The month of December was really tough. This past month has been a bit easier and we are seeing some improvements with Carter but it has taken a lot of work. We have been to more than a dozen doctor appointments and had 3 outpatient procedures (most recently an Upper GI and a Swallow Study) done at Children's Hospital since mid- December. Its been pretty overwhelming and exhausting for all of us. While Carter isn't completely back to her old self, we have made progress. For those that follow me on Facebook, you have probably seen a couple of posts of desperation asking for prayers. Over the 2 weeks of Christmas and New Years, Carter only gained 2 ounces. Typically, babies gain around 1/2 an ounce to 1 ounce per day so 2 ounces in 2 weeks was not good. The GI specialist wasn't too terribly concerned and just thought that she had a bad milk allergy that had done some damage to her intestines (which was confirmed by a stool sample) and she just needed a little more time. A week later she gained 2 ounces in one week. While I thought this was an improvement, the Physicians Assistant we see was starting to get concerned and gave us 3 options:
1. Admit her to the hospital and do some more extensive testing like and Upper and Lower GI scope where they would sedate her and look via a camera at her digestive system to look for things like inflammation, and do a pH probe study to monitor the severity of her reflux,
2. Switch her to a completely hypoallergenic formula and add that to my breast milk to make it higher calories (we had already been doing this with another formula that is for milk intolerance but she really struggles with bottles so on top of nursing we were only supplementing 5-8 oz a day) and give her another few days or,
3. Put in an NJ tube (feeding tube that goes into her nose, past her stomach, right into her intestines) and feed her that way which meant we wouldn't have been able to nurse or even do bottles when she had this in.
I panicked. I was at the appointment alone thinking that this would just be a weight check and follow up. I broke down and called Harrison and my mom to discuss our options while the PA went to talk to the nutritionist about Carter. Fortunately, the nutritionist didn't think our situation was as dire as the PA did and made the point that she was still gaining, albeit slowly, she was staying well hydrated, she is still on the growth chart, and not considered failure to thrive. She suggested option 2 before we do the more drastic things. So we left the doctor's office knowing we had 72 hours to make a pretty dramatic difference or else we would have to make some difficult decisions.
We tried the new formula and were basically force feeding her bottles. After talking to several friends and a lactation consultant, I borrowed a scale from a friend and we started weighing her before and after nursing to see how much she was getting. We found out that while in the morning she was getting 4-5 ounces when nursing, in the late afternoon and evenings, she was
only getting 2-2.5 ounces which is pretty common for you milk supply to drop in the evenings but I didn't know it was dropping that much so I decided to start nursing much more frequently (every 2 or 2 1/2 hours vs very 3-4). The second day was exhausting. We were trying a bottle for about 20-30 minutes before nursing. She fights and cries with the bottles and takes in a lot of air because she cries so much. Then she would nurse for 30-45 minutes. Then we only had about a half hour or so before starting the process over again. After she projectile vomited up a bottle Tuesday night because she had so much air in her, I decided bottles just weren't worth it. So on the third day, I nursed her pretty much every 2 hours like clockwork all day and didn't do any bottles. She was a completely different baby. She was smiling and laughing, cooing and making sweet noises and was just so much happier not being forced to take the bottles which filled her with air. I had no idea how much progress we made in those 72 hours so I was a nervous wreck going to the appointment Thursday morning but I had decided that even if she didn't have a great weight gain, that I wanted to give her a few more days of nursing more frequently in the evenings before doing anything drastic. Well, she gained 6 ounces
in 3 days! I was ecstatic! I cried when I saw the number on the scale. The GI specialist agreed that as long as she continued to gain, we could hold off on the invasive testing. Again, she still isn't nursing perfectly and fusses and unlatches during some feedings but its so much better than it was and she isn't refusing to eat so while it can still be frustrating for me, its manageable. I also started a medication and supplements to help increase my milk supply a little which should also help her get more per feeding and I've been really making sure I am eating and drinking enough which I admit, because of stress, I probably wasn't getting enough calories or drinking enough water.
A week later, we had another follow up and she had lost 2 ounces but they weren't concerned because we figured that the 6 ounce gain wasn't all true gain. Because she is happy, growing in length, and meeting developmental milestones (minus tummy time which she HATES with a fiery passion), they are comfortable with being more patient with her and not forcing some of the invasion procedures and alternatives on us. I am weighing her a few times a week at home and according to our scale, she is gaining about a half an ounce a day.
