<strong>December 27, 2009</strong>

The babies did a great job waking up and eating today.  Tayla took over half of all of her feedings today by mouth.  We are to a good start.  I’m hopeful in just a hand full of days we will see them eating all by mouth.  That is what I have seen of most of the premiees when they get it they get it and quick.

The family was finally dug out today and they will be coming to see me tomorrow!  It has been almost two weeks since I have gotten to see the kids.  I can’t wait.

<strong>December 26, 2009</strong>

We are just hanging out.  Nothing new to report.  I’m just waiting for them to wake up and eat which I am told is how it happens with premiees.  Ruben was 4lbs 10 1/2oz last night an ounce and a half away from birth weight!  Tayla is still 5lb 4oz we are assuming that it is because she was weighed on a different scale the night before.  That’s ok she still put on 3oz the night before!

<strong>December 25, 2009</strong>

Everyone has been wonderful with our family at home.  Thanks to some wonderful neighbors our children will get to enjoy Christmas.  Thank so much to Bob and Melody and to the Marsceau Family!

I don’t have much to report as far as the babies go.  Tayla is back to birth weight.  Ruben is still gaining slow and steady.  He gained another oz last night so he is up to 4lbs 7oz.  They took Tayla off the Billi lights today-all of them.  They are still continuing to take part of their feeds by mouth.  It seems like it is going to take forever before they are eating all by mouth and we are going home.  We all need to be back together again soon.  We have been here for 18 days already.

<strong>December 23, 2009</strong>

Looking at the picture of me with them I am trying to figure out where I put them.  Yes, I was big but, was I really big enough to fit them both in me?  Yes, I still look that tired.  I am averaging about 5-6 hours of sleep a night 45min-2hr at a time.  Part of the time I am sleeping in the NICU as it is so far from my room to the 3rd floor NICU that it is too hard for me to wake up and walk that far.  Surprisingly,  I am doing ok physically.

The storm has hit.  I keep hearing more and more snow fall totals that they are calling for us to get.  The last I heard was 14-20 inches!  Our family will not be together for Christmas.  This is very hard for me as I’m sure you all know I don’t leave my kids.

Ruben and Tayla continue to gain slow and stedy.  Ben is 4lbs 6oz and Tayla is 5lbs 1oz.  They both did great feeding by mouth today.  Ruben took over half of 3-4 of his feeding by breast and a couple of them he finished by finger feeding.  Tayla does great at the breast but she doesn’t seem to transfer any milk.  She took as much of her feeds by finger feeding and bottle as Ruben did.

I’m sure many of you are wondering about the whole PKU thing.  Ruben’s came back fine Tayla’s is slightly elevated.  The NICU docs are freaking out about it and I’m telling them it is no big deal (which the specialist who we have worked with in the past and came and consulted with me is on the same page as I am)  That doesn’t seem to matter the NICU docs think Tayla is going to die.  Unfortunately the specialist is out of town for the next week so it is making dealing with the NICU docs very challanging since they seem to think I’m just a dumb mother.  Yep, dumb mom who now has five children with the same thing.  With only 1in 16-20 thousand getting PKU and even less getting what my children have most doctors have never seen it or will never see it the whole time they are in practice.   There is so much misconception about the difference between PKU and what my children really have which is the varient form called Hyperphenyalanimina (sp?)  They do not get the high levels which are what cause the issues.  For the most part they just need to be monitored.  Breastfeeding is best as it has a much lower level of Phenyalanie (sp?)  This is the amino acid that builds up in the blood.

Tayla billierubin is still up in fact it is going up.  She is still within normal range we just need to make sure that we don’t pass that.  So she is back on a billi light along with the billi blanket.  Hopefully when they repeat her level on Christmas it will be way down and she can finally be off the lights.  We are assuming that her levels continue to be high because of her high hematicrat.  Basically she has more red blood cell to break down.

Keep us in your prayers.  Pray that they continue to take their feeds by mouth, that Tayla’s pku level stays low, and that Tayla’s billirubin goes down, and that we get home very, very soon!  Also continue to pray that I say healthy.

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<strong>December 22, 2009</strong>

Tayla and Ben are up in weight Tayla is 5lbs and Ben is 4lbs 5oz.  Tayla and Ben both took a full feeding by mouth today! Tayla took over half of the next two feedings by mouth.  We are syringe feeding and we did use a bottle with Tayla today.  They are still getting my milk.  We need to be home and it looks like the only way that will happen is if they get rid of the feeding tubes.  The whole family was hoping that we would at least be able to spend Christmas together at the hospital but with the blizzard of the decade looming it is not looking very promising.  What are the odds I would go into premature labor out of the blue in a snowstorm and then we would have the blizzrard of the decade for Christmas.  Really, I need to write a book our life never ceases to amaze me.

