Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, October 15, 2011

A Mirage in the Desert...

Today Meagan is 3 weeks old.  I cannot believe she is creeping up on a month already.  Time has flown by and stood still all at the same time. The last few days in particular have been extremely busy for Miss Meagan.  We have had several changes and a lot of good news. I'm always afraid to talk about the good news because then it seems a setback immediately follows.  But I have to be extremely proud of Meagan and every little tiny thing she does... so I'm going to cautiously say we have had a 'good' last few days.  Ever since her shunt re-program, she has been like a new baby... and like her old 'self' again.  She has more alert times, she seems to "communicate" with us more with her eyes, and when she sleeps she seems more restful.  Her head itself seems so much "healthier" and the fluid pocket had almost completely disappeared. 

Tuesday night was perhaps the best night since Meagan's birth.  Every feeding, I had been at least working with Meagan to stimulate her mouth and let her try to suck on my finger.  Suddenly, at her 6pm feeding that night, she started to suck on my finger.  I manipulated it a bit and she still seemed interested. This was HUGE.  She had literally NO suck for almost the whole two weeks before!  I excitedly called over to Brian who was sitting next to me and asked him to get just the nipple from the bottle.  I put my finger in the bottle nipple and continued to work with her sucking ... when she had a few good sucks, we asked the nurse to put milk in the bottle.  And Meagan took down 10ccs of milk! I was ELATED.  This was the first time she'd shown not only an interest, but normal physical signs of newborn eating.  We worked with the speech therapist a little bit because I knew Meagan did NOT like the hospital bottles. They are so skinny, and it's not natural for a baby to suck on a small nipple.  After experimenting with a few different bottles, we found that a firmer nipple works best for her - but one that is wide like nursing. I asked a close friend for any suggestions on a wide firm bottle.. I had Playtex and Avent ones from the other girls, but they didn't seem right for Meagan.  My friend suggested trying a newer brand called "Tommy Tippies."  She said she'd heard of them being really good for babies with feeding or oral issues.  I went ahead and picked one up from the store - at this point, with her finally showing interest, we were going to try anything! And sure enough - she loves this bottle!

The next two days, Meagan continued to show great effort at feeding.  She sucked well and took about 20ccs of milk when we attempted with the new bottle! (An ounce is 30ccs).  The doctor said I could put her to breast as many times as I wanted, but we could only bottle feed every other feeding.  Meagan just canNOT latch on to me - she needs the firmness of the bottle because she has very poor muscle tone in her jaw and mouth, and now that she's taken some milk, I don't want to change things up for her. And now she is finally showing patterned success with this bottle - we are progressing and I want it to keep going. However, I was rather perturbed the doctor told me only every other feeding. Why? Their answer: "So she doesn't get stressed out."  Ok, I get it... but... if anyone wants her to stay calm so we can get her home, it's ME! I would never do anything to "stress out" Meagan with feeding, especially since we are finally making strides with her sucking. But if the poor kid is waking up, smacking her lips, and trying to suck on my finger at each feeding, why shouldn't I try a bottle with her EVERY time? I brought up this point with the doctor today - I bluntly told her that I personally felt if Meagan was showing interest at a feed, I should be offering her a bottle rather than just letting her tube feed.  I told her I am the one at my daughter's bedside 8+ hours a day - and I know her better than anyone.  I also have 4 other children, and I know how to follow a baby's cues whether they are tired, irritated, or willing to try something new.  The doctor gave in to what I wanted and so tomorrow, orders will be written that bottles are to be attempted at every feeding per Meagan's cues.  I was very happy to win that "battle" because I personally think, based on Meagan's behavior, she is absolutely ready to try bottles at every feeding.  It is the only way she will continue to associate her mouth with eating and build her strength to eventually eat the full amount of milk she needs. 