Here are some pictures from the last couple months!
|Mom, when will you stop taking pictures and put me down for a nap?|
|Pretty impressive pout face!|
|I've discovered my hands!|
|Seriously mom, have you seen these things? They are so fun!|
|Rockin' my animal print!|
|Love that sweet face!|
|I mean come on! How cute is she?!|
|You say I'm how old?!|
|We won't tell Daddy that Mommy put a big pink bow on my head, but don't I look beautiful?|
Stats: 3 months- 10 lbs 1 oz
4 months- 11 lbs 3 oz (5th percentile) Length- 24 inches (40th percentile)
Head circumference- 41 cm (50th percentile).
Likes: Still loves motion and all types of white noise! I have an app on my phone that has a ton of different sounds. Its very handy when we are out to just turn it on and put it in her car seat. Its amazing how she responds to it. Her favorite sounds seem to be "extreme rain," "running shower," "beach waves crashing," and "flowing stream." Can you tell my child likes water? She also like hairdryer, vacuum cleaner, and clothes dryer.
She loves playing on her play mat and batting at her toys. She also loves looking at herself in the mirror on her play mat or in the car. She loves rattles and loves a specific rattle that has a little face on it that lights up. We affectionately call him Pedro, a name that was given to him when he belonged to my niece.
She is a huge fan of bath time and cries when I get her out. I feel ya girl. Mama loves a nice, long bath too!
Dislikes: She thinks tummy time is some rare, horrible form of torture. I think part of the reason she doesn't like it is because it pushes on her tummy which makes her reflux worse but I also think she hates it because for those 3 or 4 weeks when things were really, really bad, I wasn't good or consistent about doing it every day so she's just not use to it anymore. We are back to doing it a few times a day, even if for only a minute or so. She seems to be doing a little better. We still struggle with bottles. I haven't been trying them really the last few weeks because I have been focused on nursing her frequently to help her gain weight, but now that I know she is, we need to step up our game. It would be nice for mama to be able to leave the house for more than an hour or two!
We still are struggling with really short naps which makes for long days. Sometimes I can get her back to sleep and sometimes I can't but she definitely is still tired when she wakes up after 30 or 45 minutes because if she doesn't go back to sleep, she gets fussy within about 30 minutes after waking and the next feeding is usually pretty difficult. We are lucky that she is doing so well at night. The past several nights she's been going to bed around 8:30 and waking at 6 AM which is a little earlier than I'd like but its nice that she makes it through the whole night.
I am trying to do a couple naps a day in her crib so she gets used to it and she is doing okay but I'm scared to try at night since she does so well in the Rock and Play. I know we have to do it sometime though and I am just hoping that she sleeps as well at night in the crib as she does the Rock and Play. I wish they made a toddler version so I could keep her in it forever and not make the transition! I elevated the head of her crib to help with her reflux but the RNP still seems so much cozier and snugglier (not sure if thats a word). I figure we will try it on a weekend here in the next couple weeks when Harrison can help get her back to sleep if she does wake a lot.
At her follow up for the GI clinic, she had gained 11 ounces in 2 weeks which they were very happy with. They are letting us continue with what we are doing and we don't have to go back for 2 months! At her 4 month check up, they were also pleased with her gaining. Even though she is still low on the growth chart, she is maintaining her statistics and no longer falling on the growth chart like she had been doing for the last couple months. While they aren't overly concerned, they do think her tone muscle strength is a little less than what it should be because of everything that she went through. For basically the month of December and even the first or second week of January, it was just survival mode. We were basically just trying to get her to eat enough to stay hydrated. Playing, tummy time, and working on developmental milestones was very hard because she was in so much pain, miserable, fussy, and had very little energy because of her struggle to eat. So it isn't a surprise to any of us that she is a tad behind. The pediatrician said she wouldn't even consider it a "delay." We are working really hard on tummy time and developmental stuff at home but she thought it would be good just to be proactive and go ahead and make a referral for a few sessions of Physical Therapy. I am glad we are going to be proactive and go ahead and get her evaluated so that we can learn more exercises to work on with her at home. Even just in the last few weeks working with her at home with the skills and exercises I know from being a nurse, I have noticed an improvement so I think she will be able to catch up.
I am so glad that the worst of her issues seem to be behind us and she is starting to thrive! Hoping we keep seeing more and more improvement and weight gain!