January 10

Well, poor little Carson had to deal with less than adequate amounts of milk the past 24 hours... they swithced to a G-button (a lower profile access) yesterday but since that time milk had been leaking (well gushing at times) with every feeding. Today, they made the decision to switch back to a G-tube until he gets a little bigger and the site heals better. Otherwise, no other changes were made today. Hopefully tomorrow we can begin the weaning process again after a blood gas is drawn. Big news for me (and a sigh of relief), I changed out his tracheostomy tube today without any hiccups or feeling like I was going to pass out and also gave him a Lovenox injection (as we will likely be on this for up to 6 months). Preston and I are sure learning alot through all of this!

Kellen continues to do well, he was pretty sleepy today which I would guess is due to his 'not so fun shots' yesterday and the Tylenol he had after a low-grade fever last night. Everyone be praying he isn't up ALL night : )

doc visit for Kellen

Kellen survived his 2-month shots. Poor little fella screamed at the top of his lungs according to Liz and Preston, but quickly decided he was feeling better. He was 8 lbs. 11 oz and 20.5 inches long. He is growing like a champ. He doesn't have to see the doctor again until 4 months (for more shots... no wonder kids don't like doctors). 

Carson got his button today, which makes feeding him through his G-tube a lot easier. He did well. He took 60 mL from his bottle, so that was fantastic and almost a full feeding. They did not wean on the ventilator. He had a fever last night, so they checked labs and blood gases and he was up on his CO2 to 59. He didn't have any changes indicating infection and his fever went away, but they are not going to change his ventilator today. Keep praying for him...we need good progress in the next couple weeks on weaning his ventilator.

We are so thankful that you are joining with us in prayer!

Posted by Sarah

Carson had a good blood gas this morning. We thought they might wean, but they are going to wait to make any more changes until tomorrow. They don't want to take too much blood from Carson getting blood gases all the time, so they will wait and do the blood gas in two days and wean tomorrow so we can check to see how he does with changes tomorrow. 

I forgot to mention, but he got switched to all breast milk rather than 1/2 formula and 1/2 breast milk about a week ago and is doing well. Other than that, all is the same. 

Kellen has his appt. tomorrow and gets his 2-month shots... Bummer! But he will be brave and handle it like a champ. We will see what he weighs in at tomorrow... the race is on between Carson and Kellen to see who is the heavyweight this time!

Please continue to be in prayer for Carson's lungs...thank you so, so much!!!

Posted by Sarah

a day in the NICU

Carson's ventilator was moved to a rate of 12 and the PEEP plus pressure was reduced from 18 to 17. Big vent changes in comparison to what we have done! They are getting a gas tomorrow am, so we will see how he does. We think he is going to do fantastic. His weight is 8 lbs 3.8 ozs so he is really growing. He continues to work on his two bottles a day and smiling nice and big for mommy and daddy. :)

Kellen is doing great. He has his appointment on Monday to see how much he weighs and get the dreaded shots at 2 months! No fun. Two month birthday tomorrow!!! We are so thankful for all the progress in the last two months.

Posted by Sarah

Carson busy thinking about how he can get
more of those yummy bottles

Kellen doing his best impression of a tiny ANGEL

Care Conference update

The care conference was very positive in our opinion. Dr. Yang does not think Carson will require a ventilator at home and will be able to wean off before leaving. Hip hip hooray : ) They are thinking several weeks to get off the ventilator, then a few weeks on CPAP and try a trial on the trach collar. But Dr. Yang does think he probably will need a trach collar at home. We are going to keep on praying for a miracle and no need for ventilator or trach. The neonatologist feels differently though and thinks Carson will need a ventilator. 

Today, they were able to wean his rate on his ventilator to 16. The plan is to get to 12 on the rate and then start on the pressures. We feel more confident with Dr. Yang's assessment b/c he is the surgeon that removed the mass and has been there the whole time. Brain, heart, kidneys, and intestines look wonderful. He still has a clot in his liver which they are monitoring. He will probably need to be on Lovenox for 6 months to prevent any worsening of the clot in his liver to be on the safe side. 

They do think he will outgrow all his lung problems by the time he gets to school age, but we just have to wait to see. So all in all we are very very happy. We feel all the doctors and nurses are on the same page. We just need to keep praying for miracles for his lungs! 

Thank you so much for your prayers! We are beyond grateful for all the truly caring, loving people that have blessed us and all our families along this journey.

Care Conference is Friday...please pray!

The doctors weaned Carson's rate to 20 on his ventilator today. They are going to wean to 15 on the rate before weaning any of the pressures. In another bit of good news, his liver enzymes are steadily dropping which is excellent. It may be because the clot is resolving (praise Jesus) or something else, but we are going to say the clot is resolving. The doctors are not checking another ultrasound of his liver until late January, so we will just have to wait to find out. He has done well with his two bottles and we are still just continuing to pray believing miracles will happen in his precious lungs. 

The care conference is at 11 AM tomorrow (CST) so let's all pray together that the doctors will give him a chance!

Posted by Sarah

Today has been somewhat discouraging for Preston and Elizabeth. They have been so faithful through this journey, and I cannot say how proud I am of them. Please be praying for continued strength and peace for them, because it has been a challenging week. 

The neonatologist told them today that he felt Carson would go home on a ventilator and would continue to require his tracheostomy. Our prayer has always been that Carson could go home without even a tracheostomy. However, none of us expected for him to have to go home on a ventilator. It will be incredibly limiting to have a ventilator. This was really difficult news to hear for all of us. The doctor did not say he guaranteed a ventilator and trach, but felt Carson would have them. We are praying Carson can prove the physicians wrong again and God would continue to work miracles in this situation. 

Carson did take two bottles today and did well with them. His rate was weaned to 22 on his ventilator but they still have not weaned pressures. Sometime today, Dr. Yang and the neonatologists are going to talk about what to wean. 

And finally, they have moved the care conference up to Friday, so please be praying for this important meeting between the doctors, nurses, and Liz and Preston. 

Kellen continues to do very well.  

Posted by Sarah