Friday, August 01, 2008

8/1/08 Update

Hi everyone,

Good news, Quinn came off oxygen yesterday and is doing really well on room air! phew, this means a big sigh of relief for us. I was really scared when he was getting worse and not better and the doctors were stumped also.

The "bad" news is that Quinn continues to be a very sleepy guy and isn't putting on weight. The thought is that trying to nipple/breast feed is just tiring him out even more. He'll take about 1/2 of his feed orally, then won't take anything the next feed or 2 in a row. He's still under his birth weight considerably. He is on fortified breast milk (which means a formula called Neosure is being added to my breast mik to make it more caloric) and the docs have now increased his feeds to 45mls (1.5 ounces) every 3 hours.

They put in an NG tube today :( (This is a nasal-gastric tube) that is taped to his cheek. Oh, boy is mom scared). Before this point they were putting in an OG (Oral Gastric) tube at every feed and would pull it out after the feed.

There are plusses and minuses to the NG tube being in place all the time.
the good- Quinn doesn't have to gag at every feed when the put the tube in (which is horrible)
the bad - the tube is in his esophagus which leaves the esophagus spinchter a bit open, which can lead to reflux (my opinion here) but I have a lot of experience on this subject!

We just want the little fella to start taking more of his bottles!

Until he does he won't be coming home to us, He'll be 2 weeks old this upcoming Monday.

Brian and I took a break from visiting him today. Kaitlyn misses us while we are gone every day. Brian is still having to drive me around (until Monday), nothing is getting done around the house (not that it matters, but...), and I'm pumping milk around the clock and need naps every day and it seems Quinn sleeps the whole time we are there anyway. It's back to that helpless feeling that there's nothing I can do at this point.

Thank you for all reaching out to me, I'm VERY VERY behind on answering emails/calls at this point - I hope you understand....

3PM update: as always nothing is ever status-quo in the NICU:

Quinn was put back on O2 (oxygen) at a very low amount, as he had some desats and is now going to be nippled only 1x per nurse shift (3x per day) as he continues to get too tuckered out.


Deeanna said...

That is such great news to hear about Quinn and his O2.

I can understand your concern about the NG tube. Emma had one for almost a month before she was taking bottles. The important thing here is that he gains weight. That's his job right now.

I am so so happy for you and congratulations! Please let me know if there is absolutely anything I can do.

Sarah said...

I understand your fear of the NG tube. Heck, Mila was supposed to have hers out nearly 7 months ago... and instead, we go for the gtube in just 10 days. Man, time flies.

And it will fly for Quinn... he'll perk up and he'll start bottling.

( On a seperate note, have they checked his heart? )

Sarah M. said...

I hope he starts eating better soon!! One other that they have switched to an NG instead of an OG every feed maybe he'll do better? since he won't have the OG gagging him.


Chantal said...

Just wanted to leave a little post about my 2.5lb niece to hopefully lift your spirits a bit. She was born at 34 weeks, due to IUGR. She acted very much like a 32 weeker when she was born. She had to have an IV, had very unstable blood sugars, and did not even begin to nipple feed until the week she came home. She had her NG tube for six weeks (up until the day before she came home.) A few days before her due date she finally "got" bottle feeding (at this point my sister had despaired ever breast feeding her.) She went from next to nothing by bottle to all bottle feeds. She never had reflux. She never had any signs of an increased gag reflex. My sister pumped for her like crazy, and a couple of times a day still tried her at the breast. Six weeks after coming home, she gave up the bottle for good and went to the breast at every feed.

There is hope for little Quinn.

I hope that I gave you some hope.

Before you know it, he'll be home, and eating like a little machine.

Thinking of you often in Ontario, Canada.

Cristi said...

It WILL get better. It just takes time unfortunately. Those crazy roller coasters are hard. One minute this great thing, the next, something really scary. Remember to breathe. LOL Prayers from Louisiana.

Anonymous said...

I just wanted to reach out and give you a little hope also. After trying to breastfeed twins (and ending up pumping for 7 months), I was determined to breastfeed my next baby. He was born at 35 weeks and came home 11% under his birthweight, but exclusively breastfeeding. 3 days later he had lost more weight and after a viist to the lactation center showed he just couldn't nurse strongly enough to get what he needed. I cried and cried as I brought the pump home. But I continued to nurse him before I bottle fed him expressed milk. He started to rapidly gain weight. Once he gained weight and hit 38 weeks gestational age, all of the sudden he woke up and "got it."

Maybe Quinn just needs to rest right now and fatten up so he has the strength to go at breastfeeding with gusto. I was told that babies just need to hit a certain gestational age before they really "get" breastfeeding. Quinn will get it, just let him get bigger and a little more mature and I bet he will be a champion nurser!

Anonymous said...

I am the sam anon commenter. I just wanted to add that I initally pumped like crazy while I had the pump to get my supply up, but I returned it after 1 month and now I very rarely pump. You will love not pumping!!!!

Kristina said...

Still praying for you guys. Yeah, none of the tubes are great. I think if left in place for very long they lead to gagging problems once removed. But what is the alternative? This is probably a very silly thing to say to an experienced NICU mom, but be sure they try a preemie nipple with Quinn. It can make a HUGE difference in how tired the baby gets!

Julie DeRuvo said...

Hi Liz & Brian,

We have been out of town on vacation and just got back so I hopped on your blog for an update. Surprised that you had little Quinn, but so happy that overall he is healthy.

Liz, as I read your delivery/birthday story I was flooded with memories of being in contact with your brother through your last hospital stay. My heart was aching for you. You guys made it through though... you are one of the strongest most loving moms I know.

This time is SOO much different, you must remember that. Quinn is going to be just fine... you have given 210% of yourself and sacrificed SO much to get him to a "safe" point -- you did it, he is ok & will be from now on. The hard part is over - try to remind yourself of that...

Hang in there - sending you a HUGE hug. Let me know what I can do to help... dinner(s) again, driving you? Let me know.

Love you & congrats,

Laura said...

oh the nicu two step! it is frustrating of course.
hang in there.

Anonymous said...

Hi Liz.

What about the old tube on the nipple trick? This depends on how much milk you have. If your letdown is really good and he chokes on the nipple you can't do it. But if he is not sucking a lot of milk when he nurses this works very well. Ask your nurses. The nurses at the hospital can give you a syringe with no needle, that you fill with formula. You put a thin tube at the end. When Quinn latches, you sneak the tube inside the side of his mouth. This way when he sucks he takes in both your milk and some formula. The nice thing is that you can apply a tiny amount of pressure on the syringe plunger so that sucking becomes very easy for him. This way he can get a lot of calories and you can do some nursing at the same time. Have they checked his jaundice level? That could be simply the reason for the lethargy. For babies that are almost full term the solution is to wake them to eat every three hours, whether they seem hungry or not, never letting them go longer than that without food. And phototherapy, even though I don't know how that applies to 34-weekers. Best wishes!! Anna

MamáChanga said...

Just wanted you all to know you are still in our thoughts & prayers.

Hugs & Blessings!