Things are looking up

After Josh's surgery yesterday he is recovering well and resting. His pain levels seem to be low and he has not needed extra doses of medicine just the drip of continuous medicine. Tomorrow he will be weaned off the drip if his pain remains tolerable.

According to the nurse his lungs no longer sound "juicy" which is a good sign that the PDA closing has helped his lungs improve. Another good sign is that the heart murmur is gone. He is currently on low levels of oxygen and the doctor's have turned down the ventilator levels. The nurses will also give him a small amount of milk again today and see how he tolerates it.

Josh's day

Josh's PDA surgery was completed this morning around 10 am and he came through with flying colors. The surgical team was able to tie off and clamp the PDA and his immediate responses look good. He is currently still under anesthesia and will remain in a private room until tomorrow.

The surgery involved making an opening under his left shoulder blade (about 2 inches) so he will be on pain medicine for the next few days. The doctors will also continue to evaluate him to see how his lungs look and the hope is to wean him off the ventilator soon. In a few days he will begin his feedings again, although starting over at small amounts, and eventually they will work him back up to larger feeding amounts and less IV fluids.

Big day for a little guy

Josh had a busy day today with not one, but two, echo-cardiograms. The echo showed that his PDA was still significant, even after a week on the ventilator. The doctors and cardiologists decided that it's time to surgically close the PDA. The surgery has been scheduled for tomorrow, Tuesday, morning and we will be down there to lend Josh our support and love and have a chat with the pediatric surgeon and his team. After his surgery we will have a Care conference with the NICU team and we hope to see some growth charts and get a debrief of how the surgery went and plot Josh's course for the next couple weeks.

The surgery itself should be rather quick but Josh will have to go under anesthesia. The surgery involves making an incision near Josh's shoulder blade and then when the PDA is in view the surgeon will physically tie it shut. By closing the PDA Josh's lungs should improve and we hope he will be off the ventilator in the near future and breathing on his own with just the help of the c-pap.

Josh is also back on an IV today after not being able to tolerate his feedings very well. For the next few days he will not receive any milk but instead will be fed solely by IV. The doctor's believe that this is also a side effect of the PDA and that the surgery should help his digestive system work properly.

Despite the excitement of the day Josh was able to get some Kangaroo time with mom and did really well out of the Isolette for an hour. He enjoyed looking around and sleeping on mom's chest.

Quick Update

This weekend had some ups and downs. Josh was taken off the ventilator on Saturday and given some steroids to help his lungs. Unfortunately it appears that he was not ready yet and on Sunday they put him back on the ventilator. This has been very frustrating for us to watch him struggle. The cause for his struggles is still unknown but they are going to do another echo on his heart today to look at the PDA. If this is the problem the next step will probably be surgery to clamp the PDA shut. Josh is also being watched closely for signs of hypothyroidism. He flagged on a state test for possibly having a thyroid problem but his TSH (Thyroid Stimulating Hormone) levels are normal so the doctors are going to consult with an endocrinologist.

Josh has had some improvements over the last few days. He has gained a little weight and is tolerating his fortified milk. They are currently adding 4 calories of vitamins, fats, minerals, etc to the breast milk which means the milk he receives is 24 calories per ounce vs. 20 calories for regular breast milk. Because he is able to tolerate these feeds his PICC line has been removed. We also found out that Josh is making his own red blood cells which was unexpected. We hope that he will continue to make red blood cells and he won't have to have a transfusion (which is common for preemies).

Thank you to everyone again for all the good wishes and prayers.

A typical day at the NICU

We have been getting a lot of questions about the NICU and particularly Josh's isolette. Josh spends the whole day in this bed with limited time outside (only about an hour for kangaroo time). We change his diaper in the isolette and the nurses and doctors do most of his care with him inside.There are armholes on either side that we open and reach through and then you have to maneuver around the cables, tubes, blankets, etc. By the time we come home changing a regular diaper should be easy!

The side of the isolette does open when needed but in general he is in complete isolation. The isolette provides heat and humidity so that he does not have to expend energy to keep his temperature consistent.

In this picture you can see the ventilator. He also has cords that monitor his body heat, his heart rate, his breath frequency, and his oxidation levels. In his right arm is his PICC line and he has a feeding tube that goes directly to his stomach. All in all there are a number of cords, gadgets and tubes which Josh loves to grab :).

Back on the Ventilator

Josh has continued to struggle to breathe on his own and after a number of significant incidents of apnea yesterday morning he was placed back on the ventilator. The hope is that the ventilator will allow him to rest and grow stronger while his lungs continue to develop and that in a few days they can once again put him back on the c-pap.

Father's Day Visit

                                                   Thanks to Mark and Cindy McGee for Josh's new quilt.


As we keep saying, "no news is good news, or at least the status quo". Josh has recently been given the nickname "Brady King of the NICU" for his continued preemie struggles. But, as the nurses say this is to be expected from a preemie his age and eventually he'll grow out of it. For now we just continue to watch him and to give him a little rub to help him remember to breathe when he forgets. He has also gotten some extra doses of caffeine and gone up on his oxygen levels slightly to help keep his breathing regular and his saturation levels high. The neo-natal nurse practitioner has assured us that most babies outgrow these Brady incidents around 34-36 weeks of gestation.

In other news we visited on father's day and Evan and Josh took a little nap together. Josh really enjoys being held for about an hour. At about the hour mark he usually gets a little stressed out from all the noise and stimulation of the NICU. This stress often coincides with larger desaturation levels or a longer recovery time after a Brady. The best place for him right now is to be in his isolette where it is quiet and less stressful. We hope that as the weeks go by he'll be able to handle longer sessions being held. Josh is also going to go off his IV soon as he is tolerating his feedings of milk really well. The nurses are increasing his feedings by 1cc every 9 hours and he is now getting 12 cc's every 3 hours. This is up dramatically from last week when he was getting just 3-4 cc's of milk every 4 hours. We hope this will help him gain some weight which in turn should help him grow stronger.

Thanks to everyone for your continued support, prayers, and kind thoughts. We have also received a number of nice gifts and will try to get some pictures up over the next week.