbabygrow #gastrowarrior #gastrofamily #mightytilly #smallbutmighty https://www.instagram.com/p/CJpfnaRrdVk/?igshid=185y3unbiuirt

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Baby's first sled ride! We've been home 2 weeks now & our favorite parts involve time spent with the whole family. Yesterday was the first big snow of the season so we walked to a small hill nearby so the kids could go #sledding! Tilly & I even went down once! Most of our time though is spent on feedings. We had thought she was doing well nursing but it turns out she LOST weight last week (cue hormonal emotional mom wailing) on mostly breast milk so we're back to all fortified bottle feeds, occasionally followed by nursing if shes still awake, then pumping to keep up my supply & fill the next round of bottles. Usually there's a bit of a break between that & the next feed beginning for washing, eating, playing, homeschooling, housekeeping, etc. This cycle is in repeat every 3 hours. Someday we'll figure out when to sleep! 🤪 In this season it is a blessing that Dad is working from home. Grandma, for whom we are eternally grateful at helping out the past 5+ weeks, is back home, so it's just us! Everyone is helping out! The 2yo (almost 3!!) does a great job of fetching things (at times even unasked!) & loves holding babe & brushing her hair. The 4.5yo is an excellent helper/big brother. He is vigilant to make sure things are safe for her. I am continually impressed at his capabilities. Today he took apart the swing after a diaper blowout & put it in the hamper for me! He says she is a lot of work but worth it. I agree 😆 They both have been so great at playing together and loving on her. Just this evening both siblings gave her her 1st bath. Yes, that's right - she can finally have a bath! Her stomach is healing so well that at this week's surgeon appointment we were told she doesn't need the dressing anymore! Woohoo! So, prayers much appreciated for Matilda's growth. At 5.5 weeks she weighs just 5.0lbs. The doctor says we need to see a good growth curve before we can let up. So prayers for our endurance are also appreciated! Her recovery has been astounding so far, so we know she can get through this too. #smallbutmighty#mightytilly #gastrowarrior#gastrofamily #gastroschisis #pumpingmom #feedthebaby #growbabygrow https://www.instagram.com/p/CI7Gg7oLwVi/?igshid=rehrhgg2f1ah

[babyginsideout]

Yesterday, these 3 finally met! Yes, we got to "go to the zoo" aka HOME! After just 23 days in the NICU, we are so very grateful for the miracle of her quick healing. She's not gaining a lot of weight but after 3 days of positive movement they decided she was good to go! There was so much JOY at her homecoming, it melts my heart. Big brother and sister made her Welcome Home signs and have been enjoying helping in her care. She is ever so loved. We've been busy acclimating to life with 3 littles, preemie care without the perks of the NICU (especially the #NICUnurses who were SO wonderful!), and just trying to figure out the new rhythm of this season. Baby has to try both breastfeeding and bottlefeeding with fortified breast-milk every feed so so far most of our focus has been on a #triplefeeding schedule of breastfeedingfeeding/bottlefeeding/pumping. Thankfully being home meant we were able to play in the #firstsnow of the year with the older 2 and even made a snowman ☃️ Our prayers now are that she continues to gain weight and can drop the triple feeding schedule at some point. And that she learns that nighttime is for sleeping and daytime for being awake enough to eat 🤪 We're tired but oh so happy to have our family together! #gastroschisis #gastrofamily #gastrowarrior #theresnoplacelikehome #siblinglove https://www.instagram.com/p/CISAB-QrVB5/?igshid=11yfvpqn39xh

[babyginsideout]

Happy 3 week birthday, baby! Baby girl is eating like a champ but still needs help with consistent good weight gains. So we began fortifying her milk and hoping that provides a temporary oomph to get her to the zoo! The zoo?!? NICU euphemism for h-o-m-e (shhh don't want to jinx it!). Everything has progressed so miraculously fast that it's hard to not get frustrated and anxious about this somewhat slowet step. But - we place this journey, including ups/downs/plateaus in God's hands. Thank you for praying with us that our little peanut grows and gains weight! And - check it out! Our first family photo, vis video chat!! #growbabygrow #gastrowarrier #gastroschisis #familyphoto #gastrofamily #NICUlife #mightytilly #miraclebaby #prayersappreciated https://www.instagram.com/p/CIKQAZErOlo/?igshid=3xnz7pu8l1jw

[babyginsideout]

Happy Thanksgiving! We're so very thankful for this little turkey, the amazing support of friends, family, and strangers, and the miracle of her quick healing! The next hurdle is gaining weight! She's been pretty up and down so please pray for her to grow ♥️. If all else goes well that is the last battle between her and home! (at Nationwide Children's Hospital Main Campus) https://www.instagram.com/p/CIE_2xbLXT1/?igshid=1x0ymepy01l

[babyginsideout]

Tiny baby. Post milk coma. So much love. She's doing so well with her feeds, just had to share the cuteness and joy! ♥️ (at Nationwide Children's Hospital Main Campus) https://www.instagram.com/p/CH6v7EBLqst/?igshid=skhlpy1ff9n3

[babyginsideout]

Happy 2 week birthday, Matilda!

