Showing posts with label Speech Therapy. Show all posts
Showing posts with label Speech Therapy. Show all posts

Wednesday, June 13, 2012

Sign language

So, I've been putting off sign language since it's highly inconvenient to ask my child if he wants a bottle while holding him, or remember to refer to either of us using sign because Wes is so consumed by his toys that when I "bring it up", he's so not on the same wavelength. {sorry in advance for my run-on sentence}

So, here's our mini goals...








 



Ok, so this post was to put some accountability on myself. So, if you see me, make sure I'm signing like a beast. {"I must not be a lazy mom." "I must not be a lazy mom."}

Monday, June 11, 2012

Bottles {suck} - no pun intended

Ok, this whole feeding debacle is driving me nuts, and my kid is what, 6 weeks old!?  Granted little man is gaining weight, but he's still the weight of many, many newborns. Like, not 6 weeks old newborns; newborn, newborns.

In any event, there was a lot of testing with bottles that claim to be "the best bottle" to reduce gas,spit-up, gagging, choking, etc. So, if you're expecting a baby, Down syndrome or not, make sure to buy several different bottles. Better yet, ask friends to loan you one of their bottles to test out or buy the single bottles at the store. Granted, they may cost $5 each, but it's better than having a gift bag full of unused "flop" bottles like I have. If you haven't picked up on my thriftiness attitude by now, I really, really hate wasting money.

If you still want to registers for bottles, that's fine. But still buy the single bottle as well in the event you need to return them.  Oh, and just because you intend to breastfeed, doesn't mean you will. Trust me, I didn't want to hear it either. Sorry to burst your bubble, but there is a good possibility it won't happen or it won't be "easy". Not that breastfeeding is easy per se, but for some, like me, it was a chore. No, it was a flipping nightmare.

Anyway, here's my experience from birth til now...


This premixed 2oz bottle along with slow flow (teal) "disposable" nipple {Do not throw out!! The companies lie when they say "one time use"} was the first exposure to eating Wes had.  He does extremely well on this bottle/ nipple combination STILL, and will even drink consistently with the regular flow nipple, either Enfamil (blue) or Similac (clear - not pictured) brand. The con - they're expensive, so as soon as I run out, I am not getting anymore unless covered by WIC. {Oh yes, I get WIC with Wes' diagnosis in Pennsylvania for the first year. Bet you didn't know that? EXTREMELY helpful, so check with your state!!! In my state, income doesn't matter.}






2oz Snappies and 3oz Medela breast milk collection bottles are fantastic! I used them with both breast milk and formula and Wes responds great to them. I use the cheap hospital nipples (see up^) with them and it's perfect. I think it's because they hold little air and they're also easy to hold, especially with the odd way I need to feed the beast.



Tommee Tippee - anti-colic were a total bust. Wes didn't want to breastfeed, and these bottles are shaped to mimic the breast. He's no dummy, so when I introduced him to these, he freaked. Needless to say, these are the bottles that are hanging out in a gift bag.

However, the sterilizer is amazing! Just 4 minutes in the microwave and voila! Love, love, love it! But, don't expect to get anything taller than a 6oz Playtex vented bottle in it.




Just gonna say it - the most expensive POS' out on the market today. My kid hated them, my friend's "typical" kid hated them. Not worth the money unless you have the pump that automatically comes with bottles. The caps are great, I will give it that.


The Dr. Brown's had the same reaction as the Medela bottles, but worse due to the number of parts involves and the INCREASE in gas Wes experienced. I'm so glad I just bought one test bottle because they're horrible for him. If we do use them, we do not use the bangs and whistles in the bottle nor the nipple. We actually will put the chap Enfamil or Similac nipples on them.




These Playtex VentAire bottles are amazing. They work for the way we need to feed Wes, plus any bubbles that are in the bottle release out of the bottom vent holes.  And you know what? When I am low on formula and know that Wes can keep going, I have John put more formula in the bottle by taking off the bottom cap and filling it up. Ahhh mazing.




I really wanted to love the Playtex Drop-Ins, but they didn't work for Wes. I think it was due to the nipple, but since Wes only likes the "brown nipples", they are a fail. Plus, if you use powder formula, these are a bust. When you shake the bottle, bubbles form in the formula that just won't go away even if you push the air out of the bag. I really wanted Wes to respond to these because they're good for the tongue movement in children with Down syndrome.

