Several readers have asked me to give an update on Miss Mercy, but I wanted to wait until her surgery to remove the hardware (they are called distractors) from her jaw was complete. (The photo above was from her 3 month photo shoot with big sis, Megan – you can see more of Megan’s work on her photo website – Diverse Reflections.)
After Mercy came home from NICU when she was just shy of 6 weeks old, we spent all day and all night learning how to feed her. Yes, feed her. That was truly the biggest challenge. Even in the hospital that was the biggest challenge.
I told you about her special bottles, but what I didn’t tell you was how hard it was to feed her. She would spend much of the feeding crying. She would take much longer than her allotted 30 minutes to eat. (Cleft palate babies get tired from feeding because they have very little suction – imagine trying to drink through a straw that has a hole in it. The harder baby works, the more calories baby burns, thus causing slow weight gain.) Mercy would arch her back, spit out the bottle, and generally make a mess. It was exhausting and I could not take her out in public. (I still rarely take her out because of all the germies – more on that in a moment.)
I had also begun to notice she was doing something called “re-swallowing” and her breath smelled sour and icky – an obvious sign of Silent Reflux. (I did not realize at the time that the arching her back was also a sign of this.) I put her on a sensitive formula and watched my diet for spicy foods, but it did not fully clear the problem up. (Mercy gets about 1 bottle of breast milk a day. Establishing a decent pumped supply has been a problem for me from the beginning. I’ve never been a good pumper, but I’m determined to do the best I can, keeping in mind I have a lot of responsibilities that require I not be tied to a pump all day long.)
At her follow up appointment with the Cleft Palate Clinic, they were bothered by her lack of weight gain and obvious gulping at the bottle. We were given instructions to fortify her formula (but not her breastmilk bottles) and they put her on a medium dose of reflux meds. I have never seen such a change in a child! She loved the thicker formula! The reflux meds worked wonders. The re-swallowing all but went away! No more arching her back, no more fighting her way through feedings. It was wonderful!
{My oldest daughter calls this her “Ellie Face” – as in Ellie from the movie UP.)
There were also the NICU Effects – as we call them. Mercy has been smiling for a few weeks now, but it wasn’t until a short time ago that she began to make eye contact with us. Sure, she would take a fleeting look and then quickly look away, but it was beginning to bother me how she didn’t really want to interact with us. She’d smile from afar or “talk” while looking out the window, but she avoided our faces most of the time. However, more and more she’s interacting with us – and it is soooo sweet!
She is also very bothered by loud noises – especially when she’s eating. You cannot talk while you feed her, and most of the time I will sneak off to the bedroom so she doesn’t have to deal with the rather frequent occurrence of outbursts of laughter at our house. We sit and rock quietly while she drinks down her bottle. If she’s not eating, she seems to be fine with the craziness – and even tolerates the prodding and poking she gets from Creed & Aspen (ages 4 and 2).
I mentioned I don’t take her out much. A baby with a cleft palate is more at risk for ear infections. Anything I can do to keep her unexposed to viruses that could lead to fluid on her ears, I’ll do it. I know it is inevitable, but so far, she hasn’t gotten sick – and I am very thankful! It’s my motivation to keep pumping, no matter how little I get.
So, a bit about the recent appointments and surgery…
On Valentine’s Day, she had several appointments, with the main ones being Genetics and Plastics. Going to genetics was a choice we made because of the possibility that she could have a syndrome sometimes associated with Pierre Robin Sequence called Stickler Syndrome. Knowing whether or not she has this would help us in the future by knowing what to look for and how to care for her. That said, the geneticist doesn’t see strong signs that she has it. We will have a definitive answer in a few months, but even if she were to have the markers for it, it wouldn’t be a very severe case.
On Wednesday, we spent most of the early morning hours feeding and bathing Mercy according to surgery instructions, and then headed to the hospital for what was supposed to be a 10:15 am surgery. However, we ended up waiting 4 hours for a bed to come open! Thankfully, Mercy managed to sleep her hunger pangs away with a little help from a vanilla-flavored pacifier and some “sweeties” – aka sugar water you can dip the pacifier in.
The surgery took about an hour and a half. They removed the hardware seen above, but you might notice how the end of one of the distractors is broken. At some point after the pin turns as Mercy’s jaw pulled back into a normal alignment, the distractor broke. The bone has fused together successfully, so no worries, but it has left her with a very slight asymmetry. We’ll keep an eye on it to see if it actually matters when she’s older.