We've had another big week, so much so that we haven't had time for updates!

The week's beginning included her being allowed to wear clothes, in the middle she had the vacuum removed from her stomach tube and then that removed too, and it ended with her tolerating feeds and even being allowed to practice "non-nutritive" suckling with mama to practice breastfeeding!

Along the way there were hiccups, including stopping feeds briefly, and some tears, but she's still fighting mightily.

She loves: video chatting with her siblings and grandma and hearing them praying/singing/talking to her; kangaroo care (skin-to-skin) with mama and daddy; her octopus; cute hats (or at least mama and the nurses do!); And most recently eating!

Thanks for your prayers and love - and patience with tired/absent parents! We haven't been great at responding to folks or updates, but we love and appreciate you all!

https://www.instagram.com/p/CH3w28rLSAH/?igshid=1k3bgzdcesyc5

[babyginsideout]

Happy #oneweekold birthday baby! It's been such a BIG week! Matilda is definitely living up to her name's meaning: mighty in battle. Yesterday had some sudden, good but challenging and rather unexpected changes! Since she's been doing SO well on room air and can be swaddled they said she can be switched to a crib! That was all set up while we were doing #kangaroocare and then, before she got there, we learned she'd be changing rooms to a step down "pod!" We had heard that she would eventually move but it so suddenly occurred; glad both Dad and Mom just happened to be there! The pod is exciting because it means she doesn't need intense care but also exhausting because we just became comfortable in our routines and now its changing! We're switching from an individual room to a looooong room with 16 babies separated by curtains. I think it will be good for her to be surrounded by noise especially when we're not here: if she was still in utero it'd be pretty loud! But it requires us to figure out all the new things and readjust which is difficult when we haven't slept much 😴🤪. Goals for week 2: continued healing for baby, get all 3 of our babies some #familytime, and keep working on pumping strategies so as to be successful but also get some sleep! #gastrowarrior #Gastroschisis #changes #icandoallthingsthroughchrist #pumpingmom #tired #blessed #mightytilly (at Nationwide Children's Hospital Main Campus) https://www.instagram.com/p/CHlVTsFL2X5/?igshid=1tm0a4cemuzgi

[babyginsideout]

Beautiful nose! Another milestone today (yesterday/Thursday..#sleepdeprived and so forgot to actually post! 🤦)in our #gastrowarriors journey. Her breathing tube came out! So far she is tolerating room air extremely well ♥️ Stay tuned for some exciting Friday updates too! https://www.instagram.com/p/CHi4eZFrp0D/?igshid=f2m89aq8g6lc

[babyginsideout]

Happiest parents ever?!? Yesterday I woke up to this picture of Dad holding Matilda! I screamed 😍 When he arrived no insides were outside! The surgeons told him they'd close it that afternoon. He must have shown how excited he was to hold her that they came back a little later and did so. Closing involved taking a spring out that had been holding the hole in her abdomen open and then using the umbilical cord to cover it. It's referred to as a suture-less closure and is really good because she doesn't need to be put under for surgery. Praise the Lord!!! And thank you all for your prayers! #holdingbaby #gastroschisis #gastrowarrior #kangaroocare #thankyoujesus #soinlove (at Nationwide Children's Hospital) https://www.instagram.com/p/CHcpZi1LDbm/?igshid=zwfbwgicwmu4

[babyginsideout]

Hey there beautiful! Matilda is doing well and her surgeons are really making progress. You can see in these 2 bottom pics how much progress was made yesterday. The first one was after the surgeons reduced it early Monday and the second when I returned late Monday for a quick visit. Her heart was beating quickly with the increased pressure but hopefully acclimates and they can finish today. Thanks to all who have reached out. Please understand we want to respond to individual messages and the amazingly generous outpouring of love we've received. Currently we're focused on the ever-changing demands of #NICUlife, #pumpingmom (and #incrediblysupportivedad) life, and trying to be there for our 2 amazing kids whose lives have turned upside down - and maybe even sleep one day soon! When we can we hope to respond to each and every one of you individually. In the meantime know we're updating here as we can, and we are feeling your prayers and love. #Gastroschisis #gastrowarrior #gastrofamily https://www.instagram.com/p/CHaEFLWLdVI/?igshid=1jjy3o9d9w9ob

