Psalm 119:41 May your unfailing love come to me, O LORD, your salvation according to your promise;
I have been meaning to update the blog before this but due to the insane week and a half we've had, I haven't had time. I have started to write Gemma's birth story but had to put that on hold.
First of all, we are all fine. Gemma continues to amaze us, enchant us, and challenge us. She's beautiful and we absolutely adore her. We've had a wild week and have been in and out of hospitals, clinics, and offices with our girl making sure she's okay.
When we were in the hospital, Gemma really never nursed. I saw multiple lactation specialists and no one could get us nursing. She would never latch and stay on. Because of this, or so we thought, she was super fussy and would nurse for hours on end without really getting any nutrition. Her pediatrician sent us home with directions to monitor her "output" so to speak and if she went 24 hours without a messy diaper or her urine continued to be concentrated, that we might have to supplement. I was in so much pain from nursing that I decided to pump for a day and feed her by bottle. She fed off the bottle fine but did some interesting gagging at the end of her feedings. She would stop breathing, turn red, white around her lips and gag. It didn't last long but long enough to startle me and her. I noticed that when she was 3 days old, she wasn't stooling like she should have so I called the pediatrician and asked how much to supplement with. We then started adding formula to her bottles of breast milk. She was instantly a different child. She was full! She slept, she pooped, she smiled. She still gagged occasionally but I thought that it was just a normal thing.
On Sunday, when Gemma was 4 days old, I had a home care nurse come visit to work with us on breast feeding. I didn't realize how important breastfeeding was to me until it wasn't working for us. Jayne, the nurse and lactation specialist, was wonderful. She worked with us for over an hour and thought that Gemma had a dysfunctional suck. She told me that this could be due to Gemma's little nose being squished during pregnancy/labor/delivery and to talk to our ped about it. So, I continued to pump and feed with the formula supplement.
On Monday, 5 days old, we went back to the pediatrician for her first appointment and she had gotten back up to her birth weight! This was amazing! Our pediatrician was still noticing the squished nose that Gemma had and thought we should get it checked out for a possible deviated septum so she called Midwest ENT and off we went for our first specialist appointment. At the ENT, they looked at her nose, telescoped it to make sure that all the bone growth was normal and gave us the all clear. The bones in her nose look normal and the cartilege at the tip will hopefully straighten out. (It's so minor, if it doesn't, it's barely noticeable anyway.) So, we ruled out that her nose had anything to do with the breast feeding issues.
Back to the pediatrician on Tuesday for a breast feeding consultation with the doctor. She watched me feed her and then watched her bottle feed. When I described some of the gagging stuff that I had seen with Gemma, the doctor thought she might have reflux. She also wanted to make sure that her swallow and suck were normal so she made appointments for us to get a swallow study and Upper GI done at Children's Hospital on Wednesday (one week old).
Off we went to that study- keep in mind, this whole time my hormones are OUT OF CONTROL. I cry at the drop of a hat, am so overwhelmed with all the pumping, feeding, watching her stooling patterns that I'm wound just about as tight as a top! So, we bottle feed her Barium at the swallow study and the Speech Clinician notices right away that Gemma is aspirating her liquids- she said mild to moderate. She adjusted the thickness of the Barium and the type of bottle nipple until Gemma was taking liquid just into her stomach. After that, we did the Upper GI study. I was praying the whole time that they would not have to put a feeding tube in her. I can't handle her being in pain. Immediately, they noticed she was refluxing (sending stomach contents and acid back into her esophagus- they said it was class 3 or grade 3 which means it reaches the back of her throat.) Because they saw this right away, they didn't need to do the feeding tube. Thank You God.
From there, the speech clinicians came up with a plan to thicken all of Gemma's liquids. I add something called Simply Thick to breastmilk bottles. I am supposed to add rice cereal to formula bottles if I use them but I can't get the ratio right yet. As of right now, breast feeding is off the table. Breast milk on it's own is too thin and because she has such a strong suck, she's taking too much in and aspirating it.
When I spoke to a speech person who is also a lactation specialist, she thinks that all this started because she aspirated my breast milk in the hospital. She said that babies are smart and Gemma must have made the connection that "whoa, that went down the wrong way, I'm not doing that again" and now she just quits whenever she's put to the breast. Tricia, that speech/lactation person, thinks that had we not found this early, Gemma would have stopped taking food from the bottle too. She also could be the kid who gets pneumonia or RSV due to the fluids already in her lungs.
I knew that having a newborn was a lot of work, I am under no illusions about that. But I expected difficult breastfeeding, late nights etc. not hospital visits, boxes of hospital grade food thickeners and multiple follow up appointments. Our pediatrician has been great and pointed out to me that I need to just enjoy Gemma. It's so hard to sit back and just soak her in when all I've been doing is dealing with her eating. I've set a plan for her feeding and will continue to pump and do 1/2 breast milk 1/2 formula bottles that are thickened for her feedings. I don't know how long I'll pump, it makes me pretty uncomfortable, nauseous and hormonal. I'm hoping that goes away. It's so important to give her the nutrients and immunity from my breast milk. Especially at this time of the year.
We've asked all our friends and family members to stay away if they have any illness (cold or otherwise) since it could be a much more serious complication for Gemma and people have been really respectful. I just want to be a hermit with her. I would be totally fine not seeing anyone until she's 6 months old. I love taking naps with her on my chest, watching her smile in her sleep and singing to her.
Once we get the reflux medicated, she should also feel much better. She's really uncomfortable at night and whenever she's awake. She constantly wants something dripping down her throat so she'd eat until she exploded, suck on anything, or just cry herself to exhaustion so she doesn't have to feel the reflux. Poor little honey.
Like I said at the beginning, we are all fine. She's healthy and will most likely grow out of the aspiration and the reflux. One clinician said that she had no doubt in her mind that she could get us breast feeding in 6 weeks. I will believe it when I see it since she aspirates and is in pain whenever I breast feed her now.
Thanks for all the congratulations and well wishes. We do LOVE LOVE LOVE her and can't imagine a more amazing gift than her presence in our family. It feels as though she's always been here and yet just arrived. I know that God has chosen Abe and I as Gemma's parents and I'm honored and overwhelmed to make decisions that will have her best at heart. I love being her mama.
I will post her birth story as soon as I can write it and if you'd like to see more pictures of her, please go to ciderpressstudios.blogspot.com and check out the newborn pictures the incredibly talented Julie Feldman did last weekend.
1 Samuel 1:27 I prayed for this child, and the LORD has granted me what I asked of him.