I talked to the doctor about the Klonapin as well.  I reached the point of being very uncomfortable with Meagan on this medication.  She had been absolutely fine for almost 2 weeks without it... and I wasn't sure how much of her lethargy and lack of feeding was due to the side effects of the medicine.  It is a fairly strong drug, and although she was on an extremely low dose, in hindsight, her one day of aggitation (which was why she was put on the Klonapin), was almost 99% due to her shunt back up.  I asked the doctor if we could start weaning her off of it and just see how she did.  If she reached a point of agitation again, then we would have found a comfortable level of the medication.. but if she did fine, I wanted her completely off.  As long as she was happy, had content behavior, and was showing signs of eating, there was no need, in my mind, to keep medicating her so heavily.  The doctor agreed with me, and reduced her dose by 25% that day.  She is due to reduce it by another 25% tomorrow if all still looks good with Meagan's mood and eating. 

Sometimes I wonder if it is doing any good to sit in the NICU for 8 hours a day - as we've done for the majority of the last 3 weeks.  We obviously lose that time with our 4 other children, and it is daunting to sit there through every second of ups and downs with Meagan throughout the day.  However, I think that it is extremely necessary.  Every milestone she has made is because we have been there pushing her.  Every time she has been alert, she has had someone to talk to her because we are there.  Every time she has a basic need, and the nurses are too busy with another baby, she gets her diaper changed, or gets her paci because we are there with her.  This is imperative to her recovery.  There comes a point when your baby is "ok" and doesn't need "emergency care" anymore.. but they aren't quite ready to go home.  It is very easy to get lost in the shuffle during this time.  This is where it pays off to be pushy. 

Now to clarify, I have had no issues with the nurses and doctors at Children's.  They are all wonderful, have great bedside manner, and listen to all questions we have.  However, in this "limbo" period, it is easy to get overlooked. It is easy for things not to happen as aggresively as they could (ie: attempting the bottle at every feeding if Meagan is interested).  Because of this, over the last few days, we have to be very staunch parents.  We have to ask questions, push back on things we think we know better, and demand things we do know better.  So far, this has paid off as far as making strides in the doctors' orders, or in things we want to try with Meagan.  The medical staff has provided (and will continue to provide) excellent medical care, but ultimately Brian and I are Meagan's parents... and we have to do what we feel is right for her.

Today, we had a conversation with the doctor that involved a word we have not heard up until this point - HOME.  The doctor said now with Meagan consistently taking 20 ccs, we'll go ahead and make a plan to go home.  She has to take 60ccs per feeding for her to be released without a feeding tube.  Now, do I think she will suddenly start to take such a large volume of milk? I doubt it... I know she can do it! But, I doubt that it will happen in the next few days.  So we are going to be educated on how to handle an NG (through the nose) feeding tube and work out over the next 4-5 days how much Meagan will eat so we know how much will need to be supplemented through the tube.  We will have to do her carseat test... someone will also come bedside to show us how to prop her head up safely in her carseat.  Because she will probably come home on the feeding tube, she will also have to have an apnea monitor.  We will also have to keep watching that fluid pocket, and shunt site... but that's something we'll have to do her whole life anyway. 

While it was exciting to make a tenative plan for Meagan's homecoming, it was also a little unnerving.  I'm conditioned now to moving forward, and then getting setback.  It makes me highly cautious of our "take home" goal.  I have this fear that it will almost arrive, and then something will happen where we are stuck in the NICU even longer.  I have to keep remembering to be proud of every milestone Meagan does accomplish on her own.  And pray, pray, pray that her homecoming is in fact going to happen next week.

Looking back on our journey so far, it seems to me that having a child with Hydrocephalus is like walking through a desert.  Sometimes, we get lucky, we find water, we find life and normalcy.. but all too often, the Hydro monster throws us a mirage in the desert.  I pray that next week Meagan is truly home with us... and we are hydrated with our love for her and the comfort of having her at home with her family.  I pray that the homecoming talk does not end up being that mirage in the desert, propelling us backwards yet again.

 Daddy's Girl

So alert again!

Finally meeting her Godmother, Aunt Christine (Bean)!

Relaxing with Uncle Nick

Checking out the picture of her sisters we hung in her crib.

The nurse put a toy in Meagan's crib to try and tempt her to turn her head the other way. 

Yummmy.... fingers!

Sound asleep - LOVES her belly!

1 comment:

  1. I have been on vacation and missed hearing how your sweet angel is doing! It sounds like she is really learning to do lots of new things! Still praying in Georgia! HUGS and continued prayers!