[babyginsideout]

Matilda is at the Children's Hospital! Her intestines are in that bag, called a silo, to very slowly be put back inside. It's a slow process as they don't want to put too much pressure on her other organs. She's so small her lungs, etc, feel every little push. Her surgeons do so little by little over (hopefully not too many) days. It's hard not to hold her but mesmerizing to watch her breathe and move, stroke her hair, and love on her. It's hard to be away but we're trying to catch up on rest at home at night and were blessed to have dinner with the kids. This morning she'll have a PICC line put in so she can begin to receive TPN (Total Parental Nutrition) as she won't be able to eat until her intestines are not just back inside but have settled and healed. Since that needs to be a sterile procedure we'll be blessed again with having breakfast together as a family before mom and dad join her. The kids love her but miss her already so much. Please add their little sibling hearts to your prayers. They are comforted by the ever-loving presence of Grandma who came down early and will be taking care of them these long weeks. #sograteful #gastroschisis #gastrowarrior #NICUlife #gastrofamily #ijustwanttoholdheragain https://www.instagram.com/p/CHU_ja1L9I1/?igshid=1mnvqb4gs3eb3

[babyginsideout]

Matilda Marie Galens, 4lbs 6.5 oz, was born this morning, November 7. 26 hours after her water broke! She is now at Children's Hospital where her intestines are beginning to be put inside where they belong! Mom and Dad are exhausted but in love ♥️ This is us holding her ever so briefly before she was taken to the NICU. Dad is with her now and hopefully mom will be discharged this afternoon to go see her! Prayers that all goes well and we can hold her again not too much longer - once all intestines are closed inside. This can take up to a week. Welcome to our family, Matilda ♥️ (at OSU Medical Center) https://www.instagram.com/p/CHTAjw6rYn2/?igshid=4aub14lqrug8

[babyginsideout]

My first #crochet for baby! An #octoforpreemie! Apparently the tentacles feel like umbilical cords so the little ones feel some familiarity in the #NICU. Plus, as another #gastroschisis mom said, it looks a little like our #gastrowarrior with the insides out! I made 2 practice ones for the 4 & 2 year old, so now we've got a family of small octopi! It's about 6-7 inches long. Small, like Baby G! Overall the appointments this week were really good but baby didn't put on as much weight as they were hoping. At 34 weeks 5 days baby is just 3 lb 15 oz. Hoping for 5 lb by birth in 2 weeks! So different than my previous 9.5 and 8.5+ lb babies 🤣 2 weeks and so much I'd like to do before then. Please keep our to-do list and peace in your prayers. We can do all things through Christ who strengthens us. So thankful for all who have been like Christ to us and have ran errands for us or offered help! We don't know much about what we'll need but a friend so lovingly put together a meal train. If you would like that info, feel free to DM. But, mostly what we ask are for your prayers! https://www.instagram.com/p/CG-0DD_rvmK/?igshid=1913iazd4iy9v

[babyginsideout]

Hi baby!

A cute pic! Yay!

A quick update: Baby failed the non-stress test (NST), again. But passed the next ultrasound biophysical profile (BPP) test. Next week we're just skipping the NST and going straight to the BPP.

Thankful that baby's stomach is back to normal size, indicating the larger size last week was just normal fluid intake and not related to a #gastroschisis problem. Woohoo!

Thanks for your prayers! Please continue to pray for baby - and family! Mom and Dad are feeling the stress of less than 3 weeks to bday and so much to do, all while in #quarantine!

#gastrowarrior #gastrofamily

https://www.instagram.com/p/CGtEmnQLHkT/?igshid=q5ek0qm2amxf

[babyginsideout]

Pray for us, #StJude! The 4yo (started?) coloring this for our J week in #homeschoolpreschool and it reminded me to post here!

Yesterday, the #novena to #SaintJude began. Last year we prayed for God to bless us with this baby. And we found out we were pregnant on the day the candle stopped lighting - long after it seemed like it shouldn't light anymore (during the novena to #stjoseph, another of our favorites we're celebrating this J week!).

This year we're praying to this saint of #impossiblecauses that -baby is born safely and not in distress at time of induction -that baby's insides go back and heal well, avoiding surgery -and that baby comes home quickly!

If you feel so called, feel free to join us and @praymorenovenas, who post the prayers.

It started yesterday but #betterlatethannever!

#stjudenovena #saintjudenovena #prayforus https://www.instagram.com/p/CGlHV_4nZxn/?igshid=jc7zxw887nb3