I am writing this late Wednesday night. I came back to the Ronald McDonald house to grab a few things for overnight. Mercy has been pretty fussy (and boy, was she hungry!). Her face is quite swollen, but before it swelled up, we could tell a difference in how her jaw looked without the hardware in – not quite the chubby cheeks she had, but still very kissable! She still has several appointments she will need to go to – vision, hearing, and a sleep study – but she won’t have any other surgeries until she is 1 year old when they will repair her cleft palate.
This time last year is when I found out I was pregnant with little Mercy. What a year it has been! A pregnancy full of ups and downs and difficult times. A birth that didn’t go at all like I planned. Weeks and weeks of NICU, 3 surgeries in the same number of months, and countless doctor’s appointments and weight checks. But, still I am grateful. I am grateful to all the people who pitched in to watch my children and bring them meals. I am grateful to the people who continue to support us as we walk this road. I am grateful to the people who sent gifts, money, blankets and afghans, jammies and even socks. I am grateful for family and friends who surrounded us during this time and made it much less painful. I am grateful for the friends we met along the way – some with happy endings, others without. I am grateful for doctors and nurses who care for my little girl with such love and tenderness. I am grateful for mercy and for Mercy. What a story this little girl has to tell!
Rébecca says
She’s beautiful ! Thanks for the update.
Jodie says
So happy the surgery went well. That is some serious hardware!
In the beginning, the journey seems so unfamiliar and difficult and you wonder if you’ll ever get back to normal – or find a new normal. I found that, at about the three month mark, I felt a new normal settle comfortably on all of us. There were, and still are, appointments, questions, decisions but it is all a part of who our family is now.
I totally agree with the not going out much. Our Audiologist gave me that advice because Michael’s Down syndrome means he also has small ear canals and a less active immune system. It seems like an over-reaction and over-protective to some, but I never regretted it. Now that Michael is two and a half we get out and about but I think the illness-free first year he had helped him immensely, developmentally and with his all-round good health.
Best wishes to you all. Mercy is such a doll – the photographs are beautiful.
Reggie says
She looks beautiful and thriving! Did anyone ever suggest the Johnson & Johnson squeezable bottle to you? My little one also has Pierre Robin and that worked wonderfully for her. It’s true, she never learned to suction until a year old or better, but she also had next to no feeding difficulties either. Another thing I did, is once she began solids, I used a medicine dropper to squeeze a small bit into one side of her mouth. A spoon was useless as her smaller lower jaw would keep the majority of the food from entering her mouth. As for ear infections, my little one has never had one. Do they plan to put tubes in during her cleft repair? That is what they did for my little one. Glad to know you are figuring one another out! She really is such a beautiful child!
P.S. In regards to pumping, I found it worked best for me to just have specific times I did it, typically every three hours. I would just keep making up bottles until I had what she needed in the fridge for a day, then freeze the rest.
Kathryn says
Oh Amy, she is just beautiful. The Valentine’s day picture, she looks just like you!
I’m so glad to hear how she is thriving. What a road this has been!
I’m so inspired by you. You have done, and are doing, a wonderful job!
Big hugs and prayers.
Natalie says
Her eyes are so beautiful! In that first picture she looks like a doll, so precious.
Charlotte Moore says
What a sweetheart Miss Mercy is. Love the picture with the heart clothes. So precious! Thanks for this update. What a ride you all have been on. GOD BLESS!!
Sharon B says
She is so very beautiful! Thankful that the surgery went well. My son was born almost 16 years ago with a bi-lateral cleft lip and palate. We were blessed to know before he was born to be prepared for him to have the cleft issues. it made such a huge difference for us. We have special bottles, Pigeon Bottles, on hand and he ate like a champ.
We had to special order those bottles. Your post made me go look. They are now available via Amazon.
Donna says
Your precious baby is beautiful and most if all, a special gift from the Lord. Thanks for sharing her with all of us! I will be praying no germies reach her tender body and infect her.
Sheila Schrauben says
Thank you so much for sharing!! What a delicious little dumpling Mercy is.
Tirza says
She is beautiful! What a blessing she is. Will continue to pray for you and your family and it is so great to hear how God has helped you all through these hard times but also such blessed times!
Courtney lemon says
Wonderful update! With a NICU graduate of our own, can relate so well. We’re almost two years out and enjoying our active, adorable, loving toddler. She ended up with a Noonan Syndrome diagnosis, but very mild effects. Thankful for the Lord’s faithfulness, and rejoice that you have also seen it in your family!