In the end, Wes responds best to the 2-3oz breast milk bottles (Snappies & Medela) and Playtex VentAire with those cheap hospital nipples (Enfamil & Similac) due to the fact that all of the excess air is vented out the bottom. Plus, I am able to add more formula to the bottle if necessary mid-feeding. Honestly, Wes just looooves those cheap brown nipples, so any bottle that holds them will do. Since Wes has low muscle tone and we have to feed him lying down, these angled bottles are fantastic. Right now we're working on having him eat at a 45 degree angle for the first part of feeding as to not overly tire the baby boy out. 

Lesson to you - do not get rid of ANYTHING and make sure to borrow from others. It will save you tons of money!


Monday, June 4, 2012

Feeding

Those of you who have been following my blog since the beginning, or those who have tuned in since the birth of Wes, may be wondering what's up with the way Wes eats. Well, it's a long story, one that I wanted to share at various points in time, but was unable to due to issues with the "old Wes" blog {shaking fists}. Have I told you how much I hate Wordpress? {rhetorical}

In any event, here's what's been going on the last 6 weeks {well, 6 weeks on Monday}


Hospital 
At the hospital I was unable to breastfeed Wes right away due to his jaundice. I could have held out and insisted on breastfeeding exclusively, but I couldn't do that to him. With his diagnosis, the last thing I wanted to do was knowingly put him into a position that could compromise his health. Though Wes was born with a strong heart, I was unsure of the health of his intestinal track so I wanted to make sure he pooped as soon as possible. Besides, the nurses said that Wes may not need to be under the Bilirubin lamp, or have extended time in the hospital if I encouraged him to eat. Since my milk was not in, I was game to give him as much formula as possible to keep his count where it needed to be. The entire time in the hospital, Wes was borderline, so I just kept pumping him full of formula while trying to breastfeed and pump whenever possible.

While at the hospital, I did not produce milk, not even colostrum. This made it difficult for Wes to want to latch because there was nothing enticing him to work hard for his meal, especially since the formula flowed like wine.  Because Wes wouldn't latch, there was no stimulation to bring on milk. This made my anxiety go through the roof because I wanted to provide Wes with the best start possible. Though formula is good, breastfeeding is very important for babies with Down syndrome due to the low muscle tone in the jaw. Though there are numerous benefits for typical children and children with Down syndrome, including a better immunity for one that is typically low, the oral motor benefits are probably the most crucial to develop early on. A proper latch along and tongue positioning as an infant and baby can directly effect the child's oral motor {speech, feeding} development as they age. Knowing this did not help me to relax at all, which I am sure directly effected my milk production. I put a lot of pressure on myself and I wanted to do the best for Wes.

7 days postpartum
Within the first 5 days from leaving the hospital, my insurance company fully covered a nurse to come visit us. She was there to see how I was doing, take my vitals as well as weigh and measure Wes. While there, I mentioned that I was struggling greatly with breastfeeding. Fortunately, my nurse is also a lactation consultant. Within minutes, she had Wes latched on to me and he just noshed away. It was heaven. However, Wes continued to do this for three more hours that evening. Come to find out, he was not getting enough milk; my body wasn't releasing the liquid gold fast enough. He was very fussy and hungry into the wee hours of the morning; I just couldn't figure out what happened. I think this is when Wes' disdain for breastfeeding began because after this day, Wes refused to breastfeed. He would cry, kick, scratch and pinch. Besides, my girls had nothing on those amazing hospital grade nipples Wes was used to in the hospital. {He's a cheap date}

8 days postpartum
I produce 8 oz of milk in 15 minutes of breastfeeding - I thought I was golden. I even sent a pic of my bounty to my husband and proudly proclaiming that I was magically a milk machine.  At this point I was on the milker for 40 minutes at a time to produce 2-5 oz of milk. What I didn't know at this point is that I should have only been on it for 15 minutes with the same results.

1-2 weeks postpartum
My awesome friend Erin came to visit me to take photos of Wes. I couldn't help her in the capacity that I wanted to because I had to pump constantly to just produce enough milk for Wes to eat at his next feeding. I was on the couch that day for at least 3 hours. I was so thankful to have my mom there to help, otherwise I would have been SOL. This was so depressing to me. This is when the machine began to turn into the enemy.

2 week postpartum
The pediatrician was concerned about how little Wes was eating and that he needed to gain weight more quickly than he was. He just reached 6lbs at this point which was a victory to me, but pretty much preemie weight especially at that age. He told me that every 2-3 hours I needed to breastfeed both sides 15 minutes each, pump while another person fed Wes breast milk and/ or formula. At this point I was barely producing enough to supply Wes with what he needed, so I was somewhat stunting his growth with the lack of milk I was providing. At this point I was adamant to just use breast milk which I now look back on and feel somewhat foolish doing. What my pediatrician didn't know, and what I failed to express, was that his feeding schedule would equal out to 70 minutes of breastfeeding, pumping, feeding - and that was when I had extra help. How would I do this? I couldn't, it was impossible. It's no wonder I just cried and cried all the time.

