Josh's first days at home

Welcome Home Josh

Josh was discharged yesterday afternoon from the hospital and is adjusting well to life at home. It's a little different environment with less light, noise, and people so it will take him a little while to get settled but so far so good. We are also all adjusting to having him home and learning his sleeping/eating patterns. Right now he is waking up every 2-3 hours and then eating smaller amounts. We are shooting for a goal of 270 mls every 12 hours. Caleigh (our cat) is cautious around Josh but mostly treats him as a non-entity.

Today Josh went to the pediatrician office and got a clean bill of health. He will continue to see the pediatrician once a week for the next month. At the end of October we will take Josh to see the cardiologist in Denver to look more into his ASD vs. PFO.

Trying new things

Josh is still a "feeder/grower" and working on taking full feeds and we are trying new things to get him home soon. Because he is full-term they are now letting him sleep up to four hours at a time and then hoping he'll eat more when he is awake. Unfortunately he hasn't taken extra amounts yet to meet the prescribed volume, but we are hoping that if we try this for a few days he'll start to take larger volumes when he is awake.

Tonight we are trying what they call "rooming in" where Josh will be hooked to a portable monitor and will stay with us in the family room where we will care for him overnight. We want to see if Josh will eat as well for us overnight as he eats for the nurses.  The nurses will still prepare his milk for us and be available for an emergency but in general we will be on our own.

Patience Required

Now is the time when our patience is truly being tested as we have to let Josh proceed at his own pace. It has been a day by day challenge to get Josh to nipple his feeds and some days he does really well (90%) and then the next day he'll be tired and do less (50%). It is a day by day process but we know that he will get there soon.

Josh has recently been switched to a new formula, Good Start Nourish, which is better nutritionally for him than the Alimentum. We are still monitoring him carefully to make sure that he doesn't have any bloody stools but it appears that he is tolerating this new formula. We are sticking with the plan of alternating bottles of plain breast milk and Nourish and it is helping him gain weight and get the right nutrients while still getting the benefits of breast milk.

In good news Josh now weighs 8 pounds and today he passed his hearing test.

Micro-management

Hi everyone,

It was a tough weekend while we tried to puzzle out Josh's eating habits.  As you may or may not know, he's been struggling with various types of milk fortifications/formulas and one of the main things we need him to do to come home is take all his feedings without the need for a gavage (nose feeding tube).  Sunday we met with the staff (doctor, NNP, nurse and OT/PT) in a "Care Conference" to talk about our options and outline a more consistent feeding plan for the next few days.  We were fortunate also to get more of the NNP's time to watch us feed Josh and witness first hand the issues we (and many of the nurses) have experienced.  This of course led to immediate changes to our "consistent" plan, but changes that Becky and I think will help Josh handle both breast milk and the Alimentum formula.  After setting the new plan in motion yesterday evening, we're pleased to hear this morning that Josh has already taken four full feedings and one partial which is a real step in the right direction.  It may be too soon to celebrate, but we have to take little wins when we can.

Side note: I'm sure parents of newborns go home for the first time and never get this kind of practice with feeding a baby, so while it is frustrating to watch him struggle at the hospital, we have to look at the positive in that we're getting a lot of support and guidance that most parents would not necessarily receive from a trained staff.

On another bright note, Sue Cooch visited this weekend and got to meet Josh in person.  Sue is one of Josh's loyal blog readers and a long time family friend.  We've been friends ever since she fed me individual curds of cottage cheese as a baby.  Thanks for taking us out to dinner on Saturday between feedings!

I also noticed that we have over 10,000 page views, so I will ask that my mom please stop refreshing the page every two seconds :)

Anyways, thanks everyone for sticking with us and thanks for all the love and support.  Here's a recent photo that I like:


-Evan

100 Days Old

Today Josh is 100 days old or just over 14 weeks. His due date is this upcoming Saturday which is hard to wrap our minds around. He is still a "feeder and grower" and is working on taking full feeds from a bottle. He is tolerating the elecare, that is used to fortify his milk, and is now getting 24 calorie milk. Today he was switched to a multivitamin and an extra dose of iron which is what he will get when he goes home. He is still having some incidents of bradycardia which will have to stop before they will let him go home. Yesterday he had a tough day, but he seems to have recovered well, when he was circumcised. All in all he is doing well, and we are hopefully approaching the time when he will go home.

Is Time Slowing down?

As each day passes it seems to go slower. Maybe this is because we are anxious to have Josh at home and tired of driving to Denver every day. We are nearing day 100, and his due date, with no indication yet of when Josh will be ready to come home. Today they will try to fortify his milk again with a hypoallergenic formula called Elecare. Although he is growing on plain breast milk he needs the extra fortification because he missed out on a lot of essential vitamins and minerals that he would have gotten in utero. Other than this there are no real changes. He still is not able to take a full bottle every three hours but he is getting better. He weighs 7 lbs 2 ozs and has graduated to size 1 diapers. All of his growth curves are following the 50th percentile line which is right where we want them to be.

Josh is resigned to practicing "tummy time"

Three Months Old

Josh is now three months old or 38 weeks gestation. We hoped he would reach the 7 lb mark but he fell just shy coming in at 6 lbs 15.8 oz :). To make sure that his weight gain continues the doctors have upped the volume of milk he receives at each feeding. The other option would be to fortify his milk with a hypoallergenic formula to give him extra calories. Josh is still under close watch to make sure the blood in his stool does not return but we hope he is past this and moving forward. Yesterday he took four full bottles and three partial bottles before sleeping through the one feeding that we were there for. He continues to have a few brady's a day, sometimes associated with reflux and sometimes not associated with reflux. The goal is to still have him ready to go home by his due date, September 15th, but we will go with whatever schedule Josh chooses.

More ups and downs

Ups- Josh is no longer on oxygen and has been breathing room air. He is closing in on 7 lbs and almost three months old.


Downs- Josh has had more bloody stools even on plain breastmilk. Right now they at continuing full feeds and watching him. We hope it will pass and that he doesn't have an infection or a milk allergy. If the bloody stools continue they may try him on a hypoallergenic formula. Josh has also had increased Brady's some of which have required vigorous stimulation to get his heart rate back up.