Diana says
Thanks so much for the update! I can only imagine going through what this past year has been for you, but you have been amazing. Mercy is beautiful!
csmith says
So glad to hear baby Mercy is doing well! My daughter (now 7) was born with the same condition so I understand exactly how hard this must be. Our daughters’ treatments seem to be identical so if you have any questions about what to expect in the future, or you just want to chat, send me a message. I would love to share my Rosie’s progress with you.
JC says
Thank you for the update. She’s a little sweetie!! What an inspiration you all are.
Sarah Faulkner says
Amy, what a wonderful update. 🙂 I wanted to comment about Mercy’s aloofness and lack of eye contact. I have adopted two kids, one with medical trauma, and one with emotional trauma. When a babe goes through scarey painful things (even if it’s to save their life) it causes them to not want to attach to people. People are scarey and cause pain. Understandable for a little one. This happened to both my kids. With Mercy the solution is very easy to over come this: wear her in a sling as frequently as you can. This will help her feel safe and secure and rebond again. 🙂 You can Google Reactive Attachment Disorder in kids to learn more, but before the age of 3, closeness will over come many fears. 🙂
Linda says
When pumping try pumping one breast at a time while hand expressing (hand express and pump same breast at the same time) studies show you can get up to 50% more milk. Thanks for the update. She is sooo cute!!!
kaci says
She is just so cute!!
Karyn says
That is one beautiful baby girl; I love how similar your kids look! Make sure you’re getting rest, too, sweet Mama. Thank you for the update 🙂
Suzanne says
We are still praying for you all!
Elizabeth says
Amy, thank you for sharing pictures of Mercy. She is beautiful! I have prayed for your whole family throughout this and will continue. I cannot imagine how difficult this has been for your family. Praying she recovers quickly!
Marion says
Thank You for the update on Mercy. She is beautiful. God Bless Mercy and all of your family.
Marion
Laura says
I was a NICU baby. I’m 22 and can’t handle loud noises to this day. It’s definitely a thing. I’m so glad her latest surgery went well!
Laura says
Oh, she is so beautiful and vibrant! Praise God! It is so good to see her face again. 🙂
Terri says
Oooohhhhh……could she be any more beautiful?!?! Praise God for His faithfulness and mercy, and Mercy. 🙂
Pat says
I have found chiropractic treatments help prevent ear infections. I had terrible ones as a child, my son also, then my daughter started down that road and the pediatrician was predicting drainage tubes. We had just started seeing a chiropractor and he assured me he could fix ear infections. Two treatments later and never another ear infection. My one grandson has never had one and my second grandson only one when he was away from home. They have both been adjusted since birth about once a year.
Mercy is a sweetheart, continued prayers for her and the family.
Chelsei says
Absolutely beautiful and I agree she looks a lot like you. So happy to hear she’s doing so well. It’s truely amazing. Keep up your amazing work momma God Bless!
Tarese says
Surgery, NICU for 6ish weeks, jaw distracted… These are all things we’re *very* familiar with as our son was born with PRS. 🙂 He’s 7 now and doing great!! Hang in there! There truly is a light at the end of the tunnel!
Margie says
Hi. You mention Creed is 4 and he was the baby when I began “following along”. Big family here, too, so I never have or take time to comment; however, you are appreciated and prayed for, as are your family. Your blog feels like a good friend. Thanks, Amy.
Jen Holm says
Praise the Lord for His tenderheart and quite a fondness towards Mercy. I think of my children like my ‘mission field’…. what a blessing to have her as a part of your mission field.
Marita says
Thank you for the update. She is beautiful!
My son also had silent reflux. What helped him was a few visits to a chiropractor. If the back is out of alignment near the shoulderblades, it affects the stomach. The chiro also showed me how to massage his stomach in between feeds and advised a probiotic. I feel the visits to the chiro has been a lifesaver. From baby drinking very little and losing weight to drinking like a champ now.
May the Lord continue to give you and Mercy grace.
Holly Castillo says
Amen! All good news!
If you consider starting a funding for a hands free pump, like “Freemie.” I’d donate to help your angel receive all the blessings of mommy antibodies.
Amy says
Awww, you’re sweet, Holly! I’ve actually never even heard of that…off to research!
Stacy says
Yes, if there’s a better pump out there for you and Baby Mercy, you should consider a gofundme campaign or something to let others help you get what you need. If you do decide to do something like that, please post about it so that we can contribute. 🙂
God bless you and your beautiful family.
Andrea says
What a little doll! So glad she’s past this surgery! Praying you all get the rest and peace you need after such a busy, unpredictable year.
Many blessings!