Between 2-3 weeks postpartum
Somewhere during this time I angrily decided that enough was enough. My mom reminded me and consoled me that it was okay that I wasn't producing and that I could just do formula. Nothing was wrong with formula, it was fine. I agreed and stopped cold turkey.

24hrs later
Cold turkey hurts. It hurts a lot! So much so that I was in my bathroom pumping for an hour from midnight to 1. That didn't work so I had to hand express milk into a bottle. That was a low point. It took 2hrs and I was on a roll. Lefty was a milking machine, but righty was not budging. By 3:30 in the morning I had 5 solid ounces. Giving Wes that final bottle of breast milk the next day was a mixture of hope followed by sadness. I only produce so much because I stopped abruptly. This was my last solid connection with Wes in this way. It felt sad, but I felt so free.

I had a beer, followed by another and another. Freedom! {Followed by a bad headache the next morning - ouch!}

After drowning myself in my sorrows of a whole three Boood Light Limes {hey, it was 9 months people!}, I began to happily feed my baby. But....

2 days later
Wes would not stop choking during feedings and would then make these guttural moans and screams that would make any new mom nervous. It would hurt him so bad that he would turn red in the face and thrust my hand into his abdomen to help ease the pain. Of course this occurred the day after our initial Early Intervention meeting where I stated that Wes had absolutely no feeding troubles at all.  I got Dr. Browns {thanks Karen!}, they sucked {sorry Karen!}.The feeding got so insanely bad I thought that Wes would surely choke or not gain weight. He was at the point of refusing to eat; eating much less than he was required to. I immediately contacted our service coordinator Kathy to set up a speech therapist and then I called a private speech therapist affiliated with my hospital.

The next morning
Jolaine squeezed us in immediately. I expressed my appreciation for her doing so and she replied, "Babies always come first; this is life or death." True. From that meeting, Jolaine showed us exactly how to feed Wes ; laying down on his side with my middle finger supporting his jaw. The problem was his low muscle tone in his jaw; he would chew on the nipple, suck well for about 4 sucks, and then breathe in a lot of air. I mean, a lot.  Boyfriend ate an entire bottle in 15 minutes! This was unreal because feedings with Wes before then were 40-60 minute sessions. While there I also mention that Wes had hiccups in the morning and at night, and that it was like that while I was pregnant with him. She confirmed the suspicions of the Early Intervention team that Wes most likely has acid reflux. She suggested to put Wes on medications if his hiccups progressed even with the new feeding position.

4 days later {approximately 4 weeks postpartum}
Wes started apitting up the 4oz bottles... an hour after feeding! WT? I couldn't make an appointment because I had just kinked my neck bad, so I had to wait for the following Monday to contact the doctor if things got worse. Well, I already had plans on going to my mom's, so that was out of the question too. While up in NY, Wes continued to spit up and it got worse. His hiccups got worse and happened all. the. time. So, on Monday I called the doctor, he had me get on the scale with Wes and calculate his weight to get him on the appropriate dosage of meds.

The next day (approximately 5 weeks postpartum}
John picked up the acid reflux medicine. I tried it and it was rough. It tastes like Listerine, but worse. You should have seen Wes' face. John and I learned to go, "Yay, Wes! Woo hoo!" every time we give him that nasty medicine.

This past weekend
Wes still doesn't feed well; tonight he choked on 2oz while John was feeding him his night bottle before bed. He couldn't get the full 4-5oz down because he was hacking away. I would have to say that is due to little man sleeping, but nothing sucks more than a baby that's wide awake before bed.

Well, a choking baby would.

So, in any event we have to go against all the books and feed Wes laying down on his side using a regular flowing nipple {hospital's finest!} and give him Zantac twice a day. This will most likely go on until his muscle tone increases and he can take 8-10 drags from the bottle at a time, not just 4.

Today
Wes has speech therapy and I will be testing out the Playtex Drop-ins. I tried this morning, but Wes is off his feeding schedule, which happens easily when the boy has gas and has to poop. He's funny like that. If you're wondering why I am doing that it's because the Speech Mama  suggested it on her blog and I am open to trying new things. Besides, I need to find something to do while the speech therapist is here; I don't want to chance losing services, especially since Wes will be introduce to solids in August and most kids with Down syndrome don't have a speech (feeding) therapist til a year old.

So, that's up with Wes' feeding. Phew! I told you it was long! {Just imagine how Wes and I felt!}