Learning to eat

Riley's feeding has never been normal.  When she was first born she was on IVs and getting all her nutrition that way.  This was because she has surgery that say after she was born to close her spine.  Afterwards when we attempted to feed her by mouth her oxygen level would drop.  She could not figure out the the whole suck/swallow/breath combo.  I was only able to tried to breast feed her twice, but I did pump and give her breast milk solely until 4 and 1/2 months then I had to supplement because I could not keep up with her.

The NICU put in a feeding tube through her mouth.  Normally, they would do this through her nose, but she has small nasal passages and a deviated septum.  She would pull the tube out constantly.  She developed vomiting after her feeds.  They tired lots of different things to stop it, reflux medications, motility medications, moving the tube so that it was in her upper intestines instead of her stomach.  None of them worked then they started her on continuous feeds.  Where she was slowly getting food in through her tube all day and night.  They did a reflux test and found she has serve reflux..which we could have told them.  They continued to try different medications.

At one point they thought that maybe she has a milk allergy and out her on soy milk.  It didn't help so she went back to breast milk.  Through all of this her weight gain was slow as to be expected.

As the reflux got worse the doctors suggest something call a nissen fundoplication.  Basically the muscles at the top of Ri's stomach were not doing their job keeping her food in her stomach so she could digested it.  So what the nissen does is pulls her stomach up and wraps it around the bottom of her esophagus.  Thus created the sphincter need to keep her food in her stomach.  The standard practice at the hospital where Riley was was to place a G-tube when doing the nissen.  This a feeding tube that is placed in her belly allowing us to feed directing in her stomach.

Her reflux was thought to be playing a big part in her continued breathing issues where her oxygen levels were dropping.  The thought was that if we could avoid the reflux with the nissen and the oxygen drops during feeding by placing the G-tube that she would be good to go home.  We decided to go through with the procedure.  After she healed it worked to stop the reflux but did not help with the oxygen levels.  She ended needing a trach placed in order to get her oxygen to stay up.  I will do a separate post about our decision for the trach, what it is like to have a child with a trach, and more. 

So back to her feeding.  Our next goal was to get her off the continuous feeds to what is called a bolus feed.  This where she would get her feed all of one time.  It was a bit of a slow process.  We went from continuous to 4 hours on feeding and 4 hours off, then to feeding over 2 hours, then to feeding over an hour, and finally to over 1/2 hour every 4 hours.  Riley started to gain weight consistently after that.

After we had her home for awhile we wanted to try to start her on some oral feeds, but we had get clearance from one of her doctors.  First we tried her on milk on a spoon and that did not go well.  When we tried some stage 1 foods she did better.  The doctor had only give her one baby spoon full of food, in small bites.  Then once a week we increased it by one baby spoon fully.  It several months to get her eating a enough food that they could do a swallow test on her.  In November 2010 we went in for the swallow test, what they do in put barium in her food and they feed her and as she is eating they are x-raying her to watch how she was swallowing to make sure she was not aspirating on her food.  We were told that she was doing wonderfully and was not aspirating and was good to start oral feeds full time. We were so excited because it meant that she could have icing for her birthday.

You would never know now that she had some many issues with eating.  She does not turn her nose up at any baby food that we give.  If we don't feed her fast enough she yells at you.  We are now working on getting her to take all of her fees oral and not using the G-tube at all.  She is learning to use  a sippy cup and is doing wonderful.  Though if she sees the food before she finishes the cup you have a hard time getting her to take it again until the food is gone. 

Recently we have started her on solid foods.  She is getting good at picking up the Gerber puffs with her whole hand.  She has had some scrabbled eggs.  And I have a few other foods that I am going to try her on in the next couple of weeks (raspberries, peas, avocado).  She had some cheese today and seems to like it.  We might give a grilled cheese sandwich soon too. 

If any one has ideas for fingers food or handmade baby food let me know.  I just started today making some of her food and I am looking for ideas.

Busy week

So I have not posted anything for more than 2 weeks.  It has been a bit of a crazy 2 weeks.

