Here she is:
24 weeks (May 20)
When a baby is born, we don’t expect anything to be wrong. Not after we see that she is perfect. But since about 2 months old, her family doctor has said Khloë is “floppy”. I wasn’t really worried until she turned 4 months old and still couldn’t lift her head while on her tummy. Even now, her head flops forward after she holds it upright for a moment. She uses her arms and manages to eat her hands, but even a plastic toy ring is too heavy for her. She rubs her feet on any surface, but does’t move her legs.
On May 21 we saw Dr M, a neurologist at CHEO in Ottawa. He noticed right away the low muscle tone (hypotonia) that Khloë displays. He tested her reflexes and found none. He performed an EMG (tiny acupuncture-type needles inserted in her wrist and feet and a machine that causes little shocks); the EMG showed a disconnect between her muscles and motor neurons. At this point, Dr M suspects a genetic disease. He sent Khloë for blood work, and it took three pokes before the nurse finally got blood out of a vein. Poor baby was so upset! Now we wait for the results of the test; if it’s negative, then the next procedure is a muscle biopsy that will hopefully provide us with an answer. Khloë is to continue with exclusive breastfeeding and not receive any solid food until we know that her throat muscles are strong enough not to cause her to choke and aspirate food into her lungs.
I’m trying not to stress out and worry my self sick. Khloë is happy, smart, and otherwise healthy. She may need physio, she may learn to sit and roll over with a lot of help, and if she is lucky she may even learn to walk. I hope that with the support of our friends and family we will be able to get through this and provide our baby girl with all the love she deserves. She is definitely spoiled. 🙂
On a happier note, we have a picnic planned this week with Stacey and the girls and a visit with Amanda and the boys later in the week!
The latest photo:
23 weeks (May 13)
Mary from Infant & Child Development came to assess Khloë on Wednesday. She was very nice and explained her concerns. She pointed out a few things that Khloë does with her hands and feet that I hadn’t noticed before; I wouldn’t have known it wasn’t normal, as she’s my first baby. Mary said the problem looks like low muscle tone, which would explain why Khloë still has trouble holding up her head and doesn’t use her legs much. She agreed it would benefit Baby Girl to come into the program, so starting in June she will see Khloë every week to work with her. She also wants to teach me infant massage!
Then on Thursday we drove to Ottawa and met with pediatrician Dr I at a medical centre. She looked Khloë over and said she was very concerned about her gross motor development. She is going to get Khloë an appointment with a neurologist at CHEO for an MRI. I really don’t know what to expect for her development or what the issue could be. She’s such a happy baby and has no idea that she’s behind for her age.
I’m glad we have the resources here to provide support for my girl.
My growing girl’s latest photo:
19 weeks (April 15)
Khloë had her four month needles on April 15th. Just like last time, she got upset after the second jab and was difficult to calm down, but she didn’t choke while nursing this time. A friend suggested breastfeeding her during the needles but that doesn’t seem to help her discomfort. Dr K also put in a consult for Khloë to see a pediatrician in Ottawa because she’s still concerned about her neck muscles not being strong enough for her age.
Due to the time of her doctor’s appointment, we missed another session of “Make the Connection”. But we did get out to Prenatal Nutrition this week. All the girls have had their babies!
This weekend was Khloë’s first Easter! We didn’t do much as she really has no idea what it means right now. We spent the Saturday at Ryan & Stacey’s. Jordan helped his friend build a play structure in their backyard while Khloë and I hung out with Stacey and the girls. On Easter Sunday we got Baby Girl dressed up and took some photos, then went to church. Sunday evening we had potluck dinner with a group of friends from church. It was an enjoyable weekend.
This week Khloë also had her first real giggle! I kept blowing raspberries on her stomach and she thought it was hilarious. 😀
Eek my baby will be five months old in couple weeks!
As Khloë’s symptoms were not improving, and her cough and rattling breath was worrying me, I took her to see her doctor late Wednesday afternoon. On Monday she had seen a nurse practitioner, but this time it was her family physician. Dr K took a look at her and said that it looked like bronchiolitis.
She sent us down the hall to the ER (the health team is located in a hospital) and we checked Khloë in. They took us right away. She was examined by another doctor and given a steroid drug that would help with her breathing and breaking up the mucous. Khloë was getting upset by this time; she really wasn’t feeling well and didn’t like the constant poking and prodding. The doctor sent us to the X-ray department because she wanted to rule out pneumonia.
Jordan had to put her in the Pigg-O-Stat, a contraption that looks like a torture device to children (and to Mommy). She was closed in with her arms above her head, crying because she didn’t know what was happening; I felt so terrible for having her in there. The technician took the x-rays very quickly, though, and within minutes Khloë was out. She looked so pathetic and sad in that thing.
After that ordeal, we went back to see the ER doctor. She said she’d had a look at the scans, but without a radiologist there to examine them, she wasn’t 100% certain it was pneumonia. She said she could put Khloë on an antibiotic that it may turn out she didn’t need, or we could wait until the next morning for the radiologist to view the scans. We decided to wait for the results.
Because Khloë wasn’t nursing very well with her difficulty breathing, I woke up at 4 am Wednesday morning with a severe pain in my left breast. Mastitis struck again! By 10:30 am I had developed a fever, headache, and chills. Khloë and I slept most of the day until it was time to see Dr K. At Khloë’s appointment I mentioned that I was sure I had mastitis again. One quick peek, and Dr K wrote me a prescription for clindamycin.
So we went home with sick baby and antiobiotics for Mommy.
Thursday morning Khloë seemed in better spirits. The rash on her face and torso had disappeared. However as the day progressed she got fussy and began to cluster feed. She still isn’t feeling well but she was at least breathing better. I continued to give her Tylenol to help her sleep.
By today (Saturday), I could tell she’s feeling better, though she does have a lingering cough. We plan on heading to Kingston for a few days to visit family. Unfortunately, I came down with a cold Wednesday night and I feel pretty miserable right now.
Here is week fourteen’s photo:
14 weeks (March 11)
Khloë had a doctor’s appointment on Wednesday. She weighed in at 13 lb 12 oz and her length is 24.4 inches. Growing girl, for sure! Dr K just wanted to make sure her neck muscles were improving, which I believe they are. Khloë still doesn’t lift her head when she’s laying on her stomach, but when she’s being held or sitting on one of our laps she is doing so good with holding her head. So no trip to CHEO yet.
The 4-pack Aden & Anais muslin swaddle blankets from Indigo arrived this week. I’m so happy that I got “Little Lamb” set on sale! I LOVE these blankets; they are useful for many things. I was given 2 at my first baby shower and another one at the church shower, but three just wasn’t enough (given the amount of times baby girl likes to throw up on them). Now I have plenty.
The four headbands, pink lacey diaper cover, and purple lace romper from PetitePeppermint on Etsy showed up this week as well. 🙂
Getting ready for a bath
Starting on March 18th, Khloë and I will be going to “Make the Connection”, an 8 week program for parents and their babies. It’s supposed to give us new ideas for play time and help us connect with our children more. I hope it will be a good experience.
The above collage is Khloë and her ultrasound picture!
She also went the whole week without a dirty diaper and then on Sunday she finally pooped! The doctor said its normal for breastfed babies to have irregular bowel movements and that I shouldn’t worry, but I was definitely worrying. I have never been so happy to change a stinky diaper (or three).