Settling In

James is settling into our family life just fine. So far he is a relatively easy baby, and hopefully he will stay this way. He gained a whopping 6 oz. his first 4 days with us. Hannah seems to like him and has started taking on the "Big Sister" role. Next week we have many appointments; one day will be a 7 hour day toting him around to all of his specialists. He will see opthamology every week until he is at least 50 weeks old (gestational); these are two hour appointments. He eats and poops well. All is good in James' world.

Aaron is still not gaining weight. Today he was 2 lb. 13 oz. He is not currently fighting anything, but the doctors think all of the work he has done fighting has attributed to his inability to gain weight. We dodged yet another bullet last week. He had an MRI and CT scan to rule out a bone infection. The Neonatologist, Infectious Disease Doctors, and Orthosurgeons all concluded he does not have a bone infection. It turns out that there is no doubt that he has Rickets. Otherwise known as hairline fractures caused by poor nutrition. He is now on full feedings and 27 calorie/ounce formula fortified breast milk (normal breast milk avg. 20 cal/ounce). We are still hoping he turns a corner. His appearance is shocking to me. I had not seen him in 5 days. He looks malnourished. At times he is very alert, looking about his issolette and smiling. He has the most beautiful smile; like his daddy. Please pray his bones do not become infected, that he puts on weight, and makes only forward progress. I hit a wall today and broke down. Obviously I am fearful he may not make it and it times it is frankly heartbreaking.

James is ready for his 11 pm feeding. Thank you for your prayers. We wouldn't be where we are without them.

One down and one to go!

James came home Saturday afteronoon. He is quite the little noise box; even while sleeping constant noise. We are doing pretty well. As usual we have help from my folks (Mom and Dad brought over brisquit - a favorite) and Cory's Aunt Marcia is in town providing all sorts of help. I can't imagine two babies being here. It will be crazy! I know the Lord will equip me to provide and I will have help from our parents.

Hannah is doing pretty well. She kissed "little man" today. She generally giggles and snuggles up by the two of us when I am holding James. There is a little jealousy, but I think it is all par for the course.

Please pray for Aaron. He had a large residual (left over food in the stomach from prior feeding) this morning, so they stopped feeding him breastmilk. We are praying his afternoon x-ray shows no gas pockets (evidence of NEC). He has not gained any weight in the past 3 weeks. Please pray his tummy will heal and that the NEC does not return. [5-21: Aaron's xray came back normal and he was able to feed again. However, he had another large residual last night. He is being watched closely, so I am confident that they are on top of anything that may appear.]

Thank you for your thoughts and prayers. I will keep you posted. I have to go eat and pump while I can!

Love,
Laura

Getting Ready to Celebrate!

Very quick one. Aaron is off the ventilator!!!! He is on the CPAP at 35% O2; I will get some pictures today. He is beginning to feed today. Please pray that the NEC does not return, or he will most likely need surgery. Please pray that the doctors would have wisedom regarding a safe rate to increase his feeds. He is starting with 1 ml. Aaron is still hoovering around 3 lbs. plus or minus an ounce or two depending on the day. Hopefully he will turn the corner and have a "normal" preemie progression.

Due to some apnea, James will not come home until Wednesday - Friday next week. He is 4 lb 4 oz. Please pray his hernia repair and cicumcision goes well (Monday or Tuesday), so that he can come home. Got to go, Hannah is fussing!

Have a nice weekend and thank you for the prayers!

Tuesday

I will be quick. I am getting ready to go to the hospital. I got some antibiotics (first time in 13 years), so I will be free to see the boys. James will likely be home in the next 7 days, so we are getting the house all ready for him. Hannah's new room is set up, now she just needs to sleep in the "big girl bed".

James is doing well. He is 5 lbs. 1oz. He is eating well and occasionally needs help pooping. He will have a car seat challenge tomorrow. The nurses place the baby in the car seat for an hour to make sure they do not have any apnea or bradycardia while riding in the car seat.

Aaron is doing pretty good. He has a raised white blood cell count, so his team is looking for infection via blood cultures and ultrasound. He weighs over 3 lbs. I don't think they have come down on his vent setting anymore. When they are sure he is stable, they may try to take him off all together and see if he can "fly" on his own without the vent but with some other o2 device. James has been visiting Aaron's issolette every other day or so, enjoy the pictures.

