Wednesday, January 20, 2010


Dearest Lily,

Three steps forward, two steps back. That's a good way to describe our experience here at Doernbecher's Children's Hospital at the NICU.

The first day it looked like you might possibly be going home in a day or two. The next evening we were told probably more like 4 or 5 days. Then back to a day or two, depending on how you ate. You ate so good yesterday that we thought today we might be discharged. Then Dr. Gilhooly came to talk to us this morning. He said you are eating well, but just not enough. He talked to us about putting a feeding tube in, and how we could even go home with it in. He said this would speed up the whole process, because it would allow you to get the calories you needed without having you burn them up by bottle feeding all the time. It is a lot of work to get you to eat, we have to try all kinds of little tricks. You start off great, but you fall asleep half way through because you are working so hard to eat. Then we have to basically force feed you the rest of the bottle. We are suspending nursing for now- maybe trying once a day because the milk does not come out fast enough, and you have to work too hard to get it. Part of this is muscle need more of it to make your jaw and tongue and sucking action work well.

Sooo, the feeding tube would help to bypass all that work, and just give you the food you need...and maybe within a few days you will be strong enough to feed on your own.

The doctor told us the nurse would show us how to put the feeding tube in- it gets threaded thru your nose, down your esophagus, and into your belly. It is very, very tiny, but babies usually don't like having them put in. However, if we are going to take you home with one in, we need to know how to re-insert it, should it come out. Which would probably be caused by you yanking it out. We will still put my pumped milk into the tube, so I am still working round the clock to keep my milk supply up, and store milk for you.

After the doctor left this morning, Pastor Mammen and Susan surprised us with a visit. They thought you were so adorable, and they each took turns holding you. They really encouraged us that so many people are praying for you and love you, and at the end of their visit we all prayed for you together.

While they were visiting with us, a woman from The March of Dimes stopped by to invite me to-- of all things- a time of scrapbooking!!! It is a once a week group that meets in the waiting room/lounge, and the woman provides all the supplies...even an 8x8 album to work on for your baby! I told her I would LOVE to join them- they meet from 1 to 3 in the afternoon, and on Friday nights they have dinner and scrapbooking as well. It is a service provided for all the families in the NICU to help parents, etc. get a break and feel somewhat normal for a little bit of time. It is also a nice way for parents to meet other parents who are all going through their own set of circumstances. The woman, named Jennifer, explained that she also has family day passes to OMSI (Oregon Museum of Science and Industry) if we were interested. How sweet is that?!

Jennifer asked me about you, Lily, and asked if you had any siblings...I said yes, lots!! So she brought in t-shirts for all your brothers and sister (except the oldest three) that say Big Brother or Big Sister on well as three duffel bags filled with goodies for the kids. They had books, coloring books, crayons, a deck of cards, fun things like that in each duffel bag. I told her I would be there to scrap at one o'clock!

Yesterday a young girl stopped by our little "pod" in the NICU to take your picture. She does it for free, as a service to OHSU. She took the beautiful picture that is now the header for your blog, and also another sweet one of you and me and Jason. So, I brought the photo of you to the scrapbooking session, and made a great layout using all of the supplies they provided. It was SO relaxing- just yesterday I was thinking to myself- I wonder when all of this will calm down, and when I will ever be able to find time to scrapbook again- and here I am scrapping away for an hour! Jennifer has so much baby girl stuff-- pink papers, and ribbon, and stickers specifically themed for preemies, and NICU stays. I made one 12x12 page, and several 8x8 pages for the mini album I had been working on for you already. It was just one hour, but it felt like such a break from all the strangeness and stress I have been feeling.