Last week I was packing all week for Riley's very first trip.  We went to NC to visiting family because my Grandmother turned 90.  We had a nice trip and got spend lots of time with family and even got to see some friends too.

We did have several bumps in the trip.  The first was when we first got there.  Our medical equipment company (APRIA) did not send all of the things we needed.  More importantly they did not send both machines we needed.  So at midnight I got to call and yell at someone.  APRIA is a terrible company we have more problems with them than good experiences.  So they came a delivered a piece that could work but not the right machine.  I made it work though.  It was a really good thing that I brought alot of what they were suppose to bring.  They sent us adult trach mask for an 18 month old.  How much sense does that make...NONE.  They sent a humidification container that went with a nasal cannula not a trach, I brought the right one thank goodness.  I was ready to kill someone.  But I worked with what I had and it worked out in the end.

The scariest thing happened on Saturday.  We were at my cousin's pool, which on a side note was the first time Riley got in a pool and she loved it.  We had been in the water for about 20 minutes on so and I was sitting on the steps in the water with Riley in my lap.  She all of sudden went completely stiff in my arms and would not response when I called her name.  Then she snapped at out it and started screaming.  I rushed out of the pool and over to the shade where we were sitting and it took us 15 minutes to get her calmed down.  I thought immediately that she has a seizure.  Once we got her calmed down she was lethargic and slept for about 45 minutes.  She was not her normally self for the rest of the day.  She was crabby and sleepy and just off.  She is normally super happy all the time.  She had another episode later that night at my Grandmother's party.

We ended calling her doctor her in MD, they told us that we didn't need to go to the ER but she needed to be seen when we got back.  They also told us that if she had another seizure, came out of it, and immediately had another one that we needed to go the nearest ER.  She was fine all day Sunday.  On Monday I called and got her an appointment with a neurologist who we went and saw on Wednesday.  We are now scheduled for a EEG on 7/12 and depending on what they find Riley might be put on anti-seizure medication.

She has not had another episode since last Sunday so hopefully it may have been a one time thing.  But only time will tell.

Comparisons

As may times as I tell myself that I can't compate Riley to other kids, I do still fidn myself doing it.  This past weekend we visited with teo sets of our friends both we young kids.  One has a 9 monhts old who is crwaling all over the place and pulling himself up to stnading.  He is also walking using the table or a walking/pushing toy.  The other one is 8 months old but he was born 11 weeks early, so his corrected age is like 5 months.  He was sitting better then Ri and looked like he would start crawling any day now.

While I super happy for both of my friends it makes me a bit sad that Ri is almost 18 monhts and is not doing some of those things.

She is reaching her own milestones.  We have starting introducing Gerber puffs to her and plan in the next couple of weeks to start her on some solid foods.  I hvae  ablog about her feeding started so I will talk about that is a separate blog.  But in the last couple of days she has starting picking up the puffs with her whole hand and putting them in her mouth.  She has also learned to to turn off the light in her bedroom and thinks it is the funniest things.

I know that Riley is doing great.  But every parent wants their child to do the best they can.  My head knows that Ri will reach her goals when she is ready, but it still hurts my heart a bit to see what other kids her age can do and when a child younger than her can do things that she can't.  When she does do something new it makes my heart saor with joy.  I am waiting for the next soaring moment.

D-Day

We have recieved word that July 6th will be decannualization day for Riley.  She will be admitted into the hospital overnight.  We go Thursday to meet with her ENT and get all the details about how it will go.  But we are all very excited and can't wait to see Riley with our her trach.

Sleep Study

I have been wanting to put up two post this week and just have not had the time.  So I am going to combine them into one here.

In March of 2010 Riley had a trach placed due to severe sleep apnea.  It was the only way we were able to get her to the point that we were able to get her home.  Because she had the trach meant that we had to have lots of medical equipment and a nurse at night.  We had to make sure that we had her suction machine, HMEs, suction catheters, oxygen available, saline, extra trachs, and several other things before we even left the house. Plus of course all her feeding supplies and normally baby stuff.  Needless to say it was not easy to go anywhere.  We were not able to go stay any were over night.  So we have been anxious to it is out. 