Friday

Aaron had laser eye surgery a couple of hours ago. Cory met with the surgeon and felt like it was the obvious and prudent choice to make to go ahead with the surgery. The surgery went well and Aaron tolerated it well. He weighs a strapping 2 lbs. 14 oz. He is through the crucial part of the NEC, but it is still impacting his system. Please pray that the NEC leaves, his system heals, and that it is gone for good! Our little guy has gone through many preemie hurdles, and I pray that this is the last one. He has been stable and cozy most of the week. He is moving quite a bit and probably hates being tied to his vent. His ventilator settings continue to come down. We are hopeful that he will turn a corner and work his way home to us. We don't anticipate him until August.

James is moving to bigger bottle feeds and is a growing boy. He weighs in at 4 lb. 12oz. He still needs some assistance lately pooping, but this is common for preemies. Hopefully he can continue to move forward and take all feedings by bottle. I hope to begin breastfeeding him this week.

We are doing ok here. We have been sick on and off. Our family cold has now taken on a cough. Some days are good, while others we feel awful. I have been laying low the last few days hoping that I am well enough to visit the NICU Sunday or Monday. We have quite a bit of rearranging to do around the house. I am confident it can all happen in the next week. Thank you for your faithfulness, you thoughts, and prayers. Oh, and thank you to whoever sent us a cute and anonymous layette gift from Adventura, Florida. The Lord is most definitely sustaining us. I am amazed at all He is doing in us, but think that in a year I will be even more amazed as I look back on this time. Have a great weekend!

The Boys

I write this post sick again! :( I have a cough today and feel pretty bad, so I am playing it safe and not going in. The boys are doing pretty well. Aaron is still on TPN, but gaining weight. Today he weighed 2 lb 12 oz. I got to hold him on Sunday. It absolutely sent me over the moon. He enjoyed our cuddle time and had high oxygen saturation without upping his requirements. He still likes my singing! The past few days that I have gone in, he has seemed very comfy. His ventilator requirements are decreasing. I imagine he will not be fed breast milk for another 3 weeks. He is past the critical part of the NEC infection for now. There will be concern for the NEC coming back once he resumes feeds. He probably have eye surgery in the next few days. The opthamologist has said that the blood vessels in his eyes are not developing properly (common in preemies). If Aaron does not have eye surgery, he has a 70% chance of being completely blind in both eyes. The laser surgery salvages the central vision in the eye most of the time. He will most likely have limited peripheral vision, but that varies patient to patient. Please pray he continues to go down on the vent settings, not show signs of NEC, and that he will not be completely blind.

Sunday evening James was moved to the Level II NICU. He is having some problems pooping on his own. Please pray that his bowels move more than they have been and that he poops without a suppository. Last I heard James was 4lb. 10oz. I have not been able to speak with his nurse today. He has progressed to 4 bottle feedings a day. He is not taking all of his bottle feedings. Hopefully this is due to his system being FULL the last few days. He was very uncomfortable yesterday and did not want to take his bottles. I did get to give my first bottle to him on Sunday. Tomorrow we may try to see if he can breastfeed. Please pray that his feeds go well and that he breastfeeds well.

Thank you for your thoughts and prayers. It has been wonderful to hold my babies and I pray they can come home soon. We have been doing well. My parents took Hannah Saturday and we had a wonderful date night, followed by hang out time with Cindy and Christian (good friends). Have a good week.

Aaron and James

A quick update. James is doing well. [Added 4-23: James is off Oxygen! He has been off for over 24 hrs. Please pray that he remains strong enough to breath completely on his own. Yesterday he weighed in at 4 lb. 2 oz. Please see his new picture to the right. He looks like my father-in-law, Den, to me in this picture. Everything is going pretty well. He may be booted out of NICU level 3 and moved to level 2 if they run short on beds. Now James needs to master bottle feeding. Please pray that he gains strength to bottle feed and can take entire feeds this way. If he is breathing on his own, weighs over 4 lbs. 4 oz., is feeding entirely on a bottle and is not having apnea or bradycardia he will be discharged. We still do not expect him until mid-May to mid-June. The sooner he is home, the better.]

Aaron was diagnosed with NEC yesterday. He has does not have a perforation in his bowel, but his x-ray was abnormal. He is not taking breast milk and is back on IV nutrition. He is being treated with a long course of antibiotics. He will not begin feeding again for a while (not sure if it is 2 weeks or a month). Please pray that he gains strength and heals. NEC can be very serious, hopefully by God's grace it will not be in his case. Thanks for checking in. [Added 4-23: Please pray that Aaron is stable enough to be held. He has never been held and I think it would be good for him.]

Love to all of you.
Laura