Yassy’s note; Liam in NICU; Day 8- Day 14
In the previous entry titled “Yassy’s note: Liam in NICU;day 1- day 7“, I wrote Liam came to our family about 3 weeks early and he has spent next 3 weeks in NICU. The entry was about his growth day 1 through day 7.
At the NICU, Liam was very sleepy boy, and he had poor feeding.
Since he did not suck well to nurse himself, plus he looked sleepy all the time, he usually did not take milk much on his own.
Usually he took about 10ml or so and done with it to take on his own,and rest was fed via feed tube.
Originally, his stay at the NICU was estimated to about 1 week when he was born but since he had poor feeding, the doctor at NICU told us that the goal he needs to achieve to come home with us was that he could take certain amount of milk on his own by himself for 2 days back to back.
Feeding tube and poor feeing …
2nd week, the doctor in NICU showed up to talk to me about his (Liam’s) poor feeding.
He got this *food in take chart* thing and he explained that he would wish to see the gradual improvement in the amount of food Liam takes via mouth.
However, the last 2 days, it seemed a little down and then up and not as much as he wish to see.
Therefore, he was talking about he would wait and see over the 2 weeks (closer to original due date) and see if his intake would improve.
If it did not improve, then, we should think about long term feed tube through the stomach..then at the same time, teach him to eat food via mouth,and once he learns, then takes the tubes out.
Then, he would consider having the DC hospital in the loop and would like to look genetic side, and neurological side..for the cause of poor feeding.
The tube in the stomach sounded a little invasive stuff to do, but the doctor said that if we keep him with feed tube through the nose, generally, babies do not like to have feed tube inserted through nose and they could associate the uncomfortable feeling with whatever coming into the mouth and it could make aversion to eat food via mouth later on..
I thought about it.. but to me, if he could be awake and alert more, he could eat the food via mouth more.With a lot of practice on my side and lot of learning on his side for the breast feeding technique..
In fact, when I tried to breastfeeding for the afternoon feeding time, when I used the little trick I learned from the lactation nurse;a little chin support, and he actually sucked my breast for a bit.
It was probably 3-5 minutes long and it was not long time as much as other babies would have been working on, but for me and Liam, it was a big improvement and I was happy about it.
After that 3-5 minutes feeding time, he fell asleep and, he had to be feed tube again but at least, it was the biggest improvement we could make so far..
Also, on that day, his both eyes were slightly opened when feeding.
Both eyes were opened when feeding….
I remember I was hoping that he gets more alert as time goes on, and being awake longer and that feeding becomes natural to both of us.
From NICU time, we were taking one day at a time, and appreciated his a little progress. It still is the same. One little thing he does as new skill from pivoting, crawling,sitting without support, pulling to stand etc… makes me smile.
When 2nd week was about to end, when we went to go see Liam at NICU,the nurse put 55ml milk, and he took 23ml via mouth.
It is not great number but, he took more than we have seen and I was happy about it.
A day or so ago, the guy NICU doctor gave us a chart telling us how many % Liam took his milk via mouth over the week and it has been around 25%.
But, that day’s intake was 42%:-)
As the day passes by, the total ml he has to take was up and up so, even if he was drinking more, sometimes, % of oral intake could drop because of that.
After he took 23% of what he had to drink per sitting, he was out soon, and the rest had to be tube fed but, I was glad to see the little improvement.
Next day, new NICU doctor stopped by. She said she wanted to get to know him for the next few days and see how he does with bottle/breast feeding. Her opinion was that, it does not need to hurry to decide the feeding tube in the stomach. Therefore, we were wait and see situation then.
If we agreed to the stomach tube thing or if he greatly improve in his intake of food by mouth, guy doctor at NICU we spoke to the other day would have thought that Liam could come home in about 2 weeks.
Since I wanted to keep my parents in Japan in the loop in care decision of Liam, we did skype with them (family meeting with them,us, and my mother in law)..
My mother mentioned that my sister’s youngest son had the same issue with breast feeding (was born in 37 or 38 weeks) and he was always sleepy at the hospital but she convinced doctor to discharge them in the condition they can ask her and her son to come whenever necessary because they live only 5 -10 minutes walk away from hospital and they can come right away.
With Liam’s case, if he were consistently 25% food intake each feeding time, doctor would probably not going to discharge him without back up method to give him necessary amount of food per feeding.
My mother also said that feeding schedule for Liam could be off with his own sleeping cycles.
One of the advantages to have him at home will be able to work with him for the feeding issue when he is up, not on the clock.I can see what she meant by that.
At NICU,one nurse care for 5 babies or something so, it is not one vs one care. It would definitely be a good advantage of having him come home sooner.
I asked the nurse how much Liam weigh at the 2nd week at NICU.He was 5 lb 7 oz:) One ounce over the birth weight. I was glad to hear that.
The last day in his 2nd week at NICU, he took 25ml out of 50 ml (50% of total intake he needed). It is the largest amount he has ever took via mouth.
I was so happy to see that.Also, he gained weight and that day, he weighed 5 lb 8 oz:)Gained 1 oz a day.
With the bottles, I tried my custom made trick to Liam; rotating or wiggle bottle when he was about to stop sucking and it seemed work.
The same nurse to one day before that last day in his 2nd week at NICU said she tried bottle fed him in the morning and he took only 10ml. However, afternoon feeding was much better.
I was then started thinking that really, his sleeping cycle and feeding schedule was somewhat off..
Breast pump machine and insurance company…
Did you know that insurance company will buy you a breast pump if you ask your OBGYN for prescription for it and submit it to the insurance company?
Our insurance company had that program and asked our OBGYN to write prescription and got us our own breast pump for free,which I had to pick from 4 styles/brands choices.
At the hospital, I was using medela breast pump symphony and I really liked it.Therefore, we got us medela breast pump in style (one of the choices from the insurance company).
I thought I would like it because it is made by the same company with the one from hospital but I was wrong.
It seemed to give me about 30% less milk amount than the one pumped by medela symphony and it has loud noise with rough suction (it hurts) and I tried weakening suction a bit but if I do so, much less milk in the bottles…even if tried longer time.
I looked up the price for medela breast pump symphony thinking I maybe should invest some for the good pump since pumping the milk would continue longer.
I was surprised how expensive it is;over $2,000.
I saw that babies r us does have renting program, and I was thinking about looking into it.
In the end, I have rented medela breast pump symphony from lactation nurse for a few months for free, and then, after that, we rented it from pharmacy with monthly charge. It was about $75 every month.
My thinking was that if Liam needs bottles all the time,then, I need to pump frequently and if I use long term, I wanted the pump to work better than the one we got through the insurance company even for free.
For us, 2nd week at NICU was more of learning for the breast feeding technique and the worry about possible surgery to put the feeding tube in the stomach,although it ended up not needed. And, battle with Liam’s poor feeding.
Stay tuned.More Liam’s NICU story continues.
