Tuesday, March 30, 2010

At home

Now that we are home it is going to be challenging to update as often. We are all really enjoying being together in our house. Logan is doing very well and really love his brothers. Any time they get upset he goes to them and gently tries to comfort them. Yesterday was their first visit to the pediatrician. She was very pleased with how they are growing. Nathan is now 4 lbs 13 oz and Owen is 7 lbs 3 oz. Both the boys enjoy, for the most part, bath time.Nathan enjoying his bath.Owen enjoying his bath.I tried to get some good photos of all three boys together. I love the expressions on their faces.Getting to hold 2 of my 3 boys.

Friday, March 26, 2010

This Week

We are home. We got home on Wednesday night. Everone is doing well. I will update more later. Here are some pictures I thought you would enjoy.






Friday, March 19, 2010

Art from the Heart

Last night several of my friends, composed of long time friends, new NICU friends and some NICU nurses all had a great time at Art from the Heart (a painting class at Dawson). My friend, Amy, teaches the class and very graciously gave a special class to all of my friends. Sarah Cook and I had painted this cross picture a few weeks ago and my is by the boys bed in the NICU. A few of the Moms and Nurses commented on how much they loved it, so they were able to paint their own pictures. We all had a wonderful time. Since Sarah and I had already done the cross we went with the whale picture this time. I painted mine for Logan. More pictures of the night coming soon.

Wednesday, March 17, 2010

Getting closer to going home

We are getting closer to going home!!! We are starting to have lots of appointments at the NICU. On Friday, Dr Lazono, the pulmonologist will come to see Owen and go over a plan for us on Owen's home oxygen needs and follow up with him at his office. Owen has a large indention in his pallet, either clef pallet or an indentation from his ventilator tube being in there so long. The nurse practitioner of the plastic surgeon will hopefully come look at him and talk to us about necessary follow up for him. Nathan will be scheduled for an MRI on Tuesday to look at his PVL. Originally we were not going to do an MRI but Dr. Strange thinks it could give us some good information and we would much rather we have it done on her supervision than an outpatient procedure at Children's hospital. On Monday we will receive training on the boys monitors and oxygen (for Owen) they will go home with. We are still on schedule to go home the later part of next week!!

Nathan was able to take a few short trips out of the NICU yesterday to a parenting room!!! He was able to spend that time with just Preston and I off his monitors. It was really nice and a huge step to spend a little alone time with him. He is now off his oxygen saturation monitor all of the time.

Last night we went to Babies R Us and got the boys new car seats, crib sheets, etc. It was a lot of fun. Of course as we were heading back up to the hospital, just after leaving Babies R Us, I remembered lots of other things I had wanted to get there. So, we will be making another stop or two soon.

Tuesday, March 16, 2010

My boys are getting big...

Owen has hit 6 pounds and Nathan is not far behind at 4 lbs 5 oz. They are both growing really well. They tried Owen off his oxygen yesterday but he only lasted about 5 minutes. The plan is for us to go home on oxygen. They will try him again before we leave, but we do need a plan of action since he will probably leave with it. We are speaking with Dr. Lazano on Friday to go over this plan. He will be the boys pulmonologist once we leave. He has been seeing them while they are at Brookwood too so he is very aware of their situation. Nathan is doing well on his regular breathing and has been for a long time. They are considering sending him home on oxygen if he does not start growing a little faster. He has to devote a lot of his calories to breathing, so they may help with the breathing to have his calories go towards growing. If a baby goes home on oxygen they stay on oxygn for a long time. They want them good and fat before they even try to get them off of it. We are proud of Owen's 6 pounds, but that is not good and fat for a regular 4 month baby. We are excited about going home on oxygen...because we want to go home.

Nathan saw his orthopedic surgeon again yesterday and will see him regularly. He is also getting both boys into an OT/PT practice with him at St. Vincents for regular visits. Nathan's "old hand" fell off while he was getting his bath yesterday. The remainder (wrist and palm) look really good. He took an x-ray to see what bones are left in their. He thinks he may be able to regenerate some of his joints and fingers. We have seen God do great restoration in Nathan before, so we will see what He does this time.

Logan has a big day ahead of him...he just does not know it yet. Preston's Mom, CiCi, is taking him to the Mc Wane center to meet Dora and have dinner with Diego. He will be very excited.

Preston and I are going to do some shopping for the boys in between hospital visits today. I am excited to get them going home outfits, a new crib mattress and car seats. It will be fun picking them out and it means we are one more step closer to going home!!

Saturday, March 13, 2010

Logan's fun day

Logan had a very fun day. He started out going to a birthday party for his friends, James and Austin, at the petting zoo at Oak Mountain State Park. He then had fun playing with Miss Stacy, one of the nurses in the NICU.

