Saturday, August 29, 2009

Making Progress


This week Gabe has made a lot of progress!

1. He is off the CPAP and on the high flow full time (pray that he stays on the high flow, his CO2 is already creeping up).
2. He is taking more from the bottle and loving every sip.
3. The feeding tube is now going through his nose and into his stomach (when Mommy starts feeling better, they'll try feeding the more "natural" way).
4. Now Gabe has a team of nurses that will take care of him instead of new nurses everyday. This should help him since they know his quirks.

He had another eye exam on Thursday and the doctor determined that they need to do surgery. Not sure yet the date (probably within a week) or the type of surgery (either laser or an injection into the eyeball). This is a necessary measure to take to prevent our little man from being blind. We were reading that over 90% of preemies don't have a problem with the development of their eyes, but of course Gabe would....sigh.

I, Mom, have been sick and have not been able to see him since Wed. It is driving me a little crazy, but forced me to relax and take care of myself. I look at everything our little family has gone through with Gabe and see God working in it all. I am ashamed to say that I haven't always trusted God to take care of Gabe through this process, but was extremely humbled when I realized that God trusted US to take care of him. If He is willing to trust us to love this precious little baby, how foolish was I to not trust Him to take care of him! Thank you God for entrusting Gabe's care to measly Dan and I. We will not take your blessing for granted!

Sunday, August 23, 2009

Taste Therapy

Below are the stages of taste therapy as enjoyed by Gabe.


Step 1- Suck some milk off of a sponge. Yummy! Gabe was eating/sponging maybe 5-10cc's from his 45cc meal during the past month.







Step 2- Take it like a man from the bottle! Right now Gabe is sucking down 15cc twice a day out of a 60cc meal.






We think mom enjoys the taste therapy just as much as Gabe does!

In the Swing Of Things

Gabe is big enough to enjoy spending time in a swing. A special thanks to cousin Jacob for growing out of his swing and letting me borrow it!

3 Months Old

Gabe turned 3 months old on 8/21/09. Look how big he is getting! 6 pounds 11 Oz.





Here he is at 2 months.



One Month.



Wednesday, August 19, 2009

Gabe's CO2 is down today. His last number must have been a fluke. He is breathing faster today, which could wear himself out if he doesn't slow down.

Monday, August 17, 2009

Well today his CO2 number is back up again. Its hard to post positive things b/c it always seems to turn negative again.

Saturday, August 15, 2009

Gabe has been making some progress during the last 3 days on his CO2 blood level. The levels have slowly been dropping. Mom, dad and the doctor are thrilled.

Tuesday, August 11, 2009

In Need of a Miracle

It seems like the news never gets better...
Yesterday the doctor heard a heart murmur so she ordered a cardio echo to see if the pulmonary hypertension had gotten any better from the nitric oxide. The cardiologist said it is still severe and there is a lot of extra pressure on the right side of the heart. If not treated it can cause heart failure on the right side. Therefore they are upping his dosage of the medicine for this. It is a waiting game to see if it helps, and the doctors don't want to up it too much because it is still kind of an experimental drug and they don't know all of the side effects, short and long term.
We had a long talk with the doctor today about the plan. Right now we are waiting for a couple of weeks before getting another echo to see if the medicine worked for the pulmonary hypertension. If it didn't, then we may try steroids again, or possibly a tracheotomy (put back on the ventilator, but the tube will be surgically put into his trachea on throat area, can be on this anywhere from 6 months to 2 years).
As you can see things aren't good at this point. What Dan and I really need right now is lots and lots of prayer that the medicine he is on works, and he gets better or shows improvment very soon. We both are trying to keep the faith and not lose hope, but we are pretty broken down at this point. God says he won't give us more than we can handle, and I'm thinking, "how much more can we really handle!?" We just need a miracle for Gabe.

Wednesday, August 5, 2009

Gabe's PH :(

Gabe's Pulmonary Hypertension (PH) is really slowing down the progress for going home. The doctor's are starting Gabe on a second type of medication to help relax his blood pressure in his lungs.

We learned today that PH is the most severe side effect of Chronic Lung Disease. Please pray that Gabe responds to the medication and grows out of both the PH and Lung Disease. We disparately want to see Gabe make progress and are praying for a Miracle.

Gabe also gets upset with the CPAP head gear. Everytime he moves around the mask or nose prongs push on his nose. It must be uncomfortable! The doctor's are telling us that they need to focuse on the PH before working him off of the CPAP.