I left the scrapbooking meeting to go back to the NICU for your feeding tube to be put in. The nurse wanted one of us to put the tube in, so that we know how to do it when we get home (if it comes out accidently.) Daddy decided to be the brave one...the nurse (not my favorite nurse in the world, but that is for another post!) instructed Daddy on how to thread the plastic tube through your nose and down your esophagus and into your tummy. First we measured how long it is from the tip of your nose to your ear, then to the chest bone, then two fingers under your ribs, which is where your tummy lies. We did it with the tube, and triple checked to make sure the numbers matched. It was 20 cm. total, so we marked that off on the tube ...that is so we would know when to stop threading it down. Doesn't this sound like fun?? Not.
We also learned how to know whether the tube is actually in your tummy or not- which is something we need to check before each feeding. If the tube becomes dislodged, by sneaking out and coiling up somewhere other than the stomach...then we would be feeding milk into other parts of your body. So to check we can do two things.
First, we attach a syringe to the end of the tube on the outside. We gently pull up on the syringe, to see if any liquid comes up from your tummy , such as leftover milk you have not yet digested. If any comes up, that means the tube is still in your stomach. Sometimes air comes out too- which is good, because we don't want a lot of air in your tummy. It can make you feel full, and then you won't eat. If there is air in the syringe, we unhook it and release the air. Whatever liquid comes up, we GENTLY push back into your tummy.
The second way we see if the tube is still in the tummy is tricky. We put a stethoscope in our ears, and pull 5 cc's of air into the syringe. We attach the syringe to the tube and GENTLY force the air into your tummy, as we listen to your tummy with the stethoscope. We should hear a small "puff" of the air going back into your tummy...this again means the tube is indeed inside the tummy where it supposed to be.
If all is good, we can proceed with the feeding, or "gavauging." This is done by placing whatever breast milk you did not finish in your bottle, into a syringe that is hooked up to your tube. We hang the milk in the open syringe from a rubber band attached to a safety pin above you somewhere, as we prop you up a little bit on our lap. For instance, I was sitting in a rocking chair, with you on my lap, and the milk in the syringe was hooked to the top of the cushion of the chair at my shoulder. This is so that gravity will force the liquid to drop thru the tube into your tummy. We do not want to push it thru with the syringe, as it will go too fast and make you vomit! Sometimes the milk might come down too fast- we watch you for signs of this to make sure it won't gag you. If you start to gag, we pinch the tube to stop the flow of milk, and give you a chance to settle down...and perhaps adjust the height of the syringe to slow down the flow of milk.
Sound complicated?? I thought so too :( I'm sure after we do it a few times we will feel like pro's.
But for now....Daddy could not get the tube in. If he meets resistance while threading the tube down your nose, he is supposed to stop, gently pull some of the tube back, and start threading again. The problem is he KEPT meeting resistance, and you were screaming and turning so red you were almost blue. Mommy was almost in tears, and feeling ill..Daddy tried and tried, and finally the nurse took over. She tried each nostril to no avail...appparently you have very small "nairs"- the hole at the top of your nostril- leading down into the esophagus. Sooo, the nurse decided you had enough and said we will try later.
We were very discouraged, because she said if another nurse could not get the tube down your nose, we would have to do tube feeding through your mouth...which would mean we couldn't take you home. After all that work, you were VERY hungry-- and when I fed you the bottle you took 45 mls!!! A first for you! You usually take around 30 ml. which is not enough to get you to gain. 45 is the optimum, and you took it all!!
Daddy and I left for dinner, and PRAYED...and when we came back you had your feeding tube in! Another nurse was able to get it down, thank God!! We learned again the steps of feeding you, and gave you your 9 o'clock feeding...kissed you goodbye...and came back to our home away from home:)
We have high hopes of bringing you home tomorrow...Daddy just has to be able to do that tube insertion himself we are praying earnestly that he is able to do it. They can't send us home without one of us being able to do it. The tube can stay in for 30 days, but in case it falls out, or you pull it out, we must know how to re-insert it. Hopefully by the end of a week we won't even need the feeding tube any longer!
So much to learn, little Lily- we are getting such an education in one week. So much more to write, but I have to get my I can be the best Mama possible for you, and be ready to handle all these new challenges.
I love you, baby girl- you have made my life SOOO happy these past few days. In spite of all the emotions, you have made me the happiest Mommy in the world, just by being YOU. You are the bright spot in this hard week of being away from home, and riding this roller coaster called the NICU.
And I thought when you were born I would get OFF the roller coaster;)
All my love forever,
Your Mama oxoxox


fckopp said...

Oh my sweet Lily, I can't wait to come back to OR and hold you and Mommy.

mary said...

Patti you little sweetheart congratulations to you Sam and ALLLLL the kids. Lily is beautiful.
Pat and I are soooo happy for you& Sam, your friend
that STILL prays for you Mary B.

mawell said...

Sweet Lily,
I hope you will know, if you don't already what a wonderful family you have been born into. Even though I rarely see them anymore your parents are two of my favorite people. What a privileged little girl you are to have them for parents. Also your precious big brothers & sisters. With all that love surrounding you, you will never do without. I have had the privilege to meet 7 of your siblings & I pray one day I will get to meet you, Jackson & Abigail. I pray for you all. Give your mom & dad a hug for me.
Love you already...Kathy Kidwell