Friday, March 12, 2010

Busy but fun week

This week has flown by very quickly. Both Nathan and Owen are doing well. Nathan is now 4lbs 3 oz and Owen is 5lbs 9oz. They are both growing and Owen might even be mistaken for a chunky baby soon. Owen has moved to a low flow cannula and is only receiving 0.1 liters of oxygen. This is the lowest amount. He may come home on this amount, or he may be able to be totally taken off. This will be up to Owen and how he does. Owen also had another round of injections in his eyes the other day. Hopefully this will take care of the "bad blood vessels" and he will not need any additional injections. Nathan is still doing well on his breathing. The orthopedic surgeon is coming to look at his hand on Monday. Nathan's eyes are continuing to heal and it looks like he will never need the injections Owen has needed to receive. We have decided to not do an MRI on Nathan's brain. At this point doing the procedure could set him back and the benefits of having the scan do not outweigh the possible set backs. Their doctors are formulating plans for post-hospital visits with doctors, OT/PT, eye doctors, pulmonologist, etc. We will have lots of doctor's appointments to keep us busy for a while. The doctors are also formulating a plan on what final steps need to be accomplished before they can come home. We have heard, from a doctor, they are shooting for two weeks!!! Sunday marks the 4 month birthday of the boys. We have been incredibly thankful for the wonderful doctors and nurses are Brookwood that God has used to keep our boys alive and grow, but we are really looking forward to coming home!!!
We had a wonderful time with Logan on our mini vacation. We picked him up from school on Thursday and went to Jason's Deli for lunch, his favorite place. We then headed to Target and got the entire family swim suites. Then we were off to the Sheraton. Logan LOVED it and was so excited. He loved swimming (we went three times), he loved looking over the rail into the atrium, he loved riding the elevator and having his own big (double) bed to sleep in. He would hop around squealing with delight. It was awesome for us to have that time with him.

Monday, March 8, 2010

A good day

Nathan and Owen are having a good day. Both boys are eating very well today and enjoying being back together. Nathan's spell should not set him back at all. Because of Nathan's spell we realized the need for good CPR training. Before leaving the NICU we need to watch a video on CPR but we wanted more extensive training. On Wednesday night, Preston and I along with the Grandparents are all attending one of Brookwood's classes on infant CPR.



Nathan is doing better

Both boys are doing well. Nathan was able to resume feedings this afternoon around 2:30. He has had very successful feedings so he is back in bed with Owen and eating regularly. He will still receive antibiotics for three days. Preston and I are planning to sign up tomorrow for a CPR class in the near future. With these little guys we will need to be on top of our game.

Logan is doing well. He had a fun weekend playing with his cousin Evan, Uncle Brian and Aunt Jenny, DiDi and House. Today he was able to spend some time with my parents. It has been great to have family around to watch him, which he totally LOVES. Preston and I just booked a hotel for a mini vacation for the family. We are not going far because we don't want to be far away from Nathan and Owen. Thursday after we pick up Logan from school we will head to buy the family swim suits and then off to the Sheraton Downtown (a very nice hotel) for the night. We plan to let Logan do a ton of swimming, ride the glass elevator and probably eat in pizza (Logan's favorite). He will also get to sleep in a big bed with Mom and Dad and stay up to watch movies....what more could a little kid ask for?

Sunday, March 7, 2010

Never a dull moment

Nathan and Owen are growing well. Owen reached 5 pounds yesterday and Nathan is not too far behind at 3lb 15ozs. Nathan's feedings are up to 40 ml every four hours. He is doing better with 4 hour feedings because he is able to get better rest in between and not have to be woken up to eat. Nathan eats more while nursing, mostly around 70ml. Owen gets as much as he wants every 4 hours and usually packs away about 75ml. The boys have been enjoying living together in a crib. We now have the opportunity to give the boys a bath, so hopefully we will have some time this afternoon!!! It is hard juggling our time at the hospital with feeds, OT massages, baths and still not being there all the time so we have some good time with Logan.

Nathan had a bad breathing episode yesterday afternoon. He had finished eating and was just getting a small bottle with his medicine and a little milk in it. We all believed he chocked. He stopped breathing and it took several nurses and respiratory therapist to get him breathing again. When he was about 10 shades of blue they asked us to step out until they got him breathing again. They moved him out of the crib with Owen and he is now on a warmer (a step down from being able to be in the crib). They stopped his feedings last night and put him on IV fluid and did an infection work up on him. All of this is a step in the wrong direction. However, they are planning to resume feedings this morning and if he shows no sign of infection I am sure they will put him back with Owen and all in all it will not be a huge set back. Please pray that Nathan does not have an infection and that he just got a little chocked on his milk.

Wednesday, March 3, 2010

Results

Let me get right to what most of you are wanting to read. We got the results of Nathan's brain ultrasound. Everything in his brain looks about the same. The PVL is still there. Preston thought it looked a little smaller on this scan. The really good news is the PVL is not spreading and the doctors think it will not spread since it did not in this last month. Before Nathan goes home he will have an MRI that will give the neurosurgeon an accurate picture of what all we are looking at. Both Nathan and Owen's progress is going to be a journey. We are not anxious for the MRI or other test results. We spent a lot of time lifting this up to the Heavenly Father along with many of our friends and family. We know He is working things out exactly as He wants them to be. Both boys will need OT, PT and ST. We are excited to be talking to friends in those fields, getting their advice and help. We also hope to get the boys in an early intervention program for a while before we go back. The boys see an OT every day and she does exercises with them. She has said their muscle tone is very good.

Today was a big day for the boys. They were able to room in a crib together. The boys are very happy together and enjoy a little more room.