Over the last year she have slowly worked Riley up to wearing a passy muir valve from 1 minute all the way to all day.  A passy muir valve (speaking valve) is a one way valve that let Riley breath in through her trach but them she had to breath out through her nose and mouth.  This allowed the her to talk since the air would go through her vocal cord.  Once she was able to wear the passy muir valve all day we moved on a cap.  Which is actually like it sounds it is a solid cap that goes on the end of the trach.  When she is wearing it she is not using the trach at all.  She is breathing like you or me.  We worked slowly to get her to wear it all day.  Once she was able to do that it was time to repeat her sleep study and see if the trach could come out.

Last Friday (5/6) Riley went in for her capped sleep study.  This was a exhausting experience for both her and I.  I had to stay up all night due to need to suction her throughout the night.  Riley had to have tons of probes on her head and face, a nasal cannula in, pulse ox on, heart monitor on and two belts around her chest and abdomen.  How they actually expect anyone to sleep well with all of that on is beyond me.  So we get there at 8:30, Riley is normally asleep around 8-8:30.  By the time they get you check in and in the back it is 9, then they spend an hour putting all of this junk all over her.  Riley was not a happy camper, she was tired and screaming (which then meant that I need to suction her about ever 5 minutes).  By the time the tech is done hooking Ri up it in now 10.  Poor girl was DONE! So she is finally able to go to sleep but doesn't go to sleep until almost 11.  At about 12-12:30 the tech comes back in and puts Riley on some oxygen because her oxygen levels at dropping.  She sleep for awhile then at 1 she is up and doesn't go back to sleep until 3:30.  I was begging her at one point to go back to sleep, at least at this time she was not crying. So she finally goes back to sleep and then it is 5:30 and time for us to wake her up and leave.  Needless to say it was a long night. 

I was afraid that they were not going to have enough information to make a decision since she was up for most of the night.  The good news was that they didn't make me take the cap off all night.  I took that as a good sign.

We leave and go to my folks house who live 20 minutes from where we had to go for the test since my husband had to work the next day and I really really needed to sleep.  I go sleep the morning away and Riley hangs out with MomMom and Pop.

When we left they told us that it might be up to 14 days to get the results.  On Tuesday I get a call from Riley's pulmonologist that the results came in.  And Riley did great.  She was having drops in her oxygen level, but that can be treated with just having her on oxygen at night.  She goes on to say that she does not see any reason why Ri's trach can't come out.  My baby girl is going to be TRACH FREE!!!!!!!!!!!!  We are beyond the moon.  I am working with Riley's ENT to get in scheduled.  We do not have a date yet, but we are hoping that it will be soon.

In order to get the trach out Ri will need to be admitted to the hospital overnight for observation.  She will still also need oxygen, but it the long run it is going to be much easier travelling and going out with her.  We had planned to go to the beach this summer but were worried how it was going to work with trach, but now it will not be an issues.  My BIL just bought a house with a pool so Riley will be able to go swimming this summer.  This has opened so many more doors for us and we can't wait to walk through them.

I will keep you updated to when we are going.

Small joys

I thought I would share some of my small joys in life.

1. 80 degree weather in the spring
2. Driving with the windows and sunroof open
3. Dancing like a fool in my car
4. Seeing someone else dancing like a fool in their car
5. The 1st snowball of the season (This has not happened yet but I am looking forward to it)
6. Ri squeeling with delight when I walk in the door after a long day at work
7. Watching Ri play with our 85lb Rotti
8. Talking to a friend that I have not talk to in a really long time
9. Watching Ri laughing until she turns red at bubbles
10. Ice Cream

Sign Language class 2

So I had my second sign language class on Tuesday.  I am pretty impressed with myself with how much I remembered from the last class.  I am kinda nervous because at the last class I have to sing a song in ASL.  I have chosen Rascall Flatts "You."  I have taught myself the chorus and I am having a hard time with the third line.  I want to do well with this.