I'm home!

Lucas came home around 2 pm Tuesday afternoon. The day was a blur unpacking, feeding, organizing, feeding, etc. We are super excited to have him finally here!. He mostly sleeps through the night but, we still feed him every 3 hours. At night he is fed through the button mostly. He's had some trouble with refluxing during his feeds and they almost kept him another day because he lost weight two days in a row. We agreed to two home health visits a week for two Weeks and see the pediatrician on Friday to get him home. The doggies will love that!So far, I'm both tired and yet too excited to sleep. The latest concern besides his weight is related to the first bone study. He has another scheduled in June and an appointment with the geneticist in July. They're concerned he may have a mild form of dwarfism called *rhizomelia which results in the shortening of or lack of symmetry between the limbs. We will find out more with time this summer.

Lucas's g button surgery is tomorrow. He will hopefully be home by May 1st. We have a lot of training to get through, but im cautiously optimistic. I cant wait to show him his room! Its been waiting a long time for him. Even though he's coming home, he will still need some isolation. We don't want him getting sick and editing up back in the hospital. He can still get overstimulated so caution is necessary. We will continue following the rule of just a few people at a time. For those who smoke, we have to take additional precautions due to Lucas's lung disease. We've verified he's smoke sensitive. This includes hand washing but also keeping him away from clothing that smells like smoke. If you smoke, plan to visit and hold the baby please check with us on precautions needed.

9 pounds

Lucas officially weighs 9 pounds! His head curcumference is 14 1/2 inches and length is 19 inches. He is still at children's hospital and did not get surgery. He has had many tests to determine what factors are playing into his ability to eat or not eat. The staff here ended up adding rice cereal to his breast milk every 15 ml and feeding him in doses. this has enabled Lucas to swallow a bit better and he's had more than three full successful feedings in the last few days. He is still on pathway x4 but since he is showing progress he will continue working on eating here. Surgery for the feeding tube is off the radar for now. A bone study they did showed that Lucas's upper bones in his limbs are shorter than they should be compared to the lower ones and there is a length difference between the right and left sides. After a second opinion, the doctors decided that it is not a significant enough issue to worry about now because they cannot determine if its an issue of prematurity or something else. He will be reevaluated in a few months. So, now we continue growing and working on feeds. He is meeting all the markers for a 5 week old development wise. For all his development milestones we will use his corrected age (due date of March 7) until he is two or three.

April fools and happy Easter

One thing you never quite get used to is the uncertainty. Lucas did not have surgery Tuesday and will not be having surgery this week most likely. He is being evaluated by the staff here. He had two big tests Monday and Tuesday to check that his stomach and parts are all where they should be and to see how he is eating. They confirmed what we suspected which is that he is aspirating his milk when he eats. Right now they have started putting rice cereal with his milk to thicken it to try to help him eat better. It seemed to help initially but now he's back to just taking a 10-20 ml by mouth. Because its Easter weekend, his surgery discussions will take place next week but we had our first consult with the surgical rep today and all agree that unless Lucas miraculously improves his eating over the next few days, he will still need the g button. Its very likely they'll also do the surgery to shrink the opening from the stomach to the esophagus to help reduce the likelihood of aspiration and spitting up. Its been an emotional and trying week, more than I expected. we are ready for our son to be home and continue to hope for the best. He did come off oxygen about an hour after he arrived at Childrens and has done very well off it. we will post more when we know more. Happy Easter from Lucas and family. Thanks Donna for the card!

surgery and other updates

*correction: Lucas's surgery has been postponed pending testing, probably til Friday.

Lucas is scheduled to be transferred to Children's hospital tomorrow. He will have surgery on Tuesday to put a g-button into his stomach so that he can come home within 1 to 2 weeks. The g button is a port that goes straight into the stomach to which a tube attaches and allows us to feed him while he's sleeping and when he won't eat. This marks a turning point towards bringing him home and to his care. we will have to learn how to feed him a new way and also things like the CPR and how to read the monitor he will come home on. He will most likely remain at Children's until he comes home. Updates today are that he weighs 8 pounds 1.4 ounces, he is 19.5 inches long and his head is 14 and 1/4 inches in circumference. He's grown out of all his preemie outfits and almost his newborn clothes.

Important things to remember for us are that soon when he comes home, it does not mean he is not fragile. Because he is a micro-preemie, he will be at a higher risk for infections, and thus cannot be around a large population of people or kids. He should have limited contact with people who have colds. Kisses on his face and hands are no nos for all but mommy and daddy at this point, but you can give kisses on his feet if you cannot resist (trust me its hard). Hand washing is critical and we will have masks as well as hand sanitizer at home. He will be coming home on oxygen as well. This means conventional daycare is not an option. I will be doing all I can to adjust my schedule to keep him at home until hopefully he comes off the oxygen. We have a lot of doctors visits and developmental visits in our future but we're very close to bringing him home!

There's more growing than just flowers this spring!

Lucas is getting big! He weighs 7lbs 6 oz. Head circumference is 14 '' and he is 18.25 '' long! He has decided this week that he is going through a fussy phase. He wants to be held all the time and fights taking his bottle. His feeding progress has gone back a few steps from a few Weeks ago. Because of this and because he is now almost 44 Weeks gestational age, we will begin discussions about getting a "g button" surgically placed. This is a feeding tube placed directly into the intestine for the feedings he won't take by mouth. He will likely come home on oxygen too. So, we're having to consider different arrangements initially for his care when he comes home including needing oxygen tank set up, in home nurse visits or respite care services. These are possibilities, but nothing is certain right now. We know he's growing and becoming more aware each day. He will be getting his 4 month immunizations some time this week and probably also getting a special eye exam called a fundoscopy exam.

42 Weeks gestation, 17 weeks old

Length: 17 1/2'' head circumference: 14'' weight 7lbs 3Oz Lucas took two full bottles for mommy and daddy yesterday. He is doing better now that they increased his oxygen to 40%. He is back on diuretics to help him breathe easier. He is still growing. There's talk of him coming home on oxygen and having a feeding tube put in his tummy so he can get his feedings at home if he's too tired or unable to eat. I try to explain it like this: eating for a baby is like running a mile, eating for Lucas is like running a mile while smoking a cigarette.