<strong>December 21, 2009</strong>

It looks like we will be here for Christmas.  The docs said no way to going home.  In fact they are saying another two weeks.  I still don’t feel like they are giving me a good reason.  From what I understand the babies issues are nothing a home health nurse can’t handle.

They are both doing so well.  I don’t know how we can justify keeping our family seperated, stressing me out, and the cost of being here.  I am feeling very discouraged today.  How do you deal with Christmas in a stituation like this with all our other children?  Shelby needs to leave soon then what?  When did family centered care get replaced by liability concerns?

<strong>December 20,2009</strong>

This was day 12 here.

Well, keep us in prayer.  Our primary doctor and the admiting NICU doc are meeting tomorrow to decide if we can go home early.  Even if they agree we still have the issue of getting home health care which sounds like it could be a little bit of a concern.

The babies are doing great.  They are both still gaining.  Tayla is up to almost 4lbs 15oz and Ruben is up to almost 4lbs 5oz.  They seem to take turns with everything-weight included.  She’ll gain an oz or two in a day when he’ll only gain a 1/3 of an oz and then the next day it will switch and he’ll be the big gainer and she’ll be the little gainer.

They are both nursing well today.  Ruben woke up for almost every feeding to nurse.  I’m not sure if they are getting much of anything as transfering the milk is usually an issue for premiees.  Although there were several times today that I know each one of them was swallowing milk.  They both finger fed today and took about 5cc well.  I am hoping that maybe they can get strong enough to take the rest of their feeds by syringe instead of a tube.  This hope will take a little time and if I’m lucky in the meantime they will just wake up and nurse which is normal for a premiee to just get it one day.

Being here is getting harder and harder.  Since they were move to the 3rd I am sleeping on a recliner for part of the night as it is so far for me to come down at night for feedings.  I’m really surprised that I am sleeping as well as I am in the NICU since it is never quiet with babies crying and bells constantly going off.  I have been at every feeding since they started getting food the day after they were born every 3 hours 24hours a day.  It would be so much easier if I could get comfortable near them.

The kids haven’t gotten to see them since they were born which has been very hard for all of us.  At least they got to see them on their birthday.  I’m not sure if they hadn’t seen them at all that they would be taking not being able to go into the NICU as well as they are taking it.  The kids are troopers but they are fading and need their mama and their new siblings home.

<strong>December 19,2009</strong>

We are still here-although I am wondering why.  The doctors don’t think we can handle the babies feeding tubes.  After dealing with all of Melissa’s needs I’m thinking piece of cake.  I talked to a friend of the family who has been doing home health for 25 years and even she agreed when it comes to our family an NG tube would be easy.  I am looking into having home health because of the tubes.  They would have to be in the home 24 hours a day until the tubes came out hopefully in the next couple of weeks.  I am being told that home health is usually only approved for children on a vent and we would not get approved for such a minor thing.  I’m scratching my  head because I can only imagine that we are looking at about 10,000 a day to be in the NICU between both babies with a home heath care nurse being a fraction of that.  As of right now we are also cash pay clients so anything we can do to reduce that cost without sacrificing care while getting our family back together is what needs to happen.

<strong>December 18, 2009</strong>

We are still just here for feeding stuff.  They both gained again last night.  We are on the right trend.

The babies were moved to NICU 3 yesterday.  It is a lower level NICU.  They have been on lowered statis since about Sun or Mon but they kept us upstairs to make it easier for us.  Well they got busy so we were moved.  The 3rd floor NICU is much louder and there is very little privacy.  My room is still on the 4th floor so in order for me to sleep in my room and feed babies every three hours for about an hour at a time it is like getting up and walking to the end of our property through two locked doors and an elevator.  I slept in the NICU last night which is what I will continue to do until we are either rooming in or discharged.  Both rooming in and to be discharged are two things we are asking for.

<strong>December 17, 2009</strong>

I really don’t have anything new to report.  Tayla is still on the billi blanket her levels are within the normal range they just want to be extra cautious.  Tayla has had two days of weight gain and Ruben has had one day up an oz one day down 1/3 oz and one day up another oz.

At this point we are only here for feeding issues which is very typical for premiees.  They are begining to have longer nursing sessions but even with the tube feedings they are using everything they are getting.  Several people have asked me if they really need the feeding tube and the answer is yes.  They just don’t have the energy to be able to take enough anyother way to sustain themselves.

I am hopeful that they will just send us home on the tubes after we have several days of upward weight gain.  They said that they don’t normally do that but let’s face it we are not a normal family.  After dealing with all of Melissa’s issues I’m thinking an NG tube piece of cake.

Keep praying for weight gain and that we can go home very soon.